I saw a post on the Williams Syndrome support group facebook page.
It brought me to tears and I wanted to share it. It was written by a woman with a special needs kids, but it applies to my situation as well.

c1987 by Emily Perl Kingsley. 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.

This decribes how I feel so perfectly, it makes me cry every time.
I may have not planned on having a second child so soon, but after I got over my initial shock I was so excited! I planned what his room will look like, I bought clothes and diapers, I even crocheted him a baby blanket. I was so looking forward to the craziness of having two boys under two. I was excited.
I never thought this would happen.
I can't look at other people's babies without getting sad. I tear up when I see pictures of other people's children. And it's not like I can avoid it!
Babies. Are. Everywhere.
Babies in the hospital, babies at Walmart, babies on Facebook, babies babies BABIES! It breaks my heart. You never know how lucky you are to have a healthy baby till you have one with a disability. I know I took for granted how healthy Monkey is. He is the perfect little man; he reached his milestones earlier then most, he sleeps great, eats great, and is as smart as a tack. But there is no guarantee on how Peanut will grow, eat, sleep, or reach his milestones.
The doctors told us he would never play football. Soccer, maybe, but never football. They even told me he will never breastfeed. Do you have any idea how heartbreaking that is!? To hear you will never be able to nurse your child?! I just want to hold him and I can't even do that. I get to sit by his bed and hold his hand, I get to watch as they try over and over and over to get an IV in. I get to watch as someone else cares for my child. It's heart wrenching.
I worry so much about how his life will be when he gets older. Will he have mental disabilities? Will he get picked on? How will his older brother treat him? Will he feel left out from sports? How will he do in school? What about his heart condition, will he even live through high school?
There are so many different aspects of his life that will be effected and I worry.
But I also smile.
I smile because I have heard by many, that he will be the friendliest child that never meets a stranger. He will be great at music and will crave companionship.
Isn't is strange how a genetic disorder can effect personality?
So we will see how the future unfolds. Hopefully he won't have the harder side of this syndrome. Hopefully he will thrive and grow and never feel different. But we won't know for years.
I do know that I will love him no matter what. I know that I will love him regardless of football and good grades.
I know that I will grow to love Holland. <3

1 comment:

Aislynn said...

I can't pretend to know quite how difficult this is, but I can sympathize to a point. When we found out that Grady, at 11 months, had Optic Nerve Hypoplasia, and that it could be connected with other brain disorders, including a small or absent corpus callosum, which could severely affect a large part of his life, and a small pituitary, which could cause him to not grow and/or be sexually normal, I was so lost. Thankfully, he's ended up with a very mild case of ONH, but I do understand the initial shock and apprehension, and I'd never wish it on anyone. I had to back away from the internet and all my Googling and just spend time with my boy, since no one could tell me more about him than he could himself.

And what a beautiful analogy!

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