If you remember, it was about a year ago when you got the phone call. It was 5:08am and no good phone calls are made in the middle of the night. You had been on cloud nine. You were well under way of creating that perfect family you had always dreamed about. You had one beautiful kiddo at home and another one on the way. What happened after that phone call changed everything.
You wife was calling as she was leaving work and was on her way to the hospital. She started to bleed and have cramps. You guys were only 13 weeks pregnant and given that you are a physician, you knew to expect the worse. Panicked, you found a babysitter for your daughter. You couldn’t let a 15 month old see you this way. You ran into the ER and you found your wife with that terrified look on her face. Your world was falling apart.
Thump, thump, thump, thump . . .
They found the heart beat! It was 150. Your baby was fine.
Crisis averted . . . you thought.
Then the ultrsasound tech said it.
Cystic hygroma! Heart defect!
With those two findings your ‘doctor brain’ knew your baby had Down Syndrome.
Self, I want you to know that I forgive you. I was mad at you for so long for things you thought and the places you let your mind wonder. You were devastated. But that was pure ignorance. You had this idea of ‘perfect’ in your head, and when it didn’t turn out that way you got mad. When you found out it was a boy you even thought, “we can’t use the ‘good’ name on him”. You saw all of your hopes and dreams as you built them in your mind just crash down all around you in the blaze of one silly extra chromosome.
But as the dust settled you started to see life more clearly then you ever did. Those were your hopes and dreams that had dissolved. And you quickly realized that what was left was yours baby’s hopes and dreams, and those were the ones that truly mattered.
You got the life lesson earlier than most parents do.
Above all else a parent is to support their children and meet their needs. That’s it, nothing else.
So what, your little champion has Down Syndrome. He has needs and you have met them. In fact, you and your wife are quite good at it! (If I don’t say so myself). Keep up the great work.
Self, I am proud of you. For the first time in your life you can look in the mirror and see a man, a real man. You have grown up. The ignorance is gone! Your life up until this point has been about you. (Become a doctor, focus on you, and you will succeed.) Your little champion and his silly extra chromosome have made you realize that life is about so much more. You’ve found strength in community and you still can’t believe the support of the Down Syndrome community. They get it. Their priorities are in order.
I am so proud that you used the ‘good’ name on him. It is perfect. NOLAN; to the Irish, it means Champion. He is all that and so much more. Because of Nolan you are a better husband; a better father; and even a better doctor. Because of Nolan you now appreciate true beauty and true success. You realize that perfect might not be what you think it is; but if you get out of your own way and take a step back and look; you just might have perfect right in front of you. Just keep your eyes open so you don’t miss it.
You saw a video on-line of a girl with Down Syndrome singing the John Legend song ‘All of Me’ and the lyrics really hit home. Don’t ever forget them.
“All of Me, Loves All of You. I Love your curves and all your edges, all your perfect imperfections. You’re my end and my beginning. Even when I lose I’m winning.”
The thing is, you never lost anything . . . except ignorance and selfishness.
Only this time dream WITH Nolan; not FOR Nolan.
Take everything a single step at a time.
Your medical brain will always be there and you can’t turn it off no matter how hard you try. Just know that the Down Syndrome may delay some of those milestones and may even prevent him from reaching some of them . . . that’s ok. Enjoy the ride instead of worrying about the destination. Your wife says you are just taking the scenic route. You haven’t tried that until Nolan.
Kinda nice huh?