23 May 2009

Jonathan Charles McCormack 09/06/91 - 05/17/09

On Sunday morning, May 17th 2009, I was started awake by my wife's frantic cry "come quick, I think Jonathan is dead!" That day...those words...and the image of my oldest, beloved son's lifeless body on our couch, will forever be etched in my memory.

For those of you who were not aware of my son's situation, here is a brief overview of the situations leading up to this day of loss for our family.

Jonathan was born a normal child on Sept 6th 1991. He grew as a normal child with little to no health issues.

When he reached his pre-teen years, it was noticed that he was a bit thin, but it was never considered an issue or health problem. Due to the thinness and lack of much muscle structure he had issues with sports, having to quit baseball after one season.


When he was on the verge of his teen years, he participated in Karate for Christ, and accelerated fairly quickly up through the first few belt levels, enjoying being a part of the group. However, as the physical conditioning became more strenuous, it became evident, that his lack of very much muscle structure would hinder him again, and he was forced to discontinue participation.

As he his his teen years, he began being examined and treated by physicians at CHKD in an effort to determine if there were issues. At the time he was growing quite rapidly, but his weight was only in the low 70 pound range. While it was concern, it never seemed to be a major health concern by the doctors, but just assumed to be something he would eventually grow out of.

Over the new couple years as he continued to grow taller, he was not putting on additional weight in proper proportion. He was put on many, many special diets high in this, and high in that, and fattening with this, etc. Nothing seemed to work. But he continued on, unhindered, and with no other health issues during this time.

As an early teen he voluntarily took baby sitting classes and CPR at the YMCA and became the family baby sitter. He loved his siblings, and took care of them in the times when we were gone.

In late Sept 2008, he got a cold, and a cough that lasted for multiple days. Due to his lack of muscle structure in the chest, he was never able to cough hard enough to clear his lungs and he eventually contracted pneumonia.

He spent seven days in the hospital on anti-biotics for the pneumonia, and while there, the doctors and specialists restarted the barrage of testing to seek again to determine the weight gain issue. At this time, he was approximately 5' 11" and weighed only 82 lbs. They tried high calorie diets while he was in the hospital, but nothing helped at all.

After numerous tests, blood work, procedures, nothing was found to be an issue. Test after test returned normal. Normal, normal, normal.

He was released from the hospital after the pneumonia was gone, and continued follow up treatment with many of the specialists. He had an endoscopy exam of his stomach and upper intestines....no abnormalities found. He had a biopsy on his liver and intestines....no abnormalities. He had a thyroid exam...no abnormalities. He had more and more blood work....no abnormalities worth pursuing.

He ate just fine, usually eating more than most anyone else in the family. But no matter how much or how often or what he ate, his weight stayed the same.

In January 2009 we made plans to take him to a specialist in New York City. Prior to going, we went to a local specialist to have some preliminary special testing done, including food allergy testing (something the hospitals never did). This specialist told us the treatments we sought in NYC could be performed locally, and pointed us in the direction of another local nutritional type specialist where we began vitamin IV therapy to get nutrients right into his blood stream.

The various special tests returned showing that he had an extreme allergy to all things gluten and cow's milk (the very things the previous doctors had filled him with in an effort to fatten him up). A special gluten free diet was begun, and after a couple months, additional advanced blood and stool samples were performed (again, things not offered by any of the traditional doctors, and of course things not covered by our insurance). These tests determined that all harmful bacteria was now cleaned from his system, and it was just now a healing process for his intestines to overcome 17 years of damage from previously unknown food allergies.

He continued to eat large amounts of food, high calorie foods, etc. But month after month, he maintained a weight in the low 80's. He continued staying active, driving himself and his brother to school and other destinations when needed, up until the very end.

During the last month or two of his life, he became weaker and weaker and was unable to perform some of the basic chores around the house, something that was very frustrating to him, since he felt kind of useless as a helper.

