Tuesday, May 29, 2007

This picture is from Jon's second surgery in March 2003. Its hard to believe that so much time is past...and yet this is still so much a part of our lives.
This poem was from another mom whose child also has a brain tumor. It sort of wraps up this experience almost perfectly. I had to share it here.
I hope you never have to hear the words“Your child has cancer”.
I hope you never have to hear“The prognosis is not good”.
I hope you never have to watch your childprepare to undergo chemo,have a “port” surgically implanted in their chest,be connected to an IV pole,look at you with fear in their eyes and say,“Don’t worry Mom, it’s going to be okay.”
I hope you never have to hold your child while they vomit green bile.
I hope you never have to feed them ice chips for lunch.
I hope you never have to watch the “cure” you pray forslowly take away your child’s identity, as they,lose their hair,become skeletal,develop severe acne,become barely able to walk or move,and look at you with hope in their eyes and say,“It’s going to be okay Mom.”
I hope you never have to stay in the hospital for weeks at a time,where there is no privacy, sleeping on a slab, your face to the wall,where you cry in muffled silence.
I hope you never have to see a mother,alone, huddled in a dark hospital corridor,crying quietly,after just being told “there’s nothing more we can do”.
I hope you never have to watch a family wandering aimlessly,minutes after their child’s body has been removed.
I hope you never have to use every bit it energy you have left,with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear overwhelm you.
I hope you never have to see your child’s head bolted to a tablewhile they receive radiation.
I hope that you never know what it is like to take your child home,(grateful but so afraid)in a wheelchair because the chemo has damaged their muscles,35 pound lighter,pale, bald and scarred.And they look at you with faith in their eyes and say,“It’s going to be okay Mom.”
I hope you never have to face the few friends that have stuck by you and hear them say,“Thank God it’s all over”because you know it will never be over.Your life becomes a whirl of doctors, blood tests and MRI’s,and you try to get your life back to normal while living in mind-numbing fear that any one of these tests could result in hearing the dreaded words:“The cancer has returned”.
And your friends become even fewer.
I hope you never have to experience any of these things.
Because only then.
Will you understand.
Carol Baan March 12, 2003 ©

Monday, May 28, 2007

Please Pray....
Friends, please pray for my sweet Jason this week. I need you to intercede with me on behalf of my precious child... for the temporary "band- aid" as well as a full and complete healing of his heart. The temporary and time sensitive request... please pray for his intense fear of the unknown and new to dissipate. We are supposed to get on a plane in a week and fly to Colorado. My sweet boy has cried and screamed for hours daily for the past week over the realization that he will have to fly. He wants to drive. He is adamant and he is very upset. But it is driven by a deep fear. This fear is flight related this time but it is a deep fear that rears itself whenever he faces the unknown. School field trips, a change of schedule- anything out of the ordinary sends him off. He reminds me of me... (that is another story but those of you who know me know what I am talking about).
Originally when we planned this trip we were going to fly. But I had strong misgiving about it... mainly because I was not sure I wanted to be on a plane for hours with my children and other people and not be able to get off... you know if they are going to have moments of less then desirable behavior then let it be when we are in the privacy of our own vehicle. Also, at the time Jon was taking growth hormone and I was going to have to travel with needles and liquid medicine... a security nightmare. So we were going to drive... then the tumor growth news came and gas prices went sky high and we were not going to go at all. But then it worked out to fly... so here we are... plane tickets and a hysterical child.
So friends... pray he will get on that plane next Tuesday without one little ounce of fear or terror stricken reaction. Please...
Please also intercede for the deeper matters of his heart. Pray that God will break through and set him free and heal his little heart. My heart is so broken and frustrated at the same time. I don't know how to help him. He is so angry. He is convinced no one loves him or likes him. He thinks he never gets his way and everyone else does. His behavior and outbursts at times drive a wedge between me and my husband... my loyalty for both is torn in two. Please intercede for him. Pray for us as his parents to know what God wants us to do. Pray for us to know how to respond. How to show him God. Pray for the appeal of "evil" to be broken in his life.
Oh, if I could just turn back the days and hold them in my arms again as infants. I would have done so many things differently. But I can't... today is what I have. Tonight as he screamed and cried my heart was so tormented... I cried out to God like I haven't done in so long. I cried out loud to him with my arms wrapped around my child. I placed Jason is his arms and begged him to bring healing. I asked God to bring peace to my home. I asked the Holy Spirit to permeate every space in my home. I spoke God's word to him... words of courage and no fear. As I cried over my precious child and offered him to the Lord, he quieted and fell asleep in my arms. God does hear my cry and he will do all he promises.

