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.

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.

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

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.

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.

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

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.

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!

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

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.

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!

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.

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.

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!

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

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.

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.

Jonathan is home and doing well!

For Sydney:

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.

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

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

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

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.

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.

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.

We just talked to our nurse practitioner from oncology. Jon has stabilized and he is maintaining his temperature. I have asked for one of two things to happen:

1. If we are going to stay in the hospital, I would like him to start his chemo now. That way we would know if there was going to be destabilization after the treatment.

2. If we are not going to start it until Monday, I want them to let me take him home. I can manage his needs right now. And I know how to get back to the hospital.

So now we are waiting for them to decide. Pray we can go home today. That would be the best thing for our whole family.

Shawn and Jonathan are sleeping downstairs in the PICU. Mya is sleeping next to me in our sleep room down a few floors. I am thankful for this room tonight. It is the first time I have had a private place for the past few days. The minute Shawn walked out to go sleep with Jon, the weight of all today has held crashed in upon me. I don't want to cry. Not sure I will be able to stop.

Like photographs in my mind and on my heart, so many encounters today came together in this new chapter of our story. The pages of today's paragraph are soaked with tears.

Moments like these:

The oncologist looking into the door and motioning me to come out to him. The moment I saw his face and he asked if we could take a walk I knew what was wrong. Sitting next to him as he gently shared what was happening, all the treatment options, and the possibilities of what could happen with each poison we would put in Jonathan's body, I kept wanting to tell him to stop. I didn't need to know all the details. I wanted to cry. I wanted to call my husband. I dreaded calling my husband. Now the past two times that we have been told this awful news I have been alone. There is nothing worse than being the one calling with the news or being the one on the other line hearing it though the phone.

In this moment though I could hear the Lord reassuring me that HE was here.

I went back in the room and told Jonathan what was happening. His response was classic Jonathan: " Aw...man..." but like a simple child full of so much simple trust and faith he went right back to his stickers, glitter, glue, and coloring. Oh, how I wish I could be like him- able to take each bad thing that comes my way with such faith. He didn't need to worry. He knew his mom and dad and the doctors would take care of those things. He looked at what was coming and looked beyond the circumstances to the future....of course in this case it was STICKERS. He told Shawn basically it was ok to have to do chemo again becuase he really likes the stickers he gets.

In this moment, I saw a glimpse into how it could be in my relationship with my heavenly Father. Sure things really stink at times. They hurt. They disappoint. They leave us scared. But my Father in heaven wants me to know I can trust him to have it all under control. Despite the circumstances his love and his faithfulness never changes.

I have been so blown away by how God has provided us with so much support. My precious sister in law who lives far away had already arranged meals for my family by the time I arrived in Denver. My phone has been ringing off the hook and text messages have flooded me with so much love and support. Friends from everywhere are praying and I know that God hears. Tonight my "second mom" came up and stayed at the hospital with Jon so Shawn and I could go eat. This was such a blessing. I am in awe.

Even here God has reminded me that he will provide for our every need.

Tonight my heart broke as I saw the tears in my husband's eyes. He looked at me and said, " I wonder how long we really have left with him." We talked about how much guilt we would feel if he were to die. Life with him has been hard. Sometimes we get frustrated. Somethimes we don't always respond to Jon the way we should. We do the best we can but sometimes it just doesn't feel like it is enough.

Through my husband's tears, I was reminded how God is able to guard our minds and give peace that passes understanding. I don't know why we were chosen for this path. I don't understand why this happens. I don't really know. I just know that God is in control and he loves us and our children more than we could ever know.

This afternoon the sweetest EEG tech came back to check on Jon's EEG. She brought him a card and present. Jonathan had been painting ceramic figures last night while she was hooking up the EEG machine. She went home and painted 2 figures for Jon and brought them too him. He gave her one of his figures. He had touched her heart in the short time he had with her.

In that moment, my eyes were open to the benefit of this present suffering on eternity. God uses Jonathan to bring people to Jesus. Even in the midst of sad news, God reminded me how he could use this to touch many people. If one person comes to Christ it will all be worth it.

What an unexpected chain of events today has held! The moment the oncologist walked in the door and motioned for me to come out with him in the hallway, I knew what he was going to say. I think we all are slightly in shock. After all, we had a completely stable scan just 3 weeks ago. This tumor is not supposed to grow fast...but it is.

So in just a matter of moments, our whole world has changed once again.

