When we run errands, my son Jax can tell you the name of every hospital he sees. He can tell you why he went there & what the Dr’s did. He can tell you what he ate while he was there. He took his first ambulance ride Thanksgiving of 2008 at 3 months old for labored breathing. His first hospital admit was just a few months later. Jax is 3 years old and has Cystic Fibrosis. To him, his life of Dr’s, medicines, hospital stays, & x-ray’s is very normal. To us, it’s grown to be semi-normal. I don’t think I will ever get totally used to it, though. I still cry when he gets his blood drawn. I have to step out of the room if it gets too bad. Hospital couches will never be comfortable enough to sleep on. My heart still drops when I hear him cough more than once a day.
There is no cure for CF. The life expectancy for a CF’er right now is mid-30’s. With the help of modern medicine, it’s possible that could jump another 10 years or more soon. Cystic Fibrosis is a genetic disease of the lungs & digestive system. It is not uncommon for some with CF to have to undergo a lung transplant while in their 20’s. Jax has to take enzymes whenever he eats so that his body can digest his food. He is on a high-calorie diet so he can gain as much weight as possible. He does breathing treatments and vest treatments for the mucus in his lungs when needed. He does all of this without batting an eye.
He doesn’t know he has CF yet. That is a talk we will have with him once he can comprehend the importance of it all. All he knows is when he is sick, he needs to go to the hospital. He tells us when he thinks he needs to go. “I need an IV now” he will tell us. Deep down it crushes me. I cry when he isn’t looking. I hold my breath when he gets weighed at the Dr. Jax having this disease has changed my husband & I. We grow closer to each other when he is sick, clinging to each other for support. I have grown closer to God, as well. Knowing that we were trustworthy enough in God’s eyes to be responsible for him is a honor.
I do not know what the future holds for Jax. I pray that he stays strong. During surgery for a hernia he had during the summer, the surgeon found he has congenital bilateral absence of the vas deferens. Meaning, he will be unable to father children because the tubes that carry sperm are blocked by mucus & do not develop properly. It saddened me to think that in the future, Jax might have trouble having children of his own. It just felt like another obstacle he would have in his way. The less pain he has in his life, the easier life might be for him. We are doing everything possible to make his life as easy as possible. There might be a day where easy might be unattainable for him.
Jax bounces back fast. He has more energy than any kid I’ve seen. He is always in good spirits. His Dr’s are in awe of how well he is doing. My husband & I have committed our lives to helping him fight this. He leads the way, though, & we follow behind. A small framed, 31 lb boy is who I look up to.