Wednesday, May 23, 2007

I have one excuse for my absence from this blog recently: I have been cleaning. For those of you who know me you will recognize this as a code word for stress. Anytime that you walk into my house and furniture is moved you will know I am stressed. The real test is to look in my laundry room...if it is neat and ordered then I am really overwhelmed. Funny, isn't it?

I figured out a while ago that I automatically go into this mode because it is the one thing I can control about my life. And the laundry room is the one room that doesn't matter but is the most easily mastered. So every few weeks my house undergoes a makeover...

Its a good thing. My stress reliever often results in purging of clutter, organization and order,fresh coats of paint and a new perspective. Many hours of quiet conversation with the Lord that somehow refreshes my soul and gives me the strength to make it through another day.

To all of you who are still waiting replies to your emails or who have called or made offers to help, I am sorry. I promise to come out of hiding soon!

The above picture is Jon's official baseball picture. I am going to have prayer cards made I think. If any of you would like to have one and you are not already on my mail list please post in the comment section and I will add you. I think it will be handy to have several of these to give to people as we meet. I want this experience to be used by God and maybe this blog can be used to point people to Christ as they come to check on Jon.

This has been a roller coaster week for me. My husband is out of town so I think that is adding to my weariness. An overwhelming sense of responsibility floods over me and makes me feel so inadequate for the role I have been given to play in this life. Sometimes it is torture to consider all that has happened in my life and wonder if I have wasted so much time. I think back and wonder where I went wrong. What happened that turned my heart to stone? But yet I feel my heart beat and I feel emotions and a desire to serve God as he desires so I know it can't be all stone, right?

I want to be wholly devoted to Christ. I don't want to be one who throws her hands up and says I quit just when things get tough. Just last night I was brought to the point of tears and utter exasperation over a locked door. Oh, I just want to be consistently able to display the character of God in my life, in all things. I want to teach my children the truths in God's word. I want to show them how to embrace all God has given them and to live adventurous passionate lives for Christ...but I can't even seem to get past brushing their teeth and feeding them three meals a day... I know God will be faithful. I know he will mold me and change me into his likeness as I abide... I just need to abide.

I realized that if I don't abide I have nothing to offer. Apart from Christ, nothing can be done. Really, there is nothing to say if I haven't sat at the feet of Christ and gained his perspective, his words. Anything else will only be depressing...so my friends, I commit to sit at the feet of Christ today. Come sit there with me....

Tuesday, May 15, 2007

So Far So Good!

We sailed through the second treatment and so far no bad side effects. I am praising God for that tonight. I can tell though that Jon is not feeling too great because he is not able to go to sleep easily. Several times today he has cried over little insignificant things. Please pray that this doesn't run into full blown manic/ psychotic behavior. Every time Jon gets sick he gets all out of wack and the whole house is turned upside down.
This picture was taken yesterday in our yard. See, he still looks good!!!!

We have begun the official countdown until our trip to Colorado. Only three more weeks!!!! The kids are so excited. We are flying so it should be a much easier trip then it would have been to drive. Everyone, except for Jason, is excited about the flight. Jason prefers to stay firmly on the ground. In fact he would prefer to never step foot out of his house. But that is another story.