Once Jon is stable they will be moving him out of ICU to the oncology floor. His oncologist will take over his care. Once he feels he is stable enough, we will begin his chemotherapy. Even if he is not stable, we will begin no later than Monday. The hope is that his white counts will remain stable enough to be able to still have his sinus surgery on the 20th. We have to be able to treat both things or we will keep crashing.

For now we are going to do an oral chemotherapy. It will be 4 days of intense therapy that I can give him at home. Then we will be off until day 28 then start the 4 days again. This will repeat for 8 cycles. If the tumor responds we will continue with this treatment. If it doesn't we are looking at possibly doing a biopsy and radiation. At this moment I am not open for any type of brain surgery. Radiation is a possible treatment but we want to wait and try all other options first so we can protect his brain.

I will keep updating this blog and facebook as often as I can. Thank you all for you love, prayers and support. You are all so appreciated.

It takes a lot to freak me out. I am officially starting to freak. Something is wrong. I know it in my heart. I know something is not right. I just don't know what. I feel like Jon's brain is crashing. I am having a hard time getting this across. His nurse is wonderful and is listening. But I am feeling helpless.

Pray for wisdom. For the doctors. For me. Pray for me to be assertive and fight for answers. Pray I will know what to fight for.

This is scary. This is when I feel the most frustrated. And when I get angry. And when I desperately need to feel the arms of Jesus around us. Because I don't understand.

Back in Tennessee, our precious friend Sydney is fighting her battle with cancer and has just undergone a painful surgery. I don't understand. I hate that these kids have to face this pain and fear. I don't get it.

The only thing I do get is that it breaks the heart of my God as well. It was not meant to be this way. While I don't understand why he allows this in their lives when he could take it away, I understand one thing...if there was a better way he would. I have to believe that God in his sovereignty knows what he is doing and that it is done out of an incredible love that supersedes our understanding.

Please keep praying for Jon and for Sydney.

I finally gave in. After watching Jonathan over the past few days, I called the doctor to ask what the protocol was for hypothermia. Jon has had an average temp of 90 to 91 degrees for the past three days. His speech has been slurred. He is confused and disoriented. He generally is not feeling well. He has a nasty sinus infection and junk in his lungs. This morning when he woke up his arms and hands were a purple/gray color and ice cold.

So today on my way to Woodland Park to visit a friend, I thought I would just call the dr and ask. They tried to return my call twice but couldn't get through due to bad reception in the mountains. So my husband got this phone call telling him I needed to take Jon to the ER. I tried really hard not to take him. I called 2 other drs. I tried to reason with them. But it didn't work.

So here we are. I must say that I am glad we came. Its not that I didn't trust the drs. Or that I didn't really believe he needed to come. Honestly, I was afraid. My mind did a flash back to the only other time I have ever been to the emergency room at this hospital. It was one of the days that we realized that something was terribly wrong with him just days before we got the brain tumor diagnosis. It was a paralyzing memory. Walking into what felt like an inner city, run down ER lobby where everything was covered with bullet proof glass and security. The wait was going to be hours long. And true to his form, Jonathan was miraculously better the minute we walked in. It didn't take long before we walked out- Left without Being Seen stamped across our paper work. I was definitely not going to be seen. We were going home to Tennessee- whatever was wrong he would be ok until we got there.

The last thing I wanted to do was relive that experience alone. Thank God I swallowed my fear and allowed Him to be my courage. I have been pleasantly surprised. This hospital recently joined with the Children's Hospital in Denver. So they now have a pediatric ER. We were seen immediately. Every one of the doctors and nurses were incredible. It is good to know that there is a good place minutes from our house to go should things like this arise. The doctor took Jonathan's situation very seriously and has admitted him to ICU. Its nice to know I am not crazy. Its nice to know that they are in charge now!

So I am not sure what they area actually calling this episode. In mommy language, Jonathan got very sick while we were in Tennessee. He is not recovering very well. His brain is kind of crashing on us. Right now they are trying to treat the sinus infection and chest infection with IV antibiotics. They are giving him IV hydrocortisone to help his body recover. We are dumping fluid into him...he is quite dehydrated. He has a warming blanket under him to keep his temp above 95. He has oxygen going since he keeps forgetting to breathe when he sleeps. His eyes keep twitching and shaking...that kind of bothers me...especially since his body is warm now. I am not sure what is going on. He is still quite confused. And he is not really acting like Jonathan.

