Come What May

Lessons from the Blizzard: Pressing on Through the Storm

2012-01-18T13:05:00.001-05:00

A few days ago I was driving to Denver for Jonathan's sleep study appointment. When I left town, the skies were clear and it had been a somewhat warm day. The sun had set and darkness settled in its place. Flurries began as I left town. The forecast called for zero accumulation and slight snow showers. I don't drive in snow. I am quite the chicken..unless I am angry...but that is a whole different story. This appointment had just opened up that afternoon and it is nearly impossible to actually have an appointment on a day when Jon is not sick, a requirement for the tests being done. If I had any idea that the weather men would be wrong, I would have never ventured out. Little did I know that the Lord had some huge life lessons in store for me on this cold, snowy, dark night. I guess I should expect Him to respond when I ask questions like...How do you grow your faith????
In between Monument and Castle Rock, I encountered a blizzard. For those of you who drive confidently through this white fluffly stuff, probably no big deal for you. But for me, it was the scariest night I have ever encountered while driving. When my car spun out on an on ramp and headed to the edge of a steep enbankment, all I could think was either God stops this car or Jon and I are going to die. Obviously, I am here to write about it...the car stopped two feet from the edge. The sweet reminder that he who carries me in his hands is alive and active in my life. What follows are the few lessons my adventure left me with...

Sometimes going back is scarier than going forward.
The sleep study tech called me when we were about an hour late for our appointment. She asked if I wanted to turn around and reschedule for a later day. The problem was that I had already driven through what was probably the worst of the storm. I had no idea what was ahead but I knew what was behind. I didn't want to go back through it. This reminded me of where I am in life right now. Life has been hard. Sometimes I feel stuck...I don't like where I am right now. I don't want to go backward. Been there, done that. Didn't like it one bit. But I don't know that I want to go forward either. I don't know what lies ahead. I don't know how long I have to keep going before the sky clears. Fears overwhelm. Yet, I keep going because there is no other choice...as much as I feel incapable of being a good mom, good wife, good friend, good christian...the only choice is to keep going forward and hope that the sky clears soon.

Its a good idea to know who you are following. Sometimes you just can't see anything except the one directly in front of you.
I found myself following behind a semi truck. Probably faulty thinking but I figured if I stayed behind the big guy, I might have some protection, a wider path to follow, and less of a chance of the "big guy" running me over. Following the truck probably created a bigger blizzard than there would have been if I wasn't right behind him but there was security there. Kind of like following Jesus. Sometimes he leads us through some scary situations. Yet, if we know who we are following we can trust that he will make a way in front of us. He will tell us which way we need to go. Just like the grooves on the side of the highway that alerted me that I was heading off the road, so the Lord will alert us when we are veering off the right path. We just have to listen. This situation reminded me of this verse in Isaiah 30:21. It says, "Your ears shall hear a word behind you, saying, “ This is the way, walk in it,” Whenever you turn to the right hand Or whenever you turn to the left." He promises his protection and his blessing if we will just stay behind him and follow where he leads, even if it outwardly gets messy and a little bit scary.

Sometimes you are rescued from the storm and sometimes love tells you to keep going.
When I called my husband and told him I was driving through a blizzard and couldn't even see the road, I told him I should get off the highway and he should come get me. He told me to keep going. What??? Really??? I wanted to ask him if he heard what I said. He told me that it should clear in a few miles. I was just in that infamous Monument Hill area where visibility is swallowed up by a white mass of fluffy stuff. It doesn't always feel like love when we aren't rescued from our pain, fear, or difficult situation, does it? It kind of goes against everything we believe love is. Yet, its in those moments that love doesn't rescue because of the greater good that is going to come out of the experience. Matt Hammit, lead singer for Sanctus Real, reveals this in his song "This is Grace." Matt says, " The reason for our suffering is to help us realize that in sickness and in death we are helpless without Christ." I don't know about you but I continually struggle and need to be reminded that I am helpless without Christ. Storms have a way of reminding me how desperately I need Him. And how little I truly trust him.
This particular snow storm was like the lesson sounding out loudly across the mountainside. I sensed the Lord taking me deeper and asking me do you really believe that I love you? Do you really trust me to do what is best? Do you trust me to make you into the person I want you to be? The only response that seems right in this moment is ..."If you really think its ok, I will keep going."

Sometimes we quit too early.
Sure enough as soon as I passed through Castle Rock and entered the outskirts of Denver, the storm cleared. The ground was simply wet. I could see again. I was glad I had pressed through. I hadn't arrived yet to my destination and there were unseen dangers ahead. But I had made it this far and faced incredible fears at the same time. This lesson can obviously be applied to so many areas of life. Marriage, ministry, friendship, change. The list goes on and on. I wonder sometimes how many blessings and growth opportunites I missed out on because I quit too early.

Just because others are upside down or spinning out of control doesn't necessarily mean you will be too.
Driving down the road towards my destination, the roads became icy and snow packed again. We passed five accidents, several of which had cars upside down on the side of the road. This was not the most effective way to boost my confidence and trust that I would arrive safely. How often does this happen in life? We get distracted and discouraged as we focus on what's going on around us instead of the One we are following. This reminds me of the story of Peter walking on the water. Matthew 14:28-30 tells us how Peter got out of the boat and started walking on the water to Jesus. It says Peter was fine until he looked at the waves and the wind around him. Then he started to sink. He cried out to the Lord who came to his rescue...

Sometimes you DO spin out of control but you will get back on the road.
In the dark, I totally missed our exit. I drove 20 miles past my exit before I realized I had gone too far. Ever have this happen in your own life? I do. Often. Probably too often. The important thing is to turn around when you realize it. If you are like me though, sometimes the turning around makes you dizzy. You realize you have made a mess of things and it feels like you might not be able to ever make it right. The world starts spinning so fast you can't even find which way is the right way. In that moment, we have only one option. To cry out to the Lord. So many times in desperation I have cried out to Him, knowing if he doesn't rescue me and turn me back around I will destroy myself. Everytime I try to be and do on my own, I end up spinning. One day I will realize that only he can make me who he wants me to be. He promises to do what he promises. 1 Thessalonians 5:24 reminds me of this truth. "He who calls you is faithful."
Turning around proved to be even scarier than driving through the storm. My car spun towards the embankment and I had no choice but to trust. Moments later, I was turned right direction and heading towards my goal. Sometimes we get too used to life in the wrong direction. Turning around and doing it right seems harder and scarier than staying in the path of destruction. In those moments I am kind of grateful the Lord loves me enough to allow my world to start spinning until I am ready for him to turn me around.

Lastly, the sun will come out tomorrow.
Driving home the next morning the landscape was completely different. It was amazing how less scarier the world looked in the daylight. Two lessons came from this realization. First, in the midst of desperation and hopelessness, hold on until tomorrow. Psalm 30:5 gives this promise. "Weeping may endure for a night, But joy comes in the morning." Second, come close to the light. It chases away the darkness. The only way to see things clearly is to find refuge in the light of Jesus. Psalm 57:1 says "For my soul trusts in You; And in the shadow of Your wings I will make my refuge, Until these calamities have passed by."

Absence makes the heart grow fonder...

2012-01-18T10:43:00.000-05:00

I must say I have missed blogging. The past year has been full of depth that just can't be summed up in Facebook status updates. Sometimes a moment is all you have. Sometimes you just would rather pretend life is not really happening..thus the lack of posts. I have learned though that so many sweet reminders of God's faithfulness and love can be lost if I don't record them. I may not feel as though I have anything to offer here...but I know he has done many things worthy of my telling.

2011-01-17T17:57:00.000-05:00

Hopeful...
I took Jonathan to an appointment today with an Immunologist in Denver. This doctor was recommended by a family that our new pediatrician has taken care of for years. He has been instrumental in providing the children in that family a life with tremondous relief from chronic sinus infections. I was so pleased with this doctor.
We repeated allergy testing just to see if there was any chance that there were allergies that could be aggravating his situation. The good news that he no longer test positive to any of the allergies ( those must have been some good allergy shots that Dr. P made him in Knoxville!). The next step is to begin the process of testing his immune system. Dr. Voltz believes that he definietly has some thing going on with his immune system. Most of his immune type labs have not been repeated since 2005. The doctor was kind of shocked by this. I am not shocked at all...for the past several years I have just been put off and told to deal with it.
Dealing with it just doesn't work...not when your child is so sick and then becomes so psychiatrically unstable that he is begging you for a knife so he can cut his nose off. Or when the infection has lasted so long that he is not able to hold his head straight, walk steadily or speak without slurring his speech. Its so easy to say "I don't know" or "It's just how it is" when you don't have to live with him or watch him struggle twenty four hours a day!
So...we are drawing blood tomorrow for 17 different labs...ranging from basic CBC and CMP levels to vitamin levels and all the immunology levels. These labs will take about two to three weeks to get back. I am anxious to see what they say. I am hopeful that they will give us new insight on what to do to help Jonathan feel better. Thank you for praying for us so faithfully.

2011-01-11T16:47:00.000-05:00

The Balancing Act...

This is what I woke up to this morning. This is game we call " To Worry, Not to Worry". We were supposed to have an MRI yesterday but because of the snow we had to cancel it. It will be three weeks before we can get another scan done. A lot can happen in three weeks. The hardest part of this is how much things change sometimes right in front of our eyes. Jon has been struggling since the end of November. About a week ago things started to concern me..mostly his eyes. So finally I emailed the dr and they agreed to do a scan. Of course as soon as I call then he does a turn around and seems ok (but the eyes are still funky). I even took him to the pediatrician who remarked at how he doesn't seem like himself...but no one seems overly concerned. So maybe I am just a crazy mom. Maybe I see too much, maybe I am too particular...so I convince myself nothing is really going on (and really..there probably isn't). I convince myself that its ok that the MRI is three weeks away. I tell myself and my friends that if something is wrong it will still be wrong in 3 weeks and I move on...until I wake up to this this morning. I know that if I showed up at the hospital with Jon looking like this that would not only scan him today they would probably admit him. Problem is that if I actually call and take him in he will be fine by the time I get there and they will pass it off as this is just how it is with hypothalmic injury...
I get the whole hypothalmus issue. Really I do. I know there are up days and down days. I have lived through enough raging to understand how his body doesn't work the way ours does. I have watched as my child has literally turned purple right in front of my eyes and then just as quickly returned to a normal of shade. I get it. But I wish someone could explain to me what to do with the way my heart feels and how to not hold my breath when I wake to this every morning and I know something is wrong and the balancing act begins...

2011-01-03T19:22:00.002-05:00

I was listening to songs on New Years day and wondering what song could be a theme song for this new year for me. This song came on and immediately I knew it was the one... the single line " Jesus, keep my heart alive," is my prayer for 2011. That is the desperate plea ringing out from my heart.
The last half of 2010 was rough. Really rough. Rough in ways that I can't share. So many things happened that left me emotionally shaken and questioning everything I thought was true. When you are hurt deeply, its hard to keep your heart alive. Its hard to keep pressing on. It is so much easier to shut down and become numb.
Thankfully, the Lord went before me and prepared the way even in the midst of so much pain. I am so thankful for two people in particular who God gave me during this time when it felt like I was loosing everything and everyone that were important to me. One person has reminded me daily that healthy, mutually edifying relationships can exist...I am so thankful that when many others forgot the song my heart needed to hear that this person sang that song every morning and every night for as long as it took. The other person has become the person to walk through the very deep things that I needed to walk through, lovingly and graciously willing to get messy with me. She wasn't afraid to step into the mud puddle I had found myself in and pull me out. Her words are straight from the word of God and are a never ending challenge to press on and not give up hope.
With 2010 gone and 2011 waiting to be lived... I am choosing to forget what lies behind and press forward...praying as I walk and things getting messy...Jesus, keep my heart alive.

2010-06-16T14:55:00.002-05:00

The girls that I babysit and I are on a sewing kick this week while my kids are all at camp. I found this contest to enter from Keeper of the Home for a $100 gift certificate to purchase material or patterns from Marie Madeline Studio. Visit their site so you can enter too! http://www.keeperofthehome.org/2010/06/1000th-post-party-giveaway-marie-madeline-studio-fabric-and-patterns.html

2010-06-01T12:24:00.004-05:00

Reading through some old journals this morning, I came across the lyrics of a song that used to minister to me. I thought the words kind of spoke to the way I have been feeling this week.

Learning To Trust In You

That's why I am learning to trust in you

In Everything I do

Learning to trust in you

Cause I know in my heart that you're true

But sometimes its so hard to do

Father, little children must grow up

and to grow we've got to learn to trust

and to trust we've got to cling to you

And when you tell me you will hold me close

Its the very thing I want the most

but its the very hardest thing to do

I've got this pain inside me

It speaks to me loud and clear

When there's so much to gain theres always so much to lose

Whatever I lost, I'll find in you.

2010-05-18T23:19:00.002-05:00

Exciting Things are Happening!!!

The past few weeks have been packed full. The exciting thing is that they have been filled up with time doing something I love so much. God has given me the desire of my heart and has granted a part of one of my dreams to me. Recently, the Lord has brought Shawn and I together with friends, Jeremy and Natalee, to create a photography business called Only You Photography.

Jeremy already had the name, the studio, and the beginnings of a successful business. I had the desire and the passion but needed a business partner. We have all been in awe as we have watched the Lord bring all the details together. Jeremy and I have the same passion and vision. We both have a heart to glorify God in our business. We long to be able to use photography and a portion of our profits to minister to others in the various ways God has placed on our hearts.

Tonight, after many nights of working until 2am, we finally got to announce our company and the web page. I am so excited to see it official!!! If you are on facebook, we would love for you to join our Only You Photography fan page. Please visit us at Only You Photography for more examples of our work. If you live in the Colorado Springs area we would love the opportunity to serve you.

2010-05-06T19:03:00.002-05:00

Its been a rough week. Jon is raging again almost daily. No matter how strong I am, no matter how much I prepare for these episodes they still manage to wear me down. After a few days, I feel very fragile. It leaves me often questioning and wondering why.Honestly, it leaves me longing for a different life.

It wouldn't be so bad if it was just Jon and I. But there are many other lives involved. Many other hearts that are also worn down and wounded. As the sadness descends and settles into my very bones, the heavy weight of how this life affects everyone else threatens to suffocate me. I know that God is in control, I know that he is working even this out for good. But sometimes knowing it is barely enough to carry me through to the next moment. Sometimes the daily part of dealing with him and his illness makes it nearly impossible to deal with anything else...like making meals, cleaning, attending to the many needs of my other children.

The hope that still remains is this...this cycle will not last forever. The wounds oozing in my heart will eventually heal. The day is coming when the Lover of my Soul will come and carry me away forever from this painful world. In that moment he will wipe away my tears. He will make this all worth it. That is the one thing I am holding onto...soon and very soon He is coming.

2010-04-17T09:07:00.001-05:00

Author: Mrs. Charles E. Cowman
Source: Streams in the Desert
Scripture Reference: Job 12:9

Diamond in the Rough

"The hand of the Lord hath wrought this" (Job 12:9).

Several years ago there was found in an African mine the most magnificent diamond in the world's history. It was presented to the King of England to blaze in his crown of state. The King sent it to Amsterdam to be cut. It was put into the hands of an expert lapidary. And what do you suppose he did with it?

He took the gem of priceless value, and cut a notch in it. Then he struck it a hard blow with his instrument, and lo! the superb jewel lay in his hand cleft in twain. What recklessness I what wastefulness! what criminal carelessness!

Not so. For days and weeks that blow had been studied and planned. Drawings and models had been made of the gem. Its quality, its defects, its lines of cleavage had all been studied with minutest care. The man to whom it was committed was one of the most skillful lapidaries in the world.

Do you say that blow was a mistake? Nay. It was the climax of the lapidary's skill. When he struck that blow, he did the one thing which would bring that gem to its most perfect shapeliness, radiance, and jewelled splendor. That blow which seemed to ruin the superb precious stone was, in fact, its perfect redemption. For, from those two halves were wrought the two magnificent gems which the skilled eye of the lapidary saw hidden in the rough, uncut stone as it came from the mine.

So, sometimes, God lets a stinging blow fall upon your life. The blood spurts. The nerves wince. The soul cries out in agony. The blow seems to you an apalling mistake. But it is not, for you are the most priceless jewel in the world to God. And He is the most skilled lapidary in the universe.

Some day you are to blaze in the diadem of the King. As you lie in His hand now He knows just how to deal with you. Not a blow will be permitted to fall upon your shrinking soul but that the love of God permits it, and works out from its depths, blessing and spiritual enrichment unseen, and unthought of by you. --J. H. McC.

In one of George MacDonald's books occurs this fragment of conversation: "I wonder why God made me," said Mrs. Faber bitterly. "I'm sure I don't know what was the use of making me!"

"Perhaps not much yet," said Dorothy, "but then He hasn't done with you yet. He is making you now, and you are quarrelling with the process."

If men would but believe that they are in process of creation, and consent to be made--let the Maker handle them as the potter the clay, yielding themselves in resplendent motion and submissive, hopeful action with the turning of His wheel--they would ere long find themselves able to welcome every pressure of that hand on them, even when it was felt in pain; and sometimes not only to believe but to recognize the Divine end in view, the bringing of a son unto glory.

"Not a single shaft can hit,
Till the God of love sees fit."

2010-04-08T23:52:00.003-05:00

I guess I should go back and read through my own posts....how quickly my heart and head seem to forget the truths the Lord has spoken over my life. In a matter of moments,life seems to crumble and the all the things I dread most come to past. At the end of the day, I am left sitting here wondering where I lost my focus. Wondering how to climb back out. Wondering how I am going to plant my feet firmly on the rock and not run as fast as I can to the nearest escape.

Someday's I hate feeling vulnerable. I hate the fear that accompanies intimacy and authenticity. But it's inevitable. Especially when you want to obey the Lord. Especially when you want to be used by him. So the walls must come down. And you must get close to people. And that takes incredible risk.

Fear is the greatest weapon that seems to come against me during these times that require honesty and openness in relationships. I am so afraid of stupid things. But those stupid things hurt! Things like rejection, disapproval, failure. If you get close enough you might not like what you see. So I keep hiding. Or attempting to hide. Unfortunately, everything I try to hide behind the Lord keeps removing. That is one way to lead me to find refuge in his arms alone!

The problem is when, as a Loving Father, he pushes out of security and tells us to look fear in its eyes and say's to our hearts. " Do not fear." If I didn't know him so well, I would probably question his love. He knows my deepest fear and knows the things it holds me back from in areas of serving him. So the Lord puts me right there in front of that intimidating wall and commands me to climb over it. To push through. To see the truth and stand my ground. To rest in his perfect love and not allow fear to steal the victory.

Sometimes it feels almost cruel. My heart cries out, " Seriously, Lord. Do we really have to deal with that fear, that issue that is buried so deep I didn't even know it existed?" I beg him to deal with some of those less serious, more superficial wounds and fears. But he knows best. He always does. So he reaches deep within and performs his work while I cry, struggle, and plead. He persists even when I question his way and his method. His perfect love invades and casts out fear.

I am glad that even in those moments when I am screaming for relief, when I am begging for a different way, or when I am desperately searching for an escape; the Lord continues his work. He holds me still. He keeps me here in this place where he can work. He doesn't give up. He keeps working away, creating a beautiful masterpiece.

2010-04-02T09:02:00.000-05:00

Author: Mrs. Charles E. Cowman
Source: Streams in the Desert
Scripture Reference: Exodus 16:20

Do Not Yield to Discouragement

"They looked...and behold, the glory of the Lord appeared in the cloud" (Exod. 16:10).

Get into the habit of looking for the silver lining of the cloud and when you have found it, continue to look at it, rather than at the leaden gray in the middle.

Do not yield to discouragement no matter how sorely pressed or beset you may be. A discouraged soul is helpless. He can neither resist the wiles of the enemy himself, while in this state, nor can he prevail in prayer for others.

Flee from every symptom of this deadly foe as you would flee from a viper. And be not slow in turning your back on it, unless you want to bite the dust in bitter defeat.

Search out God's promises and say aloud of each one: "This promise is mine." If you still experience a feeling of doubt and discouragement, pour out your heart to God and ask Him to rebuke the adversary who is so mercilessly nagging you.