Josh has spent hours on the computer looking at the website of the campground where we are going to stay. He is making big plans- but he is sad to know that he can't take his bike on the plane. He says his bike will be sad with out him and he will miss him.
It is so quiet in my house tonight... I almost hate to go to bed. It is so nice when the stillness takes over and I have time to just think. It is so wonderful.... Have a great night everyone!

Sunday, May 13, 2007

Treatment Number Two...
Please pray for us in the morning. Jon has three appts all before 9 am!!! Two are just follow ups from the previous surgeries. Then we head to the clinic and get our second chemo treatment. I am not sure what they will do about the symptoms Jon is having- probably just watch him closely again and go from there.
Thanks for your prayers for a smooth morning. I need it to be... I am too tired for anything crazy to happen!
I Will Lift My Eyes
Written by Bebo Norman and Jason Ingram

God, my God, I cry out
Your beloved needs You now
God, be near, calm my fearAnd take my doubt
Your kindness is what pulls me up
Your love is all that draws me in

I will lift my eyes to the Maker
Of the mountains I can’t climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You

God, my God, let Mercy sing
Her melody over me
God, right here all I bring
Is all of me‘Cause You are and You were and You will be forever
The Lover I need to save me
‘Cause You fashioned the earth and You hold it together,
God So hold me now

© 2006 Appstreet Music (ASCAP) / New Spring (ASCAP). All rights for the world on behalf of Appstreet Music (ASCAP) administered by New Spring (ASCAP). / Peertunes, Ltd./GrangeHill Music/J Ingram (SESAC)
I never knew being grown up would hurt so much.
This email was sent to me by a friend who has child also has a mental illness. Together we have experienced many of the things this email talk about. I wanted to post it so that those of you who maybe don't experience these things on a daily basis can have a glimpse into our lives.

These things have really bothered me the past few days. As some of you know, Jon has permanent brain damage resulting in mood disorders/ bipolar illness. In addition to dealing with his illness and all that involves, my other children have been affected. Each one has varying degrees of emotional damage. Over the past few days I have come to realize that my children will never be like other kids. They may never be as calm or well behaved as other kids. They may have melt downs, say inappropriate things, talk non stop, fight for the attention of every person they meet. Our home will always be a mess- cluttered by Jon's unending collections of bottle tops, pencil tops, crayon shavings, marbles, and paper cut into a million pieces and scattered over ever inch of my living room floor. They are loud, wild, emotional and very sensitive to being left out or excluded or chosen last. They may watch too much tv. They may never be "normal" but maybe that is a blessing in disguise. Maybe they are better off because of it.
I realized though that its not what they are doing that bothers me so much...its how people react to them. Its how I think people view me. What their opinion is of me. Its trying so hard to control them so that we are not left out and still feeling left out anyway. I just don't think even those close to me realize how much everything that has happened in the past few years have impacted us all. I realized that I need to focus on the hearts of my children and not care so much what the world thinks.

Their hearts: they are full of love for others. They are the first to pick up on sadness. They are the first to reach out to those who are unlovely, disabled, or left out. They see no color or disability only people. They have an eternal view of life that many children never grasp. They are full of energy and life- living each day to its fullest. They have a relationship with Jesus that goes beyond ritualistic religious practice- they have learned how to cry out to Jesus when they feel sad, scared, lonely, and when mommy can't fill the void. They may talk your ear off but I can promise you if you give them just one minute you will be blessed- you will feel loved, you will beautiful, you will feel full.

So please the next time you see us at our worst don't turn the other way. Consider that my children may not respond the same way as other children- they have seen and felt so much more than others. They live with the reality that one day they could lose their brother. They have faced death more than any child should have to. Their worlds have been turned upside down. Please don't make judgements. Please don't walk away because you don't know what to do or say. Please just try to be our friends.

