Wednesday, January 21, 2015

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. 


Simply Rachel said...

Wow, I am so sorry. I cannot imagine being in your shoes. Thank you for this post and for spreading awareness. Sadly, I had not heard much about cystic fibrosis, so this was an eye opener read for me. Hugs and prayers to you and your family!

Amanda said...

keep up the great work!! The best thing you can do is stay strong and be there for your son! Take some time for yourself as well, Anxiety and stress are huge health issues! You are a strong woman, don't ever let anybody tell you any different! Best of luck!!!

Jen said...

You are doing amazing work! Both of my cousins have CF and one is in his thirties now.

Pray Love Blog said...

Sweet mom, my prayers are with you and your sweet boy, *hugs to super Jack* what a little hero he is <3

Steph @ The Kat Almanac said...

Omg this makes my heart hurt. You are so strong & brave mama. What an amazing inspiration you are!

Lisa D said...

A friend recently had her 3 month old son diagnosed with CF. They hae 2 older children without it, and had no idea they were both carriers for it. I'm so sorry you're going through this. Prayers for little Jack and strength for you both!

Ashley said...

I just found your blog on the Blog Love Project and my cousin has CF as well! He is now 14 and was diagnosed when he was just a baby. Each year we do a walk for him called Warriors for Wells and this past year we hiked 22.26 miles and plan on doing it again this fall! I know it is very tough having someone you love suffer the way they do but all we can do is stay strong and positive!

Alexis D said...

you are doing a great job raising your son. thank you for sharing your story with us

Meg Taylor said...

To be completely honest, I didn't know a lot about CF before reading about Jack, but since learning how much this affects your family, I've read a lot about it and it really is such a scary disease. I hadn't seen One Republic's video before - how powerful! You are one amazing, mama!

Roselynn Mercedes said...

I'm so sorry to hear all that you're going through with little Jack. But know that you are amazing and he's a very lucky boy to have such a caring mother. Stay strong.

msvirgogrl said...

Thanks for telling your son's story. He's blessed and you are blessed. I hope you enjoy all the moments with him despite his disease as it sounds like you are strong mama and he is a strong little boy!

Stephanie Cox said...

There is no doubt that you would never want to experience this. But I truly believe God gives you exactly what he needs. He knows you, your heart enough to know that you are exactly the Mom that Jack needed. Stay strong, Momma. Hugs and prayers for you, Jack and your family.

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