Tiny finger, little toes, sweet smiles, and cute giggles. Every parent-to-be pictures these sweet baby moments and feels so much love for their new little one. Though the first few weeks can be difficult adjusting to parenthood, that never-ending love overshadows all of the sleepless nights and spit-up covered clothes.
Then comes news that you aren’t expecting.
“Your son failed the newborn screen.”
And a few days later…
“Genetics have confirmed that Bennett has Cystic Fibrosis.”
I was not unfamiliar with Cystic Fibrosis as I had briefly studied it in my graduate school program. Though it had been several years since my classes I remembered the basics. All I could think was the horrible thought that I may outlive my son.
Receiving this devastating medical news about our baby has been our biggest challenge as parents. The things I worried about with our first baby, normal things, like is the baby eating enough, sleeping enough, pooping enough, etc., paled in comparison to worrying about my baby’s overall health and future.
I anguished over every innocent cough or sneeze. Analyzed every bowel movement in depth. Worried about things that may or may not happen in the distant future like organ transplants, positive sputum cultures, hospital stays, CF-related diabetes, etc.
Grief set in. I got angry looking at other parents happily sitting in the waiting room at the pediatrician’s office who were there for a routine check-up. I pleaded that I be the one who had to deal with chronic illness and not him. I made myself physically and mentally sick thinking about the “what ifs”. I cried daily and wondered “why?”. I spent more time agonizing over my son’s CF diagnosis than I did really connecting with him in his first few weeks of life.
Then the most simple yet life-changing words were spoken to me by the wonderful social worker who is a part of our CF medical team.
Just enjoy him.
I don’t know if she understood the gravity of her words and how important it was for me to hear them.
He will do regular baby things. He is completely unaware of his genetic disease. He craves the same love, attention, and touch as any other infant.
Bennett is now one year old. He has done all the regular baby things and I’m so thankful that I’ve been able to enjoy them. I feel such happiness seeing his adventurous spirit and curiosity. His love for the vacuum cleaner and obsession with my laptop charger make me laugh and keep me on my toes. His double cowlick creates some hilariously unmanageable hair styles. His one little dimple peeks out when he smiles. He loves peanut butter sandwiches and hates mashed potatoes. He enjoys escaping in the middle of diaper changes and really despises the safety gate on the basement stairs. He is pure joy.
My life changed for the worst when we got the phone call. But it turned right around when I heard those three simple words and could see him in a new light.
If you are a new CF parent (or the parent of a baby with any chronic illness) and no one has said this to you then I’m telling you now because you and your family deserve happiness and love despite this life changing news.
Just enjoy your baby.