“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
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.