But it will be ok. We have a big God. We have great, aggressive doctors taking care of him. We have an incredible team of doctors who never cease to amaze me. We have a wonderful family who make all of this easier. Thank you all for your continued prayers.

Please pray for Sydney. She is Jonathan's friend from clinic in Tennessee. Sydney is fighting an awful disease. She has recently begun to show signs of new disease. My heart is breaking for her and her family. Pray for a miracle. God is the only one who can rescue her.

Joshua. My precious child. Life has been difficult for him. In the midst of the challenges, he brings so much joy and life to our family. He is non stop life....always moving, exploring, creating, laughing. I love this child.

I think he got a little stressed out during our trip to Tennessee. Its so hard to always be good. Its been hard to settle back down into our normal routine.

Yesterday, though, this precious child blew us away with his simple child like faith. Every morning since we have been home he has started the morning very early and very loud, resulting in very annoyed parents. Yesterday was very different. It was very quiet. Joshua didn't come in the bedroom until he heard us awake. Then he announced, " Last night when I went to bed I prayed for Jesus to take away the bad words and the bad behavior."

Melt my heart. I was so humbled. And so proud. The entire day he was a different child. Calm. Pleasant. A joy to be around. The old Josh. And how he beamed when we told him how good he was being. And when we told others he was sure to point out that he asked Jesus to take away the bad and He did!

We spent lots of time with our cousins at Granny's house. The kids enjoyed playing together again.
They even made a time capsule and buried in the yard. These are the pictures of the things they chose to put in the capsule.

Jonathan got very sick during our trip. He should have gone to the ER but we just kept watching him, hydrating him, and giving him meds. Turns out that on top of everything else he has developed some sort of asthmatic reaction to Tennessee. He enjoyed seeing everyone but unfortunately was so sick that his visiting was not very lively! He spent most of the week asleep, even while sitting up.

Brittney and her friends had several special times together while we were in Knoxville. Honestly, it was the hardest to watch Brittney spend time with these special friends. There just was not enough time during the trip for her to be with them as much as she wanted. I am so thankful for these girls and the part they play in Britt's life. I pray that her life will always be full of these kinds of special lifelong friendships.

Spring is coming. We are looking forward to going to Tennessee in a few days, where I hear Spring has already sprung. I love to watch creation come alive again after a period of rest. Its such a picture of our walk with Christ.

I'm leaving in a couple of hours for Denver with Jonathan. We are meeting with anesthesia to discuss his needs for his upcoming surgery. He will have his MRI around 3:15. We will meet with the oncologist right after the MRI and hopefully be home in time for church.

I am fairly certain that Jonathan's recent issues are all part of this sinus mess he can't get rid of. His speech is so slurred that it is hard to understand him. It takes a lot of mental energy just to understand what he is saying. He is counting down the days until his surgery. He hopes it will finally make him feel better.

I will post again as soon as I have the MRI results.

While you are praying for Jon, please add his special friend Sydney to your prayers. The two of them spent many hours playing together during their trips to oncology clinic. She is having scans done today due to a possible reoccurance of her cancer. Thank you for your faithfulness to pray for our kiddos.

Jonathan had an appointment on Tuesday with a sinus specialist in Denver. After seeing Jonathan and talking with the doctor. here who did his most recent sinus surgery, the doctor feels he needs to have another surgery. As much as I hate for him to go through another painful procedure, I have to agree with the doctor.

The child's nose is a mess. His septum is so deviated that the nasal passage is too narrow for the smallest instrument they had in the office. His CT scan is nasty looking. His ear is infected because of all the inflammation and infection. On top of all this, Jonathan is unstable with his moods. It always happens when he is sick. Without fail. But knowing this does not make it any easier.

We are in the process of getting surgery scheduled. Most likely, we will wait until we return from Tennessee. He is scheduled for his 3 month MRI scan on March 18th. Please pray for Jonathan- for the surgery to be successful, for his scan to be stable, and for him to get into the psychiatry office in Denver as soon as possible. I am attempting to get his care transferred there so that we will have continuity of care with all the doctors should he require inpatient care to stabilize his moods.

Thank you all for being there, for praying for us, and for loving us.

I have fallen in love all over again with my Lord. The walls around my heart crumbled at the sound of a quiet whisper of truth. With that truth the ice melted and tears of joy and sorrow flooded my soul. For the first time in a long time, tears flowed and threatened to never end. I felt like the Grinch who's heart went from being too small to suddenly about to burst.

