WARNING:  extra long post today. 

Today, my husband took Will to Norfolk to CHKD for his annual visit with his surgeon.

Most people in his life don’t know this, but Will was born with a birth defect.  A cleft palate.  A bilateral cleft, to be specific.  This is a fancy way of saying that both his hard and soft palates were missing when he was born. 

I remember staring in shock as the NICU doctor explained to me that the perfect baby I just saw wasn’t, in fact, perfect.  I saw the compassion and the sympathy in his eyes as he talked to me about what we were facing.  The sympathy…I remember being so furious about that.  Because at the time, NICU doctors and nurses and regular doctors and nurses, husbands, etc. were running around in a whir of activity.  With so much going on, I didn't know what to do, what to think, what to feel.  I was angry with him because he took away the peace and elation that comes with the birth of your child and replaced it with concern and uncertainty and fear.  I was scared and alone and couldn’t comprehend what he was telling me.  And then, “rest for now, and the doctors will visit you later and explain it all to you…” as they whisked my baby away.  And everyone left. 

And then I was really scared and alone.

The rest of the day is a blur of bliss, honestly.  We had waited so long for him.  He was a beautiful baby, with round rosy cheeks, auburn hair, big blue eyes and a little rosebud mouth.  Eventually, doctors and surgeons came in and explained to me that he had a cleft palate, but not the lip (lucky) and that it was reparable (again, lucky) but there would be feeding challenges.  And speech challenges.  And ear problems.  And lots of orthodontia.  And possibly even more surgery.  They set us up with special bottles, showed us how to use them, made appointments with specialists, and then left again. But it was fine, because he was here and I loved him more than anything.  I'd never experienced such a surge of fierce emotion...and I'd never been so happy.  

But later, alone in my room again, I was scared.  Why us?  The responsibility and uncertainty of what we were facing, on top of the stresses of suddenly having a newborn, seemed insurmountable.  My mother walked in then, saw my tears and wrapped me in her arms.   Told me not to worry.  Reminded me that in the grand scheme of things, this wasn’t a big deal.  It could be fixed.  Things could be soooo much worse.  He was perfect and wonderful and would be just fine.  And she was right, about everything.  

And then she said, “God doesn’t give us more than we can handle, Jennifer.  And God has a lot of faith in you…now you need to trust Him.”

And I did.  And soon I realized, we are so lucky.  Lucky to have him.  Lucky that his obstacle can be overcome.  Lucky to have resources.  Lucky to have family with medical connections that led us to Dr. Bill Magee, a world-renowned surgeon.  Lucky he was close.  Lucky he stepped in and saved the day.  Lucky to have an excellent team of physicians following him.  Lucky our insurance covered his surgery.  Lucky our insurance has covered his 11 ear tube surgeries.  Lucky for ear tubes.  Lucky for speech programs.  Lucky for modern orthhodontia.  Lucky for so, so many things.  He is just fine.  As are we.  More than fine.  He’s perfect.  And we are, truly, blessed.

And that’s why these clinics are so important.  Not just for follow up to make sure all is well in his mouth, but because he, and we, once a year bear witness to how blessed we truly are.  It’s a clinic at the Craniofacial Institute at a hospital full of nothing but children.  CHILDREN.  Each year, we see children who are lucky to have found Dr. Magee, but who definitely are not as lucky that Will.  Children with massive facial deformities.  Children who will never walk because of their birth defects.  Children who breathe with the help of a machine.  Children who weren’t lucky enough to have just a cleft palate and bear the scar that so many people still refer to as a “hare lip.”  It makes our hearts hurt.  It makes us think.  We gain a little perspective at these visits.  Scratch that -- we gain LOTS of perspective at these visits.     

Which is important.  Because as the years have passed, and our lives are so normal, we tend to lose sight of how blessed we are.  Will is an amazing child…smart, funny, athletic, handsome, introspective, inquisitive, passionate and unafraid. 

I no longer ask God “why?”  I thank him, profusely and every day, for my wonderful blessings.  I thank him for teaching me that everything’s relative.  I thank him for teaching me about grace.  I thank him for my, and my family’s, imperfections.  Because they are beautiful.  And while they may cause struggle, and even tears sometimes, they are a reminder that everyone carries some sort of burden.  It's a part of life, it's a part of parenting.  Some are more severe than others.  My friend who lost her son to cancer...I can't compare my experience to hers.  But it allows me to, once again, gain perspective.  

And thank God who has been so good to us.  

And for believing in me, even when I didn't.


Kara said…
Loved reading this. Each year we take C for his annual appointment at Children's Hospital in DC. He has low blood pressure and sees a cardiologist there. Walking through those halls puts everything into such a clear prospective. Our small "burden", while important and at times complicated, is manageable. How blessed we truly are.
Hope you guys are well! Always enjoy reading!

Popular Posts