The title of this post was originally “Feeling Overwhelmed”. I started to write it after the vision teacher left this morning, leaving behind piles of “visually stimulating” materials next to the pallet of boppys for tummy time that we are working with for Grayson’s OT. Grayson was asleep, again, on his tummy- seems like the last few days have either been him screaming on his tummy or falling asleep on his tummy (worn out from all the screaming). Anyway, tears in my eyes, these were the first few sentences that I had written:
It’s kind of all hitting me right now, and sinking in. Our life is different now. We’ve had a doctor’s appointment and three therapy sessions this week. I want to go back to a few weeks ago, when we spent our days cuddling positions that made Grayson happy instead of positions that help develop his core, where he could nap as long as he wanted in his swing instead of keeping him up to work on his neck muscles, and when we squeezed in tummy time when we could, but if we skipped a day, no big deal.
I was going to continue writing about how I felt after my conversation with the vision teacher about coping with having a child with a disability, and how hearing someone actually say the D word when talking about Grayson was really overwhelming. Then I was going to write about Ryan texting me that the MRI was actually more expensive than we were quoted (how can they do that by the way? ugh) and how that made my stomach drop and me cry even harder.
But then Grayson woke up, and started to fuss. I just couldn’t listen to the tummy-screaming at that moment so I picked him up, lifted him in the air, and sang “Doo, doo, doo, doo, doo”. Well, apparently to a 4 month old, “Doo, doo, doo, doo, doo” while being hoisted in the air is freakin’ hilarious. He laughed. He didn’t just smile and coo like he normally does when he “laughs”, but this was a true belly laugh. So we kept doing it. And it was funny stuff. And it made me laugh, and cry too. Because it didn’t make the crap go away. But Grayson taught me that we can still have fun all day, even with his imperfect eyes and delayed motor skills.
My friend, who understands all too well the road I am just beginning, sent me this the other day.
Welcome To Holland
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 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.
So Grayson, Ryan and I are in Holland, and it’s ok. It’s actually supposed to snow in Holland today- I think we’ll take a break from Tummy Time and go play in it.