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 am glad that you and DH have decided to celebrate your special day! I have often thought of all of the children born 2 years ago on a date that everyone remembers. You need to celebrate and hold on to the happiness in life.
Thak you for sharing that poem. I had never thought about life issues in this light. There have been times when you expect one thing and you get something totally different. It truly makes you think. I also thank you for sharing your experiences and family pictures. You are touching many women here and probably helping more than one.
Have a great date with DH!
Teera
I had to smile when you spoke of changing your sister's diapers. I have fears that I'll be changing them when Daniel's 13 too! LOL
We've come to a time in life that unfortunately everything is about conveiniences. If things don't fit into OUR lifestyles, we don't want to deal with it. Unfortunately that comes to children also. Your sister was alot of work, there's no denying that, but her disabilities didn't stop her or you from truly understanding, enjoying and most importantly APPRECIATING the true importances in life. I know that I've been forever changed by having a "special child". I also know that if confronted with the opportunity to do it all again, I'd do it in a second!
My prayers and blessings go out you and your "very sticky" baby! :o)
Heather
Oli
Katie
Married to highschool sweetheart since 8-12-02
Your post was so touching! I can't tell you I know how you feel because I don't have any children yet, but I did work as a teacher's aide in a preschool special education classroom last year, so I've spent lots of time with children with disabilities. I can tell you truthfully that they are some of the SWEETEST children you'll ever meet, but I'm sure you already know that! I had read before the poem that you posted...it was in a book that we had in our classroom for parents of children with disabilities. It never gets old, though...that writer had such a wonderful way of explaining the experience of having a special angel like your Daniel.
I'm very thankful that I had the experience of working with the kids I did last year...it really did change my life! I think if I were to have a special needs child, I would be able to deal with it much easier after falling in love with all my little angels I met last year. OK, now I'm going to have to go see them all soon! I miss them! :)
BTW, ~*~HAPPY ANNIVERSARY~*~ today - I hope you and your DH have a wonderful, love-filled day! Give Daniel a hug for all of us! :)
~ADC~
Happy Anniversary!
That was a beautiful poem.
Jeremiah 1:5 "Before I formed you in the womb I knew you, before you were born I set you apart.
A wonderful Lord we have! Daniel is perfect! Just the way he was made. He has a wonderful mother and it was all planned long ago.
Daniel is blessed to have you, and you to have him.
Enjoy Enjoy!
Love, SHaryn
First of all, that poem was beautiful and so very true. I may not be a mother of a child with downs but my sister, only two years younger than me has it. I've been like a second mother to her. My mother has told me about her delivery and how they wisked my sister away without telling my parents why. (This was before all the tests). Hours later they came back and told my parents there might be something wrong with her. I can't even imagine the fear my mother had. (she was only 25, she didn't fit the statistics). But she knew that God gave her my sister, Shalane, to her for a reason. He gave her to all of us to help us have patience, an understanding for all who are "different" than we are, and a love for her that is unlike my love for my brother. I am much closer to Shalane than anyone else in my family. I've been away from home for two years now and I hate not being around her. She is truly a blessing unto our family and I would have it no other way. Heather, God has blessed you with a beautiful child. He wants to teach you some things along the way. There will be hard times yes, but when he smiles and plays with you and tells you he loves you it makes it so worth while.
I'm sorry some people are ignorant and fearful of people like my sister and your son. It's mostly because they just don't understand. There were many times I wanted to scream at people for staring at my sister. I used to stare back, now I just ignore them. Maybe our part is to help educate those who don't understand in any way we can. God put us here to care for your son and my sister and love them and they will do the same for us. I can't tell you how lucky you are to have a son like Daniel. He'll bring so much happiness into your life.
Happy anniversary!! Go celebrate!
Sheena
How very sad for those poor babies....never given chances. Wanna here something pretty scary? 90% of babies with Down are terminated. NINETY-PERCENT!! Pretty unbeliveable. It makes you wonder why they call it a "pregnancy support" center. Okay....I'm off my high horse.
Hope things are starting to "wind down" for you now. I know that you've been pretty busy lately. Remember to take time for yourself okay?
Heather
Thank you for sharing your story with me. It's so nice to hear how your life has been changed by the better just for knowing someone like Daniel. He truly is a miracle!
Heather
Heather
Your post really struck home with me. I could relate to everything you said, including all the "stares." I too used to stare back or even ask someone what they were staring at. I finally realized that I was resorting to exactly the rude behavior they were. Instead I just smile now or have Daniel wave to them. You'd be surprised how many of those stares turn into smiles and conversations. I've also had to remind myself that Daniel is a beaustiful baby and people do tend to stare at pretty babies. :o)
Sheena, in the short 2½ years since we've been blessed with our angel our lives have changed so much! He's taught us patience, understanding and acceptance. He's taught us to SLOW down and appreciate everything life has to offer, including the mundane things. Daniel has taught us how to love unconditionally and how unique each and everyone of us are.
Thanks for sharing a small part of you with me.
Heather
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