I am sorry. I know this is a sad downer to put here... I wish I could write this big spiritually uplifting post about how blessed I am to be a mom... I am... I know I am. I am trying to feel blessed. I am trying to rise out of the sadness that has descended upon my heart. Right now I wish I could be like the rest of the world and walk away. Run away. Of course, the real part of me- would actually run away with my husband and my children to a deserted island away from all the pain!

Thank you for praying for me and my family. I know it is God's strength that will allow me to get up one more day and press on in loving these precious gifts I have been given.

Subject: In Honor of Mothers and Fathers of Bipolar Children
You are receiving this email from The Bipolar Child because you subscribed on our website. To ensure that you continue to receive emails from us, add newsletters@bipolarchild.com to your address book today. If you haven't done so already, click to confirm your interest in receiving email campaigns from us. You may unsubscribe if you no longer wish to receive our emails.

The Bipolar Child NewsletterMay 2007, Vol. 24Janice Papolos and Demitri F. Papolos, M.D.In Honor of Mothers and Fathers of Bipolar ChildrenAdditional News: New DVD and 2-CD Audio Set 24: A Day in the Life of Bipolar Children and Their Families Available in Two Weeks!

In our book, and in almost every newsletter we write, we talk constantly about the burdens that parents of children with bipolar disorder must shoulder and overcome, all the while attempting to make decisions with the clinicians who work in an area of medicine that is still in its infancy. But we've never composed a stand-alone list that lets others look at what the parents must grapple with and withstand--in all its stark and disturbing reality. This list, sadly, cannot even be described as "exhaustive or complete," but as Mother's Day approaches, and Father's Day is just a calendar turn away, the parents coping with a child (or children) with bipolar disorder deserve special recognition and honor for their enormous valor as they:

Look at a very young and much-loved child with a nagging fear that something is seriously wrong.

Feel the external world bearing down on them, advising them to take multiple parenting classes or to tune into Nanny 911.
Feel infantilized and ashamed as people offer up criticism and advice.

Accept that they need help from a professional, but feel a stranglehold of fear.

Come to learn that there are only 4,101 child psychiatrists in the entire United States--many wary of making this diagnosis.

Watch their child and other siblings besieged by an illness for which there is little diagnostic or treatment consensus in the field of psychiatry.

Receive multiple diagnoses such as ADHD, OCD, ODD, PDD, anxiety disorder, or simple depression.

Come to accept that the child has a very serious psychiatric illness and make the agonizing decision to begin a trial of medications (if they can find a psychiatrist who can treat their child, or who has open hours).

Read the package inserts of medications which list possible side effects, as well as frightening black-box labels, and watch apprehensively for any signs of serious trouble such as lithium toxicity, tardive dyskinesia, Stevens-Johnson syndrome, new-onset type-II diabetes, or pancreatitis.

Attempt to explain to a child how the doctor is trying to help and what the medications are going to do; subsequently they watch their child experience distressing early side effects that include nausea and diarrhea and severe drowsiness; or worse, the paradoxical effects that produce the opposite reaction of what the drug is being used to treat.

Deal with the disillusionment of a failed medication trial and explain to that child why those pills didn't work and tell him or her: "We're going to try something else," knowing that they may have to repeat that phrase a number of times and thus begin a new round of side effects.

Have to get a child who has a needle phobia to a lab for a blood draw to determine drug levels. (This experience alone could turn one's hair grey.)

Watch children's weight balloon upward and their self-esteem plummet as they take certain medications that can be very effective, but that may also cause weight gain.

Become an all too familiar face at the pharmacy, experiencing shock at the cost of each prescription.

Have to suffer the ignorance of people in the media, who--in a cavalier manner--discuss over-diagnosis and over-medication. Moreover, these parents hear certain clinicians in the field publicly utter insulting sound bites such as: "This is an easy way for parents to let themselves off the hook;" or "This is simply the diagnosis du jour."

