I need some words of support....(m)
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| Wed, 09-10-2003 - 9:50pm |
First of all, tomorrow is DH and my 10 year anniversary. It's been so hard since Sept 11th to truly enjoy our "special day." I feel so guilty for wanting to celebrate when there are so many people that are grieving. The day just seems so somber.....I just don't feel right.
Second, I decided to "lurk" over on a "thirty-something and pregnant" board. I knew I shouldn't, especially in the mood I'm in, but I did anyways. It was full of nothing but "Should I have an amnio or not?" and "I'm scared to get my AFP results." I KNOW I shouldn't be taking comments personally or to heart, but it's hard when all the worrying is focused around having a child like the one you do. My heart just sinks when I read comments about how AFP's came back w/ an elevated chance for Down and people are upset and worried about what they are going to do. I have to remind myself how I initially reacted and that it is completely NORMAL to feel uncertain and upset. In fact, I don't know ANY mother that found out that their child had Down and said YIPPEE!! It's just that I can't help but feel so angry and want to post back "What the hell is so bad about having a child w/ Down?" I know I'm just on the defense......I can't help it. People are talking negative about a condition that my child has, a part of him that I find so special, a part of him taht makes me love him even more. It's just so hard to see the emotional turmoil that the diagnosis puts on people when it can be such a wonderful thing. It especially hurts when there are people that are contemplating terminating because of Down (no debates PLEASE). Daniel's life is just as valuable as any other child's....regardless of how many chromosomes he has.
I wish I could show people what it's like to live just one day in my shoes. What it's like to wake up to such a sweet, angelic face. To smell his sweet baby breath as he's quietly sleeping. To just melt when he throws his short stubby little arms around your neck gives you a hug after you read him his favorite Dora the Explorer book. To hear him laugh-out-loud when he gives you raspberries after eating a big spoonful of Rice Krispies. To sing "Itsy Bitsy Spider" for literally the 100th time because you don't have the heart to say "no more." To love someone so much that you'd give up your life in a split second for theirs. That's just a glimpse of what it's like to be in my shoes. The funny thing is that most people reading my post would have no idea I was talking about a child that had Down. Why?? Because he's NO DIFFERENT then any other child and I'm no different then any other mother who loves her child unconditionally.
Can I share something special with you? It's a poem that someone gave me after Daniel was born. I read it often especially when I need to lift my spirits. I hope you enjoy it as much as I do.
Heather
Welcome to Holland by 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


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I can understand why people are afraid but I think it's a lack of education. People hear "Down Syndrome" and they think disease, disability, and often they don't have the experience of how warm, loving and amazing people with Down Syndrome are.
I think you could do a good service if you kindly explain your position along with that poem on the Over-30 board. If I was a woman in my late-30s who knew nothing about Down and was trying to figure out what to do, I would sure want to hear from you, just to know all sides of the coin before I make such a big decision!!
I hope you and your DH have a fantastic anniversary.
Big hug,
Lauren
What a great idea about sharing my experience with those on the thirty and pregnant board! I have to agree, education is the key to understanding. I appreciate your honest and unbiased point of view.
Thanks for the anniversary wishes! We did have a great one!
Heather
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