The very instant you whole-heartedly turn away from every symptom of distrust and discouragement, the blessed Holy Spirit will quicken your faith and inbreathe Divine strength into your soul.

At first you may not be conscious of this, still as you resolutely and uncompromisingly "snub" every tendency toward doubt and depression that assails you, you will soon be made aware that the powers of darkness are falling back.

Oh, if our eyes could only behold the solid phalanx of strength, of power, that is ever behind every turning away from the hosts of darkness, God-ward, what scant heed would be given to the effort of the wily foe to distress, depress, discourage us!

All the marvelous attributes of the Godhead are on the side of the weakest believer, who in the name of Christ, and in simple, childlike trust, yields himself to God and turns to Him for help and guidance. --Selected

On a day in the autumn, I saw a prairie eagle mortally wounded by a rifle shot. His eye still gleamed like a circle of light. Then he slowly turned his head, and gave one more searching and longing look at the sky. He had often swept those starry spaces with his wonderful wings. The beautiful sky was the home of his heart. It was the eagle's domain. A thousand times he had exploited there his splendid strength. In those far away heights be had played with the lightnings, and raced with the winds, and now, so far away from home, the eagle lay dying, done to the death, because for once be forgot and flew too low. The soul is that eagle. This is not its home. It must not lose the skyward look. We must keep faith, we must keep hope, we must keep courage, we must keep Christ. We would better creep away from the battlefield at once if we are not going to be brave. There is no time for the soul to stampede. Keep the skyward look, my soul; keep the skyward look!

"Keep looking up--
The waves that roar around thy feet,
Jehovah-Jireh will defeat
When looking up.

"Keep looking up--
Though darkness seems to wrap thy soul;
The Light of Light shall fill thy soul
When looking up.

"Keep looking up--
When worn, distracted with the fight;
Your Captain gives you conquering might
When you look up."

We can never see the sun rise by looking into the west. --Japanese Proverb

2010-03-23T23:56:00.002-05:00

Little Glimmers of Hope

Hope seems to be the focus this week for my heart and mind. I am so excited to share what the Lord has shown me. Each little reminder feels like healing salve to my heart. Each time I watch the Lord work I feel strengthened and full of courage. And every time he speaks his truth over my heart, circumstances come that seem set to disprove that very truth. Yet, the Lord uses those circumstances to firmly root those precious truths deep within my heart and mind, removing all the doubt.

Events over the past few days have caused me to question whether we were making the right choices regarding the future of our children's education. Fears and feelings of inadequacies were filling my every thought. The conflict in my heart was fierce. Like a tug of war between wondering if I can really do this and the determination to prove to everyone that I can do this, the battle raged. When it all came down to the end though, the true question was what the Lord, and only the Lord, had led us to do.

I know without a shadow of a doubt that this is what the Lord has for us right now in this time. For how long I don't know. I just know that this is what we have peace about. So many things have confirmed this decision and tonight those things are reminders to me of the Lord's leading. I am so excited and eager with expectation over what the Lord will do in the hearts of my children and in our hearts as parents.

Tonight, I had a picture of what the outcome will be as I keep my goal as a "homeschool mom" focused on the goal the Lord has given me. My goal is simply to capture each moment as an opportunity to point my kids to the Lord. That is my whole purpose in this new journey. I have been praying for the Lord to give me a joy in my calling as their mom and for a supernatural love for my children and my husband. I am a warrior-mother and the battle is for the souls of my children. I know that I don't have to be a homeschooler to do this...but for this time in our life I need more time with my kids.

The picture I was given was in a simple exchange between me and my precious Joshua. I was working on research for Brittney's report and was writing notes. Josh simply said, " Don't tell me Mom. I know that you are doing your bible study, aren't you? I told him not this time but that I had earlier. True to his nature, his mind was spinning and his questions started flowing out. He said, " Do you remember when you were little, you said you read your bible every day so you could know all about Jesus? And you wrote love notes in your notebook to Jesus? Mom I want to have bible study every morning so I can know Jesus like you do." He then continued for the next couple of hours asking all the details of how to have a quiet time. He wanted to know do you get up early in the morning? What do you write? Can you read one of your stories to me so I know how to do it? Will you help me have a bible study? Will you wake me up when you wake up so I don't forget? So many precious questions of a heart beginning to stir towards a personal relationship with the Lord.

And those questions gave me hope. Hope that the Lord is at work. Hope that he will do his work in each of us, in my heart, in the heart of my husband, and the hearts of my children. He showed me then and there that He will make this journey of homeschooling successful...because if the only thing they walk away with is the knowledge and desire of how to truly walk with the Lord they will have the best education they could ever have. I have been drowning in all the parenting failures that seem to scream out louder than any success. Yet, here the Lord proves that he is more interested in the heart and that a heart that wants Him is the true definition of success. And he proved that, despite my failures, he is able to accomplish his will.

2010-03-19T13:39:00.002-05:00

A friend asked me recently what incredible things God was doing in my life. I wrote this in response and wanted to share it here in hopes that it might encourage some of you.

On my way home yesterday, I was thinking about how incredible it is when the Lord reveals to you your gifts and then he uses them to touch someone else. Even more incredible is how he uses the pain and trials in your life for good. I realized though that we have to choose to be where he wants us and not fight against it. A change of how we think and perceive the things happening in our lives is required to see those things as being part of his will.

Once my heart finally surrendered to the Lord completely it was like a flood of his presence has filled every part of me. Everything I read, everything I hear seems to point me back to the truth. Pastor Al’s sermon combined with a book I am reading reminded me that these things that are bringing so much pain into my life are not meant for evil. They are meant for good…good because they drive me to an intimate relationship with the Lord. Good because it has given me the opportunity to reach out to others who are suffering and point them to the Lord in it. Good because they are producing something of such greater value than a life void of pain. Seeing all of this in light of how God is going to use it and is using it has increased my trust in Him and his ability to work it all out according to HIS purpose. I am learning that being at rest in his will comes from trusting his purpose and not having to work it out according to what I think he should do with it.

I guess I kind of feel like he has softened me into pliable clay. I have never felt so intimate with the Lord as I do right now. That is exciting to me because for years I have looked back to my teenage years and considered that to have been my strongest time spiritually. Not so good to be walking with the Lord for so long and to have lost that freshness in our relationship. It saddened me but not enough to stop fighting against Him and for my own way. I finally feel as though I can hear him again as he speaks truth in my heart. I can trust him with my heart. I can obey without fear. I can hear his correction and respond with surrender and not a “failure response” of giving up and running to sin rather than away from it. As a result, my heart finally feels again. It has been stone for a very long time.

The Lord truly is becoming everything to me. In the past year, he has stripped away everything I was replacing him with. He is taking away the walls that I have been hiding behind. He gave me these certain friends who have challenged me in so many ways to find and cling to truth. He took my need to be pleasing to people and used that same need to face some things I really need to deal with and not run. In the process, its becoming more important to me what God thinks than what people think. I am not totally to that point of being free from my desire for approval but I think the Lord is loosening the fear that need had imprisoned my heart in. He took my greatest fear, brought it into my life, and then walked step by step through it, teaching my heart to seek approval in him and desire to hear his words alone, and then gave me what I needed in his way. So much healing took place in such a short amount of time and in a few powerful words. He is the very thing I thought I needed others to be.

I never thought the Lord would ever choose to use me again. I have failed horribly. I have willingly chosen to sin in horrible ways- like a rebellious child determined to crush her Father’s heart. I have dared God to leave me and walk away. I have tried, like I have done in many relationships, to convince him he shouldn’t waste his time. And true to who he is, he has waited for me to surrender and has patiently and passionately pursued my heart. Now he has allowed my heart to feel the freedom and healing power of his forgiveness. One day in the past couple of weeks, my mind was flooded with images of so many of the times I chose to sin. Each time the thought would come to mind, the Lord was there reminding me that it was paid for. It was incredible to me how many of the songs I heard that day had to do with the past and forgiveness.

So I am amazed and humbled that the Lord has given me the opportunity to be used again. It is bringing me so much joy. So much so that I never want to settle for less than God’s best again. I have been praying and asking him to allow me to have a women’s group again to lead, to serve, and to love. I am amazed now that he has brought these women together and it is more than I ever thought possible. I love it when the Lord allows me the opportunity to pour his love and truth into another person and getting to watch them grow. I have gotten to experience what happens when the Lord reveals things to us that have affected us and can be used as an excuse to justify our behavior. As I am learning to let go of those things and not let them be an excuse for me, I get to share with others how to do that too. Each time he gives me the opportunity to share with someone else, help someone else or serve someone I am overcome by joy. It makes everything else worth it to see God using it to bring someone else closer to him.

What are the incredible things he is doing? He is giving me a soft heart. He has replaced my mourning with gladness. He has brought me to the edge, allowed me to see the possibilities of things I could lose and asked me whether I will still choose Him. He has given me a steadfast faith that says “No matter what happens, I will follow you.” He has spoken his words of love, worth, and truth into my heart and has given me faith to believe him and cling those words. If you had known me these past ten years and seen the icy wall around my heart, the desire to be free yet feeling like I am always drowning never able to reach the surface, heard the lies that have waged war against my mind and heart, and felt the intensity of the fear that has imprisoned me you would agree that the things the Lord is doing is incredible. In finally surrendering to His love and allowing him to be everything I need, I feel like I can face the future, with whatever it might hold, with courage, security, and peace.

2010-03-15T11:34:00.001-05:00

Author: Mrs. Charles E. Cowman
Source: Streams in the Desert
Scripture Reference: Revelation 15:3

Songs of Praise Rise From Affliction

"Just and true are thy ways, thou King of saints" (Rev. 15:3).

The following incident is related by Mrs. Charles Spurgeon, who was a great sufferer for more than a quarter of a century:

"At the close of a dark and gloomy day, I lay resting on my couch as the deeper night drew on; and though all was bright within my cozy room, some of the external darkness seemed to have entered into my soul and obscured its spiritual vision. Vainly I tried to see the Hand which I knew held mine, and guided my fog-enveloped feet along a steep and slippery path of suffering. In sorrow of heart I asked,

"'Why does my Lord thus deal with His child? Why does He so often send sharp and bitter pain to visit me? Why does He permit lingering weakness to hinder the sweet service I long to render to His poor servants?'

"These fretful questions were quickly answered, and through a strange language; no interpreter was needed save the conscious whisper of my heart.

"For a while silence reigned in the little room, broken only by the crackling of the oak log burning in the fireplace. Suddenly I heard a sweet, soft sound, a little, clear, musical note, like the tender trill of a robin beneath my window.

"'What can it be? surely no bird can be singing out there at this time of the year and night.'

"Again came the faint, plaintive notes, so sweet, so melodious, yet mysterious enough to provoke our wonder. My friend exclaimed,

"'It comes from the log on the fire!' The fire was letting loose the imprisoned music from the old oak's inmost heart!

"Perchance he had garnered up this song in the days when all was well with him, when birds twittered merrily on his branches, and the soft sunlight flecked his tender leaves with gold. But he had grown old since then, and hardened; ring after ring of knotty growth had sealed up the long-forgotten melody, until the fierce tongues of the flames came to consume his callousness, and the vehement heart of the fire wrung from him at once a song and a sacrifice. 'Ah,' thought I, 'when the fire of affliction draws songs of praise from us, then indeed we are purified, and our God is glorified!'

"Perhaps some of us are like this old oak log, cold, hard, insensible; we should give forth no melodious sounds, were it not for the fire which kindles around us, and releases notes of trust in Him, and cheerful compliance with His will.

"'As I mused the fire burned,' and my soul found sweet comfort in the parable so strangely set forth before me.

"Singing in the fire! Yes, God helping us, if that is the only way to get harmony out of these hard apathetic hearts, let the furnace be heated seven times hotter than before."

2010-03-09T12:29:00.002-05:00

Pictures by Amy Carmichael

The thoughts of the son ran thus: My hopes painted beautiful pictures, but they are fading one by one.

Then his father spoke to him: Thy hopes painted pictures? Destroy all those pictures. To watch them slowly fading is weakening to the soul. Dare then to destroy them. Thous canst if thou wilt. Thou must if thou wouldst be My warrior-son. I will thee other pictures instead of those thy hopes painted. Look up, O thou son of My love.

Then the son looked up and he saw a Cross raised high against the sunlight, then a darkness that might be felt. And he heard, as it were, an echo of a voice, "Father, glorify thy name"; and a Voice that answered I have both glorified it and will glorify it again. And he knew that strength and beauty were in the sanctuary and would presently pour forth. Calvary was not the end of that day's story. And his heart stayed itself upon this assurance: He shall choose our inheritance for us- no fading picture that, but the excellency of Jacob whom He loved.

2010-03-09T12:23:00.003-05:00

From Amy Carmichael, "His Thoughts Said...His Father Said..."

His thoughts said, "Father there are some things I cannot forget."

His Father said," The humbling memory will help thee to walk softly with Me and tenderly with others. But even so there is relief from all distress. O thou that art named the house of Jacob, is the Spirit of the Lord straitened? When I spoke unto Israel in the visions of the night, I did not use the that glorious name; I used the old name which had so a sorrowful a meaning. I said, Jacob, Jacob, and he answered , "Here I am."

Jacob, Jacob, the deceiver, the supplanter, that name is a reminder of thy fall, but also and far more of My mercy. It is to thee I am speaking, to thee, not to another, worthier one, but to thee, My child- Jacob, Jacob.

2010-03-08T09:48:00.001-05:00

How majestic are your whispers, O Lord. The words of the song rolled off my tongue and I couldn’t help but smile. I knew a little something about the whispers of the Almighty God. Standing in the midst of other worshipers as we declared the truth of the Lord, made the words of this song feel like I was on the inside of an inside joke. An intimate exchange between me and the Lover of my Soul could be described in the majesty of the whisper of God. The sovereignty of God, ordering these particular worship songs to be sung on this very day, was nothing less than a continuation of this exchange.

The details of the encounter from the night before flooded my mind and melted my heart. Healing words had washed over my broken spirit. Words from man joined the words of God. Both working hand in hand to restore the assurance I so desperately needed. Only the Lord could have known the words I needed spoken over the ache in my heart. He alone knew the cry of my heart. He had seen the struggle. He knew how much I was doubting my worth and place in this world. He knew how unloved I felt. He knew the battle that was daily raging in my mind as I fought against insecurity and accusations.

So he whispered.

He whispered his truth.

I love you.

You can do this.

Be brave.

I have given you strength.

I am so proud of you.

You are my treasured possession.

I have chosen you.

Look in my eyes and see how I see you.

2010-03-07T23:44:00.002-05:00

Writing from my heart comes naturally for me. I am a die hard journal writer. I am even more a hopeless romantic who delights in finding the treasure in each moment. Each experience becomes something of value to be cherished. Each intimate time with the Lord leaves behind some altar of remembrance to be looked back on and learned from. Put my love for writing together with my love for sharing with the Lord is doing and you have a never ending flow of words! I just can't help it. Keeping such incredible moments to myself feel like I am robbing others from great treasure.

Sometimes my mouth seems to run over and it gets me in trouble. One too many times I have said things or shared things that were just a little too much. I just don't know what not to say sometimes. The problem is this: when the Lord changes your life, you want to shout it from the mountain tops. When he sets you free from something that has held you in bondage, you want to tell your fellow prisoners so they to can be free. When He speaks into the deepest parts of your heart and brings healing with his intimate love, you want to speak those same words to those around you who are hurting. When he is at work in your life and is allowing you to join him in that work, you want to call out to the people watching inviting them to join you too. When Jesus becomes everything to you, you just can't help but tell someone.

Being vulnerable is difficult. It means allowing the Lord to strip away all you hide behind and allow your heart and your life to be raw and exposed to those around you. Its painful, at times, when you know that there are so many watching you struggle and you don't really know what they are thinking. Vulnerability costs you the security of the mask you hide behind. Yet, for those who are willing to be vulnerable and real, comes such great rewards. True intimacy with the Lover of your soul. True friendships with people who love the real you. True freedom. And the joy of being used by God as he uses your struggles to reach someone else.

How else can I reach back and strengthen my brothers and sisters if I am not willing to share with you genuinely? Honestly, aren't we stirred greatly in the depths of our souls when we here someone's story of redemption? Aren't we spurred on towards godliness when we see someone struggle and fail and yet get back up and keep pressing on towards the goal? I know I am. That's why I have to tell my story. There is too much at stake to keep the works of my God to myself.

2010-03-07T08:58:00.002-05:00

Author: Mrs. Charles E. Cowman
Source: Streams in the Desert
Scripture Reference: 2 Corinthians 7:5

Our Dependency on Christ

"We are troubled on every side" (2 Cor. 7:5).

Why should God have to lead us thus, and allow the pressure to be so hard and constant? Well, in the first place, it shows His all-sufficient strength and grace much better than if we were exempt from pressure and trial. "The treasure is in earthen vessels, that the excellency of the power may be of God, and not of us."

It makes us more conscious of our dependence upon Him. God is constantly trying to teach us our dependence, and to hold us absolutely in His hand and hanging upon His care.

This was the place where Jesus Himself stood and where He wants us to stand, not with self-constituted strength, but with a hand ever leaning upon His, and a trust that dare not take one step alone. It teaches us trust.

There is no way of learning faith except by trial. It is God's school of faith, and it is far better for us to learn to trust God than to enjoy life.

The lesson of faith once learned, is an everlasting acquisition and an eternal fortune made; and without trust even riches will leave us poor. --Days of Heaven upon Earth

"Why must I weep when others sing?
'To test the deeps of suffering.'
Why must I work while others rest?
'To spend my strength at God's request.'
Why must I lose while others gain?
'To understand defeat's sharp pain.'
Why must this lot of life be mine
When that which fairer seems is thine?
'Because God knows what plans for me
Shall blossom in eternity.'"

2010-03-04T13:02:00.001-05:00

2010-03-04T01:02:00.001-05:00

Matt Brouwer- "I Wanna See You"

Jesus, I am reaching
Im longing for You now
To meet me in my weakness
And heal me with Your power
I wanna see You
Open up my eyes
I wanna see You tonight
Jesus, I am ready
To leave the past behind
But Im still hesitating
Oh, to let go in my mind
Im fighting with confusion
And Im drowning in my sin
I thought I knew the answers
But Im left unsatisfied within
2001 New Spring Publishing, Inc. / Wheat Sheaf Music (ASCAP)
(admin. by Brentwood-Benson Music Publishing)

2010-03-04T00:17:00.002-05:00

Tonight at church we sang a song about the joy of our salvation being restored. Fighting back the tears, I knew my heart was crying out to the Lord to restore the joy to my soul. Something has happened in the past few days that has taken my joy away. I willingly let it be taken. I admit it. I know better. I know the "right" answers and the "right" things to do. I even know the truth. I just have had a death grip on my grief and I didn't want to let go.

You can only wallow in this self pity for so long before it starts to eat away at you. It starts in the mind and convinces you of all kinds of horrible, terrible things that are just not true. In a single moment, the whole world becomes your enemy, including God. The prison of solitary confinement brought on by believing those lies begins to make you literally insane.

Thank God though that he doesn't let us stay there too long. Just long enough to not want to be there any longer. I truly do want joy to permeate from within, a joy not based on circumstances, a joy that isn't changed with the ever changing state of my mood, but a joy based on this truth alone: " I have been set free by Jesus my Savior and he promises to restore all that has been lost. " I don't have to stay here, in the depths of depression, abandoning all that God has done in my life up to this point. I can get up and move forward in His Will.

All day the Lord has been confirming his love and forgiveness for me. He has showered me with songs filled with words declaring his mercy and his love. I have actually chuckled, through the tears, as I have seen him again doing what he does best- Pursuing my heart, Whispering his words of intense love for me, reminding me again of his hope, his plan. He proves to me over and over that He will not go away. No matter how hard I try to make him quit on me, to give up and leave me for the junk pile, Jesus keeps picking me up and gently restores me. I have even brought up the deepest areas of my life that are so dark, thinking maybe that will be enough to make him go away. Yet, he doesn't run. Instead, he takes that dark sinful area and shines his light on it, transforming me so he can make me beautiful. What an incredible, intimate lover of my soul the Lord is.