Have to listen to the word "No!" from a child one hundred times each morning, but be unable to assert the parental "No" as it will predictably trigger a meltdown.

Suffer the physical abuse of a child raging out of control, and experience crippling shame because they can't manage their own child.

Are set adrift in a house that has become a war zone.

Deal with feelings that alternate from extreme anger at the child to the most unbelievable yearning to help that child, from anger at the outside world for failing to realize what is happening to them, to exhaustion in trying to deal with the child with some modicum of equanimity.

Become perplexed that their child often does well in the outside world, only to return to the safe harbor of home to rage at a parent (most often the mother), leading to the suspicions of outsiders that "Something must be going on in that household, and with that woman;" or "She seems so nice, but you never really know people;" or "He can keep it together at school, so he must be a very manipulative kid."

Have to mount a siege each school-day morning simply to get a child suffering a sleep/wake reversal up and out to school.

Hesitate to answer a phone, afraid that it will be the vice-principal in charge of disciplinary action calling to report an "incident" at school.

Come close to earning a degree in educational law so as to work with the school system. Keep in constant contact with the teachers and psychologist or aide in order to assess what's working and where yet another accommodation may help.

Waylay careers and reduce household income so a parent can stay at home to deal with the child and spend hours at doctors' and therapists' and tutors' offices.

Experience the heartbreak of knowing that their child is rarely invited to birthday parties. Conversely, if he or she is invited, the event might be overstimulating thus provoking some kind of meltdown, and effectively putting an end to any such celebrations in the future.

Fear that their child will become aggressive with kids on the playground or in the neighborhood, thus earning disdain and a cold shoulder from the other parents.

Want the world to understand, but fear that the stigma will further isolate the child and their family.
Attempt to explain the almost inexplicable to the siblings, and to help them cope with the chaos in the household. Feel overwhelming guilt that the family is always fractured as one parent goes to a soccer game while the other stays home with the unstable child; or that a rare dinner at a restaurant devolves into an embarrassing, abruptly-ended event as parents race the child and siblings home and away from disapproving diners.

Are paralyzed if a child becomes manic and hypersexual and says inappropriate things or makes inappropriate gestures.

See their marriages become shaky as the stress of coping with this illness leaves parents little time to relate to each other and most conversations begin to center around the problems of their ill child.

Listen with horror as their child screams, "I don't want to live anymore;" or "I'd be better off dead."

It is hard to fathom how these parents get through a day. Their reality is simply unimaginable to the outside world, and their lives--until their children are stable--are a virtual stew of guilt and powerlessness, anxiety, fear, uncertainty, confusion, blame, and shame. These are feelings that most of us would do anything to avoid, but all are feelings that a family who lives with bipolar disorder must endure for months and years at a time. And yet, we see family after family find the help, learn to cope, steady their footing, and move on with their lives. And then we see them turn around and offer a lifeline of information and support to others who must walk the same path, only now no longer alone.Some people think of Mother's and Father's Day as Hallmark holidays; but we see them as an opportunity to celebrate these parents: their grit and their commitment, their love and their humanity....Parents who have never stopped trying to help their children--against seemingly overwhelming odds.

Thursday, May 10, 2007

Thank you for your prayers for Jon these past couple of days. He did snap out of his "cold" spell and warm back up. He has done incredibly well this week- of course true to how it always goes with him he became one of the 5 in 100 kids who have vomiting with this chemo. Thats the way it seems with him- if it isn't supposed to happen it will and if it is it won't. Go figure.

He participated in field day today with his class. It is always so neat to watch the way the kids interact with him. He has a special group of kids who really reach out to him and love on him. It was scorching here though so we only stayed a little while.

Just a quick note for all of you- the other kids are part of a program called Supersibs. They send the kids things to encourage them as the siblings of a child with cancer. Sometimes the sick child gets all the attention, gifts, and cards. So this organization goes out of their way to make the siblings feel special in their role. You can find out more at www.supersibs.org Brittney and Jason have their very own care pages. If you have a minute go visit their pages and support them.

