Friday, June 25, 2010

"Seeing" Down syndrome...



When did you first "see" Down syndrome in your child?
At birth? Did you know before your child was born that he or she had Ds? Did it happen a few weeks or months later?

Soon after John Michael was born and taken away to the NICU, Doug and I were told that it looked like he had Down syndrome.

As if the news itself wasn't like being hit in the stomach with a bat and my heart pierced with an arrow, we wondered, "How can they tell? What do they see?" What physical features were obvious to them that we didn't see?

I found myself picking apart John Michael body part by body part, looking for Down syndrome in his ears, his eyes, the bridge of his nose, the shape of his head and neck. I could see he had short fingers and chubby, square hands, and short toes with a sandal gap and Simeon crease underneath. I noticed he didn't cry vigorously and was rather flaccid. Internally, the doctors told us about the 3 holes in his heart (PDAs) that may or may not close on their own. This, they said, was also a marker of Down syndrome.

It was all so much to take in.

We looked, we stared, we parsed him into "parts" and rationalized away the similarities.

To us, John Michael didn't look any different than any of our 3 older children. He was ours. We loved him.
In all honesty, the next couple weeks were fraught with sadness and fear. Every pre-conceived notion I'd had about Down syndrome popped into my head. Even the word "Mongoloid" came from the depths of my soul. I hadn't heard the word in at least 30 years, and yet it surfaced. I didn't know what it meant, I only knew that people used to say that for Ds. My thoughts turned to a deep sadness predicting that at age 80, we would still have a 40 year old son living with us. We'd never have our dream of traveling after raising our children. We'd always be "burdened" by having a child living with us... an adult child that would need our constant care and supervision.

Those early weeks, I pleaded with God to please take away the Down syndrome. I prayed for a miracle. I prayed hard. I apologized to God for being angry and not being positive during the early months of my pregnancy when I was still in shock that I'd have a baby at 40.

I tried to bargain with God, but no matter how hard I begged, John Michael didn't change. But God did give me a miracle. He changed me.

And I thank God to this day for that gift. A change of heart. Not long after, I was able to see John Michael as a gift to me, to our family, to our community. I still see it every day. That's what I see, not a diagnosis, but a blessing.

I can say now that when I look back at photos of John Michael as a baby, I can "see" his Down syndrome. I really didn't see it then. I often wondered if strangers in the store could "see" it. Sometimes I felt compelled to point it out. Strange, the things we do when we aren't yet comfortable in our own skin or in the skin our child is given. Today, I can boldly say, "Yes, he has Down syndrome, and he's an awesome little guy!" And I mean every bit of it. I can "see" it, but it really doesn't mean anything... John Michael is so much like the rest of my kids, and I pray that the rest of the world won't judge him based on his appearance. If they let him, John Michael will shine for all the world to see that Ds isn't something to fear. It's just a little part of what makes him unique, and I thank God for him every day.

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28 comments:

  1. Oh, Monica. I love this... I couldn't hold back the tears when you said "He changed me." Our little guys have opened our eyes to "see" so many things....

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  2. I knew prenatally so at birth I just saw a beautiful little boy who was feisty. My pregnancy was a lot more difficult as I had lots of fears and worries through out. What would he look like? Could I do this? If I only knew what a delight and love he would be, I would not have worried. Thanks for sharing your story.

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  3. Monica, I absolutely love this post. I couldn't agree with you more and you put so many of my feelings into beautiful words. Our kids are such a blessing and I am so glad that God chose me to be Madi's mom...I feel so lucky. JM is an awesome little guy and he will continue to help you "see" even more through the years!

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  4. I agree with you, I didn't 'see' the Down Syndrome when Beth was born. Chuck even held her up for me to look at (she was a c section) and we both just gushed over her! I had professional pictures taken of her at just a couple months old and I didn't 'see' it then. It wasn't until much later that I began to see it. Maybe it was after I had accepted it. I accepted Beth instantly, but it took longer to accept the diagnosis.