I realize too that joy doesn't equal the absence of grief. I am still trying to learn how to cling to joy and hope and not to the grief. It seems the common thread in all the loss of the past week has been the deeper realization of how desperately I need Jesus. It is easy to say "Your all I need, your all I want..." and not really think about what we are saying. Its easy to declare those words when we have Jesus and everything else. But when all else is stripped away, everyone else has let you down or walked away, and you are left with only Jesus, is he enough? That question has been the ponder of my heart this week.

I wish I could say that I was satisfied with Jesus and only Jesus. I am praying that will be a statement I can say...Jesus you are all I need. You are all I want. You are more than enough for me. How I long to have that stability that comes from that truth taking up residence in my heart. I long for the day that I see having Jesus as the "best" thing and not just the result of not having something else. I think this will be evident in my life, when my heart is so full of Jesus and so satisfied just to have him that I no longer find myself vacationing in the pit of despair. Perhaps then my words will be true when I declare that if he was all I had, he is enough.

2010-02-26T00:19:00.002-05:00

Been thinking a lot about friends lately...

and how much a part of my life they are. So many of you have walked through different parts of my life journey with me. Some of you from the time I was just a little girl. Some of you have been there my whole life. Others of you are treasures that have grown more valuable over the test of time, distance, and experience. Some of you have shared your heart with me and given me the gift of your priceless friendship. Some of you are new friends who have brought so much meaning and purpose into my life recently. For all of you, and the part you have played in my life I am thankful.

Some songs that I have been listening to lately have reminded me of some specific friendships and memories with some special people. And since I am sitting here in this quiet hospital room with nothing else to do you all get the pleasure of listening to them too!!!

These first two songs remind me of my group of friends from my trip to Guatemala. We often sang these songs...especially at the end of our time. And I am so thankful that some of these friends are still my friends today, especially my best friend Gretchen!! I can't believe so many years have passed.

This song is for all of you who have walked through the tough times with me.

This one is for my Tennessee girls...brings back so many memories of the good "old" days.

And for those of you who have spoken truth over my life, showering me with prayer and love.

This one is for my sister Reagan...remember this????

2010-02-25T22:03:00.002-05:00

I feel like I have been in an intense battle all day. Thank you all for your prayers throughout the day. It is amazing the difference having prayer warriors makes. We started the morning with an MRI that showed no tumor growth or changes in the brain. Ruled out any other physical reasons for why we have had such sudden behavior changes.

The Lord brought such comfort this morning through my oncology team. I love them so much. To see the concern, the compassion, and the frustration that they have towards this situation encourages me to know we are not alone. Each of them love Jonathan so much and are doing the best that they can. Even the social worker was brought to tears. We just can't stand to see what happens to our precious Jonathan. Trust me when I say that it is horrible.

Dr. Foreman was able to capture the situation well and give words to what I feel. What we are dealing with is hypothalamic rage. It stems from the hypothalamus being severely damaged. He literally doesn't have a way to use the coping skill needed to calm down and not overreact. Dr. Foreman said that you want another part of the brain to be broken...but not the hypothalamus. All the behavior control is centered there. He said there is nothing harder to deal with and more heartbreaking than a hypothalamic rage because you literally can not reason with the child. There is no talking down. There is no changing the mind. It just has to run its course. This was hard to hear, even though I have been saying it forever, because its just one more thing that we can't do anything about. My mommy heart wants to, needs to be able to fix it. I need to be able to take the pain away. I need to protect my other kids from the horrifying experience. And I can't. It is not fair.

Shortly after oncology came, the psychiatrist came in. There is something that just is not setting right with me regarding this doctor. We have had several encounters in the past where he is contradicting himself, forgetting what he said previously, and where he tells me to do something but then acts like I did something without his permission. And he always messes with Jon's meds. That is a very thin line to be walking on. He is very conservative... I think he has some situations go wrong and it has caused him to not be aggressive in treating with medication. I understand the fears and concerns. But I on the other side of this situation am living with the consequences of his fear and lack of intervention. I can tell you that the lack of help is as debilitating and dangerous as any side effect the medicine will have. So while I appreciate his effort, I don't really care for his method. But he is all I have.

He wanted to try a medicine named phenobarbital, an old seizure med that causes sedation. At first it appeared that this med could be used as a rescue medicine. I was ok with a sedating rescue drug. Later when the inpatient oncology docs were telling me the plan, the plan had changed. This was not a prn rescue med. It was an every day medicine. I was not ok with that. I don't need more every day medicines. Especially not everyday meds that are going to make him even more tired and irritated than he already is. What I need is an emergency plan. To top it of, the docs informed that they were going to take him off the Prozac. So not ok with me. It honestly seems that every time we are in the hospital the psychiatrist takes advantage of the opportunity to take him off a medicine. When they told me that, all of sudden I was done agreeing with them and I told them so.

I told them my feelings about the way the psychiatrist is handling the situation. I told them that the only way I would even be willing to use the phenobarb was if they gave him the first dose here and kept him for observation. They were getting ready to discharge us with the instruction to try this med for 10 days and then follow up. So my refusal to leave without observation bought us more time. And I told them we were not changing the prozac. Prozac combined with zyprexa makes a medicine called symbyax. This medicine is the one med that brought Jon stability after two years of psychosis. No way are we touching this medicine.

The more I thought about, prayed about, and researched the medicine the more I didn't have any peace about. So I finally was able to explain to the nurse in a way that finally made sense exactly why we were here. Of course I have been saying the same thing all day and no one seemed to be getting it. We were going to have a conference of all the doctors but most of them had already left. So instead the attending came in and listened (finally) and came up with a reasonable plan. We are not doing the phenobarbital. And in the morning we will be discussing an emergency plan that is reasonable and effective and agreed on by all involved.

I am not sure if the psychiatrist is going to agree. I am not sure he is even going to want to be involved after tomorrow. But I am praying he will be open to listening and willing to take a risk. All I know is that I am leaving only when I have one thing....a plan that includes emergency medicine that works fast...not something that might work in an hour or two. But immediate.

Its ridiculous though that this has to be so hard. Because he has had seizures in the past, they have given me emergency anti-seizure meds that work within minutes. Because he is adrenal insufficient, I have injectable cortef for an emergency. Why can't they give me some tools that will treat the raging crisis within minutes. It doesn't make sense.

So tomorrow may be a fight. Might not be. We need your prayers. I am so thankful for your continued prayers and love.

Until tomorrow....

2010-02-25T15:12:00.002-05:00

You know the situation is not good when you feel as though death would be better than what life is. Sorry, friends, just being honest. The sentence this disease has placed upon my sweet Jonathan is so incredibly cruel. There is no end in sight. No treatment. Nothing to make it better. And to always fall through the cracks because you are an "out of the box" kind of kid in a world that doesn't make accommodations for "out of the box thinking".

It would be less cruel to have no treatment options and yet, have the hope that you will be free from the pain and sickness and be with Jesus. This hypothalamic rage (the term for what is happening because his hypothalamus is broken.) is more devastating and ravaging of quality of life than so many other things. And we can't fix it. You just can't have a hypothalamus transplant. Believe me if you could, I would be the first in line to give him mine!

I am trying to prepare right now to be the advocate for my child. Somehow I need to respectfully ask the doctors to look outside the box. Good thing I have been taking the Love and Respect class...hopefully by now I have figured out, at least in a small way, how to speak in the "male" language. I need the psychiatrist on my side. There is no other psychiatrist to turn to. And yet, I sense he is afraid to be aggressive and do what is needed to help Jonathan. Please pray for the Lord to give me gentle words that will make sense to him. Pray that he can let go of the things holding him back from acting in Jon's best interest.

Please pray for me to know when to fight and when not to. When to accept what they say and when to challenge them. Pray for me to be bold and to be able to act upon that gut feeling the Lord gives.

2010-02-24T07:36:00.003-05:00

Its been a while since I have written. My silence in part has been due to just waiting. Seems a little odd to be telling the world about a great miracle and following that by sharing the reality of life in the shadow of that miracle. The miracle of a shrinking tumor...truly a miracle. But honestly not quite the miracle it was perceived to be. For some, it was the reigniting of the hope that perhaps this boy who we all love so deeply might be spared from the ravishing of this disease. Even for me, that hope lives on. I believe My God is able to completely heal this precious boy. I know without a doubt that he can. I also know that he may choose not to. And in that I feel spurred on to a deeper hope. One that is accompanied by a peace that passes understanding. A hope in eternity. A hope that holds me steadfast to my Savior by the declaration that says, " Though He may slay me, yet, will I trust him." (Job 13:15)

The real miracle to me the day the doctor handed me the scans and said "I have no explanation" was not that the tumor was shrinking but that the God of the universe would be so merciful to us and would grant us such tender love. He didn't ask me to withhold treatment. He didn't make me have to live in that moment knowing that I might be withholding something that would prolong his life. The Lord simply had asked me to give him back HIS child. He told me to trust Him. And to leave the outcome in his hands. And he surprised me.

The reality, though, is that Jonathan's condition is not really based on what the tumor does or doesn't do. The reality is that his brain has been severely damaged. It doesn't function right. Living with the reality of a broken brain is actually quite tough. For everyone.

Things are changing. The past couple of weeks have taken their toll. Raging has become a daily if not many times a day event. Jon just can't cope with life. Medication is not working anymore. Everything feels turned upside down. And everything and everyone is stretched to a breaking point.

Maybe he is just sick and its throwing him off. Maybe he just needs some good antibiotics and he will calm back down. But maybe this is becoming a new normal. Maybe this is a sign that something else is wrong. I don't know.

What I do know is that whatever it is, it has caused us to once again look into the unknown and prepare for what could be coming. For me, it is the knowledge that I can not control what is happening. Knowing that once I make that phone call for help, I am no longer in control. Knowing that in the near future I may be faced with letting go of Jon so he can get help kills me. Its not normal. Its not ok. But it is how it is. And I know that God is in control.

2010-02-22T00:38:00.002-05:00

1 Samuel 30:6 tells us how David was greatly distressed but he strengthened himself in the Lord. These past couple of weeks have carried circumstances that have brought me to a point of being greatly distressed. For a short while I had forgotten how to strengthen myself in the Lord. So I found myself wallowing in the pain and lost my focus on the Lord. I am quickly learning there is no way to survive crisis upon crisis without being built up and strengthened in the Lord. So tonight the Lord is showing me so many things. Speaking to my heart, singing his gracious love over me, and wrapping me in his arms that are more than able to carry me through whatever threatening to destroy me.

Here is another little nugget that ministered to me tonight from Max Lucado's book...

" For some of you, the journey has been long. Very long and stormy. Some of you have shouldered burdens that few of us could ever carry. And you are tired. Its hard for you to see the city in the midst of the storms.The desire to pull over to the side of the road and get out entices you. You want to go on, but some days the road seems so long. God never said that the journey would be easy, but he did say that the arrival would be worthwhile. Remember this: God may not do what you want, but he will do what is right...and best. He's the Father of forward motion. Trust him. He will get you home. And the trials of the trip will be lost in the joys of the feast. Let us run with endurance the race that is set before us, looking unto Jesus, the author and finisher of our faith. Hebrews 12:1-2

2010-02-21T22:46:00.002-05:00

I am reading a short little book with a collection of paragraphs from Max Lucado's books. It is like a flood water of encouragement for my thirsty soul. I wanted to share this one particular thought that really ministered to my heart.

"God views your life the way you view a movie after you have read the book. When something bad happens, you feel the air sucked out of the theater. Everyone else gasps at the crisis on the screen. Not you. Why? You've read the book. You know how the good guy gets out of the tight spot. God views your life with the same confidence. He's not only read your story... he wrote it. His perspective is different and his purpose is clear. " Max Lucado Come Thirsty

2010-01-20T13:15:00.002-05:00

Hurry Up and Wait

That phrase seems to be the story of my life these past couple of weeks. My personality is one that just doesn't find waiting very easy to do. There has been so much on my heart and its driving me crazy not to be able to do anything about the situations. I have learned a lot about prayer- I know intellectually that it is more powerful than the actual doing. Just have a hard time seeing it as action and being content to wait.

As new life, new vision, and new hope has been rebirthed into my heart and soul- I am ready to go. I am ready to obey. I am ready to move forward. The thing is that the Lord has given me this vision and its so close I can almost touch it. But he has asked me to be patient and to wait.

Seriously, that is the hardest thing to do. As I seek Him each morning and share my heart with Him I feel this conflict of waiting and doing. It is like a silence between here and now and the future. I don't really now what he is doing or going to do. And that drives me crazy! And brings me to tears...I go to Him with begging words- Its not fast enough, I want to go now, how much longer until we get there???

So as I was pouring my heart to Him over this frustration, the Lord led me to today's reading in My Utmost for His Highest. I have to laugh at how real and personal our God is! He never ceases to amaze me! So here is the reading:

Vision and Darkness:

Whenever God gives a vision to a saint, He puts him, as it were, in the shadow of His hand, and the saint's duty is to be still and listen. There is a darkness which comes from excess of light, and then is the time to listen. When God gives a vision and darkness follows, wait. God will make you in accordance with the vision he has given if you will wait his time. Never try and help God fulfill His word.

2010-01-20T12:26:00.003-05:00

Read this paragraph this morning in my quiet time and wanted to share it:

" No matter how difficult our struggles or how deep our wounds, they carry with them great lessons. They teach us much about ourselves, life, and God. They enrich us in ways that nothing else can. They give us patience to endure, the maturity to grow, the compassion to reach out to others in need, the courage to survive, the character to transform something terribly hurtful into something positive, and the faith to know that we are not alone. " from The Wounded Woman by Dr. Steve Stephens and Pam Vredevelt

"Pain nourishes courage. You can't be brave if you've only had wonderful things happen to you." Mary Tyler Moore

I hope to write more soon...there has been a lot on my mind lately. Lots that has been left unsaid especially pertaining to Jonathan. Just trying to process what the Lord is telling me.

2010-01-17T21:09:00.002-05:00

An update from Haiti

Please continue to pray for these dear friends as they minister to the hurting people of Haiti. If you feel led to give, please consider giving to their ministry.

From Debbie Lucien:

January 17th Haiti Earthquake Update
Today is a day we are beginning to see more and more miracles and survivor stories. We are seeing more people who have been able to leave Port au Prince and make it here to the provinces. One young man is named Dieufort (literally “God is strong”). He grew up in our community and was the first in his family to finish high school through our ministry child sponsorship program. His sponsor had also wanted to help him finish college so he was in Port au Prince enrolling last week in a computer science program. Last night he told me his uncle’s house where he was staying had been destroyed and he had bit hit on the head. Over the past 4 days he made his way back here. As we sat by the candlelight in my house last night eating a meal of boiled plantain together, he shared with us all the horrors he had seen and experienced. Yet this morning, I saw him limping up the hill, returning to his work as a Sunday school teacher to help encourage the children.
Imagine the weeping and praises as we gathered in church this morning to worship God. One family, that of Pastor Eli Onne, one of the worship leaders, gathered together to sing a song for the church. In tears, they shared how 6 of the young adult children were in Port au Prince to attend school and work and were all living together. Their house was one of the few in their neighborhood not destroyed. Pastor Eli had gone two days after the earthquake to find if they were dead or alive. Today he stood with them all in church thanking God that he wasn’t having six funerals instead.
Following this, my brother-in-law, Jephthe Lucien, asked all those who had come from Port au Prince in the last few days to come forward so we could rejoice that they were alive and also to pray for those still in great need. All of us are beginning to plan for how to care for the increasing number of refugees appearing to see how we help. Immediate needs will be food, clothing, and housing. In the coming days we’ll tell you where to ship gathered supplies.
Caleb has been in Cap Haitien (Haiti’s second largest city) in the north coordinating relief supplies coming in. He’s had 4-5 flights each day of supplies headed different directions as he’s coordinating with Dr. Claude Surena, Haiti’s designated coordinator of relief. (Yeah for those Rotary contacts!)
Besides staying busy with that, Caleb has been distributing practical help on the ground as he finds it. As he delivered medical supplies to Hopital Justien in Cap Haitien he noticed the physicians and staff appeared exhausted and asked when was the last time they’d eaten? The medical director replied they hadn’t had the opportunity to stop. Thus Caleb headed to LaKay Restaurant where they prepare good food relatively quickly and purchased 50 meals for all the staff. When he came back with the food, the staff could hardly believe it and were very appreciative. He left funds with the restaurant which will continue to deliver for the next two days. The owner said he’ll pick up after that for a day or two and then see who else can help. It’s a small thing perhaps, but important none the less.
The mayors of Cap Haitien had sent school buses to pick up as many as possible to relocate survivors to the city here in the north. Caleb found out about it and spent $1,500 so the travelers could find a meal as they disembarked. Again, perhaps a small thing, but a practical need for those who haven’t eaten in several days.
We want you to know the resources you are sending us are being distributed quickly and as wisely as possible. Opportunities for medical volunteers and later for construction will open up but we need to plan wisely. Dr. Surena is already coordinating with those hospitals still standing around the country as to which locations need what help. We want to make sure we send people to where they can be utilized. We will keep you posted.
One last image to make you smile. This is the photo of two children (Shashu & Kiki) who arrived in Pignon yesterday. They told me that they were playing on their porch when the whole house started shaking. “Everything in the house fell to the ground!”
They spent the next three days and nights on the street. Their parents sent them to our community for safety. Their mother is a lab technician who is staying behind to help for now. These are just some of the stories and images around us. Thanks for continuing to pray!
We are humbled and grateful to see gifts coming in to help. It is getting exciting to see how we can move forward more and more and plan how to serve those around us!
Debbie Lucien for all
www.hosean.org

2010-01-15T00:57:00.001-05:00

Years ago, my sister and I went on a mission trip to Haiti. The missionaries we lived and ministered with are still there today. The town that they live in was not affected by the earthquake. But they have immediately begun reaching out to the Haitian people in the affected areas. I am excited about the opportunity to help them in this effort because I know that they will be offering the hurting people more than the urgent help, they will be offering them the Living Water. I just wanted to pass along this link to their ministry website and the following letter from Debbie Lucien, my missionary friend in Haiti, just in case any of you might feel led to send funds to help them out.

www.hosean.org

Letter from Debbie (her husband Caleb went immediately to Port-Au- Prince to assist in evacuation and rescue efforts) :

We are okay.
I just heard from Caleb. He arrived in Port au Prince and said the conditions are indescribeable.
Just to give you ideas, estimates on loss of life right now are approaching 250,000-half a million.
He says bodies of 20-30 people are piled up and noone is even stopping to pick them up because there is no where to take them.
It is horrible.
Last night he slept in his car and is trying to bring back some people here today. We have a group of Americans here right now and are trying to decide how to get them out. There are no commercial flights in and out of Haiti, the only way in is through the DR for anyone other than military aid workers.
8 hours ago · Comment · Like · See Wall-to-Wall

What we are doing: 1. Caleb is arriving back here today with some evacuees. 2. We are preparing to house as many as we can (now I know why God gave me such a BIG new house-smile) 3. We can house us to several thousand here, we are preparing by getting drinking water ready,e tc. We need funding to buy sleeping pads and food for them. There is a water filtration system in town which will provide water. The local hospital here is already receiving injured from the capital. Those who can walk or travel are coming here. We are planning at present to put evacuees at the camp, at the school, wherever we can find place. 4. Please continue to pray for wisdom and strength for Caleb 4.5- Jephthe left this morning to help with evacuations and meet Caleb. 5. We are fine! 6. Some cell phone service started working again today, although it is intermittent. Pray for calm as people begin to hear who has died. It is very disheartening. 7. Pray we can continue to be a light. The Christians here know we have survived to be here for such a time as this. WE love you guys. Please pass the message along and continue to pray for all of us. Debbie

2010-01-11T00:07:00.003-05:00

The Incredible MRI Results!!!

If you follow me on facebook you have already heard the news. But for those of you who aren't on there...Jon's latest MRI results show significant shrinkage. I hope to write soon and in more detail regarding all that has transpired over the past few days. Needless to say we are all quite shocked and thanking God for all that he does.

As you can tell the picture on top shows a smaller tumor. The tumor is the white circle in the middle.

2010-01-07T08:59:00.002-05:00

From Come Away My Beloved Devotional:

Resignation

Seek first the kingdom of God and His righteousness, and all these things shall be added to you.