There are not adequate words to even begin to describe the work that has been going on in my heart for the past few months. The best picture is that of a pure gentle lover romancing the heart of the one he loves. Tonight was similar to that of a wedding- when the groom sings over the bride having won her heart and becomes one with it. The most incredible part of this picture though is the patience and gentleness that the groom has displayed...because this bride has not been an easy one to win.

It has seemed, almost daily, the lover of my soul has sent me small tokens of his love. He has written his love for me in quiet ways that only I could notice. He has spoken his truth over my heart, patiently waiting for it to penetrate and soak in. I can't even begin to list all the ways Jesus has fought for my heart. One of the most recent, came this past Sunday. During a vow renewal ceremony, I was reminded of my marriage and the love of my husband. This was a wonderful opportunity for us. But God used this simple ceremony to speak something even deeper to me. All of the wives were given a single rose. When I was handed a white rose, I immediately knew that Jesus was speaking healing to my heart. He spoke truth to me in a way that only he could. "You are pure before me" " This, my love, is how I see you." If you know me and the things that I have been struggling with lately you will know how huge this was for me.

After weeks of wooing my heart and softening it, the Lord chose tonight to speak the most profound truth to my heart. During a prayer and praise service, the Lord used the pastor to speak into my heart. I didn't expect what I heard. I didn't think there was anyway there could be something the Lord wanted to say to me tonight. The pastor encouraged us to give to Jesus whatever was keeping us from being intimate with him. At once, I heard the Lord say, "You took your heart away."

Tears come now just thinking about this. You see, on the night that my son was diagnosed with a brain tumor and came face to face with death, the Lord clearly spoke to me and asked me for my heart. He asked me to place my heart in his hands for a awhile. He told me it would be ok. He told me to trust him with my heart. That he was going to use this but that he needed my heart.

I didn't have to give him my heart. But at that moment I could picture myself placing my heart in the hands of Almighty God. And his promise has never been far from my mind. For a while I was willing to let God use this life shattering, heart crushing circumstance for his glory. Many of you were touched by it, encouraged by it, and even saved through it. I wanted to be used of God in this miracle.

But time has gone on and that promise feels further away than ever. I know God was not promising to heal my child or to restore our lives to pre-diagnosis state. He had promised that He IS good. He does what is best. And He can be trusted. I saw then that his tears mixed with mine as he held my heart in his hands. Somewhere along the line though, I stopped even wanting to be used. I didn't want to trust anymore. I didn't like this plan. And I took my heart away.

I didn't want life to be like this. I didn't want my dreams crushed. I didn't want to wake up each morning desperately loving this child who was no longer the child I knew. I didn't want to feel the conflict of loving him so much yet feeling so tired and overwhelmed with the damage that it is almost unbearable. I had my whole life planned out and it certainly didn't have anything to do with this. It certainly was not going to include giving my heart to someone who would let pain and suffering go on for so long with no end in sight. But the other side of this truth is that I also didn't really want anyone but God to have my heart. So the part of me that all of you have seen for so long has been the one who knows that God is the only way. There is no where else to go, no one else to run to. But it has also been one who is only half-heartedly following after the Lord. I have been holding my heart in my own hands.

For awhile though I have sensed that this whole issue goes even deeper than just Jonathan's illness and all that has been lost. This is what I think God has been sifting through with me gently in the past few weeks. Recently parts of my past have been blown in like an unexpected storm. I didn't see it coming at first. Then when I saw it on the horizon, I tried to run and avoid it. My heart said no. My Lord said yes. Thankfully, I obeyed. It is because of this that we are in the church we are in. Because of this church that God is finally being able to break through and rescue us. So like most storms there is turbulent weather but new life following the rain. I wasn't sure and at times am still not sure how the Lord wanted me to deal with this. I just kept feeling like he was telling me not to run but to seek him through it. That there had to be some greater purpose - because this was way too weird to be anything but God's orchestrating. Tonight I realized one of those reasons...Everytime I fail, I take my heart away. Everytime I believe God can never use me. What lies that have held me in bondage! And what joy to be free.

So tonight as tears ran down my face and would not stop, we sang a song so perfectly chosen- " I give you my heart". For the first time in a long time my heart truly sang those words to my Lord. And tonight with a greater understanding of what it really means I placed my heart back into the hands of God.

