To My Child with Cystic Fibrosis: Please Outlive Me
There are times where it hits me out of nowhere. Brushing my teeth, driving to work, folding laundry … times where I am doing the most mundane things and my guard is down. It’s at those times that my mind reminds me “You might have to say goodbye to him sooner than you would like.”
Our son has an incurable, life-threatening chronic illness. Jax has cystic fibrosis (CF). CF is an unpredictable, life-shortening genetic disease. It’s an ugly disease that causes a myriad of complications, mainly lung infections and respiratory failure.
We found out about cystic fibrosis on a Friday afternoon. Jax was eight days old, and it had been a long day. He and I were asleep on the sofa when my husband answered a call from our pediatrician. She told him Jax’s newborn screening had come back positive for CF, and we needed to head to Tulane Medical Center in New Orleans early Monday morning for confirmation.
I spent all weekend Googling. “LIFE EXPECTANCY” “DEATH RATES” “END-OF-LIFE” “PROGNOSIS”
I had never heard of cystic fibrosis, and I thought I was doing what I needed to be doing by researching online. Looking back that was the opposite of what I needed to do. Tulane confirmed Jax’s CF Monday afternoon. The next day we began our CF journey.
Here we are, almost eight years later, and honestly, it’s not any easier for me. I can go days without thinking about it all. Then out of nowhere, it’s like a freight train to my body. I look at him playing from across the room and my heart just breaks. Will I have to bury him one day? Will he leave this earth early? How would I continue on without him?
Life expectancy for those with CF increases every year, but day after day, I read about another person taken by this disease. A lot of the time it is children Jax’s age. I have mourned many children’s deaths from various online CF mom groups that I am a part of. How am I supposed to handle that if it’s him?
I don’t cry in front of Jax. I don’t show any signs of worry in front of him. He has known he has CF for a few years now. He talks about it to anyone who asks, and it doesn’t seem to faze him yet. All of the medicines and breathing treatments and hospital visits are just something he has to do, he has told me. He is still young enough to want the attention that it brings. I worry about when he is older and he wants a “normal” life. When he wants to have the children CF won’t allow him to have. When he will be in the hospital while life continues outside without him.
Grief isn’t something you can prepare yourself for, I am finding out. Jax has stayed relatively healthy for the past seven years. There are even times I second guess his diagnosis because he is doing so well. Then I see how his fingers are starting to club and how he is unable to maintain a weight gain, and it all floods back. Sometimes my mind gets away from me and I start picturing how his life, according to his diagnosis, will be. Hospital beds, lung transplants, wires, g-tubes, etc. That isn’t what I want for Jax. He does not deserve this prognosis.
Don’t get me wrong … I am not all doom and gloom. For the most part I put it all aside. I have to or else I am of no help to him. Without a set of two attentive, involved parents, Jax would never make it. If this is the life we have been given, I have to make the most of it. If Jax leaves this earth before me, I have to appreciate him in the here and now. He cannot see the fear behind our eyes. We have to stay strong for him. Taking it day by day is the only way we can get through this.
Tonight Jax is tucked in his bed, sleeping away, and has no idea of the life that lies ahead of him. He does know this: his mama and his daddy love him deeply. If my sole purpose in this world is to be his support system, his advocate, and his voice, than so be it. I can’t think of anything I’d rather do with my time here than give him the best life he could possibly live.
I will see to it that it happens.
Dear Misty,
I thought you could use some hope and I wanted to share something with you, my daughter’s teacher, highly accomplished has her Masters and Ed.D is teaching 4th grade in CT. She has CF and has had a liver, lung and kidney transplant and is happy, healthy and teaching in a classroom. She is married and has what she calls her fur babies. Two dogs she loves to play with and walk! She really is living a wonderful life and goes once a month to the Cleveland Clinic for treatment. She is living proof that it is possible for your child to thrive. I can only imagine how much you must worry but have faith that there is hope and people who are praying for you and your child. Sending you strength and support.❤Leslie