Matthew 6:33

Resign all into My hands - your loved ones as well as your own self. Be obedient to the still small voice. Your own imagination may speak more loudly, but wait upon Me always. You will always see the wisdom of this in due time.

2010-01-05T11:37:00.002-05:00

Random Thoughts for Today

This is just a collection of thoughts that I had this morning that I don't want to loose...and wanted to share in case it encourages someone else as well.

1. From the book, " The Wounded Woman" by Dr. Steve Stephens and Pam Vredevelt in the chapter titled Good Grief it says,

" God is the One who knows all the details and is best equipped to lead you along this foreign path into brighter new beginnings. Self- Reliance will mislead you. God won't. He makes this promise:

" I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. There are the things I will do; I will not forsake them. " Isaiah 42:16

Your pain is not a problem. It is a solution. The grief you have experienced- or still endure- is a driving force. The emotional energy generated by that grief is what will press you to examine yourself, your worldview, and your beliefs in God, and eventually enable you to change, adapt, grow, and move through the valley of the shadows and out the other side, back into the sunlight.

Grief isn't the road to healing. Grief is the road of healing. And it is familiar territory for Jesus.

He is fully aware of your heartache and knows the way through your suffering. The operative word is through. You won't feel desperate forever. You have God's guarantee on this: I will restore you to health and heal your wounds declares the Lord. (Jeremiah 30:17)

Desperation is productive if it drives us to God. It presents us with opportunities to watch God display His grace and power. It gives us a chance to just stand back a little and witness God doing what man can not do. It allows us to experience God becoming whatever we need Him to be as He escorts us along the path of healing. We come to know Him as our God of Comfort. Our Strength. Our Shield. Our Security. Our Safe Place. Our Peace."

2. From Come Away My Beloved by Frances Roberts:

"Tarry not for an opportunity to have more time to be alone with me. Take it though you leave tasks at hand. Nothing will suffer. Things are of less importance than you think.

I love you, and if you can always, as it were, feel my pulse beat, you will receive insight that will give you sustaining strength. I bore your sins and I wish to carry your burdens. Lay your head upon my breast and lose yourself in me."

This devotional meant so much to me this morning. Truly, it has been in my Savior's arms with my head upon his chest that he has given me strength and images that have imparted peace to my aching heart. Even now, he tenderly loves me and ministers to me in that quiet time alone with him....how did I ever make it through the day without this special time without him?

3. From " Streams in the Desert"- My favorite devotional of all time!

Remind God of his exclusive responsibility- There is no one like you to help! (2 Chronicles 14:11. Abraham believed God (Romans 4:3) and said to his eyes, "stand back!", To laws of

nature, " Hold your peace!" and to an unbelieving heart, " Silence, you lying tempter!" He

simply believed God.

4. The Lord is with me like a mighty warrior. Jeremiah 20:11

And lastly, songs that really ministered to me this morning.

Revelation by Third Day

Love Heals Your Heart by Third Day

He Is by Mark Schultz

One Heartbeat at a Time by Steven Curtis Chapman

2010-01-03T20:18:00.002-05:00

Courageously Standing on the Edge

The new year has found me standing precariously on the edge of the unknown. There is no way back. Wild emotions rage around me. Fear, pain, tears, and anger join the brewing storm as it threatens to engulf me. No matter what direction I look there are dark, ominous clouds. Even going forward promises to meet with strong wind, pounding rain and countless heartache.

Forward is the only option. Backwards just can't be done. I have tried. I have grown weary trying to retrace my steps. My heart has twisted in agony as I entertained the thoughts of what if I had gone a different path, what if I had not chosen this journey at all. I can't change what has happened. I can't change what will happen. I can only press on through the storm to find the one who waits for me at the end.

Truth is that he is not only waiting for me at the end. He is walking beside me, cheering me on. He is leading me through the treacherous path because he has walked this way before and has prepared the place where my feet will pass. And on those days when fear overwhelms, exhaustion sets in, and the tears are blinding He lifts me up into his strong arms and cradling me to his chest carries me on to the other side.

That is where I have spent the past three days. Clinging to the one who holds me close to his heart. In the arms of the only one who can shelter my bruised heart from the raging storm. Only here in his arms, resting my head on his shoulder like a trusting infant can I hear the truth he so gently whispers to my heart. Of course there have been numerous times in the past couple of days when I climbed out of the safety of those arms and felt the sting of the storm as it left me disillusioned and angry at my Lord. Lashing out at him in anger, screaming the painful lies that have held me in bondage- kept me from those loving arms.

What a gentle lover the Lord is. Able to see beyond the bitter words, he speaks into my broken, crushed heart and calls me to come. He holds me while I fight against him, holds me when I finally break, holds me while the tears fall. He holds me. In the end that is all that really matters. No matter the intensity of the storm, no matter the pain, no matter how many tears fall- none of it can stop the Savior from holding me.

I really don't know what this new year holds. New Years Eve brought a little glimpse of what might be in store. Jonathan's brain is just not working the way it should be. We will find out in a couple of days if the tumor has begun to grow or not. Regardless of the outcome, the reality is that his brain is just not going to get better. For the first time on New Year's Eve, a doctor gave me permission to choose what makes Jonathan happy and comfortable and not necessarily what will "fix" him. After a week of taking temps, documenting every weird symptom, I was encouraged to instead watch my child...is he happy, is he coloring and able to do what he likes?

Then stay home and let him be happy and comfortable. So after much prayer and thought, my focus is changing from fighting to keep Jon alive to fighting to give him a life fully lived.

This of course has brought on so many thoughts...

First, my desire is to make this year a new adventure. To live each day fully and intentionally. Jon may have years left with us...but living like today could be the last will not be something I will regret should he surprise us all. There are so many things to experience together as a family. So much to be learned and explored. I don't want to get caught up in the stupid things that distract us from what is most important.

That thought led me into another important thing that the Lord reminded me of on Friday as I scoured my old journals to be reminded of the ways the Lord has worked in my life. I was reminded that as we follow the Lord he may ask us to do things that don't make sense to others and that others may totally oppose what we are doing. We have to know fully what the Lord has spoken to us and not let go of that no matter what.

I found this in my journal from September 4, 1993 and it is an excerpt from a book written by perhaps my most favorite person of all time: Amy Carmichael (from the book or writing entitled " One Step at a Time" )

You and I maybe called again and again to walk right into our own "rivers". Whatever they may be- to wet our feet in them. We may be called to do what nobody understands except those to whom the word of guidance is given- and with it his promise too. But understand this: The word must come first and also his promise. You and I must be sure of what we are called to do with an inward conviction that absolutely nothing can shake. In my own case, again and again, I have had to wet my feet in the water... only God and those who have walked in that path know how hard that kind of faith life can be. But He does know. And when the people around us don't hear the words and and the voice that we have heard, and only say, " It thunders..." then he comes near and we know him as we never knew him before....If only the next step is clear, then the one thing to do it take it! Don't pledge your Lord or yourself to any steps beyond what you know. You don't see them yet.

There are somethings on my heart that don't make sense to others...even those closest to me. But I will choose to cling to what I know the Lord has spoken to my heart. A dear friend reminded me of this the other night. He spoke of putting up my shield of faith when those thoughts of doubt, guilt, condemnation come. I find it quite funny that the very next day after he said that I found an outline to a bible study I taught about the shield of faith.

Here is a glimpse into this study...

Roman Shields were 2 feet by 4 feet and a soldier could hide completely behind it. It was made of wood and then covered with cloth and leather. It was then dipped in water to extinguish fiery darts. ( Metaphorically, the word of God is the water that our hearts and minds are bathed in to distinguish the darts)

The shield protects us from fiery darts. Darts are often thrown when things are great and we are not relying on the Lord. Some of these darts are:

Fear- allowing it to linger causes it to spread and destroy out faith

Doubt- about God, questioning our faith, about other people and ourselves

Words- attacking our will, our mind, our heart, and our conscience

Confusion

When properly used and in place- the shield will protect us from all darts.

This is my favorite part of the shield- they were designed to lock together with those shield's of other soldiers. Together the shields would create a barrier wall and great strength. Sometimes we are wounded in battle and forget to take shelter under the shield of faith. How great that the Lord has given us other people to stand beside us, lock their shields with us, and stay with us until we are able to stand again.

So I am choosing to hide behind my shield of faith, allowing it to distinguish the darts flying fiercely toward me right now.

I know this is a random collection of thoughts and if you are still reading I am quite impressed!!! I just didn't want to loose any of the memorial stones the Lord is giving me right now as this journey begins.

2009-12-31T13:41:00.002-05:00

I have the feeling that this is the first of many post to come in the next couple of days. True to the tradition of looking back over the past year and looking forward to the new year, my mind is busy recalling moments from the past. I am choosing though to look back and see the moments where the Lord met me and offered his promises and hope.

A couple of days ago, a special friend of mine forwarded me an email that I wrote to her in 1998! I can't believe she still had it!!!! What was even more incredible is how the Lord ministered to me through the words he gave me that many years ago. I am amazed at how alive and near the Lord is to our hearts and lives. He truly is a personal and real God who longs to have an intimate place in our lives.

I hope this will encourage and bless you as well.

(Based on Psalm 121) I am convinced that thousands of years ago, when the Lord inspired David to write this psalm, that he saw across the pages of time and saw me. He saw the tears that fell tonight as I laid in bed. He felt the ache that I felt inside. A hurt so deep that only he could know it. He saw my need. And he reached out and met it. God knew all that this evening would hold and he provided the right lullaby that my heart and soul needed. What food these words hold to a hungry and empty soul. What lessons for this stubborn heart to learn. What comfort for these teary eyes to behold. I lift my eyes....where have my eyes been today? Certainly not lifted.No, my eyes have not been lifted up to behold my Savior, my King, my Lord. My eyes have not even lifted their gaze to cry out to him who sees all. My eyes have been on me and the world around me. My eyes have sought out one other than Jesus to hold and comfort me. Another one to be my help. My eyes have searched to find a way to do it myself, to make things right in my own strength. My eyes have laid downcast for days because they have failed to look in the right direction. Where does my help come from? My mind knows where its supposed to come from, but does my heart? Its learning. How awesome that God didn't label the kind of help he provides. This help is for all situations and all times. Oh that my heart would learn this precious truth and really ask where does my help come from. Does help come from man? No, he fails and is weak. He cannot conquer all. He can not even be trusted or counted upon. Does my help come from within? From some inner strength? No, there is no strength in me. I cannot help me. If I could then I would not need help, would I ? My help comes from the only one able to give it. Jesus, my helper. He is able to stand when all else falls. He is able to hold me up when I'm crushed and faltering. He is able and has conquered sin and death. He is able to love forever and unconditionally. He is able to do what none other can do. He is able to be there at any minute day or night with his ears and eyes wide open. And he wants to help. He longs for me to run into his arms and find shelter from the raging storm. He yearns to be able to wrap his arms around me and comfort my aching heart. He is able. How do I know he is able? Because he made the heavens and the earth. If he can do all that with just one word from his mouth then isn't he big enough to take care of me? He's even better than a big brother ....He's the daddy there to protect and nurture his children. ' He will not allow my foot to be moved. Wow! What encouragement. Today I'm struggling. Life seems like one great big mountain and I'm at the bottom. There seems to be no way up and I want to give up before I even start. I feel as though I've walked a million miles. I'm feeling unsteady, ready to fall. Ready to find a new path. But my Lord, my helper, has promised to not let me fall. He has promised to bring me all the way. He has promised to keep me on the path. My foot will not collapse, nor will it wander from the chosen trail. Why? God will hold me fast. He has promised and he keeps his promise. He does not sleep. My God is awake twenty four hours a day. He never goes on break. Tonight this is probably the greatest comfort of all to me. Because tonight my whole world sleeps. And I feel alone. Man tries. They try to stay awake but they are human and tired. Their eyes are heavy. So I cry alone. A hurt inside I don't understand. A burden so heavy to bear on my own and no one to help carry the load. Alone until a small still whisper hits my ears. " I am awake." My Jesus is awake. He is ready to listen and will not fall asleep in the middle of the sentence. He will not nod off as the tears still stream down my face. He will hold me until the pain subsides. He has promised to never sleep. I know no other friend who can make this promise. The Lord is my keeper. He guards my life with tender loving care. Nothing touches me that hasn't already touched him. You see it has to go through his body to get to mine. He feels every pain, he sheds tears along with me, he has been through it all even worse things than I. Why then if he feels and knows all I go through, why does he allow it to touch me? Why does he allow death to shatter my life? Why does he allow pain to break my heart? Why does he allow confusion to enter the scene? Because he sees something I don't. He sees eternity. He sees what all of these things will produce. He knows what I need in order to become more like him. He shall prserve my soul. My Jesus will hold me and keep me until the day he presents me to the Father. No one and nothing can seperate me from him. I will never be lost.... God has promised. He will keep me from wandering. His spirit will always draw me back home. He shall watch over my going out and coming in. Just as he was here tonight, he will be here tomorrow.......

2009-12-21T09:38:00.001-05:00

I read this today on a blog that I follow. It is huge!!! I am still trying to digest it and let the truth soak in. I can't wait to see what God will do in my heart as the truth invades and becomes reality.

9 words that changed my life by Jon @ SCL

Post by Jon at Stuff Christians Like

Sometimes, hope hurts.

It shouldn’t. The phrase, “hope hurts” should be an oxymoron like “Lady Gaga gospel album.” But I promise you, it’s not.

Sometimes when you’re so deep in a season of hurt, you get used to the bad. You start to think you deserve it. You start to expect it and get comfortable with it and get numb to it. And like a creature that lives so far down on the bottom of the sea, you adapt to it. You cobble together little survival mechanisms that help you get through. You get by.

But hope is tenacious …

Even in the darkest of my days, when I’d journal about suicide and despair, a fragment of hope still bounced about softly in the dryer of my head. (When you’re married with kids and have lots of laundry to do, 42% of your metaphors and analogies become housework flavored.)

There was a problem though, there was a painful obstacle between me and hope. You see, I was so far down the path of hopelessness, I was so lost and selfish and bent on destruction that I found myself in a terrible lose-lose situation. For example: If my wife was kind to me, I felt hurt because she didn’t know how hurtful I was secretly being to her with porn and a cadre of lies that would have killed her. If my wife was mean to me, I felt hurt because she had been mean to me. Any way I turned, simply resulted in more grossness.

And that is one of sin’s goals. Not simply to remove the good from your life, but to have it actually serve as a weapon of mass destruction.

Have you ever felt that way?

Have you ever felt completely unworthy when someone offers you love?

Have you ever been ashamed of the lies you’re living when someone offers you truth?

Have you ever felt undeserving of something good, because deep down, you believed that person wouldn’t really love you if they knew who you were?

It’s very possible that I’m the only one, and that’s OK. But I do need to tell you about the 9 words in the Bible that changed the way hope felt for me.

I’ve written about this before, but I’m a big fan of “edge verses.” I’m a big fan of looking on the periphery of a scene in the Bible and seeing all the deep truth that often gets hidden amidst a major scene. And in Luke 22 that certainly happens.

Jesus is on the threshold of getting crucified. He has the last supper with his disciples. He is sharing his thoughts on the father and the concept of serving and ruling. There is a sense of great importance heavy in the air. In the middle of that, he has a short conversation with Simon about how he is going to betray him.

It’s going to happen. Jesus knows this, but he wishes it wasn’t. He says to Simon in Luke 22:31-32:

Simon, Simon, Satan has asked to sift you as wheat. But I have prayed for you, Simon, that your faith may not fail.

And then, in 9 words, he explains a big part of the reason I thought a mess-up like me could be a Christian.

Jesus tells Simon:

“And when you have turned back, strengthen your brothers.”

That’s it, those are 9 really simple words, but they demand a second look.

Do you see what Jesus is saying in that first half of the sentence, And when you have turned back? He’s saying:

And when you fail.

And when you sin.

And when you blow it and sell me out like a common thief.

And when you literally and physically turn your back on me.

And when you ruin it all.

When you turn back.

That concept is part of why our God is so different than everything we expect. We can turn back. There’s a return. There’s a comeback. There’s a loss and a brokenness and a state of falling, but you can turn back. That door is open. When I read the phrase “And when you have turned back,” I read a loud, wild picture of what grace really looks like.

Then you get to the part that is so easy to miss, the comma. Thank God for the comma, because that’s not how I would have written that sentence.

Mine would have looked more like:

“And when you have turned back, repent for three years before you try to get within a mile of my holiness.”

“And when you have turned back, don’t think for a second you’re qualified to tell other people about me.”

“And when you have turned back, here’s a long list of works you’ll need to do in order to clean yourself of the mistakes you’ve made and the consequences you’ve earned.”

But Christ doesn’t do that! He throws in a comma. He continues the sentence and simply says, “strengthen your brothers.”

Four years ago I ruined my life, but you know what?

God gave me the gift of the comma.

And that’s why I write Stuff Christians Like.

I have turned back. Not once, not twice, but a million times. And now it’s time to strengthen my brothers.

I don’t know what you’ll get this Christmas for a present, but please know this, God wants to give you the comma. He wants to give you grace. He wants you to know that when you have turned back, you can still strengthen your brothers.

It’s time to accept the comma of grace.

___________________________

2009-12-11T18:44:00.003-05:00

I have been praying for a way to help my friends in their adoption journey. Recently, I have really felt my faith challenged as I read stories of others who have trusted for the Lord to provide and through crazy circumstances money flooded in. One particular story was huge....over $20,000 raised in 2 weeks. How incredible is that!!!

So I have been asking the Lord what I can do. The first thought that came to mind was to use my photography. Honestly, I have struggled with even presenting this idea. I am not a professional photographer in the sense that I have been trained in the art and skill of photography. I just love taking pictures and I love giving people images that are better than Walmart quality. I just hate charging people a fee for this gift! Those of you who know me know how much I would just give everything away!!!!

Recently, I have been blessed with the opportunity to do portraits for several friends and families. It was such a fun experience. And since others are asking me to do photo shoots for them I feel as though this could maybe the answer to my prayer. I am offering photo shoots at your location of choice (within the Colorado Springs and outlying area) for a minimum donation of $25 through the end of January. The entire donation will be sent to my friends, The Little Family, towards their adoption costs. In return for your generosity, I will give you a cd of edited and ready to print images. Usually there are at least 30-50 images per sitting.

For more information about the Little family and their adoption journey visit here

2009-11-18T15:11:00.002-05:00

Could you spare just five dollars?

Your five dollars added to my five dollars added to another's five dollars could mean that a little child would finally be in a forever family. My special friends have begun the process of adopting another precious waiting child from China. Many of the kids helped by Love Without Boundaries are special needs children. My friends have a heart to welcome these special children into their home! Please visit their website below for more information. They are having a drawing for a $250 Best Buy card...I hope you will consider a small donation towards making a huge difference in one child's life.

Click Here to visit their website.

2009-10-26T23:08:00.007-05:00

Tonight I was struggling to maintain a positive spirit. Songs have been used by the Lord to really minister to my heart and turn my thoughts back to him. So I sat down and began to listen to the many songs that would lift my spirit. I thought it would be fun to go through and find songs that would tell the story of my life. It was a neat experience and really helped keep the night from going south. What a good reminder to see how the Lord has been a part of every thing that has happened in my life. None of these videos, with the exception of He's My Son, are mine (neither are the songs). Just borrowed from youtube.

1. Jesus Loves Me

At the age five I found out this simple truth and gave my heart to Jesus.

2. He Won't Let You Go

At age 10, due to some choices my brother made I watched my hero fall from the pedestal I had placed him on. God used the heartbreaking circumstances to draw me into a life changing commitment to be fully surrendered to my Lord. At this moment, I made the choice to follow the Lord no matter what.

3. Tell Me Again

As I was growing up in the Lord, he made sure I was surrounded by those who were faithful to BE Jesus. I will be forever grateful to my youth leaders who invested their time and their hearts in my life. I am convinced that without them I would not be where I am today.

4. Be the One

One of the songs that was an inspiration to me early on...I wanted nothing more than to Be the One the Lord could and would use.

