On Having a Baby with CF

I'm writing today to link up with Kelly's Korner Show Us Your Life series, and this week is for parents of special needs kids. My hope is to provide folks with more information on Cystic Fibrosis and our personal journey.

My son Crosby is currently 8 months old and was diagnosed when he was 15 days old, through routine infant screening. I started The Crosby Show blog to keep our friends and family informed about our journey with CF. 

I've written a lot about CF specifically and generally and here are some key posts:

A Bad Word

An Orphan Disease

CF Facts

Genetics of CF

To see all my posts on CF, just click the Cystic Fibrosis label at the end of this post.

I will be honest and admit that when we first received Crosby's diagnosis, I did not want to talk with other people who have a child with CF. CF is a spectrum disease and not everyone looks the same. I was terrified of learning about other families because I didn't want their situation to broaden my own fears. I wanted to follow our own road and not project someone else's experiences onto our future. I also needed time to digest the new reality we were facing. Time to accept that Crosby's CF was permanent and mourning the loss of having a "perfect child" took some time.

Now that some time has passed and Lance & I have gotten involved with our local chapter of the CF Foundation, I feel much more comfortable.

Being a parent of a CF baby has its challenges. I recently read a wonderful article about special needs mommas and it really tugged at my heart. The author writes:

When children come face to face with the Goliaths of disease — cancer, heart defects, cystic fibrosis, brain injuries and many more — it’s their mothers who gather the stones that this small child will use to fight the fearsome foe. We often revere the doctors who take care of these little ones, and it’s true, they are heroes. They make the stones so that we have weapons with which to go into battle. But often, there is a forgotten hero: the mother who gathers each and every stone, places it into tiny hands, and stands by while her baby takes his best shot.

Mothers who take care of children with serious diseases don’t have the same luxuries that the rest of us have. Every parent carries the nagging fears: What if something happens to my child? Will I be able to give my child all the things they need to help them live a happy, healthy life? How can I help them realize their full potential? And perhaps it all comes back to this question: Am I enough? Am I enough to give my child what she needs?

You can read the entire article here: 
http://www.kevinmd.com/blog/2014/05/remember-mothers-sick-children.html

I don't know what Crosby's CF will eventually look like, just like I don't know what the future holds for us in any aspect of our life. I do know that life with Crosby is going to be a great adventure. A wild ride that I am so happy I get to be a part of. And yes, I'll do everything in my power to get those stones in his little hands.

If anyone has any questions or would like to contact me, please email me at sanderscarmen@hotmail.com.

Love,

Carmen