Not in Control

“He’s just going to die- there’s no cure,” a doctor told , explaining my son has cystic fibrosis.Imagine someone saying that after giving birth 9 weeks prior. Not just anyone,either, but a doctor – one who is used to delivering this kind of news and apparently finds it an easy task after all these years diagnosing children. Perhaps he had become immune. I don’t know.

Thus began my journey to keep my son from dying. Never stopped

Micah today- doing well and happily married .
Micah today- doing well and happily married .

to think it was not in my power to keep Micah from dying. It was God’s deal. Why did he choose me? Why did he choose Micah? Why did I wonder that? I was so angry with God. So angry that any child would be diagnosed with any disease and the parents having to hear what the doctor god had to say- hearing the death sentence pronounced on a helpless, innocent baby.

I call him the doctor god because he came across as if he knew everything about everything. He made pronouncements about our baby- about other’s babies. Condemning them to death, perhaps  because he really felt helpless to do anything for him. But, it was never his deal. It was God’s deal. It still is.

Cystic Fibrosis (CF) is a disease of the lung and endocrine system . The mucous found in all of our bodies are usually thin and slippery. In a child with CF, this mucous is thick, sticky and loves hanging out in the lungs of these kids. Pneumonia is rampant and scar tissue forms. The pancreas, seemingly lazy, is just really not equipped to digests fats in the diet and digestive enzymes are needed to digest food. Breathing treatments must be employed to keep the lungs clear and mucous free. Some kids have low lung function, making it difficult to breathe and sometimes gasping instead.

My baby boy was very sick the first year of his life. I was told on his birthday the first year the doctors had not thought he would live that long. Not even a year! The life span used to be 10 years old. Then 16. Now, the life span of a child with CF may be over 35 years. I knew a man who was about 80 when he passed away. He had not been diagnosed with the disease until he was in his 30’s. CF is unpredictable. Some kids may not live long at all, some may live a long, almost symptom-free life. It’s still God’s deal.

I began to explore my thoughts about why God allows these things to happen. I believe things happen for a reason. For me, I came to the conclusion this baby was sent to teach me how to take the the spotlight off me because it’s not all about Paula. He was sent to teach me patience and acceptance and love – real, unconditional, frightening, risky love. Risky. The risk of losing my boy was all too real. I knew that the love would never be lost even though I was afraid to put my heart on the line for him. How could I not love him- he drew me in- and I couldn’t help but love him .

I am grateful God sent me this amazing young man. It’s been hard at times, but my son has lived and thrived when they said he wouldn’t.  He graduated elementary, jr. high and then high school. He’s funny and smart and funny some more. He’s taught me to loosen up, lighten up and enjoy every minute of life. Most of the time now, I can do that. I did not do that before him.

I’ve said it before and I’ll say it again- God puts people in our lives – loans them to us- to teach us things we may not otherwise bother to learn. Sometimes, it takes dire circumstances to learn the things we must, the things we should . It was so for me.

Thank you God for giving me a sweet reminder of You in my son, Micah.

It’s Funny- Not Funny HaHa, Funny Odd

I have three children- 2 sons and 1 daughter.One of my sons, my youngest, Micah,  has Cystic Fibrosis. If you have never heard of Cystic Fibrosis, I would not be surprised. I’ll give you a quick  summary. Here goes:

We all have mucous in our bodies. “Normal” bodies have mucous that is thin and slippery and is throughout our bodies. A child with Cystic Fibrosis (CF) has mucous in his/her body that is very thick and sticky. When the mucous is thick and sticky, it clogs organs such as the lungs, the pancreas, the liver. A child sweats profusely, cannot digest food properly, does not usually gain weight well , gets  lung infections, pneumonia and the like often . The mucous, because it sticks to the lungs during infection causes the lungs to scar and the child or young adult to lose lung function. Some people with CF get lung transplants because of this. Some are too sick to transplant and some don’t want transplants. There is no cure as yet, although the medication breakthroughs have been tremendous of late. For many children and young adults (and occasionally old guys)- well, they die young. 

So, when Micah was diagnosed with CF at about 9 weeks of age, I had a lot to learn quickly. My schedule was busy  (remember, I had two older kids). So, Micah would wake very early in the morning ready to eat, but he had to have a breathing treatment first. Next, chest physiotherapy (CPT) (clapping his back, sides and chest 3-5 minutes a side) and then I had to make sure he got his applesauce (which hid digestive enzymes that were bitter tasting) before I gave him his bottle. His formula had been changed many times, but we finally became a test family for Good Start Formula before it went on the market in 1989 or so. While I was taking care of him, I was also getting breakfast for David and Mandi . Mandi was about 12 or so , so she could get her ownself ready for school. David watched “Zoobilee Zoo.”  Okay. After breakfast was naptime for him and an hour or so later, I’d start all over again. Most of the time, he had breathing treatments three times a day, but if he was sick, it could be as often as every two or three hours. 

Well, fast forward a few years. Micah is almost 26 years old! By all accounts, he should have died before he was one year old. God has had His hand on this boy all his life. He has lived 25 years longer than anyone thought he would (except us). The other day, while doing a breathing treatment, he coughed up some blood – not a good sign, we all thought. He wisely called the doctor and went in for a CT scan of his chest. 

Today, I received a call from him saying the doctor called and said he had a subtle pneumonia going on- so subtle that it was not seen on xray. I am so grateful God chose to bless Micah with that blood. No, I’m not some kind of crack pot. But, I know my son. Had blood not been a factor, Micah, as diligent as he is with his health, might have missed that he was not well and just carried on until the pneumonia got worse. As a result, he has only home IV’s to do instead of a 14 day hospital stay. 

Isn’t it funny how God chooses to get our attention? Thanks God!