5. For the Sake of the Call

Inspired by Jim and Elizabeth Elliot, I responded to the call on my life to go to the mission field. At 15 I went on my first mission trip to Guatemala. One step on foreign soil was all it took for me to be willing to leave my family and go...my entire high school years were spent overseas as a missionary. What an incredible time of my life!

6. Go Light Your World

The passion of my heart!

7. A Friend Like You

During my trips overseas, I met some of my best friends. Its hard to believe that my best friend and I have remained close over 17 years. What an incredible blessing she is from the Lord. Throughout every season in my life, the Lord has blessed with that special friend who has connected deeply with my heart. I am so blessed.

8. All I Ask of You

The significance of the movie this song comes from is greater than the song itself. Even today this movie reminds me of the time in my life when I fell in love only to realize that this was not the person who God had intended for me. There are days when I wish I could erase this part from my story. But I know that without it I would not be where I am today.

9. Don't Say Goodbye

One of the hardest days of my life was when I, at 16 years old, looked into the eyes of the man I was going to be married to, and hand him back his ring. The Lord had clearly spoken to me that this was not his plan. I had given my this man my heart and in the process had forgotten to keep the Lord first in my heart. Though I was heartbroken, I never regretted my choice to obey the Lord. Shortly after breaking off the engagement, I left the country and returned to the Lover of My Soul.

10. Seize the Day

Refocused and ready to follow the road the Lord had led me to, I left home at 17 and went to Peru as a missionary. After three months there I came home only long enough to go to Haiti with my sister and then pack to return to Peru. What an incredible adventure that time was. Even now my heart is homesick for the Peruvian people. I pray daily that some day the Lord will let me return.

11. Take My Hand and Walk

This song became huge to me in the time that I was returning to Peru. I was struggling with many things. So many things were unsettled in my heart. But this song reminded me of the promise that I just had to take his hand and follow.

12. Hold Me Jesus

Little did I know that while I was hiding away in the Jungle, the Lord was preparing the one who he had chosen for me to marry. My incredible husband was going through a painful time in his life when I met him and this song was a huge part of his healing and coming back to Jesus. Everytime I hear this song I am reminded of the precious beginning of our relationship.

13. Another Man in Her Life

7 weeks after my husband and I started dating I left for Peru. I had made a commitment to be there for 7 months. I felt that my commitment to the Lord could not be changed simply because I had fallen in love. My husband joined me in Peru the last 2 weeks I was there. 8 weeks later we were married. This song was played at our wedding and was a huge part of out marriage.

14. Masterpiece

I became a mother on September 25 1997. I should have known from the beginning that this little boy would have such a huge impact on our world. He was dying when he was born. His lungs were aspirated with 6 holes. I didn't have a name for him because he was supposed to be a girl. But the moment I saw him and saw him fighting for his life, I knew his name. Jonathan, gift from God. A bittersweet reminder that God gives and God takes away. He proved to be one miracle after another...God healed the holes in his lungs within hours and he came home 3 days later. Fourteen months later Brittney was born. 12 months after she arrived Jason arrived. Motherhood and all its ups and downs was in full swing.

15. Let Mercy Lead

Josh joined us in 2002. The weight of the incredible gift and responsibility was heavy upon my heart. How grateful I am that the Lord is able to make good out of our failures as parents. I will do my best to lead them and train them, after that its up to the Lord to capture their hearts.

16. He's My Son

Three months after Joshua was born, great suffering entered my world. Jonathan, the month before he turned 5, was diagnosed with a brain tumor. The Lord surrounded us with special friends and carried us through some very dark days. Its hard to believe that it was seven years ago and we are still walking this path. And still being carried by the strong arms of our Heavenly Father.

17. Praise you in the Storm

So many days and long nights filled with never ending tears can lead to a questioning heart. Why does the Lord allow this trial to stay for so long? Why doesn't he heal my child? This song became a soothing balm to my heart. I choose to praise him in the midst of the storm...not because he removed the storm. Here is where I encounter the God of the Universe in an intimate way only found in pain and suffering.

18. I still believe

The line that I will live and die by. No matter what happens in life, no matter the pain that comes, no matter how easy it would be to walk away... one thing remains...I still believe. The truth about the Lord has not changed and will not change no matter the circumstance.

19. Blessed be your name

My life song. Still I will say...blessed be the name of the Lord.

20. Watch Over Me

Another love song that the Lover of my soul has sung into my heart during the darkest nights. He watches over me and reminds me of his presence.

21. Look What Faith Can Do

This is my new favorite song. I am watching the Lord do great things. He is making miracles out of broken hearts, broken lives, and broken dreams. Nothing is beyond his touch. His ways are not my ways, but I am learning that stepping out in faith has great rewards.

22. I lift my eyes

The older I get in my walk with the Lord, the more I realize that He alone is the source for everything we need. He is truly all that life is all about. The more I fill my life with him, the less I seek to be filled by others and able to give to others unconditionally.

23. Friends Are Friends Forever

This is the greatest blessing in my life right now. The Lord has allowed me to reconnect with these kinds of forever friends. Ones that I never thought I would ever see again much less live life with. I am blessed beyond words.

24. Beautiful Ending

The prayer of my heart is to end well. I don't want this life to be in vain. I want to finish the race set before me with a heart that is truly surrendered to the Lord.

2009-10-08T15:13:00.002-05:00

Its a snowy, cold afternoon here in Colorado Springs. Perfect day for a hot cup of coffee, a fire in the fireplace and family time. Its almost time to get my kids from school and I am actually looking forward to them being home. Tomorrow is a half day and I am so looking forward to the weekend. But for now I am enjoying the last few minuted of quiet and thought I should update everyone on Jonathan.

We went to Denver this morning. I am so thankful that Shawn was off today and was able to go with us. Since Mya has been running a high fever for the past few days, Shawn just dropped Jon and I off at the hospital and took her for a drive. Jonathan has been physically stable ever since we left the hospital. He really looks good. I am thankful for every minute like this and don't want to take it for granted. I know all to well how fast things can change.

We still don't have any test results back. So we still have no idea what caused this four weeks of weird episodes. The plan for now is to wait for the results. We are all leaning towards the chemotherapy playing a part in this. The question is whether there is an underlying problem and the chemotherapy "activated" the problem or if the chemo itself is the problem. Not an easy answer to come to. We have decided to put the chemo on hold until we have a better idea. We may just stop the chemo all together. We will scan in shorter intervals until something happens... if the tumor starts to grow then we have to do something. If it stays stable we will just keep watching and waiting.

Today we are just enjoying life. Life as a family. Life with its ups and downs. Life is an amazing journey. And no matter the outcome, I am sure of one thing... the Lord is on the throne and he is capable of more than I can ever imagine. I am glad that the responsibility of the outcome rests on his shoulders and not mine.

2009-09-25T18:40:00.002-05:00

As this week has now become even more complicated, I find myself running to the only safe place that I can run to...the arms of Jesus. This afternoon I am encouraged by the words in a tiny book by perhaps my most favorite person in the entire world- Amy Carmichael. In her book: His Thoughts Said...His Father Said..." there are many encouraging thoughts. But this one really encouraged me.

There is a Place By Me

His thoughts said, " Before me continually is the grief of wounds, confusion, suspense, distress"

His Father said, " Behold there is a place by Me, and thou shalt stand upon a rock. Then, as a frightened child on a storm swept mountain side would gratefully take his father's hand, and stand on a rock in a place by him, fearing no evil- so it was with the son. For he knew that though the earth be removed and the waters be carried into the midst of the sea, that rock by his father will never be moved.And he remember words about things that can be shaken and things that will remain. And though no small tempest lay on him, he said to the multitude of thought whose voices sought to disturb him, Sirs, be of good cheer; for I believe God that it shall be even as it was told me. For as his majesty is, so also is his mercy.

2009-09-25T13:53:00.002-05:00

If you would like to send Jonathan a note to cheer him up, you can go onto the hospital website at thechildrenshospital.org and under the "about your visit" site. There is a place to send email cards that are delivered to his room.

2009-09-24T22:19:00.003-05:00

Well, it appears that our stay here at the beautiful Children's Hospital is coming to an end. Hopefully, we will be headed home tomorrow morning. Jon has an EKG scheduled in the morning. Evidently cardiac issues are common in some of the genetic things that are going on so we are going to make sure that is all working right.

I still really don't know what they have tested for or are looking for. I know they have a long list and it appears they are going down it ruling thing out. There is a good chance that all of this is nothing more than toxicity to the chemotherapy but we need to know if it is anything more than that. Also need to know if there are conditions that are making it more likely for him to be toxic to the chemotherapy.

My prayer is that they will quickly figure it out so we can resume chemo soon. I don't like going to long without knowing we are fighting that stupid tumor. Thank you all for your continued prayers and support. We love you and appreciate you!

2009-09-21T11:43:00.001-05:00

I have so much to blog about but don't have time right now. I have a feeling the next few days will provide ample time to get caught up. I wanted to let you all know that Jonathan will be admitted to the hospital tomorrow morning for some extensive observation and testing. We need to find out what is going on with him. If this is the new normal, I can deal with that as long as they tell me that is what it is. But until we know that for sure I am not content to just sit back and watch whatever is happening happen.

Basically he has been up and down since we were last in the hospital 4 weeks ago. There is no explanation for all the changes that are going on. Finally on Friday the doctor decided we were going to figure it out. So we are to stay in the hospital until we have it figured out.

Mya and I will be joining Jon in the hospital adventure. Shawn is staying here with the other three. I am hopeful we won't be there too long. So I am off now to get ready. Thank you for praying for, supporting, and loving our family through this journey. We love you all.

2009-09-10T23:35:00.003-05:00

What a crazy, long day! The oncologist decided yesterday that he wanted Jon to be seen by the seizure specialist today in clinic. So they ordered another sleep deprived EEG for this morning and then we went to see the dr. The EEG was the same as the one last week...definitely could be prone to seizures but not seeing much actual seizure activity. Duh!!!! thus the reason we asked it to be done when he was in the hospital and it was happening! But we are just the parents; what do we know????

The neurologist did have some interesting ideas though. She picked up on some new muscle weakness that is somewhat concerning. Both eye lids are drooping today which is different and odd. There is some kind of muscle condition or disease that can cause some of the symptoms we see but not all of them. She did blood work to test for this. It takes about a week before the results come back. She also decided that they wanted another 24 hour EEG. They had an opening today...lucky me! I should have told them no and to wait until next week but I didn't. And so now it has added so much stress and chaos to the weekend.

I am going on a women's retreat tomorrow with ladies from church. Jon has to be taken all the way to Denver just to have the EEG disconneted. Two hours out of the day. Two hours out of a day that didn't have 2 extra hours in it. I think any other time it would be no big deal. But this time it is jut particularly annoying because they are doing it after the fact and will not really see anything... so its kind of a waste of time and money. But I want these doctors to be diligent in finding answers so I am willing to do what they ask at least for now.

The prep for this EEG took forever...long enough to watch an entire movie. So we got on the road late and ended up in rush hour traffic. Jon started throwing up in the middle of this traffic. I couldn't reach a bowl so he was throwing up in diapers. Finally we got out of traffic and I could stop for a little while and get the bowl. He threw up over 17 times...those are the only ones I was able to write down. I have no idea what happened. When we got home, I gave him anti-nausea meds and he went right to sleep. Thankfully he has not thrown up again.

So here we are tonight. I am praying against the attack of the enemy...there is much of this going on in many of the lives of those going on the retreat. God is going to be working in our hearts there and the enemy is not to happy about it. I am praying for wisdom. I am praying for the ability to clearly and confidently express my thoughts and frustrations in a calm and respectful way. And I am praying for the doctors involved to have wisdom to think out of the box and find some answers to wait is ailing Jonathan. Thank you all for your prayers as well. We love you all!

2009-09-02T07:17:00.002-05:00

Thank you friends for praying me through the night. I woke up this morning and found this devotional in my inbox...I thought it was rather timely considering my prayer from yesterday. This is from the Streams in the Desert.

Author: Mrs. Charles E. Cowman
Source: Streams in the Desert
Scripture Reference: Philippians 1:29

Fashioned In The Fire

"Unto you it is given . . .to suffer" (Phil. 1:29).

God keeps a costly school. Many of its lessons are spelled out through tears. Richard Baxter said, "O God, I thank Thee for a bodily discipline of eight and fifty years"; and he is not the only man who has turned a trouble into triumph.

This school of our Heavenly Father will soon close for us; the term time is shortening every day. Let us not shrink from a hard lesson or wince under any rod of chastisement. The richer will be the crown, and the sweeter will be Heaven, if we endure cheerfully to the end and graduate in glory.--Theodore L. Cuyler

The finest china in the world is burned at least three times, some of it more than three times. Dresden china is always burned three times. Why does it go through that intense fire? Once ought to be enough; twice ought to be enough. No, three times are necessary to burn that china so that the gold and the crimson are brought out more beautiful and then fastened there to stay.

We are fashioned after the same principle in human life. Our trials are burned into us once, twice, thrice; and by God's grace these beautiful colors are there and they are there to stay forever.--Cortland Myers

Earth's fairest flowers grow not on sunny plain,
But where some vast upheaval rent in twain The smiling land . . . .
After the whirlwinds devastating blast,
After the molten fire and ashen pall,
God's still small voice breathes healing over all.
From riven rocks and fern-clad chasms deep,
Flow living waters as from hearts that weep,
There in the afterglow soft dews distill
And angels tend God's plants when night falls still,
And the Beloved passing by that way
Will gather lilies at the break of day.--J.H.D.

This classic devotional is the unabridged edition of Streams in the Desert. This first edition was published in 1925 and the wording is preserved as originally written. Connotations of words may have changed over the years and are not meant to be offensive.

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2009-09-01T21:36:00.002-05:00

Hurting. That's where I am tonight. Friends, I need your prayers. I asked the Lord to rescue me from my fears and I am beginning to think that its going to get worse before it gets better. I know he is growing me and stretching me. I know he has to cut out all the scar tissue that has grown in my heart. And that means a lot of bleeding. Alot of healing. And just time.

The fire feels as though it has been turned up full blast. I need courage to stay in the fire until the work is done. I know the Lord is not holding me there against my will. I know this is the answer to my prayer. But honestly, does it have to be wave upon wave of encounters with the things that scare me the most. Or the things that hurt the most. Why does everything have to be all at once?

I will tell you that this really has nothing to do with Jonathan although the past few days of dealing with him has contributed. So please don't worry..the Lord is just refining me. I am trusting that he has the ability to hold me as he breaks me and molds me into his image. It will all be ok when its done.

Thank you for your prayers my special friends.

2009-08-31T21:33:00.002-05:00

I have a friend who is walking a similar road as me in that we are both battling this brain tumor in our children. She once used a word to describe the emotional state we sometimes find ourselves in. Emotionally fragile. Tonight that is what I think would describe me. One thing might be enough to send me over the edge.

My brain is tired. My body is tired. My heart is tired.

When I am tired, I am weak. And when I am weak I find myself to be very vulnerable to the overwhelming flaming arrows of the enemy. So desperate I am tonight to find shelter and refuge under the wings of the Almighty.

So desperate I am to somehow separate the circumstances and emotions from what I know is true about my Lord. Otherwise those arms that I need so badly to hold me right now will become ones that I despise and run from.

It is these kinds of nights when I find myself crying along with my daughter as she struggles with her homework and then cries as she tells me how she is struggling in school. I am angry that I feel that in this area my ability to meet their needs at their pace has been taken from me. And my emotions prevent me from being able to rightly encourage her. Instead I just cry and hate how I feel. Hate how much it makes me feel so angry at the people who didn't support my choice to homeschool last year and who never offered to help. People who now sing the praise of school but they aren't the ones stuggling through the pain of each day. Makes me crazy...these stupid emotions.

Same kind of angry sadness that overtakes me at the end of this several day battle of trying to take care of Jonathan and to figure out what is wrong with him. The exhaustion of fighting with each doctor, the trying to explain what they are missing, the watching every minute of the symptoms that no one else can see. The frustration of saying one thing and then being proven wrong but his appearance only to see the symptoms return when we are once again on our way home. The sadness of realizing that really there may not be an answer...that some kids just stay sick. Some kids just leave the hospital and never get better. Then I get angry at others "suggestions" and "comparisons"- its well intentioned but honestly I could do without.

Oh how I wish right now that I could take my kids and run to some deserted island and for just a little while just sit with them, hold them, play with them, and watch the sun set as the waves crash on the shore and be still in the presence of God. Just for a short time away from the pain and chaos. Just a little while to heal and rest.

But for now I am going to make some coffee, spend some time with Jesus, and do something for me.

*By the way, the consensus on Jon is that he has an infection...still unknown and untreated at this time. We are waiting on the EEG results..that in itself was an unpleasant experience but will have to wait for another day. If they come back showing something... I will have words to say to certain doctors. We go back to the doctor on Thursday. So until then I am going to pretend that this was all just a bad dream!

2009-08-31T13:47:00.002-05:00

Nothing bugs me more than well intentioned doctors who announce, " You are looking good!" Why does he look good? Because he is sitting up and not laying in bed lethargic and jerking. Because he talks to you, smiles, or maybe even sings you a song. In all fairness to them, they don't really know him. They don't know that this is the child who was singing praise songs while he was in essence dying seven years ago before we knew what was wrong. This is the child who laughs in the face of death, endures pain with gladness, sings the song in his heart despite the way his body feels. He may have been in incredible pain or feeling so awful before you walked in the room but the moment you came into his presence life became all about blessing you.

I want to shake them all sometimes and say Don't be fooled. Because when you are fooled I am left to play the dr. I am the one who watches him unable to stay awake, to cry because he is in pain. I am the one pouring formula and pain meds down his g tube because he is too nauseated to eat. I am the one who knows something is wrong and yet can't convince you otherwise.

I wish sometimes that doctors had to come home with you and live with you for a period of time. That they had to sit at the bedside of the child who is fighting some nasty disease or illness in the late hours of the night. I wish they could see and remember the child they are treating so that they would not be fooled.

That said, today, I know that I have a great team of doctors fighting for my child. They are trying to figure out what is wrong. I think that they believe me even when they don't see what I am talking about. The day that they stop listening to me is the day that I will no longer trust them. Its the day that I find new doctors.

Jon is in MRI right now. I really don't think they will find anything new or different. I hope that they don't. But I am thankful that they are checking. In a little while we will go back upstairs and see the doctor. Then go back down to do an EEG to see if there are seizures going on. Honestly that would be the explanation that makes the most sense. But we will see. I am just going to keep praying and keep fighting until I feel the Lord tells me otherwise. I need peace.

The hardest thing right now is the thought that this may just be a new normal. That his brain is just not able to function and cope the way that it should. That maybe it is beginning to deteriorate. I don't like this thought. I am not ready to just give up. I have to keep fighting for now.

I will post an update as soon as I know something. Thanks for walking this path with us.

2009-08-31T09:59:00.001-05:00

MRI scheduled for noon. EEG at 4pm. I am praying there will be some answers. He is pretty sick this morning. Keep praying.

2009-08-31T01:02:00.002-05:00

Just finished sending emails to 4 doctors. Someone in this country has to have some ideas for what is going on with Mr. Jonathan!!!! Praying for some answers tomorrow. Wishing I was just imagining all that is happening. I appreciate all the people who are praying for us and with us and for all of you who have come alongside us and offered to help in any way we need. YOu are incredible blessings!!! I will update more as I know more. Good Night.

2009-08-30T13:47:00.002-05:00

I guess I should update this and not leave everyone hanging. We came home Friday night. We were feeling like there was no point in staying in the hospital if there was nothing they could or would do to diagnose the problem. Jon is still not well. Yesterday, he slept for the entire day. He was awake for only 4 hours. This morning we went to church and he slept during the whole service. His body keeps jerking and shaking. Even when he is awake he has moments where he seems back to his self. But then he goes back to being groggy, in pain or just plain out of it.
I am going to call Monday morning and update the doctors and see where we go from here. I honestly have no idea what to do or what is going on but I am going to do my best to bring all the specialists together and go from there.
Shawn is going to be Oklahoma this week so it could be an extra challenging week if I end up in Denver every day. So I am praying for peace, wisdom, and that my heart will be fully surrendered to the Lord. It is a battle to remain fixed upon the Lord, especially when I am getting tired and frustrated. Thank you for your continued prayers and encouragement. It is through the love of friends like each of you that we are strengthened for what lies ahead.