Go to carepages.com

Brittney's page is brittybearsplace

Jason's page is joyfulshark

Thanks! This will mean a lot to them.

Tuesday, May 08, 2007

Please pray for Jon this morning. He is hypothermic again and quite lethargic. I am not sure if the chemo is making it worse or not. Just pray for him to warm up and to feel better. Thanks!

Monday, May 07, 2007

One Down...51 more to go!!!!

Jonathan's first chemo treatment has come and gone! We made it through the first day. You all would have been so proud of him. The morning started out with a Lupron shot. This shot is given monthly to stop puberty from coming upon us too soon. He smoothly sailed through that one... not one tear. This shot is pretty painful but the interaction with the nurses numbs the pain and uplifts Jon's spirit. Once he was in clinic he barely flinched when they accessed his port. He has grown up a lot since we were last here.

Josh and Jon were given several little gifts from the clown wagon as we entered the hospital. These things make going to the hospital so much more fun ( but it makes mom's job a little harder when we go to other places that don't so willingly offer presents in vast amounts!!!!)

Thank you to all of you who have prayed for this first visit. My fears and guarded heart was melted by the greeting we received. It was like coming home... God knew I needed this. My struggle with going here or Atlanta dissolved... it was nice to be in a place where everyone called me by my first name, greeted my children with hugs and sweet memories, and looked at me with the sympathetic, caring look that comes when words can't express the feelings that accompany a relapse. The sweetest gift of the morning was our favorite nurse who cared for Jonathan in ICU when he was first diagnosed is now working in the clinic. She took care of us today and it was such a blessing to be with someone who loves the Lord as much as I do. She is one of my "heroes" who I would like to be like one day when I am in the medical profession. So thank you friends for you prayers.

God has answered my prayers today...for peace in the midst of chaos, reassurance, strength, and wisdom. The doctor took extra precautions and pre-medicated Jon for nausea so he sailed through the day. He even went and played baseball tonight!!!!

I will update more as the week goes on. Thanks for your friendship and prayers.
This morning during my quiet time I listened to Chip Ingram's teaching: Experiencing God When You Are Gripped By Fear. You can listen to it as well by clicking on the link for Life on The Edge. You will be refreshed and strengthened for whatever the day holds.

The passage, Psalm 46, that Chip teaches from is incredible. As I am preparing to take Jonathan this morning to the clinic to begin his chemotherapy, God is preparing my heart through his word. Let me share with you this passage and some thoughts from Chip's teaching that really encouraged me.

Psalm 46:

God is our refuge and strength,
A very present help in trouble.
Therefore we will not fear,
Though the earth be removed,
And though the the mountain be carried into the midst of the sea;
Though its waters roar and the be troubled,
Though the mountains shake with its swelling.

There is a river whose streams shall make glad the city of God
The holy place of the tabernacle of the Most High
God is in the midst of her, she shall not be moved;
God shall help her, just at the break of dawn
The nations raged, the kingdoms were moved;
He uttered His voice, the earth melted.

The Lord of hosts is with us
The God of Jacob is our refuge

Come, behold the works of the Lord
Who has made desolations in the earth
He makes wars cease to the end of the earth
He breaks the bow and cuts the spear in two
He burns the chariot in the fire.

Be still and know that I am God
I will be exalted among the nations
I will be exalted in the earth!
The Lord of hosts in with us
The God of Jacob is our refuge.

Notes from Chip's teaching:
1) God is Our Refuge and Strength
* If everything we know we can count on is removed from our lives it doesn't matter because God is consistent. (shown by the mountains falling) God alone is our security.
* We don't have to be afraid because God is for us. He is not against us. He is not waiting for me to mess up so he can say " Told you so..."
*He is my refuge: a place where I can run to and be ok. God says he will be our refuge- we can come into him and he will wrap his arms around us.
* He is my strength: power to endure. Grace given moment by moment in the measure we need.
*He is readily available in trouble no matter how great.

