Well, that week turned into a couple months didn't it? Sorry about that. I suppose a week follow up to the first post was a lofty goal considering I was leaving town for a month. I am so glad I waited though, because something fell into lap that I know was meant to, and it has completely helped me pinpoint, or rather, articulate how a very big part of me feels about Tuck being a special needs. It was shared with me by a mother who lived in my old neighborhood who knows just what I'm feeling.
To my very core, this story is true for me:
WELCOME TO HOLLAND
byc1987 by Emily Perl Kingsley. All rights reserved
Emily Perl Kingsley.
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.
Every time I read the line "everyone is busy coming and going from Italy" my chest hurts. That line is the most painful for me. " It's all the things so far we haven't been able to do, or have to do every day, because of it, while everyone else's life moves on, most people never knowing what's going on. I'm still working those feelings out.
For me, Holland has looked a little like this:
Milestones come and go without being reached. Feelings of guilt when I cheer Finn on for the milestones he's reached. Being confused by how two can grow inside me, but come out so completely different, and how will they both make sense of that when they grow up? The pain from the classic, yet once naively comforting, statement made by all mothers of older twins that it's so nice when they're this age and older because they always have a built in playmate. I smile and nod to avoid the awkwardness that would occur from telling them that mine actually don't play together, at all. It's doctor appointments, and therapy sessions, every single week. Knowing that I've lost potential real, and lovely friendships because I just don't have the time (and sometimes the mindset) to properly nourish them. If you're one of them I'm truly sorry. It has completely shut me down socially. It's the strangers comparison of the boys size, with an emphasis on how big Tuck is. Followed then by a pause, or wrinkled eyebrow, since he is clearly physically behind Finn also. It's filling out the preschool checklist form that gives 1 line to explain any specific needs your child has and writing "flip over". It's seeing other kids his age play together, laugh together, and him play alone. Especially laugh together. Especially when it's Tate and Finn, who have now become extremely close. It's the anxiety, already, that he will one day be teased. Oh, how my heart hurts already for that day. It's making sure every part of your house is locked/child proofed because Tuck still can't comprehend simple commands (like anything), and also doesn't have a sense of danger (example: would walk off a cliff). It's thinking of those carefree days you used to have and missing them intensely, being angry about things, then feeling like an awful mom for feeling those things, all of which are crappy feelings. Holland looks like this a lot of days, and lately especially. It has it's seasons though, like any place.
It's good seasons are like this:
Knowing that I am the sole person in his life that he completely depends on, the one he prefers. Tuck is a mama's boy, and I don't think there has been a nap or morning where he hasn't greeted me with his giant grin. Amazing to watch such a little person be sick so much and still be so happy. Seeing the amount of excitement Tuck gets from putting a cowboy hat on my head (over and over again) is worth sitting on the basement floor for. Simple joys, all day. Or when a new game of placing oranges in a bowl is so much fun that clamping your fists and holding your breath is the only way to express the joy of it! Goodness, if I could bottle some of that up for myself. Perspectives are put in order, stacking of blocks for the first time calls for parties, nothing is taken for granted. Tuck works so hard and with gusto. Sometimes 20 minutes at one task. Such determination! It's his mad cry around 11 or 12pm, and we know now it's only because he wants to be held for a bit. He woke up and missed us maybe? Every single night. That's a great feeling.
But at the end of the day, after a real crummy day, when all my kids are in bed, and I can finally sit down and sink into my thoughts, I try to smile. I smile when I think of Tuck's giddiness just from bouncing on the trampoline, or simply running down the driveway. I smile when I think of how many times he tried to put the cowboy hat on my head earlier that day. Being in Holland isn't only about seeing these tiny moments and making them big, it's about taking the big picture and making it real. It's knowing that all those tiny moments happen and make me smile because they're teaching me, and refining me, and teaching our entire family. If I can learn small things from Tuck as our life goes on, really learn from them, than I think I will have lived up my time in Holland. It's hard to live it up always. I'll never live it up always, but I'm learning and trying.