One Year With Cystic Fibrosis

Being a mom of a child with Cystic Fibrosis isn't easy. My dream is to find a cure for Cystic Fibrosis. My son Jack has a fatal genetic disease that effects his lungs. Have you heard of CF? Thick mucous causes problems with the lungs and digestion, (Jack's lungs are the only organ affected) but can affect almost any organ in the body. There is no cure. Only half of those with cystic fibrosis are expected to live into their 40s, some younger, some older. On a daily basis Jack spends 2 hours on nebulizer treatments and chest therapy to keep his lungs clear.

Jack's 1st breathing treatment

It's been a year since we received the news that our 2 week old son had CF. During my pregnancy I had prenatal blood work done and I was informed I was a carrier of a Cystic Fibrosis gene. My husband also went in for testing and tested negative. During prenatal testing doctor's do not test for all the of the CF mutations. Brian's mutation is one that is not widely tested for. We had no idea our son would be born with cystic fibrosis. 

Great Strides walk for Cystic Fibrosis

Motherhood, for most, is a time filled with excitement and overwhelming joy. But what about moms like me who are faced with the unexpected? Potentially devastating news. Some moms were created to face challenges. One of them happens to be me. Being a mom of a child with CF is a very scary place. Not many understand it or the anxiety I struggle with. Each day I fear the cough, the chest rattle or the runny nose. I worry the next illness will end up with treatments every 4 hours, or worse, a hospital stay. I sometimes get lost in the anxiety and have trouble living in the here and now. The hardest thing for a parent to do is watching their child go through something really tough and not being able to fix it for them. I'm doing all I can and sometimes feel absolutely helpless. People with CF sometimes say it's like breathing through a straw. If you try it for long enough it feels as your lungs are straining, your head starts aching and your body starts sweating. Scary, right? 

Testing days at the clinic 

Life is not easy for someone with cystic fibrosis. My Super Jack is my inspiration in so many ways. I have not idea how I got so lucky. I can only hope I am strong enough to continue to fight for him. 

We are Team Super Jack during our walk a thon

Recently, I found "I Lived" by One Republic. I loved the song before watching the video and realizing they were featuring a child with CF. Every time I listen I get chocked up.