I have been in a reminiscent mood lately. It seems life circumstances have driven me to reflect on where I have been and what God has done in my life and the lives of others around me. It has been such a rewarding journey as I have found so many journal entries that have reassured me of the love of Jesus in my life. I have been reminded at how BIG our God is. I have been comforted by and grateful that He is God and I am not!

This morning I came across something I had written following a Sunday morning service at our church, Fellowship Bible, back in Knoxville. It was at that church that God had begun healing my heart and bringing me back to an intimate relationship with him. I wanted to share it with you all. I am not sure when I wrote it but I think it was over a year and a half ago. I hope it will bless and encourage you.




Today, as I sat listening to the word of God being taught, I felt a simple truth planting itself in my heart. I love it when God takes a piece of scripture and makes it real and applicable to our lives. We may have read the verse numerous times in the past but today it has jumped off the page and imprinted itself on our hearts.
The message taking root in my heart today came from Matthew 14:22-32. This is the story of Jesus walking on water. Peter asks Jesus to call Peter out to Jesus. Jesus calls and Peter steps out and walks on the water. As the pastor shared this familiar story, the Holy Spirit made the connection between what I was hearing and the truth I have pondered recently.
The past several weeks have been filled with a lot of study, thought, and prayer for me. I have come to a point in my spiritual life where I had to choose if I was going to give my all to God or turn and walk the other way. I thank God he enabled my heart to see and embrace the truth and find complete surrender. Almost overnight my heart went from constant turmoil to an almost perfect peace. As I have reflected on what is still happening in my heart, I have been considering the process that occurs when a believer returns to God after a time of sin. Two points stand out in this scenario. First is the way the believer responds to failure. The second is God’s response to failure.
A believer’s response to their sin and feelings of failure directly affects the intimacy they share with God. While our sin causes a temporary break in fellowship with God, I think it is the feeling of failure which causes our hearts to pull away from the intimacy God desires people to have with Him. Once we begin to dwell on the failure to obey, failure to serve, or failure to be faithful to God then we have opened the door for Satan to pull us away. As we have just studied, Satan will use anything to prevent us from being used by God. He is a mastermind at planting thoughts of defeat and discouragement in out hearts. One very popular and sadly successful thought is that of, “What’s the point? I will never be what God wants me to be. I will never be able to reach the standard. So why even try?” So with sadness of heart many of us accept defeat and hang our heads and walk away. We may still go to church, read our bibles, and come to bible study but our hearts are intimately separated from God.
On the other hand, God’s response is the exact opposite of ours. While our sin causes a break in our fellowship with Him, it doesn’t change how God feels about us. Our continued sin puts us in a position of discipline- a fact that only proves God’s love for us further. Feelings of failure do not come from God. The Holy Spirit convicts us of our sin and leads us to repentance. The Holy Spirit leads us through brokenness so that we can be restored to intimacy with God. Separation takes place not because God moves away from us but because we have moved away from God in choosing sin. God’s forgiveness and restoration is instantaneous. The moment we turn from sin and back to God we are restored. God never says “I am sorry, you failed.” He never says,”you went too far this time. I can never use you again.” God never decides that we are no longer good enough to be his. This is such an awesome thing about God. Since God chose to save us when we were sinners, nothing we do can make God love us more. God loved us at our worst.
The passage from Matthew illustrates this perfectly. The disciples are in the midst of a storm and they begin to be taken over with fear. All of sudden Jesus appears. He is walking on the water towards the disciples. Still overwhelmed with fear, the disciples do not recognize Jesus. Jesus calls out to the disciples and tells them not to fear because it is Jesus. Peter calls out to Jesus and asks Jesus to call Peter out to him on the water. Jesus does and Peter begins to walk on the water. Unfortunately, Peter takes his eyes off of Jesus and noticing the waves begins to sink. Peter cries out to Jesus and immediately Jesus takes his hand and pulls Peter out of the water.
My heart became so excited when I read this passage and listened to the pastor because I saw myself in it. My life had become a raging storm. Jesus had give me a place of safety and told me to stay there for the duration of the storm. For a while, riding in the boat while it was tossed around by the waves was easy. I could trust God that he would make things right. I could believe that he would use my pain to reach others. I was able to rest in the fact that no matter what the storm looked like on the outside, with one word, my Lord could restore peace. I knew that no matter how fierce the wind blew and the waves crashed, I would not drown. Jesus had not promised that I would not get wet; just that I would not be overtaken.
