I sat in my chair holding my brand new baby boy. Three weeks old. His head was stained by my tears. To say the last few weeks have been ridiculously hard was an understatement. Henry was diagnosed with Cystic Fibrosis.
Do you know what Cystic Fibrosis is? Sure, I had heard of it, but I didn’t know much. Cystic Fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe. Life threatening. Surely I could never use those words in the same sentence while talking about my baby boy.
I took Henry’s diagnosis especially hard. The two weeks after meeting with the doctors were a blur. Lots of medicine. Lots of breathing treatments. How would I do all of this and take care of my three daughters too? What about my husband? Would he still love his sad wife? Heck, I couldn’t even take care of myself right now. I was a depressed mess. I’m certain I fell to my knees a thousand times praying for God to make this go away.
Cystic Fibrosis is a progressive disease. This means it will progress and worsen with age. I remember as Henry’s first birthday approached, I locked myself in the bathroom because of a nasty panic attack. Is this the healthiest he will ever be? I felt like I would never be the woman and mom I once was. My son’s disease had taken over all my thoughts and actions.
Time has passed and the sun has come out and I have pulled myself out of my dark hole. Medicine, breathing treatments and doctor appointments are all the norm for my family now.
The truth is, if you are a parent of a child with a chronic illness you are going to feel overwhelmed. You will be exhausted and sometimes downright terrified. But, I promise you things will be amazing too. There is so much beauty to this life, and these hard bumpy roads truly make you appreciate the good days. Stay strong mama of a newly diagnosed baby. I promise you that you will feel like you again. You will survive this and you will do anything to make sure that baby survives too.
“Every experience, no matter how bad it seems, holds within it a blessing of some kind. The goal is to find it.” –Buddha