valley forge

valley forge

Friday, March 21, 2014

Trisomy 21 a.k.a. Down Syndrome




This is my favorite photo of our family. It was taken a few years ago in front of The Orchard House. This was the home of Louisa May Alcott. It is located in Concord, Massachusetts and it is where she wrote Little Women.

This was a wonderful day, but the reason it is my favorite is because it is a true picture of our Annie...smiling, loving life, wringing pure joy from the moment. That's my girl!

Today, March 21st, is the day the Down Syndrome community picked to celebrate, inform and advocate for D.S. Why? Because Trisomy 21 means an extra chromosome...three rather than two on the 21st gene...3/21. They do not know why that extra, perfectly normal chromosome causes all the trouble that it does. It happens at conception.

We are so fortunate that Annie is healthy. She was diagnosed with two heart defects when she was four months old. They resolved on their own and, though she still has a heart murmur, she did not require surgery...for which we are most grateful. 

(Those are real chickens in that basket!)

We have made decisions along this journey that were difficult, but we hope were the best for Annie. Annie has a tooth that is behind the others. We chose not to put braces on her because they would have had to stretch her pallet. We worried that that change to the roof of her mouth would alter her clear speech. Not to mention the pain (I wore braces, lots of pain!) and the fact that when Annie felt her first loose tooth she tried to remove it herself...with a spoon. She came to me bleeding, with her tooth perpendicular to her gum saying,"Take it out!". After this I imagined what she might do to all the hardware involved with braces. 



We have known people who have had their children's tongues reduced, eyes altered, cheek pads slimmed down, given them growth hormone injections, removed tonsils and adenoids...for reasons we cannot comprehend. Annie did have eye surgery when she was four for strabismus..."lazy eye". We tried glasses and when they did not strengthen her eye, we opted for surgery. Without it, she could have lost the use of that eye. It was a day surgery, and she went to ballet class a day later.  We moved when Annie was two and while packing I found a couple of tiny pairs of glasses hidden in outrageous places..my girl was an expert, at the age of two, at hiding and destroying glasses! We went through many, many pairs!


It is a life altering experience, having a child with special needs. It has changed our lives in ways too numerous to list here. There are difficulties and there are blessings. We have had dark days, shed many tears and, most assuredly, asked why. But...we have also laughed till our sides hurt at what we call Annie-isms, shed tears of joy and delighted in the smallest accomplishments. The stereotypical image of the happy, sweet child with Down Syndrome is inaccurate. People with D.S. are as diverse as the rest of use. We are fortunate that Annie is extremely happy and sweet, but she can also be stubborn and unrelenting...just like the rest of us. 

This post is getting way too lengthy, but I hope you will read the narrative essay below written by Emily Perl Kingsley. We met Emily and her late husband, Charles, and their son Jason, who has D.S., many years ago. Emily is an Emmy Award winning writer for Sesame Street, but those of us within the D.S. community know her for these words...



WELCOME TO HOLLAND
by
Emily Perl Kingsley.
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.

                  *************************************************************


I have visited eleven countries in my life...one of them was Holland. I have never been to Italy. 

Enjoy the day,
Robyn

             
                 
    





















46 comments:

  1. Robyn, this is a beautifully written post. I enjoyed reading your thoughts and am happy you have shared from the depths of your soul.
    The poem "Welcome To Holland" brings so many thoughts to mind and can be applied to many of lifes twists and turns.
    Thank you for sharing.
    Rose

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    1. Hello, Rose...I'm always happy to share our adventures with D.S. Thanks for coming by.
      R

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  2. What a wonderful post, As I have told you before I run a book store with developmental handicapped adults and my most capable person is a down syndrome young woman. She lives in her own apartment with supports and will let you know when you are doing something wrong. She just flew to Arizona on her own from Boston ( a parent on one end and parent on the other) She amazes me daily and I am very blessed to know and work with her. It is amazing what they have to teach us.
    Cathy

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    1. Hi, Cathy...Always love to hear great stories about people with D.S. and their accomplishments. Thanks for sharing.
      R

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  3. Beautifully written. I too am the mother of a special needs child (CP) and know the pain and the beauty that comes your way. You're family is beautiful!

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  4. ....let me catch my breath! Incredible post - cannot thank you enough for sharing.

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    1. Thanks, Kathleen! Glad you stopped by!
      R

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  5. Robyn,
    This is so beautifully written. Thank you for the glimpse into your lives. I can't imagine the hardships and desicions along the way. But praise the Lord for the gift that is Annie and the joy she brings. I so appreciate you sharing your personal experiences and information about DS. Blessings to you and your family. Hugs, Lori

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    1. Hi, Lori...Thanks for your kind words. The three of us have a lot fun together and our favorite thing is just being together.
      Thanks for visiting!
      R

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  6. Ah, you've made me cry. Such a beautiful post. Thanks for continuing my education in such a beautiful way. (My DS had strabismus surgery at age 4 too!)

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    1. Thanks for coming by, Margaret. Hope you're having fun with your "lad" home. Have a great weekend,
      R

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  7. Robyn,
    I share your feelings about Annie and thanks for the DS information. What we have in common are our daughters. My Sandy has Williams Syndrome. It is compared to DS, but we have a missing #7 chromosome. The disorder was first diagnosed in 1961. Sandy was born in 1964. At the time doctors were not familiar with WS and always had to ask about it. We had very little guidance and help, so we limped along. Since 1961, a lot has been learned and they all typically have what is called 'Cocktail Personalities'. Sandy is doing well and can take care of her needs on an acceptable level. She is loved and adored by all who know her as I am sure of Annie.
    Another thing for sure, Sandy and Annie are Special Angels and a gift from above.
    She is my best friend and number one daughter of whom I am most proud.