2009-08-28T17:35:00.002-05:00

I am so incredibly frustrated! The neuro-oncologist came back and saw Jon at the same time that the resident on the floor came in. The resident was asking if I was comfortable to go to home. I was trying to explain why I was frustrated and not sure what to do.The resident was telling me how neurology didn't think it was seizures and how they think he has this movement before. Which is not true. They said that they think it could be a different medicine. Honestly, I think they just don't want to be bothered by coming to see him. The neuro-onc came in and said he really thinks its just an illness. But he doesn't know what it is that is wrong. He wanted me to know that I could decide what I was happy about and not to feel pressured from anyone. I asked him what he would do if it was his child...he said if it was his wife she would leave in 3 seconds because she does not trust doctors and hates them. He said if it was him he would stay. But that I should do what I was happy about. I asked him if he honestly thought I could take care of him at home and he said well that is complicating because I have a small tribe at home. I told him that my small tribe needs me at home if he really didn't think he needed to be here.

I don't know what to do. He said that he promised if I were to go home that they would call Monday and check on him and see him monday and do more tests on monday if it is still going on. I hate this part of being his mom! I hate taking the risk. I hate that things are so complicating that no one knows what to do. I am going to wait for Shawn and our friend to get here and pray with them about it and then make a decision.

Please pray for wisdom in this decision.

2009-08-28T15:20:00.002-05:00

For those who are not on facebook and may not know : Jonathan was admitted to the hospital yesterday afternoon. On Sunday afternoon I picked him up from respite care and he was acting strange. Kind of out of and very mellow. On Monday he continued to be lethargic, spacey, and generally not feeling well. He was complaining of back pain and his head was tilted the right most of the day. I thought it would be related to a sinus infection. So I took him to see the pediatrician and she was unsure of what to do. She gave him antibiotics to try to keep him from getting worse and encouraged me to wait to see the oncology team.

On Wednesday he seemed to be a little better. His color was better and his energy improved. I thought maybe it was getting better and I woudn't need to call the team for their input.

On Thursday morning Jon slept in until 10am. When he came downstairs he was shaking like he was shivering. He said I am cold. So I put a sweatshirt on him and didn't think much else about it. Shortly after he woke up though I noticed that Jon was pretty pale in color, almost gray. Certainly not feeling well. He came and sat with me on the couch and we took his last scantron test for school. As we were sitting there his arms and legs and shoulders start jerking around. It was similar to the way our legs jerk when you are in a deep sleep. His lip was still shaking and quivering and twitching. I immediatly called Denver and told them I was on my way.

I thought maybe we were just having seizure activity. And I wasn't about to have a seizure and not be near the hospital. I was trying to convince myself though that I wasn't crazy and wasn't just seeing things. You would think I would learn to stop second guessing myself. By the time we got to the hospital he was dizzy and crying of intense chest pain. Odd pain for him. I had to put him a wheelchair because he was so dizzy and his legs were jerking a lot.

The normal happy talkative Jonathan who usually greets people with such enthusiasm was barely talking. He was falling asleep. His eyes were twitching and eyelids shutting involunatarily. The doctor came in and checked his hands. He said his color was awful and that he was not well. Intially he did not think it was anything neurological. He said he needed to be admitted because he was unwell with an unknown cause. They did blood work, started an IV with bolus of fluid, IV cortef, and IV antibiotics. Although there is no obvious signs of infection, we have been continuing with IV antibiotics and the stress dose of cortef.

This morning they thought his color was improved and energy level was increased. So they were talking about maybe letting us go home. The main concern was the shaking/jerky movements that are still constant. After they talked to the psychiatrist, the docs thought it might be tardive dyskinesia which is caused by taking anti-psychotic medications. So the psychiatrist suggested that they give him cogenten to see if it would stop the movements. If it did then it would be diagnositc of tardive dyskinesia. So the attending drs ordered the med. In the meantime, Jon was fooling everyone with his charming personality and incredible ability to act well when he is not. So the attending was convinced he was so much better.

Jon was sitting with me on the bed doing school work when the attending came in. He said it appeared he was better... I tried to warn him that he was actually in the process of crashing again. But...I don't think he listened. I told him his throat was hurting and he was getting groggy again. After the doc left I talked to my friend who prayed for the Lord to reveal whether there was something really wrong and that he would allow those who know Jon to be involved. Not even minutes later, the nurse practitioner who usually takes care of us came in. I was so relieved. She watched what was happening. And saw how now 10 minutes after the other doctor left Jon had crashed. He was in bed, unable to keep his eyes open, unable to have a conversation, and very lethargic. He was shaking like crazy. She said she really thinks its neurological. So she went to talk to the neuro-oncologist.

Shortly after she left the psychiatrist came to see Jon. He checked him out and said that it is not the medicine causing this problem. He doesn't have tardive dyskinesia. So he went to talk to the team to figure out what the plan is and what is going on. A few minutes later the social worker came in to check on him. While she was in the room the nurse came back with the congenten. I told her not to give it to him. Last thing we need is to give him some med he doesn't need!

A few minutes ago the Nurse Practitioner called and told me that the neuro-oncologist suggested we go home and come back next week for and MRI and MRA and other tests. He agreed that it could be neurological because of the way his mouth droops when he talks. The inpatient team had not gotten the memo that we were not treating tardive dyskinesia so they were still recommending congenten. I told her the psychiatrist said that was not what was wrong. So she asked me what I wanted to do...did I feel safer in the hospital? Of course, because we don't know what is wrong. How do I know I am not going to take him home and have his head hemorage or something. I asked her what she would do and she said she would stay here. She said she would let them know.

So we really still have no idea what is going on with the boy. All I know is that there is something wrong. Please pray that the Lord will give the doctors supernatural wisdom. Pray that he will give me the ability and confidence to know when to trust them and when to question them. We need to know what is wrong so we can fix it!!!!

Thanks friends for walking through this with us!

2009-08-28T10:51:00.003-05:00

Today, as I sit in the hospital with Jon waiting to figure out what is going on with him, I read a verse during my quiet time that struck me. It called out my name, saying this one is for you. At first I was just simply agreeing with the verse until I reread my last blog entry. I had been pleading with the Lord to set me free from fear. And now this verse means so much more: "In my anguish I cried to the Lord and he answered by setting me free." Psalm 118:5

He has answered by setting me free. And little things make me laugh as I feel him prodding me along to live in this freedom. As I made a cup of coffee this morning in this gourmet contraption I sensed freedom. Do you know how many hours I have spent in this hospital in the past with no coffee simply because I was afraid of the machine and afraid to ask for help? Silly I know. Oh how much more did I enjoy my coffee this morning.

See these are those crippling things that I seem to struggle most with. And little by little they spill over into the bigger more important things in life. Thats why I must deal with fear head on even in these areas. This morning I could sense the Lord's delight as he stretches me further and further into dependence on him.

One book in particular has been instrumental to me in this process of dealing with fear. I think this is the fourth time I have read this book. Each time I have been struggling with a different area. The book is Loving God With All Your Mind by Elizabeth George. The main premise of the book is that we are to think on truth. If we think on only what is true then we will be loving the Lord with our mind and be guarding our minds and hearts from needless worry and conflict.

As I read through the book, I am going to try and journal through it here. If you have never read this book, you really really have to! I think you will be truly blessed by it!

2009-08-24T22:58:00.002-05:00

Fear. Such a simple word with far-reaching consequences. Fear is so natural. So sudden. And so hard to control. Fear can be paralyzing, suffocating, and can literally bring death. It takes on many forms and strikes each of us in different ways. Regardless of how little or silly the fear may be, when it strikes it is debilitating.

Fear came knocking on my door last night. In all reality, its been knocking for a long time. And I think I may have let more than one foot in the door. And then I realized that what I thought would be a short visit in my heart had become a little more than that. Fear had moved in. It took up residence in my heart. Fear's baggage was beginning to squeeze the life out of me. Thankfully, the Lord was already beginning to shed his light on my heart and the need to kick fear out.

Unfortunately, fear was not to willing to leave. In fact, last night, fear along with his buddy oppression tried really hard to convince me that possession was nine tenths of the law and refused to leave. They tried so hard to enslave me and hold me prisoner. But then that light of truth from my master began to shine through and set me free.

I wish I could say that in an instant my heart was freed and I could breathe again. It is only now hours and hours later that I am beginning to breathe again. My heart was seized by fear. Paralyzed. Life was being sucked out and I was panicking. I asked the Lord why after battling all day through scripture and prayer the fear still was there. Shouldn't it just go away? Shouldn't the Lord just remove it? I asked him to...why didn't he? Then I realized that if he did I would soon find myself right back here. Instead, the Lord is teaching me how to take him at his word, how to obey, and to choose to believe truth. So I think this battle for my heart may continue for a little while. But honestly, I don't want it any other way. When this battle is over, I expect to stand in victory...fully confident in my Lord. No longer afraid. I have asked him to make me bold and courageous. I think I may have to walk through the battlefield to gain these character qualities. Some things are worth fighting for, don't you think?

This morning, after the terror of the night, I began to really diligently seek the Lord for his perspective on all these things. The night had been full of nightmares and a feeling of oppression had filled the house. I desperately wanted to get up, turn on all the lights, and spend time reading the word. But I honestly was too afraid to even get up out of bed. Seriously, it was that paralyzing. The puppy was crying at 2am the exact time that the worst nightmare ended and then Mya started crying. I made Shawn take the puppy outside.. there was no way I could go out. The next few hours were spent praying, asking the Lord why there was so much fear, begging him to take it away, trying to understand the dream, praying for protection, peace for each of my precious family, friends.

Gently, the Lord revealed to me some of the underlying reasons for my fear. Through the vivid nightmare, I realized that I had allowed certain thoughts, fears, memories, circumstances past and present to take me captive. I was bound in the dream and facing certain death. In the nightmare I was not able to call out for help. I realized that I have some deep trust issues. And that there are certain issues that I don't trust the Lord in at all. Its hard not to be afraid, if you can't trust the one who promises to protect you. He also showed me that these fears were holding me back from what He has planned for me. There is so much he wants me to experience and fear is preventing me.

This morning in my quiet time I searched through the bible for the Lord's truth about fear and how to conquer it. I am going to share some of these here tonight. As I process this in the coming days I will share more on how the Lord ministers to my heart. Please, friends, please pray for me in this area... I am desperate to be set free. I am desperate for the Lord to replace fear with a supernatural courage. I think it is going to be a tough fight...I need you to battle with me.

God's truth about Fear:

You must not fear them for the Lord your God himself fights for you. Deuteronomy 3:22

Be strong and of good courage, do not fear or be afraid of them, for the Lord your God, he is the one who goes with you. He will not leave you nor forsake you. Deuteronomy 31:6

I will fear no evil, for you are with me. Psalm 23:4

I sought the Lord and he heard me and delivered me from all my fears. Psalm 34:4

God is our refuge and strength, a very present help in trouble, therefore we will not fear. Psalm 46:1-2

The Lord is on my side, I will not fear. What can man do to me? Psalm 118:6

Whoever listens to me will dwell in safety, and will be secure without fear of evil. Proverbs 1:33

The fear of man brings a snare, but whoever trusts in the Lord shall be safe. Proverbs 29:25

Strengthen the weak hands and make firm the feeble knees. Say to those who are fearful hearted, "Be strong and do not fear!" Behold, your God will come with vengeance, with the recompense of God, he will come and save you! Isaiah 33:3-5

Fear not, for I am with you. Be not dismayed for I am your God. I will strengthen you, yes, I will help you. I will uphold you with my righteous right hand. Isaiah 41:10

For I the Lord your God, will hold your right hand, saying to you Fear not, I will help you. Isaiah 41:13

Do not fear. Do not be afraid. Isaiah 44:8

Do not fear, for you will not be ashamed neither be disgraced, for you will not be put to shame for you will forget the shame of your youth. Isaiah 54:4

O man, greatly beloved, fear not. Peace be to you, be strong, yes, be strong! Daniel 10:19

According to the word I covenanted with you when you came out of Egypt, my spirit remains among you, do not fear! Haggai 2:5

He said to them why are you fearful, o you of little faith? Then he arose and rebuked the winds and the sea and there was a great calm. Matt 8:26

To grant us that we being delivered from the hand of our enemies might serve him without fear, in holiness and righteousness before him all the days of our lives. Luke 1:73-75

Do not fear, little flock, for it is your Father's good pleasure to give you the kingdom. Luke 12:32

For you did not receive the spirit of bondage again to fear but you received the Spirit of adoption by whom we cry out, Abba, Father. Romans 8:15

For God has not given us a spirit of fear but of power and of love and of a sound mind. 2 Timothy 1:7

So we may boldly say The Lord is my helper, I will not fear. What can man do to me? Hebrews 13:6

There is no fear in love, but perfect love casts out fear, because fear involves torment. He who fears has not been made perfect in love. 1 John 4:18

Do not fear any of those things you are about to suffer. Rev.2:10

Do not be afraid, stand still and see the salvation of the Lord, which he will accomplish for you today. Exodus 14:13

Have I not commanded you? be strong and of good courage. Do not be afraid, not be dismayed for the Lord your God is with you wherever you go. Joshua 1:9

Whenever I am afraid, I will trust in you. Psalm 56:3

You shall not be afraid of the terror by night... Psalm 91:5

He will not be afraid of evil tidings, his heart is steadfast, trusting in the Lord. Ps 112:7

When you lie down, you will not be afraid. Yes you will lie down and your sleep will be sweet. Proverbs 3:24

Do not be afraid of sudden terror, nor of trouble... Proverbs 3:25

Behold God is my salvation, I will trust and not be afraid. For Yah, the Lord, is my strength and song. He also has become my salvation. Isaiah 12:2

Peace I leave with you. My peace I give to you, not peace as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid. John 14:27

2009-08-20T00:36:00.003-05:00

Ok, I admit it I am a big chicken! I am also so very weak when it comes to certain things...fear is paralyzing for me. There are so many things that I miss out on just because I am afraid. I hate this. I really do. It would be one thing if it was over some huge thing...but we are talking little things that make me feel like I can't function or breathe. So when my child is freaking out over one of those little things I totally relate. My heart breaks for him. I get weak willed and find myself too quick to give in or to rescue...only problem is that my anxiety over the situation prevents me from even doing that. Its quite the problem, I must admit.

Add to that fear, all of the guilt, feelings of failure, worry, frustration etc and its a deadly combination. Prone to slide downhill pretty fast. I have got to get true perspective and get it fast or I am doomed. So, here I am...tonight feeling actually pretty good. Why? because I didn't give into fear. I didn't get angry. I didnt add to the massive meltdowns taking place in my home. Thank God that he whispered to me that I needed to leave. Thank God that he gave my husband the strength and patience he needed to deal with everything in my absence. And thank God for starbucks and friends that help add to the perspective I needed. And thank God for the many people who immediately went to their knees for us.

I will go into detail more on a later post about these silly fears. But just wanted you all to know that we are ok. My weird bout of throwing up yesterday evidently was more than some fluke thing...Brittney came home early from school after throwing up. Shawn is not feeling well. I don't know how the rest will be tomorrow. By the time we got home today, the kids were all tired and hungry and Britt was crying. The stress level was high. Add to that Jason losing his homework and Josh losing his toy from the treasure box. Jason completely freaked out. He decided he just won't be going to school tomorrow and locked himself in the bathroom. He was crying, screaming, and frantic. That one went from bad to worse. Then Josh started crying over his toy. And in the middle of all of this, Jon told me he wanted one kind of cereal, changed his mind after I poured and then proceeded into melt down mode when I said he couldn't have the other cereal. I gave in, poured him the cereal he wanted but it was too late...he was biting himself, crying about how mean we were, etc.

It was too much for me to handle. So I left. See all I could see was visions of Jason from school years past. SO full of anxiety and fear that he would become terror stricken and refuse to get on the bus. refuse to get in the car. refuse to stay in the car ( he tried to open the door once while we were driving.)having to pry him off of me in the school office, half dressed and screaming and crying. And here we were not even a full week of school and the anxiety was returning over a lost homework sheet. I can't handle that right now. Especially when I didn't want them to go to school in the first place. So I had to leave. and trust that Shawn could handle it. And he did.

That's the short of the story...more another day. Just want to thank you all for continuing to pray us through the little things that feel so huge.

2009-08-14T10:57:00.002-05:00

Lunch for the second day of school! Not the prettiest presentation or photo but fun anyway, right? In the right hand corner are three mini turkey tortilla roll ups. In the muffin cup is half of an oatmeal cream pie. Next to that are three strawberry mice eating a cheese wedge. String cheese separates the fruit from the main "entree", which is uncooked ramen noodles for a spider web accompanied by three spiders. The spiders are made from rice balls (they taste like broccoli cheese casserole since they are made with broccoli puree and sweet potato puree. So if they eat them they will get veggies too!) and have chow mein noodles for legs. I included a small container of ranch dressing to dip the spiders and roll ups in. I hope that they will eat it and have as much fun devouring it as I did making it.

2009-08-13T10:45:00.005-05:00

First Day of School!

2009-08-10T23:21:00.002-05:00

Jason had his appointment with the endocrinologist today. He was so worried about having to have blood work done but he did such a great job. I love this doctor...he has such compassion, he listens, he takes notes, and he remembers. He sees Jonathan as well and genuinely cares about him and our family.

So here is where we stand today: the bone age shows a delay of about a year and half which is good for him. It puts time on your side to be able to catch up. There is the possibility that he simply is going to be a late bloomer. But the doctor said the findings show reason to pursue testing to figure out what is going on. Jason has stayed at the 10th percentile for a long while in height. But the chart shows that he has dropped down into the 3rd percentile. The doctor said that normally in just late bloomers they stay on the same percentile. And when you drop below more than one line you start to wonder what is making the growth abnormal.

They did many different blood tests including thyroid function to rule out any possible causes. If these all come back ok than we will do a 4 hour growth hormone test. There are so many things that affect growth so we just start here and keep going until we figure out the cause. It takes about 10 days to get the test results back so we will know more then.

Been here...Done this...and so thankful to know that the cause is not a tumor in his brain. The rest we can deal with.

Thanks again for all your prayers.