How does this work?

1) God's presence is the reason for my hope. He goes through the circumstance with us and he will sustain us through it.
* unlimited supply of joy, protection,security and deliverance even in the midst of the most difficult trouble.

Today, I find my heart strengthened knowing God will walk into that clinic today. Not only is he with me but he is with my child. He is our joy,our protection, our security, and our deliverance. May each of you know the presence of God today.

Thursday, May 03, 2007

Jonathan will start chemo Monday. He is recovering well from surgery. Thank you for your continued prayers.

Tuesday, May 01, 2007

Originally written last night but finished today....

“ For My thoughts are not your thoughts, Nor are your ways My ways,” says the LORD.
Isaiah 55:8

This verse has been like a favorite song that gets stuck in your mind and just keeps replaying itself today. I just can't get the tune out of mind. Not that I want to... the words in this verse carried me through what could have been a difficult, trying, and depressing day. The peace that passes understanding descended upon me and was like a soft pillow upon which to rest my head.
Truly, God's word is alive!

There are so many thoughts going through my mind. This is going to be a long post... I will warn you now. I need to sort through and record all that God is doing. I don't want to lose this opportunity. I used to journal alot. Almost everyday in my quiet time I would journal my prayers. When Jon got sick I stopped journaling. I just didn't want to remember. Writing it down probably would have made things seem so real... as if they weren't already real anyway! Unfortunately my effort not to remember left me with painful memories and a whole lot less of the sweet nuggets that were given during this time. I know God wants to use this...I want to be able to go back and show how faithful God was during this time.

My most favorite author was a missionary to India, Amy Charmichael. She wrote a little book called "He said, She said". It is a dialog between Amy and God. It is basically a discussion of what she wanted or thought was best and what God's answer was. I think I am going to copy her "layout" method with my thoughts/God's thoughts. I hope that you will be as blessed as I was to see how God's way truly was best. I hope that as you all read you will be challenged and inspired. And I hope that you will be encouraged as we are... I know just the thought of what is happening to Jon is heartbreaking. But there is so much to be gleaned from this. And we know that eternity awaits... that is what Jonathan and his family are living for. "For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. " Romans 8:18 The following are just a few of my thoughts and God's response.

My Thoughts:

Will we have to do this alone? Lord, most of the people who walked this road with us are gone. How will we do this without friends? Please Lord I need a friend. I need help, yes, but Lord, we need friends more than anything. Thats what got us through the first time. You are enough Lord, you are. I know that you want to be all we need. I know when my heart is filled up with you, you will provide all we need. But Lord, I am so scared to be alone. My heart has been hurt and so sad and so lonely. I don't think I can "relive" another memory with the good part of the memory removed.

His Way:

Child, You must accept that what I choose for you is best. My choices will always be enough. My way will fill you completely. Until you grasp this truth, your heart will remain empty. You will continue to long for and seek after what I cannot give you- My heart is set upon doing good for you. If you fight for your way,you will not see what I give you for what it is: a gift that is created especially for you. I have defined who is the best friend you. I have chosen the perfect time to meet your needs. I have given you all that you need. Trust me. Trust me even though you cry. I know it hurts but trust that I have the best for you.