    As always, Peace and Blessings to all,
    Barb

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    1. Hi, Barbara. I'm sure Sandy is, indeed, an angel. You were real pioneers! I'm sure even today you know more about WS than most doctors! Thanks for visiting and sharing.
      R

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  8. Morning Robyn, such a touching warm post. Love the pictures of sweet Annie, such a blessings that girl is, you are blessed. Thanks for sharing, Hugs Francine.

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    1. Thanks, Francine...always happy to hear from you. Thanks for the kind words.
      R

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  9. So Beautiful Robyn! Those photos of Annie are precious especially the one with the chickens!! I love your writing... from the depths of your soul and heart! You are blessed to have gifts such as these... and I am blessed to have met you and your family through your blog!! Annie's smile could melt the snow here in the north land! Please give her a (((big hug))) from me today!!!
    Cathy G

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    1. Thanks, Cathy...such kind words! My blog friends bring me lots of joy and I am grateful for every lovely comment. I read the comments to Annie and she smiles ear to ear. Thank you :).
      R

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  10. What a beautiful post! 'Welcome to Holland' struck home the first time I ever read it so many years ago. Our Brie, the survivor of a massive stroke in in utero, has provided us with so many similar blessings and challenges. She has outdone and outlived every experts' prediction so many times we stopped listening. We live every day one day, hour or minute at a time - whatever it takes to make the best of them for Brie. Three of four of Brie's closest friends in the world, outside our family, have DS. The blessings that have come from all of them can't be described. Best wishes, and thank you for sharing.

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    1. Thank you for visiting, Greta. Thanks for sharing your story about your Brie. :)
      R

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  11. Your post is rich in wisdom and love Robyn. Even though Annie has special needs, she surely ended up in the right family. I can see joy and pride in her eyes. She's such a sweet and pretty girl.

    We all have our crosses to bear and as long as we do the best we can with what we have, life is beautiful.

    So appropriate to have today as Down Syndrome Awareness Day.
    Thanks for this Robyn. Happy Spring to you Annie and your husband.
    Hugs,
    JB

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    1. Julia...thank you for such lovely words! :) You always bring a smile to my face!
      R

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  12. Robyn, thank you so much for writing and sharing this post.

    Annie you're beautiful! Love all of your pictures!

    Happy Spring!
    Audrey

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    1. Thank you, Audrey...always enjoy hearing from you!
      R

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  13. Robyn a truly beautiful post! Thanks so much for sharing your and Annie's story.I have always felt that a child with special needs is a special gift from God.If we only open our hearts and eyes we can learn so very much from them.Annie is a beautiful young lady and I thank you for sharing your angel with us.Be blessed,Jen

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    1. Thanks, Jennifer...for your kind words! Glad you came by for a visit.
      R

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  14. Dearest Robyn,
    Your post truly touched my heart today!! I am without words to really express what I feel so will just say Thank you for sharing your life and your precious girl Annie with us!! She is a treasure........and so my friend, are you!!!
    Sending LOADS of Hugs to you both~
    Julie xoxo

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    1. Thank you, Julie...you make me smile! That big, red lipstick kiss on your cheek is from me! :)
      R

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  15. Thank you for your post. I follow Annie on a regular basis. I to have a special needs daughter,Katie ,she is twenty five. Katie is mentally retarded and functions on a toddler level. She also suffers from a severe seizure disorder. I had never read the story and found it so accurate. My husband says that Katie does what we were all created to do and that is to love and worship Jesus with our whole hearts. She loves to sing worship music with her iPod (of course we are the only ones that understand her). Thank you for opening your life and home up for us you do not know how comforting it is for us who also have special children.

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    1. Hi Glenda...so happy you came to visit. Our special girls are great "life coaches" aren't they? They show us what love is all about...aren't we blessed?
      R

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  16. Beautiful, loving post. Thank you.

    Linda

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  17. Annie is just beautiful ! A special little angel, for a special family.....what a touching post......

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    1. Thank you for the kind words and for visiting.
      R

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  18. May God bless you and keep you all in the palm of His hand...................

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  19. Beautiful post, Annie is a beautiful girl inside and out!

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  20. Robyn,
    What a beautiful post. LOVE all the pictures.
    Thank you for sharing the essay. Very thought provoking.
    Hugs to you and Annie, of course :)
    Lauren

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  21. That is so heartfelt. I don' t comment much but I do appreciate all you do with your beautiful daughter, Annie. Thanks for educating the general population a bit. (me included!)

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  23. I have always thought God gives special children to special people. Your family is an inspiration to us all.
    nancee

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  24. she is a wonder!
    no one may know your hardships!
    but wow! they won't ever know your joys either!
    loved the piece at the end!
    hugs and blessings on your journey!

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  25. Thank you so much for sharing your beautiful post. Annie is just a gorgeous young lady. Look at that amazing smile! She is a blessing.
    Hugs..Marg

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  26. What a beautiful and amazing young woman you are raising . . .
    Holland is beautiful! L

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  27. You have a beautiful daughter. Thank you for sharing your families' story. Blessings to all of you.
    Charlotte

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  28. Pure joy and sunshine!
    God has blessed you Dear Friend.
    Many Blessings to you and your Family.
    Ginat bear hugs to Annie :)

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