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BAAny parent who has received a diagnosis for their child understands the devastating moments, hours and days that follow. It’s hard to put into words. One second you have a perfect baby and the next… you still have a perfect baby but everything in your world is different.
3 years ago today I learned what Cystic Fibrosis was. I was a first time mom, snuggling my 8 day old Banksy boy, blissfully unaware of what “abnormal results on his newborn screening” might mean as a nurse had mention in a voicemail she left me asking to call the doctor back. Later that day after returning the phone call, my heart broke in ways I never knew possible.
This 3 year diagnosis-iversary has hit me hard. One of Banks favorite phrases is “I do it self!” He is fiercely independent. He has all the normal kid things to learn and navigate, but we are also teaching him to understand the importance of managing his CF. It fills my heart with so much pride when he asks to do pat pats and says “take care of lungs” but it also continues to break my heart that a life tethered by daily treatments is all he’s ever known. When he runs over to me and announces he needs “zymes first!” before having a snack, I am blown away by his self control and understanding that he needs enzymes to enjoy his food, but I it is also heavy to know this will be his reality forever.
I think this year will be the hardest yet because Banks is starting to understand how unfair and relentless CF is. He ask why Cohen doesn’t do pat pats or have enzymes.
We want him to understand the importance of his treatments, but man is it hard to explain how unfair life can be to a three-year-old. CF is such a part of our lives now it seems weird to think there was a time I didn’t know what it really was.
Day to day these things weigh on our hearts less as time goes by, but on days like today it still hurts. God created Banks perfectly just the way he is. We are reminded of that every day when we see what a brilliant, energetic, silly little boy he is growing into. He fights CF every day with a smile on his face. Our prayer is that someday soon there will be a cure so he doesn’t have to fight forever 💜
@banksbigadventures
