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A Thank You to the Medical Professionals Who Got Us to My Son's 1st Birthday

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It’s commonplace to write a thank you note after your child’s first birthday (or any birthday) to all those who gave gifts or attended a party. But how often do people write thank you notes to their child’s medical professionals? This is my thank you to all those who have helped us get through the first year of my son Johnny’s life — those who have been by our side, taught us, listened to us, been our guides, and become our second family.

To all the doctors, geneticists, specialists, dietitians, nurses, lab technicians,  social workers, x-ray techs, anesthesiologists, helicopter pilots and nurses on board, emergency room workers, child life specialists, phlebotomists, and all those medical professionals who have touched our lives in the last year…

Thank you.

Thank you for helping our family get through Johnny’s first year of life. It doesn’t seem like that long ago we were sitting at home with a newborn when we got the call that his Newborn Screen came back positive for maple syrup urine disease (MSUD) and were to rush to the hospital immediately. It doesn’t seem that long ago that we had a confirmed diagnosis and came to accept this, only to find out the following day that Johnny also has cystic fibrosis (CF) and he is the only child in the U.S. to have both these diseases together.

It seems like just yesterday you all were teaching me how to care for Johnny — to measure his formula and mix it with breastmilk, watch him for any signs of lethargy or anything to indicate elevated leucine levels, give him enzymes on applesauce, use a nebulizer and perform chest PT on him, and the other countless things learned to care for him. It seems like just yesterday our entire family was in shock and terrified at what the future held. We were prepared for the worst. We were prepared for developmental and neurological delays. We were prepared for Early Intervention. We were prepared for illnesses that would never go away. We were literally prepared for everything that came along with these two diseases, having no idea how they would interact with each other. 

What we were not prepared for was this: his 1-year birthday; a birthday we are celebrating with family and friends and all of you. We were not prepared to have this amazing son who is advanced in all areas of development. To all our delight, he is defying all the odds. We were not prepared for all the joy this last year has brought to our family. We were not prepared for how accepting and loving our 4-year-old daughter is of her brother. We were not prepared for how much closer this has brought us as a family.  We were not prepared for how much stronger this has made our faith. 

johnny and his sister

As we look towards Johnny’s first birthday we can do nothing but celebrate and shout to the heavens how thankful we are that this child is in our life. We also cannot shout loud enough how thankful we are for all of you helping us get through this first year. Without you we would have been lost, grieving, scared with every cough or cry. Without you we would not be anywhere near where we are today. 

Thank you for holding us up. Thank you for responding to the hundreds of emails, dozens of phone calls and answering all our questions, no matter how outrageous they were. Thank you for dealing with myself as Johnny’s mom when I was overbearing or overstepping. Thank you for acknowledging that I know him best. Thank you for thinking I am a good mom; that has gotten me through more tough days that you’ll ever know. You all have a job to do, but you don’t treat our family as a job. You treat us with respect and dignity and friendship. 

From the very bottom of our hearts, we thank you as we celebrate Johnny turning a year old! We look forward to all the other birthdays we will have to celebrate with you by our side.

close up of johnny smiling

Originally published: March 5, 2016
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