Our Babies
Luke and Claire
"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.
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 Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After 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 guide books. 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.... and you begin to notice that Holland has windmills....and Holland has tulips. 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 will never, ever, ever, ever go away...because the loss of that dream is a very 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.Friday, October 21, 2016
One Shoe
"The good news is that I made it to the gym, but the bad news is that I only had one shoe in my bag."
After I stopped laughing, I unsympathetically told him to figure out plan B. After all, we have had LOTS of practice this week switching plans.
Most of you know that Claire's scoliosis has been worsening over time (which we expected). The curve is now at 57 degrees, and bracing isn't quite doing as much as we need to slow the progression, so casting is our next option. We casted her once before, and the results were great - hardly any issue. Lesson 101 of medical stuff: just because something worked once without complication, don't expect the same thing a second time.
The casting went great last Friday, and the doctor was thrilled with the curve correction he was able to get. However, it was the aftermath that we didn't expect. From the time she woke up until Sunday, she cried and cried. We realized that the cast had cut into her hip, so I texted the doctor for an early Monday appointment to fix.
Side note: Holding your hysterical four-year-old down on a table with three other adults while a cast is peeled off your kid's skin is not fun.
After lots of tears from both of us, we had high hopes that the spot on her hip was the source of her tears and lack of sleep. We were wrong.
Monday was the highlight of our week because we slept for four consecutive hours. That was the best sleep of the week. Finally, on Thursday morning, I texted the doctor at 7:00 am to tell him we had a big problem on our hands. It wasn't just her hip, and it wasn't just "adjusting to the cast" at this point. He immediately called me, and we were at the hospital by 8:15 to cut her out of the cast. You know how a block of Parmesan cheese gets all rough after it has been grated? That's a good visual. It turns out that the lining on this cast was just tearing up her skin. The doctor did absolutely nothing wrong - it was simply that the lining on this cast wasn't good for her sensitive skin. The cast was so tight that you couldn't see what was happening, and she couldn't tell us. We'll let her heal for about a week, and then it is back to the hospital for a new cast....this one with a different lining.
The parallel story going on here is that some of you know Claire was in the ER on Columbus Day because we couldn't get her to stop throwing up for a week. She lost two pounds, and after several doctor visits, we were convinced it wasn't "just a virus". Rebalancing her meds finally did the trick, and her belly is back under control.
So, whether it is a missing shoe in a gym bag, a new plan for her back, or new meds for her belly, sometimes you just gotta go to plan B.
Claire slept 14 hours yesterday, and Patrick made it to the gym with both shoes.
No comments:
Post a Comment