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  5. great post!! and very well said! I still do not "want" to see the Down Synodrome in Maddie...only in certain looks does it show itself...and I am always shocked when others do see it...but this is becasue I choose not to see it...and me still trying to get over myself!:) (still in a little denial!) but when I do let it in she is as bueatiful as I could have imagined and as perfect as I could have hoped for...thank you for your words...they are always so helpful to me and my progress! smiles

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  6. Beautiful post Monica. It brought a few tears to my eyes too. Now as a new mom to another child with DS I'm even more sensitive about what people see and don't see in our children and I'm fiercely protective and adopting a child with DS has brought a little of that "fear" back but I KNOW the beauty of our children which goes beyond any physical or mental characteristics of DS and I keep focused on that when I feel the fear creep back up again.

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  7. Wow, this is a beautiful post. We both 'saw' it right away. But now, not so much anymore. I also wonder what people see when they look at Annelies. Sometimes I wonder if I am imagining a feeling of pity when someone looks at us in the store. Initially I wanted to tell/show everyone that everything was all right, really weird. I still think about those times sometimes :) Yeah, I sure changed. And met an incredible group of people I would have never met as a bonus.

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  8. When they first told us they thought Russell had Ds I did the same thing...I picked apart every single feature trying to see what they did, I searched his face every time I held him. There were times where yes I could see it, and I still remember how it felt to have my heart sink a little in those moments.
    In the begining I didnt want for Russell to "look" like he had Ds, I would always think "you cant really tell"...oh, how silly that seems to me now...now I want people to see it, I am so proud of Russell and everything he is that I want people to know everything about him.
    I loved this post, I love knowing other Moms have gone through the EXACT same emotions I have. Our children are such blessings and I think all of us have been changed for the better :)

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  9. You are wrong...he isn't the same as everyone else....he is better!!! There is something so special about these kiddos that I believe more than makes up for any struggles they will have. I just wish people could easily see what they are missing out on by not having a child with Ds. We found out about Ella while I was still pregnant and confirmed it with an amnio. For us, that worked best because we were more than prepared and done grieving by the time she was born. I found myself excited to look for things like the simean crease and was so excited to see that she had one. We went through all those emotions you wrote about too, but just during pregnancy instead. And oh, the friends I have met because of Ella....make it so worth it. Speaking of which, I need to make a trip north one of these days!!

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  10. Great post!!! I didn't see it and I have often wondered when I would have "seen it" if we hadn't been told by the Dr. After the Dr told us what he suspected I went into a little bit of a fog and the next 24hrs at the hospital are sort of a blur; and in all honesty I think I built up the "everything's fine" wall so that I wouldn't see it. Once we were home I would catch glimpses of it...I would take pictures and then pick them apart before deciding to keep them or delete them. I wonder how many great pictures did I delete in those early days...sad?! Now I just see Sutter, my cute chubby baby; and although I don't ever forget he has Ds, it just isn't the first thing I see anymore!

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  11. Our son, Jeff was born in 1961 when Down syndrome wasn't well-known. I didn't know for a year and a half, and then it took me a couple of years to get from "Why us, Lord?!?" to "Where do we go from here?" I wrote a book, "Journey With Jeff; Inspiration for Caregivers of People with Special Needs," so no one needs to feel alone. (Available on Amazon.com) Jeff made everyone love him with his wide smile and love of life. I earned a masters in special ed. so I could help kids who were having trouble in school (and their parents) get over the rough spots. It has been a challenging but blessed life!!

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  12. This was such a beautiful post Monica! It's funny because I read through the whole thing and was brought back to my feelings very early on. I used to go places and wonder if people could "see" the DS when they would tell me how beautiful Colin was...I remember writing a post about now knowing how to answer certain questions about Colin. Colin truly has blessed my life and I think it's amazing what a new person I am since those early feelings! Thanks for reminding me how far my family has come!