Time passed and it seemed that storm would never end. My heart cried out to God and reminded him that I didn’t think this was too funny. The isolation of being alone in the boat was making me crazy. The constant waves crashing and wind blowing began to invade my heart with fear and anger. Why did Jesus make me get in this boat and then just leave me here? Why is he not doing what he promised? With the fear and the pain, my heart began to rebel and I decided I was not so sure I wanted to be in this boat anymore. I wanted to jump out, swim to shore, and run the other way. Before long I found myself sliding down into a life that was marked more with sin and bitterness then that of a follower of Christ. I chose to doubt Jesus would ever come and bring the storm to an end. This made me angry so I decided I would not be used by God. I would still have half hearted quiet times and sometimes go to church. After all, I knew enough about God and the alternative to serving him to not want to walk away completely. But I soon learned that I can’t keep one foot in the boat and one foot in the water. Each wave that came would send me flying over the edge. Did this happen because God said, “Get out of the boat. You are a failure. I don’t want to be with you anymore.”? No, I got knocked over because I chose to be double minded, tossed about in the storm.
Then Jesus came. I was in a desperate state. A moment longer and I might have committed spiritual suicide. Jesus always comes at the right moment. My heart, despite my sin of doubt and double mindedness, knew my Lord’s voice. I heard him call me and speak his truth into my soul. My heart asked if there was anyway he could still love me and want me and use me. In a moment he called me to come to him. I left my sin (a picture of confession and repentance) and put both feet on the water and walked to my Lord. For a few short moments, I was able to see nothing but the love my Jesus had for me. His hands outstretched, he longed for intimacy with me. He didn’t remember my sins from just moments ago. All that was gone and all that remained was the uniting of my heart with his once again.
Despite the presence of Jesus, the storm still raged around me. As the waves crashed into me, I could hear the accusing voices hidden in them. “Who do you think you are? You really think Jesus is going to want to be with you? Do you really think he can use when you have been so unfaithful? You will never be able to be good enough. He doesn’t really love you. Don’t you remember what you were doing last night? Remember those friends you went out with? Remember the family you led astray?” On and on the accusations hit me. Soon the noise reminding me of my failure drowned out the voice of Jesus calling me to his arms. Deeper in despair I began to sink. I could see where I needed to get to get to Jesus and realized I would never be able to get there. This realization took my faith away. I was drowning.
The truth was, though, I did not want to drown. I wanted desperately to be in the arms of Jesus. I didn’t want to be sinking in the despair of my sin. I didn’t know what to do. Thank God that he sent the Holy Spirit who protects us until the day we are brought to heaven. The Holy Spirit reminded me of the love of God. He reminded me that I just had to call out to Jesus. I only had to believe the truth. Out of desperate determination to not be destroyed I cried out to Jesus to help me.
This is where we see one of the most amazing things about the character of God. Immediately, when we cry out to God he reaches down and pulls us out. He pulls us to his side and carries us back to the boat. There is nothing we have to do before Jesus saves us from drowning. No good works, no amount of quiet times, no period of time without sin. All we have to do is call out, “Help me Jesus”. He restores us to the place where he wants us. There may be consequences… we are wet, cold, vulnerable, and humbled. We may be gently reminded of how we got where we got. Even the gently question, “Why did you have such little faith?” displays the loving heart of a father who wants us to learn from our sin. It is not meant to drive us back into failure mode. Jesus wants me to recognize my weakness so the next time I want to put one foot overboard I will cry for help before I even get to the water.
Notice that the passage says Jesus and Peter went back to the boat. Once they arrived and were in the boat the storm stopped. Peace filled their world and their hearts. I think this is exactly what God does in out hearts. He allows to come to a point where we fall and cry for help. We see how far away from our Lord we have wandered. God, in his love, breaks us and brings us to repentance. In a moment’s time, he then restores us and speaks peace over our hearts. There is no room for the despairing, suffocating feelings of failure that accompanies our guilt of sin. Rather, Jesus longs for us to grasp the truth. He came to save sinners. Once we are saved, we become clean in his sight. We will at times choose to sin rather than obey. In these times, the Holy Spirit will bring us to repentance and God will restore us. He will use our times of weakness to strengthen others. Even a life full of sin, once broken and restored, can be used greatly in God’s kingdom. God’s focus is not on what you were or are; it is on what He has done. Accept his love for you. Leave failure at the bottom of the sea and be lifted, by his love, back into the boat. There you will feel the peace of God surround you and set you free.