A year ago today, we were sitting in a cold dark room being told that our son had a birth defect. A cleft lip and palate, at the minimum. We were terrified and heart broken. Everything we knew about being parents was put in a bottle and thrown off a cliff. Would he have other problems? Was this part of a genetic syndrome? Would he live a normal life? Would we have to leave him behind in the NICU? Thousands of questions and worries swirled our minds. Shortly after he was born, I stumbled across this essay by Emily Perl Kingsley, a mother of a child with a disability. I've never read something that encompasses our thoughts and feelings so perfectly. Every time I feel overwhelmed by the appointments and therapists and missed milestones, I remind myself that without Hughitt's cleft, I would have never seen the beauty of "Holland."
Welcome to Holland
Written by Emily Perl Kingsley
I
am often asked to describe the experience of raising a child with a
disability – to try to help people who have not shared that unique
experience to understand it, to imagine how it would feel. It’s like
this...
When
you’re going to have a baby, it’s like planning a fabulous vacation
trip to Italy. You buy a bunch of guide books and make your wonderful
plans...the Coliseum, the Sistine Chapel, Gondolas. You may learn some
handy phrases in Italian. It’s all very exciting. After several months
of eager anticipation, the day finally arrives. You pack your bags and
off you go.
Several
hours later, the plane lands. The stewardess comes in and says,
“Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I
signed up for Italy. I’m supposed to be in Italy. All my life I’ve
dreamed of going to Italy.” But there’s been a change in the flight
plan. They’ve landed in Holland and there you must stay.
The
important thing is that they haven’t taken you to a horrible,
disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.
So,
you must go out and buy new guidebooks. And you must learn a whole new
language. And you will meet a whole new group of people you would never
have met. It’s just a different place. It’s slower paced than Italy,
less flashy than Italy.
But
after you’ve been there for a while and you catch your breath, you look
around. You begin to notice that Holland has windmills. Holland has
tulips. And Holland even has Rembrandts. But everyone you know is busy
coming and going from Italy, and they’re all bragging about what a
wonderful time they had there. And for the rest of your life you will
say, “Yes, that’s where I was supposed to go. That’s what I had
planned.” And the pain of that experience will never, ever, ever, go
away. The loss of that dream is a very significant loss.
But
if you spend your life mourning the fact that you didn’t get to Italy,
you may never be free to enjoy the very special, the very lovely things
about Holland.
I don't think of Hughitt's cleft as a disability, per se, but it has certainly come with it's host of challenges. Challenges that do and will (for the foreseeable future) make him different from his peers. Challenges that even at just eight months old (today!!), he has overcome with such courage.
And speaking of challenges - we've conquered the palate repair! On April 1st Dr. Baker repaired Hughitt's palate, nasal floor, and tongue tie. It was a tough surgery but once again, he showed us how resilient he is.
Here he is pre-op... looking a little nervous.
Shortly after surgery, recovering in the PICU. This is a baby on drugs.
Post-op appointment with Dr. Baker. He checked out great! I love the look on his face... "This isn't funny mom... get me away from this guy."
So where are we now? We're still going to Physical Therapy once a week for the gross motor delay. We're really working on getting him to push up on his arms and strengthen his back and neck. We're trying out these super stylish "Hip Helpers" that work to shift his center of gravity, forcing him to exercise his core. Check out these bad boys.
I'm sexy and I know it.
We'll also start Speech Therapy this week. At this point most babies are making consonant sounds like "mmm" and some are even making repetitive sounds like "nanana" or "bababa". Hughitt is basically mute. He makes some squealing sounds and can laugh, but does no babbling otherwise. This is very common in cleft children because they learn very early that they do not have the internal oral pressure needed to make sounds, so they don't even try. Now that we are post palate repair, we need to retrain him to try and make more sounds. We'll also be on the lookout for any indicators that his repair needs to be modified. For example, if he's consistently sounding very nasally, it might indicate that his repair is too tight.
For now, the orthodontist and plastic surgeon will take a back seat. We will still see them occasionally for check-ups with the craniofacial team at Fairfax, but for the next couple years (fingers crossed!) we won't have to see either regularly. We'll be keeping an eye (or ear, rather) out for his hearing as well. So far we haven't had to see the ENT so we're hopeful we're over the hump on that one.
And that's about it! Enjoying watching this sweet miracle grow into a crazy boy, just like his wacky brother.
And a funny for the day - at one of his recent appointments I was asked if his face was swollen from his medication. HA! Nope, those are just his cheeks. Gotta love 'em.