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  13. Beautifully written Monica. We knew prenatally that Jack had Ds, and when he was born I was surprised to actually "see" the signs, especially his eyes. But after the first week after we'd been told, it doesn't make me sad. Sometimes I feel selfish because I'm so happy to have him and so proud of him! These kids are truly a blessing and a gift and I'm so glad I was picked to get him!

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  14. I think this is such a beautiful post!

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  15. Beautiful post! I often wonder if people see Ds in Claire. I don't feel compelled to tell others, so I dont know if they see it or not, but would happily discuss it I could educate in some way. We didnt have a confirmed dx but did know about her heart defect so we really knew.

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  16. How true! We knew prenatally, but as soon as Elijah was born, I looked for the crease in his palm. I often wonder if other people "see" Ds. I hope they see Elijah and not just Ds.

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  17. Beautiful post. I agree with every word you said!

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  18. Well said :-) We knew about the heart defect so we had a pretty good idea that Ds was coming with it. When she came up from under the water, I saw it in her chunky neck and I said to my husband, "The baby has Down syndrome" and he said, "I know." I was then immediately distracted by wanting to see what was between the legs (since we opted for the big surprise). I think that I would have known from her neck that she had Ds even if we hadn't a clue that it was likely.

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  19. Wonderful post and an amazing photo, Monica. During Samantha's first year, I always wondered if other people saw it. If I found myself in conversation with strangers when I was with Samantha, I would bring it up, thinking that they must see it, and may think that I don't know. LOL Irrational, but part of my hyper-awareness at the time. I now don't know what other people see, don't care. :-)

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  20. I've been thinking a lot about this post Monica. It is beautiful, and I am so happy that the way you "see" the Ds has changed. Funny. I always saw the Down syndrome in John's features. I held a sonogram photo in my hands, and told the doctor I thought his profile looked like he had Down syndrome. She thought I was being paranoid, given tests didn't show any markers. Throughout my pregnancy, with every sonogram, I was waiting for someone to say, it looks like he has Ds. When they finally saw the shortened femurs, I was waiting for them to say it; instead they said they thought he had hypochondroplasia (dwarfism). The Ds physical features never bothered me; I always thought John was adorable. I "see" the Ds more in his actions at times, and I will admit, at times it still really gets to me. Without a doubt though, John is an amazing little person. To know him, really know him, is to love him.

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  21. You wrote this post for me. I needed to read just exactly what you read. I see the stares when we are out with Olivia. When she was younger, I did not think that others saw the Downs, but when people started approaching me and talking about it, then I knew that they did. Sometimes, now I just get the stares. I know that they see it. She is so happy and we are happy with her. I just don't want people to see it as such a bad thing. I want them to give Olivia a chance and not just judge her at first glance. I know that God is changing me because Olivia is just perfect the way she is!

    Tina in TX

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  22. hi,

    just letting everyone on my bloglist now that i have a new site now- http://mylittlecheekymonkeys.blogspot.com/. the site henry's mommie will no longer be in use. everything has been transferred over to my new site!! hope to see you there.

    heidi

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  23. Beautiful. So true! I don't know if everyone else can see Lucas's Ds but I don't care either. He's beautiful and that's what I see.

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  24. Beautiful. I could feel your words! I had a long journey (as you know)! I don't really see her Down syndrome anymore, but sometimes the "world" reminds me. But that's OK, because I am no longer part of that "world".....

    Thinking of you!!!!!!!!!!! :)

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  25. Such a well-written and heart felt post. I 'saw' the DS immediately after Kayla was born. It was suspected during pregnancy (no amnio) so maybe I was looking for it too. I could see it in her eyes right away...I think I would have noticed it even if I wasn't looking for it. But now ... most days I don't 'see' it any more. She's just Kayla, my daughter :)

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  26. Beautiful post!! Rings so true for me too.

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