Carson turned 9 years old Monday.
He’s so incredible school was closed for him on his special day as well as the day after. That’s at least what we told him and he loved it.
Since Carson is not one for being the center of attention, big birthday parties are not his thing. I will never forget his first birthday party. It was at our house and we had him in his high chair with family all around him singing to him. As we sang and brought him cake, he cried his eyes out and had a temper tantrum. He was so red I couldn’t tell where his red hair stopped on his face. While it made for some memorable photos, we learned early on he prefers things to be more subdued.
Since his birthday was on a work day, most of his day spent at our office playing his new Osmo game on his iPad and wrecking the newsroom with his matchbox cars.
Carson’s big present this year was a battery-charged four-wheeler that goes a whopping 5 mph. He picked it out a few weeks ago. Since he never asks for anything, we knew that would be his big gift. With it raining all day Monday, he never got a chance to try it out.
Come Tuesday the weather cleared and I spent a half day at home with him. Decked out in his oversized helmet and fancy gloves, he took it out for a spin in the driveway. That turned into a cruise around the block and next time I know I hit my FitBit step goal by 10 a.m. because I was jogging next to him all around the roads of Berlin. He was in heaven without a care in the world, except for keeping an eye out for stop signs. When Carson is smiling and happy and content, I’m at my happiest. I know Pam feels the same way. He has a way of lifting other people up.
With Carson, life is about progress, functioning and inspiring. It’s both simpler and more complicated. I understand that’s contradictory. It’s intentionally so because it explains life with a special needs child.
It’s a different journey. I got to thinking last weekend about a conversation I had at the Dunkin Donuts drive-through last weekend with a woman who helped us with our kids at home before they were school aged. She was a big part of our life for a couple years. Knowing Carson, she mentioned her daughter was on the Autism spectrum and talked a bit about her goings on. I remarked about the journey ahead and if there’s anything we can do to let us know. She said it has been quite the journey so far but it’s “been very rewarding, too.” I feel that way about Carson.
Would I have picked to be chosen as a dad to a special needs child? I can honestly say I would not if given the choice, but that’s now how life works. What I do know is Carson has made me a better person. Carson may well be the most influential person in my life. He’s most certainly the most inspiring. He’s changed me forever.
These thoughts remind me of the writing, “Welcome To Holland” by Emily Perl Kingsley. I included this piece in this column previously years ago but it’s worth another read I think. It describes our life with our Carson well.
“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.”