In the month of May he became noticeably more tired. Spending most spare time on the couch dosing on and off through the day. This tiredness prohibited him from attending church the last two Lord's Day's of his life, and missing school the week before his death. He was scheduled to graduate from high school at the end of May, so the teachers assured us that his grades were fine, and that even if he missed the last week of school, it would not affect his grades or graduation.

On Saturday May 16th, on the way to one of his IV vitamin treatments, he mentioned to me that he had been having a bit more trouble in the past few days with breathing, mainly when lying flat down, or standing up (that explained why he seemed to for many weeks attempt to sleep sitting up with his head on his knees, in a semi fetal position) . It seemed harder to take deep breaths, like a tightness was around his chest. I immediately mentioned this to the nurse administering the IV (which Jonathan did not appreciate, since he had always gotten upset talking about his condition, and rarely even liked to share things...which frustrated us often).

The nurse said he would therefore have to see the doctor on this visit. The doctor did a overview check, and checked his blood oxygen level, and it was in the mid to high 80's (it should maintain the high 90's normally). He suggested we put him on oxygen to bring it up, and that would not only assist the nutritional therapy he was receiving, but would help him sleep better, and that within a week, he would feel like a new kid, having much more energy.

We left the office, and got home, contacted an oxygen supply company, had a machine delivered, and Jonathan was put on oxygen. Within an hour, his oxygen levels were maintaining 98.

I was on my way out the door for work I had to do that night, when Jonathan motioned to me to come to him. I went over and sat down beside him on the couch, and he threw his arms around me and laid his head on my shoulder. Jonathan was never much of a huggy-touchy boy in his teen life, I think mainly due to how he felt over his thinness. I asked him what was wrong, and he shook his head as to say nothing. After a short time, he loosened his hug, patted me on the back, as if to thank me (though never saying a word), and I told him "I love you son, you get some rest, you'll feel much better in the morning." He didn't say anything else to me, and I left.

I cried and prayed, and cried and prayed all the way to my destination. I called home 30 minutes later, told my wife to keep an eye on him, and asked how he was doing. He was fine, watching TV, and playing his DS games.

I called about 90 minutes later, asked how he was, and she said he had fallen to sleep shortly after my last call, and that he was sleeping lying down, and was not tossing like usual. She checked his oxygen blood level with the meter while he was sleeping, and it was maintaining 98, and his heart rate was also slower and more normal (since his heart was no longer working so hard to get the oxygen through his blood). So this was all great news for once.

I arrived home that evening at 2:30 AM. My wife met me at the door, telling me he was still asleep on the couch, and that she was sleeping on the couch next to him to keep an eye on him, to keep him from rolling off. She had checked him just shortly before I arrived home and all seemed still fine.

I came in after unloading, and at 3:00AM held his hand, and noticed his head move, so I left him, not wanting to wake him, and I went to my bedroom, leaving my wife to sleep on the couch next to him.

At around 7:00 AM, I was started awake by my wife yelling, "honey, come quick, I think Jonathan is dead." I rushed to his side, and he was pale, cold, and lifeless.

My wife later told me that after I left that night before, Jonathan had told her, "I think it is too late to fix me," and shortly after that he fell asleep...for the last time.

The unexpected out-of-the-ordinary hug he gave me, and some of the last words he said to his mother will forever make us wonder if he somehow knew it was the end of his earthly existence. His condition was never considered sever enough to have led to this early death, but we think he was just tired of all of the test, the depressing lack of finding any causes, and the inability to function and do the things he so wished he could do on his own.

I guess I was telling the truth when I told him before I left that he should get some rest, and that he would surely wake up feeling better tomorrow. He awoke in eternity, to the open arms of his heavenly Father. He is no longer weak, no longer thin, no longer unable to do the things he wanted. He is now healthy and strong, and happier than ever. I just long for the day when I can again throw my arms around him and love him like I so crave to do now. May we never take for granted the time we have with our family and friends, because we never know when it will end.

Jeff McCormack
Father of Jonathan Charles McCormack
9/6/91 - 5/17/09