2009-08-07T00:39:00.002-05:00

My favorite scripture from Isaiah:

(needing to refresh my heart with God's word tonight)

"Stop doing wrong,learn to do right! Seek justice, encourage the oppressed. Defend the cause of the fatherless, plead the case of the widow. Come now, let us reason together, says the Lord. Though your sins are like scarlet, they shall be as white as snow, though they are red as crimson, they shall be like wool. " 1:17-18

" He will teach us his ways, so that we may walk in his paths." 2:3

"Come, O house of Jacob, let us walk in the light of the Lord." 2:5

"Stop trusting in man..." 2:22

"Tell the righteous it will be well with them, for they will enjoy the fruit of their deeds." 3:10

" It will be a shelter and shade from the heat of the day, and a refuge and hiding place from the storm and rain." 4:6

"Then I heard the Lord saying, Whom shall I send? and who will go for us? And I said Lord, here am I. Send me!" 6:8

"If you don't stand firm in your faith, you will not stand at all." 7:9

" Don't call conspiracy everything that these people call conspiracy; do not fear what they fear, and do not dread it. The Lord Almighty is the one you are to regard as holy, he is the one you are to dread. " 8:12-13

" And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace." 9:6

" Surely God is my salvation; I will trust and not be afraid. The Lord, the Lord is my strength and my song; he has become my salvation." 12:2

" On this day...he will swallow up death forever. The Sovereign Lord will wipe away the tears from all faces; he will remove the disgrace of his people from all the earth." 25:8

" In that day they will say, Surely this is our God; we trusted him and he saved us. " 25:9

" You will keep him in perfect peace him whose mind is steadfast, because he trusts in you." 26:3

" The path of the righteous is level. O upright one, you make the way of the righteous smooth. Yes, Lord, walking in the way of your laws, we wait for you; your name and your renown are the desire of our hearts. My soul yearns for you in the night; in the morning my spirit longs for you." 26:7-9

" Lord, you establish peace for us, all that we have accomplished you have done for us." 26:12

" In repentance and rest is your salvation. In quietness and trust is your strength, but you would have none of it. " 30:15

"Yet the Lord longs to be gracious to you; he rises to show you compassion. For the Lord is a God of justice. Blessed are all who wait for him!" 30:18

" O people of Zion, who live in Jerusalem, you will weep no more. How gracious he will be when you cry for help! As soon as he hears, he will answer you. " 30:19

" Whether you turn to the right or to the left, your ears will hear a voice behind you, saying This is the way; walk in it." 30:21

" The fruit of righteousness will be peace. The effect of righteousness will be quietness and confidence forever. " 32:17

" O Lord be gracious to us; we long for you. Be our Strength every morning, our salvation in time of distress." 33:2

" Steady the feeble hands, steady the knees that give way; say to those with fearful hearts, Be strong, do not fear, your God will come, he will come with vengeance; with divine retribution he will come to save you. Then the eyes of the blind will be opened and the ears of the deaf be unstopped." 35:3-5

" He tends his flock like a shepherd; He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young." 40:11

" Do you not know? Have you not heard? The Lord is the everlasting God, the creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. " 40:28,29

" So do not fear for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand. " 41:10

" For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear I will help you." 41: 13

" fear not, I have redeemed you, I have summoned you by name, you are mine. When you pass through the the waters, I will be with you, and when you pass through the rivers, they will not sweep over you. When you walk through the fire you will not be burned, the flames will not set you ablaze. For I am the Lord your God the Holy One of Israel, your Savior." 43:1-3

" Since you are precious and honored in my sight and because I love you..." 43:4

" Forget the former things, do not dwell on the past, See I am doing a new thing! Now it springs up, do you not perceive it? " 43:18-19

" I, even I, am he who blots out your transgressions, for my own sake and remembers your sins no more." 43:25

" Remember these things, O Jacob, for you are my servant, O Israel. I have made you, you are my servant: O Israel I will not forget you. I have swept away your offenses like a cloud, your sins like morning mist. Return to me, for I have redeemed you." 44:22

" Turn to me and be saved, all you ends of the earth, for I am God and there is no other." 45:22

" They will say of me " In the Lord alone are righteousness and strength." 45:24

" You whom I have upheld since you were conceived and have carried since your birth. Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you. I will sustain you and I will rescue you." 46:3-4

" I am the Lord your God who teaches you what is best for you, who directs you in the way you should go." 48:17

" I am honored in the eyes of the Lord and my God has been my strength." 49:5

" For the Lord comforts his people and will have compassion on his afflicted ones." 49:13

" Can a mother forgot the baby at her breast, and have no compassion on the child she has borne? Though she may forget, I will not forget you! See, I have engraved you on the palms of my hands." 49:15-16

" Because the Sovereign Lord helps me I will not be disgraced. Therefore have I set my face like flint and I know I will not be put to shame. " 50:7

" He who vindicates me is near. Who then will bring charges against me? Let us face each other! Who is my accuser? Let him confront me. It is the Sovereign Lord who helps me. Who is he that will condemn me? They will all wear out like a garment; the moths with eat them up." 50:8-9

" You will forget the shame of your youth and remember no more the reproach of your widowhood. For your maker is your husband- the Lord Almighty is his name!" 54:4-5

"For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord." 55:8

" You will be a crown of splendor in the Lord's hand, a royal diadem in the hand of your God." 62:3

2009-08-06T23:30:00.002-05:00

It figures that I would come home with great news to share and then have my bubble of excitement burst. Isn't that how it works? Jon's appointment went really well. His blood counts are still on the border of ok... his platelets are low but they have been lower. His white count is low so that bothers me a little...not much room for them to fall next week. This chemo has a "surprise" drop 2-3 weeks out from treatment and this is where we have started to not recover so quickly. I am worried about the kids going to school and bring home all those fresh germs. Hand Sanitizer will soon be greeting them as soon as they arrive home!

The psych appt went really well. This was Shawn's first time meeting him. Its funny because I don't think the dr honestly remembers what he says from week to week. This is scary too..good thing I am on top of things and that we have a great team of drs to keep up with everything. He didn't even ask why we chose not to put him in the program. He did talk about the program and shared with me how some of the structure of the classroom is and paralleled it to how I am starting to structure things. That made me happy...God does know after all what is needed and lead me to exactly the right information. So for now we press on with what we are doing and wait for a few more weeks before we mess with any of the other meds.

In two weeks we go back to oncology and have our next MRI. So until then we wait and as the psych dr said we celebrate this small victory before we move on.

Well, my celebrating lasted just a few short hours. We picked the kids up from Mamaw's and went by the store really fast. Josh was in a grumpy mood and was provoking Jon. Jon was tired from the trip and not feeling so well so he was easily agitated. When we arrived home the bomb exploded and left me in tears...Jon lost it because his toothbrush is missing. He called the toothbrush every awful name he knows and was coming unglued. I attempted to cue him to use the cooling down strategies and it didn't work. He escalated to a verbal rage. I quickly attempted to give him his evening meds to help calm him down. Usually I can easily get the meds in but this time he was trying to cough so the meds and his stomach contents would come back up and out of the tube and of course in my face. When that didn't work, while I was waiting for Shawn to bring me the syringe plunger so I could force the meds through Jon spit in my face. You can only imagine how it went from there... I am going to kill my mom. I hate her. I hate this mom. I hate this family.

I just left him in his room to scream horrible awful things. In the meantime the rest of my kids were reacting and having a hard time getting to bed. Josh was frustrated trying to express what he needed to share. No one was obeying. The stress level went through the rough. Shawn was frustrated and getting angry. And I stood there and with tears pouring felt an overwhelming need to run. Then the assaults started on my mind and my heart and the tears poured and all I could do was cry out for my Lord, the one who brings truth and comforts my aching heart.

These are those times when my world feels so incredible lonely. despite the amount of people who are there ready to support and help. It just hurts too much. Its paralyzing and in that moment there is really nothing any one can do but pray for me. pray for my family. Its a desperate feeling to all of sudden by spiraling down to the pit of despair and be screaming out for truth to rescue you.

In these moments though is when I know my Jesus more intimately than I have ever known him. These are the times when he whispers his love in my ear. When he takes the sword from my hand and tells me to stop fighting as he wraps his arms around me and holds me close. There with my head rested upon his chest, I am hidden from all the attacks. Sheltered from the lies. And his heart begins to beat truth back into my heart. His words tell me its ok. They tell me that he has a purpose. He tells me that I am more than ok. That he made me, he chose me, and he loves me. Jesus whispers the words that I long to hear...the words that free the secret desires and the unspoken longings. The words that tell me I am right where he wants me to be. The words that remind me that it is He, the great and mighty God, who is carrying me tonight in his strong and capable arms. My name is etched upon his hands. He can't forget me. He can't reject me. He can't leave me here to face this all alone.

Its times like this when I am at my weakest and am hurting the most that I know more than ever that I am truly his child.

2009-08-05T12:46:00.002-05:00

Thank you so much for all of your prayers for our family. For the moment, calm has returned and I hope that it will stick around for a little while. The kids start school next week. Jason, Josh, and Britt will be going to a brand new charter school. I have mixed feelings but I am sure, despite my personal sadness, that this is what is best for them. They need a life outside this house and a place of respite for themselves from this nasty disease. I know they will enjoy making new friends. I worry about many things educationally because they all three are a little behind, especially in reading and writing. This is because of the dyslexia. I think there is just a part of me that isn't looking forward to the battle that might be on the horizon as I advocate for them.

Britt was in tears of her spelling the other day. She is so worried that she will get an F. I told her we don't care as long she tries her best...but her perfection requires perfect scores. I think we may be in for a rough year. There is such a fine line of balance that lies in enabling them to deal with the real world and wanting to rescue from the pain of the cruel world that we live in.

So yes, school is going to bring relief and hours of quiet but it will bring new challenges, new time commitments, and even more on my already full plate. And just wait until the snow starts falling and I have to drive them to school...that's a story for another day...I just keep telling myself that it will be ok. I have to continually guard my mind against viewing them going to school as a sign of failure on my part or something stolen from me. I pray the Lord keeps reminding me that this is best for them.

On the other side, I am excited about having time just to spend with Jonathan and Mya. Jonathan made a lot of progress in school last year and I am hopeful that he will continue this year. Maybe even more since he will have my full attention. He is so eager to get started. I plan on having him go to Zach's Place or Mamaw's house once a week so I can have a day with just Mya or just by myself. I am learning how vital that is for us to survive.

Tomorrow we go to see the psychiatrist with Jonathan. I am taking Shawn with me as I fear this may not be the best appointment. I don't want this dr. to think that I am a difficult parent...just want him to understand that we have to do what's best for Jonathan and the entire family. As we have prayed about it, I feel as though the Lord is leading against the day treatment program. Instead, I feel as though he has shown me some other things to do instead. Some of this is scary for me because it may not work and I don't want to be wrong. And I don't want to say...God told me to do this and then have it fail...and give God a bad name. Does that make sense? Talk about having to grow in faith!!!

Basically, my plan is to saturate Jonathan in prayer and God's word first. I believe that God can change and minister to him despite his illness. I know when I spend time with the Lord my perspective is different, my ability to cope is greater, I am just changed by his presence. He is that powerful that just time with him changes us. I don't think this is the cure totally without any other changes...just feel led to trust God in a deeper way than I have in the past. This has been one of those areas that I for some strange reason really didn't believe that God's word remained true in . In addition to this we are changing some of the ways we parent and respond to his meltdowns. This involves teaching the entire family how to use cues to prevent episodes. Involves alot more attention and intervention on my part but worth it if it brings peace to our house. I am still researching how this all will work but already there is a change in my home. I think its because we are proactive and have quit being despondent.

Really no one knows what to do with Jonathan. But I am determined to not give up. I will keep trying anything and will keep seeking the Lord. He knows the answer!

We just finished the fourth cycle of chemo. 4 more to go! So far so good...but we will see how he is in a week or two when his counts start dropping. Please pray that as school starts that God will protect my kids from illness. Jonathan needs to stay well.

I will update tomorrow after the appointment.

2009-07-23T18:06:00.002-05:00

If the world spins fast enough, can you be thrown off of it? It certainly feels like that is what has happened to my world lately. Things have officially spun out of control. Right now, there are so many emotions flying around that I can't even go there...but I will let you know what we are facing right now. Overall, Jon is physically good. His blood counts are starting to suffer from his chemo. His platelets are quite low right now and the other levels are staying low. But we are pressing on with chemo next week. That makes me tired already just thinking about it!

The psychiatrist is trying his hardest to figure out what to do to help us. There are no easy answers and no easy explanantions. For right now, we are going to attempt to remove the medications he is on and start over. For reasons I don't quite understand they are thinking inpatient is not a possiblilty for this unless he completely loses it and ends up in the emergency room. Everything I have ever read or know of, recommends in these situations doing a med wash inpatient. So this makes me very nervous. At the same time I actually asked them to do this. Jon has been on medication since the year after his first surgery... so we really don't know what he would be like without them or with less or different meds. And at this point I am willing to do anything.

Unfortunately, the hardest part about the dr's plan is that they would also like to put him in a day treatment program. I am not sure how beneficial this would be but they want to try anything that might have the possibility of working. Its only a few weeks probably but it would require staying in Denver or driving back and forth every day. Worth it if there is a benefit but I just don't know that there will be. This possibilty has already caused great emotional turmoil. So I don't know what to do.

Please pray for us. We are already very emotionally spent, tired, and frustrated parents trying so hard to do what is best for all of our children. And honestly, I am not sure what that is anymore. My brain is on overload as the battle continues to rage. I need truth to hold on to...and this is the time when most of what is true goes out the door. So I am clinging to what I know is true...but my grip is slipping. Please keep praying.

2009-07-22T22:33:00.002-05:00

My heart feels like it is being torn in pieces. I don't know why but I am having a hard time coping these days. Feeling like an emotional roller coaster. I don't even know how to describe what is going on...just today several times over nothing Jon has erupted in a violent tangent of words mixed with biting or hurting himself. The conversation usually go like this: "I hate you, I hate you you stupid fat head brat jerk. Everyone hates me and I hate them. I want to kill everyone. No one makes me happy. I am going to dunk everyone in water and make them die.This family sucks. I don't want to be in this stupid sucky family. " Then moments later he is being "best brothers" with the one he just attacked. There is no trigger that can be avoided because everything is a trigger. My head is swimming in a desperate search for help and my heart is aching because I see this child and want to help him and can't. And I feel so awful for seeing death as his only way out. I want God to deliver him, heal him, and protect my other children. I know he can but I am having a hard time hanging onto his promise tonight.

I once wondered and told God that I would not deny him ever. I thought for sure I would be able to look at a gun pointed to my head and not deny my Lord. I knew I could take his word and love to anywhere risking my life and not shrink back. I prayed for opportunities to "prove" my commitment to my Jesus. I just had no idea that this would be the way I would be chosen to prove it...to face moment by moment this horror knowing that God could take it away at any moment but he doesn't because the He knows that his will is better than what I ask for. So though the tears pour, and I feel overwhelmed, tired, afraid, confused, and hurt I won't walk away from the one who endured so much more just to call me His.

Please pray for us tonight and through the weekend. I take Jon to Denver in the morning...sinus dr, oncology, and psychiatry. I am going in with my fighting shoes on.

2009-07-19T01:27:00.002-05:00

Its another late night for me! I am waiting for laundry to be done so I can finish packing...Brittney and Jason are going to camp again tomorrow. This time they have the incredible opportunity to attend Camp Eagle Lake through the Navigators/Glen Eyerie. This is so exciting!!!! We can not wait to hear what God will do through and in our children's lives this week.

The other kids are going to Mamaw camp for a couple of days. They too will have a wonderful time and will spriritually be nutured. I am so blessed to have a wonderful mother in law who takes her role as grandma seriously.

And I will be completely honest- I get to spend a couple of days with no kids. This is the one thing I am looking forward to the most. I am so ready for a small break to rest and refresh. I can't wait to sleep!!!!

Anyway, thanks to all of you who have prayed me through the past couple of days. Your prayers have been answered and the Lord is my truly proving himself to be faithful in being my strength.

2009-07-14T10:23:00.002-05:00

Reminders of God's grace, blessing, and sovereignty are flooding my life right now. I have no other way to explain it. Its been an intense ride these past few months with the Lord. Sometimes its hard to even put words to what He is doing. I just know he is alive and breathing life into me. I finally feel as though the Holy Spirit has centered my life in Christ and a peace that has been missing for so long has returned.

Its funny though that my heart feels so alive and so excited when circumstances have been and continue to be so bleak. This just further convinces me that intimate time with Jesus changes our perspective. My circumstances have not changed. But my outlook has. My child is still sick. The possibility of death still looms on the horizon. The destruction this horrible disease has brought into our lives still exists. Time with Jesus has transformed my perspective. What was nothing but defeat, failure, and sadness has become a challenge, adventure, and an opportunity to see just how big our God is and what He is able to accomplish.

Once Jonathan was diagnosed, I had pretty much accepted that there were things that we just would not do. So many dreams died that day. Recently, though the Lord has begun to show me that there is nothing impossible for Him. Why does this diagnosis have to change what God has called our family to do? Maybe it is just part of the plan. Maybe God wants to use this child in his way to reach people we could never have had the opportunity to reach had we not been walking this road. One of those dreams that "I" decided was to always be a thing of the past was missions. Those of you who know me, know that this is something that lies at the heart of who I am. Through a series of events and time with God, I believe that he is showing us that this dream is not impossible. I don't know anything more than that. I don't know if one day the Lord will allow us to return to the mission field to live there or just to go on short term trips. Or to lead others there. I just know we are to prepare. That is God's word to me now: to use this season of my life to prepare financially, spiritually, and physically.

What some of you might not know is that it is Jonathan's dream to go to Peru. When we were deciding where to go for his wish trip, the first thing he asked to do was go to Peru. We didn't go there but it has never stopped being something he says he wants to do. This child loves Spanish. And here we are in Colorado where there is a large population of Spanish speaking people and Jonathan seeks them out and sings Spanish worship songs to them. You should here him in the doctor's office's. Its incredible. So my prayer is that the Lord will make a way for us to take Jon to this country that he loves one day in the near future.

I am constantly reminded that God's ways are not my ways and I will be forever grateful for that. Sometimes it can be years before we actually see why the Lord chose things to be why they are. Sometimes all we get it is one word from the Lord guiding us and we have to choose to obey or to disobey that word. Sometimes it makes no sense and sometimes his way hurts. Sometimes he tells us no to something we really want or that we think is the best for us. I have been thinking lately about what might my life had been like if I had had my way and not God's way. Somethings are yet to be seen, but here is just one of those things I might have missed out on.

Special friends. God has worked a miracle lately. It is a picture of incredible grace, forgiveness and the working that only he could do. He has brought two families together that in all likelihood would have been the furthest from ever being friends much less share the connection that we do. There are five children in both of our families. The way our children have connected is so incredible that it is like God created them to be friends. Everyday that they are together blesses my heart because I see how God's no answer 15 years ago was in part because he was preparing in advance a yes answer to our prayers for friends for us and our children. See 16 years ago I was engaged to these other children's dad. We both thought that was God's way but God said no. Had we chosen to disobey, we wouldn't be enjoying the intimate fellowship that our families have today. I would not be experiencing the joy of the friendship with his wife. There would not be these 10 incredible children who God has an incredible plan for. The list goes on and on of how life would have been different had we not obeyed the simple no we were given.

There are so many ways. I am going to make a list soon so I can remember what God has done.
I better go get lunch ready. Thanks for sticking with me through this long post of random thinking.

2009-07-04T22:51:00.003-05:00

This article is something I am very passionate about.
Misdiagnosed: Knowing When and How to Advocate for Your Child

2009-07-04T10:06:00.003-05:00

There is so much going on that I would love to share with everyone... I just haven't gotten it all formulated in my brain yet. Still trying to digest it all. to say the least I have a new found joy and excitement that seems to be outweighing the bad days. I will share soon. I promise.

In the meantime, if you have a few minutes will you please click on the articles below. You don't have to read them unless you want to. I am trying to work diligently towards our goal of getting out of debt so we will be ready for what God wants us to do in the future. But since I can't really get a job outside of my home, I am trying to write as many articles as I can. In most cases they pay per view so I need as many views as I can get. Thank you for your help!

Gluten Free Chicken and Dumplings
Camping at Colorado Campground
Literary Motifs in Lord of the Rings: Return of the Kings
Photos of Manitou Lake in Woodland Park, Colorado
How to Make Good Bread Using a Bread Machine
How to Make a Rubber Duck Themed Baby Shower Cake
How to Make Gluten Free Chocolate Chip Cookies

2009-06-18T13:49:00.002-05:00

Here we are again...in Radiology waiting for Jon's MRI. I can't believe we are already 3 cycles into this treatment. Time seems to fly by sometimes. We start this cycle of chemo tonight. I guess you could say we are plugging along. I guess we don't have a choice but to wake up each morning and live the day we are given. Honestly, there are days when I would prefer not to wake up. But by the grace of God we make it through one more day. One more hour. One more minute.

Its been a rough week. Jonathan has entered a manic cycle again. This morning he was awake before 4 am. The melt downs are more frequent and more severe. The mood swings are almost constant. Its scary. I am not sure what we are going to do. The options are hard. Continue to live life the way we are and hope that everyone makes it through in one piece. Find some kind of respite that gets Jonathan out of the house during those high stress times of the day. Consider inpatient hospitalization until they can figure out how to stabilize him. These options scare me. I am not willing to give up yet. I can't relinquish my child to someone else. But still the problem remains...how are we all going to live through this and maintain some sanity.

One option that I have found that I am ok with is respite. The problem of respite is money. There is a facility here that Jon has gone to and does really well at. But even though it is on a sliding scale fee, it still amounts to more than I have. His medicaid waiver will pay for some respite but no one in town will take it because the reimbursement rate is so low. I am trying to figure out a way to work out Jon going at least three days a week during the summer to Zach's Place- the center that provides respite. It would probably cost $60 a week but it would be worth the cost if it prevented him from being hospitalized. It would be worth the benefit. The hospital is trying to help us out as well. Please pray with me that God will provide the money for this.