The past two days have been lived with this perspective. Where I would usually tell God what I needed or wanted, I instead prayed for God to give me what he wanted. What he felt was best for me. I know God longs to pour out his blessing upon me so especially these past 2 days I looked diligently for his hand in my circumstances. Lest someone think I'm warped let me say when you face theis kind of thing you have to find God and his goodness in everything or else you won't survive. Here are some of the blessings the past 2 days have held:

  • I need a friend. I begged God for friends. I pleaded with him for a place to belong. In my mind I had it all planned out and was feeling very sad knowing that those I wanted would probably not be running to my rescue. Choosing to see this through God's way, God had already provided friends. I just didn't realize it. Just in the past several weeks a strained relationship began the process of being healed, I reconnected with an old friend over coffee and icecream, I felt the warmth as that friend reached out and touched my heart in a tangible way, I ran into a friend from the past who had disappeared (quite literally) and smiled as I saw the work God was doing in her life as well as the chance at a new friendship, and a friend from an unexpected place appeared right in time to be used greatly as a blessing to me in the past 2 days as she ministered to me and then cared for Joshua all day. None of these people fit the description I was looking for when I begged God for a friend...but they are so perfect for me. His answer was so much better and touched me so much deeper than any choice I could have made on my own.
  • We are afraid of being alone. I thought for sure, with Shawn being gone I was bound to be a loner today. I was so tempted to find someone to come to the hospital but I felt like God would provide as I needed. I woke up with this aniticpation of God doing great things and showing me great things. I went to the hospital saying God I can't wait to see what surprises are waiting for me today! No sooner was I in the parking garage then my phone rang. My brother in law was calling to find out where I was because one of the pastor's was waiting for me inside. From the very beginning, God orchastrated me not being alone for a minute! The pastor that came had no idea how much this meant to me... it is a big deal to me to have people come and pray over my child. It is a HUGE deal to have people with us and surround us during these times. I think sometimes people may think this is old hat for us and that we don't need that support anymore. I want desperately for people to come to our side just like they did that very first time. So many of you have reached out and for that I am so grateful. The pastor that came went beyond the call of duty....he came to pray, but he also held my feverish baby for almost 3 hours while she slept!
  • Due to our new dietary needs with celiac and food allergies, Jon and I are not able to eat food that the hospital has. Usually Shawn takes care of the food. If he is not with me I just don't eat since I won't leave Jon alone in the room. But my mom so lovingly went to get me food....she drove all over the east side of Town looking for a chick-fil-a...she got lost and prayed for direction and BOLDLY arrived at the hospital!!! Her company was a blessing until she left to get the three other kiddos. Every possible need was provided for. My mom has been a constant support for me...she has cared for my children with a moments notice, helped me clean my house, and been my friend. I have been so blessed.
  • The surgery was four hours late starting. God's hand was in this as well. I have had some anxiety over moving Jon's care to Knoxville vs. Atlanta. I have tried hard to surrender these fears to God and trust that he will work in this situation. Due to the delay, we went to play in the playroom. The oncologist came in for another patient and saw us. I was able to talk to him a little bit about Jonathan and get some of my questions answered. The "first"encounter was over and I had some direction.
  • Mya woke up with a 103 degree fever. My friend and doctor let me bring her in on my way to the hospital. She wisked us right back to the exam room and found the culprit: ear infection!!! With a powerful antibiotic shot we were on our way and even made it with time to spare.
  • The greatest gift of peace for my "mama" heart came last night. Close to 9 pm the oncologist in Atlanta called. She spent 45 minutes on the phone with me. We went through his whole history together as she was writing a letter to send to every one of his doctors. She answered my questions about his port (the surgeon who put it in was cranky and a man of few words so he didn't explain anything), talked more in depth about the chemo, gave us her permission to go on vacation, and set up a conversation with the endo doctor here so we could make some changes in meds. Best of all, she assured me she would stay involved and that we were going to go through this together. When I am a doctor I want to be just like her!

There are so many more things but if I don't post this now I never will... for now I better go check on Josh who has a migraine... or in his words "he bruised his mind"!

The finished product... he is all orange from a new type of betadine. Headed to the bathtub right now!!!1

JON'S THE MAN!!!!!!!
Thank you all for your prayers. The surgery was successful and went well. There were NO complications. We were home only three hours after surgery. I will post more tonight. I have to get the kids to bed but wanted you all to know: All is Well!!!!