Just got the mail today and as I was reading through a newsletter, I came across the essay below. It brought me to tears. I have the hardest time expressing, even to those closest to me, how much I am affected by Colin, how it has changed everything in my life. This is the closest I've come and since I tend not to express myself the way I should on this issue I thought maybe this would help me do just that.
I am not intending to make anyone feel bad through this post, so just keep that in mind when you're reading this.
But, most days, I really feel like no one around me gets this. I can't ever really talk openly about it to anyone. Jeremy understands it and deals with it in his own way, but even that is different from the way I deal with it. Most people downplay it, because that's the socially correct thing to do. A lot of people avoid it. And many people think I make a bigger deal of it than it is...his condition is so mild, you can barely tell you say. But, I know! It's there! He knows! It's there! It makes me cry or want to cry everyday, because this is and always will be his life. Full of doctors and probably surgeries, things popping up all the time. Things always going a way you didn't expect. He'll always get looks; people will always ask questions. And, I as his mom have the hardest time with the answers. Mom's are supposed to have the answers, but on this, I don't. And, quite honestly, It's just not fair. And, most days I hate that.
No matter how many surgeries he has, the looks and questions will always be there. I love him the way he is, but hate that he has to deal with any of it. He deserves normal. I know he has a good life, and I intend to make sure that it is always that way. But, that doesn't change the fact that he will always have to deal with this and noone, not me, not his Dad, noone can change that. And, plain and simple, it's not fair. Not at all.
I'm not looking for pity or as I said trying to make anyone feel bad. You shouldn't have to get it. How can you get something you've never done? Noone expects you to understand physics unless you've gone to school for it. I get that. I just wish that someone else got me, understood that this all consumes me. Although, this is honestly something I really never want to have in common with anyone else. I think about it constantly. I hurt about it daily.
Welcome to Holland
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 never would 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."
by Emily Perl Kingsley
1 comment:
When we first found out Alivia was sick a friend of mine who's child has a heart condition and has had 3 surgeries since his birth 2 years ago sent me "welcome to Holland" and like you I felt so excited to have it in words. That is just how I feel too. I posted that on myspace and my blog. If you need to really talk about it I would love to talk...cause I know exactly how you feel. Being a mom of a kid who is sick isn't what I expected either.
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