I am afraid that without some relief, our family is going to crumble. I have not felt this unable to cope with Jonathan in so long. It is such a tormenting, desperate feeling to need help and have no way of getting it. No one knows what to do to help him. The drs don't know. Medication is not working. I don't know how to explain it....yesterday, I felt so overwhelmed after 3 meltdowns. I just wanted to feel sorry for myself but I can't. I have to do something about it.

I know that God wants to use all of this for his glory. I know he has our best in mind. I know that his love is perfect and able to cast out my fear. I know all these things. I just need to see it. I am praying for God to open my eyes. I am praying for God to grant me his supernatural strength, his perspecitve, his peace, his patience, and his creativity. I know he will provide. He has to. He has allowed this disease to invade our lives, so I have to believe he has a plan and in his time he will deal with it.
Thank you for joining with us and supporting our family with you love, prayers, and encouragement.

2009-06-16T00:22:00.006-05:00

Fun with Friends and Family!!!!!
My sister and her three boys have been visiting with us for the past few weeks. It has been so much fun to be together and get to know each other better. Her husband finally arrived to spend this last week with us so we all got together for a night of fun. It was so special to all be together, along with several old friends from the past. All together we had 8 couples and 17 children!!! I could not have been any happier!

2009-06-16T00:08:00.006-05:00

Alex's Lemonade Stand
Our homeschool co-op did a lemonade stand for the Alex's lemonade stand event. They chose to do it in honor of Jonathan. We spent the day there with all of our friends. Jonathan was so excited to see his friends from school..especially one of his best friends Dakota.

2009-06-15T23:54:00.010-05:00

Some pictures from Camp Wapiyapi: I am waiting to get the pictures the kids took and the pictures from their companions. But here are a few of when we dropped the kids off.

2009-06-15T23:47:00.003-05:00

The Sweetest Hockey Player Ever.... this is from the last tournament a couple of weeks ago...gold medal winners!!!

2009-06-14T00:12:00.003-05:00

Its been a while since I have updated this blog. There has been so much going on. Unfortunately, there is so much I can't share. I want to. I want so badly to be able to put words to all that is going on in my life and my heart. Some things are best left unsaid. I am so thankful for all of you who have continued to pray for me and my family and to encourage me with your words even though you have had any idea what has been going on.

I want to tell you that we are ok. Its been an emotional roller coaster these past couple of months. A lot of stretching and growing spiritually. I am sure that as time goes on I will be able to share some of this. One thing is for sure... I am so thankful that God is my solid rock. He is unchanging and always a refuge for my wounded heart. Without him my heart would surely die.

The kids just had an incredible time at camp. The companions they each had could not have been chosen any better. They really touched my kids lives and from what we heard when we picked them up- my kids touched theirs. It brought tears to both of our eyes when we watched the interactions and heard the stories about how our kids "made" the camp, how incredible my kids were, how Jason kept everyone laughing and never stopped smiling. We all cried as we watched the kids and companions cry as they said goodbye. I am so thankful for this camp. I think in the near future these people and this camp will become even more important to my three "cancer" siblings. A lot of the companions are either siblings or survivors themselves. They have walked the road my three have to walk and I pray that somehow the influence of these new friends will make this road a little easier.

It was really hard for me when they came home. I wish there was a way we could live "camp life" all the time. Reality sucks. It really does. Within minutes of getting in the car, Jonathan began his melt downs, Jason began crying and had an outpouring of nastiness, and Josh erupted in anger. They were all so tired. But it was not the only reason for the nastiness...it was just a huge reminder of how living with this horrible disease and its aftermath has affected us all. I keep trying to figure out a way to rescue everyone. To help each person make it through this time unscathed. But I can't. And that is what makes this even harder. Its like watching mass destruction and knowing you are powerless to do anything. It feels like its getting harder and harder for me to cope with Jonathan. Joshua. Jason. and Brittney. I desperately need to be able to point them to the true rock because this mom will never be a rock that can be depended upon. I am crumbling.

I guess the details of the past few weeks don't matter so much. Its the lessons of obedience that really matter. That's what has been so emotionally hard lately. Lots of situations where I needed to obey God despite the outcome. Lots of risks. Lots of consequences. Sometimes following God is not easy. Sometimes you look like a fool. Sometimes God calls you to do something, and you take off in that direction only to have him change your path halfway through making you appear as though you truly didn't hear God right the first time. Sometimes you have to step out and be vulnerable even when the other person is not willing to be. Sometimes you have to stand up for whats right knowing it will cost you...maybe even cost you your siblings, your parents, your friends. Sometimes you have nothing left but knowing you heard God and that you obeyed him. sometimes you have to let go of another person and trust that God is able to rescue them. Sometimes obedience costs all you have.

So that's where I am tonight. Broken. Sad. Hurt. Tired. But totally confident in a God who can do far more than I could imagine.

2009-05-19T10:00:00.002-05:00

Even Now...He is in Control.
Life has turned upside down this week. Jonathan had chemo over the weekend. Overall, he did well with it. Now we just wait and let it do its job.

On Saturday I went to the YMCA with the kids.While in the pool, I realized that the diamond from my wedding ring was gone. I have no idea if it fell out in the pool or some other random place.

That evening I returned from running some errands and forgot to lock the car. Sometime in the evening, my purse was stolen from my car.
We went to the 8am service at church on Sunday morning and discovered the purse was gone when we went through the drive through at McDonalds. By the time we got home at 9:30 the thieves had already spent over $500.

What an experience this has been for the kids. They have been upset but it has been a neat opportunity to teach them that God is in Control even when it feels like he isn't it. I have loved showing them that no one can really steal my identity. They can take everything else but not who I really am, and definately not who I am in Christ.

The sweetest thing is this morning Josh said "Mom, you should bible study today. I tried to bible study and pray to Jesus about the robbers. " If this brings my children closer to Christ and closer to each other then it will be worth it.

Thank you all for your continued prayers...it has been a rough week. But we are pressing on.

2009-05-14T10:25:00.003-05:00

I was so blessed when I found out that our school co-op had decided to host an Alex's Lemonade Stand in honor of Jonathan. Please check out the link below and see what this is all about. Your donation will go towards finding a cure for childhood cancer. Thanks!
http://www.alexslemonade.org/events/pikes-peak-regional-homeschool-co-op

2009-05-12T08:29:00.001-05:00

Tumor was stable!!!! So we press on. Chemo begins Thursday night. More to come later... I must go now and prepare for my sister's get together/shower tonight. Its going to be so much fun.

2009-05-11T09:07:00.003-05:00

I have been promising an update for longer than week now. But life has been so crazy that I have not had time to just sit and write. So much has taken place in the past few days that I am not sure I can even adequately share. Jonathan is in MRI right now. Since I made myself leave Mya at home, I finally have some time alone. Its amazing how much easier it is to think when it is quiet and no one is calling your name constantly!

Today we are scanning Jon's brain. Its been about 4 weeks since we discovered his reoccurrence. Seems like it was forever ago. So much has happened. I don't know know what to expect the outcome to be today. I have learned over the course of the past 6 years not to go that far into the future. Too much energy is wasted...too many hopes dashed...too many needless worries. I have been wrong before... not too often but I have been. I do know that Jon is not right and I wouldn't be surprised if there is more growth. We talked about that last night...that's the worst possible news and even that is nothing we haven't heard before. So I am ready for whatever the word is... praying for the best, preparing for the worst.

It will be a busy day today. MRI for 45 minutes. Then to clinic for blood work and exam and to get the results of the MRI. Last will be a trip to the psychiatrist... which I hope will be done by noon so we can make it home before dinner!

We are blessed to have such an incredible team of doctors. Our head doctor genuinely cares about Jonathan and works hard to do everything possible. He gives me the comfort of knowing that he is ready to do whatever needs to be done for Jonathan. Our main nurse practitioner has become an emotional connection for me. She has truly entered into what life is like for us and each visit reaffirms to me that I am doing a good job. She listens to my gut feeling and offers reassurance and help. We all know Jonathan is complicated but they are not afraid of his complexity... instead they are helping to find answers. I know they have spent many hours on the phone with other professionals trying to find answers and that makes me feel at peace with their decisions. Our new psychiatrist, while I was not sure at first, has won my respect when he called me at 7:30 in the morning last week after reading my email to him. I know they care about my child. He is more than just another patient to them.

Many of you have asked about the appt with psychiatry from last week. Evidently, the secretary failed to complete the check in process so the doctor never knew we were there. I am too use to waiting for long hours at drs appointments so I really didn't think too much about it until the dr. came out and got his next patient- 2 hours past the time I had gotten there. They tried to reshedule me and I told them no. I told them I would wait until his next opening or he could see me at the end of the day but I was not leaving. Jonathan has been in a critical stay medically and psychiatrically and I was not leaving until I had some answers. Finally, we got in to see the dr. at 4:30 (we arrived at 1) and at first I honsestly wanted to cry. He started telling me how he thought Jonathan was having a reaction to too many meds. And how he was a conservative dr who although not afraid to use meds was much more conservative in his use. He informed me of all the risks of the medicines and the mortality rate. The entire time I was thinking- I waited this long for this... you have got to be kidding me! I totally know and understand the risks. I know that this medicine is going to affect and possible cause his lifespan to be cut short. But so is his cancer. So is the brain damage. So is the broken thypothalamus that causes his body to crash constantly. Come on, I am giving him poison every few weeks. Hoping it kills the cancer cells but knowing it kills many more things in its path. So honestly I am really not afraid of medicine that will possibly have bad long term affects if it will give my child a chance at quality life now. What good is it to live long if you are unable to function or to remain with your family who loves you.
Tough choices some of us parents have to make.

The appointment did end well though. We decided to try ativan in hopes that it would calm down the impulsive outburst and calm his brain. The dr. also decided to present Jonathan to the outpatien team of therapist and other specialist to see what if any therapy he would benefit from. He hopes that JOn could benefit from some rehab type behavior modification training. Not sure about that one but I will try anything. I did leave the appt though wishing I lived in Denver and not in Colorado Springs. They have a medical day treatment program here. It is school, therapy, and psych care all wrapped up in one. And is specifically for children with medical diagnosis. This could be one of the only opportunities Jonathan could have to go to school and be in a safe modified environment and it would give me the break along with the peace of mind. I am not willing for him to just go to this kind of program in the Springs because it would only be at a mental hospital. This is in the actual hospital so he would be with his specialist who know him. Since this is not an option right now, we are considering the other options such as therapy etc.

The ride home from Denver last week was awful. Halfway home, Jonathan got very angry and out of control when I told him we would have to go to bed when we got home ( we didn't get back until 9pm). He proceeded to draw lines down his arms from his elbows to his fingertips. He scratched deep scratches into his arms and stomach until they bled. He stabbed his pen into his shirt leaving holes. He said awful, hurtful, nasty things. Once we arrived home he continued to be destructive. He cut his shirt into shreds. Threatened to puke in his bed, pee and poop in his pullup etc. Then as I was getting his bed ready he walked up and smacked me. Dana and I had to hold him down so we could cut his fingernails so he wouldn't be able to hurt himself any more. It was a lovely night to say the least.

It was scary though. Because I realized once again the reality that unless we can help this child he may not be able to stay with us for much longer. And that hurts. Its a cruel decision to even have to contemplate.

We started the ativan the next day but it didn't go so well. He become very loopy and acted like a drunk person. His eyes became weird, his speech was slurred, he couldn't walk right. The next day I gave him only half a dose. Same thing. Adding to the complexity of the problem, he started running a fever. It was unclear whether we really were have a reaction to the ativan or if it was that he was sick and crashing and the meds were magnifying the problem. The next day I didn't give him any ativan and he was still fairly letharic and weird. So we held the ativan until he seemed healthy. Last night I gave him half the dose because he started to become very agitated and upset again. This time he did fine and did not get weird. So who knows. He keeps us guessing thats for sure.

I think his MRI is almost done so I better wrap this up. We start our second cycle of chemo again on Thursday night. Hopefully the craziness will subside until then. Thanks again to all of you for your love, your prayers, and your cards and all the stickers for Jonathan. I can tell you the stickers have been throughly enjoyed!

2009-05-02T10:51:00.002-05:00

Check out my new photography blog at www.throughtheireyesphotography.blogspot.com

2009-05-01T23:40:00.002-05:00

Sorry for my lack of posting. Its been a rough week and the last thing I have had energy for has been to relive the events of it through my blog. I am so grateful for all of you who have been checking in and praying for us and Jon. I know that God is answering those prayers...we are all still here!!!!

Jonathan has been in a manic state for the past couple of weeks. During these times he becomes so hard to live with. He is fixated on things, compulsive, obsessive, irrational, and explosive. We are averaging 20 melt downs a day over any little thing. I can't say no at all without it turning into a massive explosion. He is biting himself, scratching himself, and threatening to hurt himself and everyone else. He says the most awful things that remind us that this is this nasty disease and not our precious child.

We should have had a psych consult while he was inpatient. At least then we would have seen the dr. We have been on a waiting list to see psych for the past couple months. Finally, on Thursday we were able to get the urgency through to the drs. The psych dr. we needed to see was out of town but personally called and opened his schedule for Jon. So we finally have an appt. on May 14th. Should be a long day- chemo starts that day, mri is supposed to be scheduled, and then psych appt.

I am tired tonight so that's all for tonight.

2009-05-01T14:41:00.004-05:00

I am working on a new photography blog. I am hoping to supplement our income through photography. I need something I can do from home, with my kids, and around Jonathan's needs.
So, if you are looking for some pics to be done or if you know anyone in the Colorado area let me know!

2009-04-24T10:26:00.002-05:00

Jonathan's counts are still within acceptable range. They are dropping and some have dropped rapidly. I am hoping this is as far low as we will go. We talked to the dr. about getting psychiatric help...we have been on the wait list for months. Unfortunately, we should have asked for a consult when he was inpatient. Then they would have had to see him.

The doctor is going to be in touch with the psych drs and hopefully we will get a little more urgent action. She is going to tell them that we may have to admit him for psychiatric care if they can't see him soon. His melt downs are so frequent. Pray that he will adjust and calm down. Pray especially for Joshua- he reacts so angrily and has been so out of sorts himself. Rather than leaving Jon alone he tends to fight back and that escalates things. Please pray for peace in our house.

We go back next Thursday to see the sinus surgeon and the oncologist. Our next MRI and chemo cycle begins on May 14th. Thank you so much for your continued prayers.

2009-04-23T10:02:00.002-05:00

Thank you for your continued prayers. Its been a rough couple of days. Jonathan is having a hard time coping with being home from the hospital. The noise has been hard for him to deal with. I think he is in pain and can't deal as well with things. So we have been diffusing one melt down after another.

We are going to Denver today for our weekly count check and exam. I am going to ask them what to do about his outbursts. He threw up last night in his sleep. Not sure what is going on with that. I know that the fighting and emotions that are erupting every five minutes has to stop or I might lose my mind.

2009-04-20T22:39:00.002-05:00

Friends,
I know you are all curious about Jon. He is doing fairly well. He has remained stable all day after sinus surgery. So thank you all so much for you love and prayers for him.

I am sad to share that a great conflict has entered my life that I can not share. But I need to ask you my faithful prayer warriors to pray like crazy for God to intervene, for his love to abound, and for his power to be shown. I can't share more than that just please please pray.

Thank you!

2009-04-20T09:19:00.001-05:00

Jon is scheduled for sinus surgery today at 8:30.

2009-04-18T10:16:00.002-05:00

We are almost a week out from chemo. I am starting to see some of the side effects. Jon has had a headache every day. He is actually complaining of nausea now more that he did while taking the pills. He has a weird look to his eyes. I am not sure how to describe it other than it looks like he is looking through you. When you look at his eyes its like he is not there. His right eye is droopy more than normal and his left eye reminds me of how it was right after his brain surgery. Other than that though he is doing fairly well. He has mellowed out which makes me sad. You can tell he just doesn't feel well.

It has been a rough week. Seems that when it rains it pours around here. Joshua has an ear infection in both ears. Mya has cried and screamed the entire week and has not slept well. Driving home from Denver on Thursday was awful. We hit dense fog mixed with rain, snow, and hail. Since it was just me and 4 cranky children , it was quite stressful to me. Add to that the mixture of tears that had been building up for a week- its a miracle we made it home. As we pulled into town and made our last few turns, I heard a loud popping sound. Turns out the rear differential on my suburban went out. Thank God it happened so close to home! It is in the shop and hopefully will be fixed by the middle of the week. So much for having 4 wheel drive in the snow. =(

Adding to the already crazy events, I took Josh to the dr in the midst of the snow storm. Bravely, I drove to the store to get his prescription. I neglected to turn the lights off in the van while I was in the store. So I came out with the kids in an ice storm to a dead car. Thanks to Shawn and Kelly who came to my rescue- jumped my car and drove me home.

Thankfully the evening went better than the day. Thank you for praying. This journey has just begun and we need the strength of God to make it. I will share more later. I am going to try and get things back into order today. Forgive me if I don't answer the phone- I appreciate your calls and your love. I need a few days to refresh. Love you all.

2009-04-16T10:21:00.002-05:00

We are headed to Denver today to follow up with the oncologist. Jonathan finished chemo on Tuesday morning. We start again in a few weeks. We will check his blood counts today. If they are still high enough we will go ahead with the sinus surgery on Monday. This surgery is essential for Jonathan. Each time he gets another infection his body goes into crisis. Please pray that we can do the surgery.

Yesterday we saw the endocrinologist. He decided we will stop the anti-puberty shots and let Jon naturally progress into puberty now. My understanding is that we are hopeful he will grow at least a little if he goes into puberty. This is hard for me to swallow. He is growth hormone deficient. Without growth hormone, he is not growing at all. We were holding off puberty in hopes of doing growth hormone treatment so he could reach maximum growth potential. But now, he will not be able to have treatment for a long time, if ever. While such a small thing in light of all that is going on, it kind of felt like one more option gone. Kind of hit me like one more sign that he is not getting better. My perspective of course right now if off and quite sensitive.

Jon has also lost over 10 pounds in the past 3 weeks. He just isn't eating. I am so thankful for out lovely g-tube! I am thinking I am going to be mixing up some nutrients to pour down that thing.

Got to run get ready to go. I will update once I get back.

2009-04-13T15:24:00.001-05:00

Jonathan is home and doing well!

2009-04-12T08:25:00.001-05:00

For Sydney:

2009-04-12T08:18:00.001-05:00

What a difference today in Jonathan. His whole demeanor has changed. He is almost completely back to his normal self. It is so nice to see him smile and joke around. I am hopeful that they may let us go home today. But if not, it shouldn't be too much longer.

Thank you all so much for your prayers.

2009-04-12T00:27:00.002-05:00

This video is not the best quality but I thought I would still share it.

2009-04-12T00:23:00.003-05:00

Tonight after he finally woke up. Still not all better but definitely making progress.

2009-04-12T00:20:00.004-05:00

During the 7 hours of sleep today that had us all quite worried. He was very lethargic and not responding to us in conversation.

2009-04-12T00:04:00.007-05:00

My sister let me borrow her camera today when she came to visit...so I have some pics to share. These are from this morning when he was still pretty awake and with it.

2009-04-11T01:54:00.002-05:00

We just finished the midnight chemo dose. This one was really tough. He had a hard time after the first one. But the second one was awful. Shortly after he swallowed the pill, he began to freak out. Clawing his skin, crying and screaming that his ears hurt, his jaw hurts, his ankle hurts. It was awful to watch one minute he was ok the next it was like he was trying to crawl out of his skin.

The doctor came and we gave him ativan. Not sure if its a reaction or what. But in the morning we are going to crush the pill and see if it helps to take it in his g tube.

I am so glad that they listened and agreed to start the chemo here where they can see if there will be any bad reactions. Already there has been more than there was supposed to be to this pill. I would be so incredibly scared to have that happen at home.

Tonight during this episode was the first time that I have actually cried since the news. Its too much to watch and know you have to do it to keep your child alive. Please pray for me and Shawn to hear God's voice in all of this.

2009-04-10T22:13:00.002-05:00

I put this video together, at Shawn's suggestion, with the pics I had on my laptop here at the hospital. My brother in law's fellow troops in Iraq were wanting to see the boy who they are praying for.... so this is for them and for all of you! Thanks again for you love and prayers.