Sunday, July 24, 2011

Positive Sunshine

She's a little bit of sunshine,
                                                          She's a smile to light your days,
She will steal your heart 
and keep it with her warm endearing ways,
She's your precious little daughter,
With a sweetness from above
Who will fill your years with laughter
and your lives with lots of love
unknown

Heart defect. Clubbed feet. Down syndrome. Bam, bam, bam. With each diagnosis I road roller-coasters of hope and anxiety. My mind kept switching which one was worse. Life threatening, deformity, irreversible. I always knew the least of my worries was her clubbed feet, but there were moments I was completely devastated over it. No baby shoes, developmental delays, casts, braces, no quick fix. Her feet took away a lot of things you look forward too with babies like swimming and bath time. They brought complications to dressing her and even snuggling with her. And we still have a long ways to go.


Two years. These braces are going to be a part of our life for two years. She already knows how to wiggle a foot out. How much more difficult will it be to confine her in them when she can undo the laces with her hands? My hips are bruised from holding her. The bar is perfect level to get me there. I've learned to pick her up away from me and grab her legs, bending her knees up, to protect myself. She's learned to sleep like this.



She's learned a lot of things a baby shouldn't have to. Like to itch her open heart scar while its healing. Or to get her brace unstuck from between her crib rails. Its harder for me then it is her, but she is always reminding me there is no need to pity her. Life couldn't be any sweeter for my little girl. She's happiest when her brothers  are around. She blushes when her daddy smiles at her. And no one can sooth her like her mama. When she gets the chance to be in water, she is in heaven, poking and splashing. But she is just as content, sitting along the pool, laughing at her brothers. She has been through more then most, but complains the least.


She is happy- content. Stereotypes are sometimes true.


I watch her bare feet play in the carpet, when we give her her hour break every day. It is a picture of complete gratefulness. It feels so good to be free, to feel something on the bottom of her feet. I love watching those tiny pudgy toes explore. She bends her legs, stretching out what the bar keeps locked in place all day- hips, thighs, knees, quads, down to her toes. And you have never seen a baby as flexible as a DS baby. That low muscle tone allows for some high level yoga when she is out of her shoes. ( One of her PT workouts is the 100- but modified to the 10. My 11 month old is doing Pilates).

I hate the process of fixing her. I hate that this is a long process. But shes happy. And its not about me. She won't remember any of the bad stuff. She will only be grateful when she is running around with her brothers with straight feet. And her happiness is contagious.



disclaimer- The stereotype that all people with Down syndrome are happy all the time is far from true. They feel pain and are hurt by cruelty just like anyone else. With that said, I have found that a lot of people with DS don't dwell on the negative. A quality that more people should have. 

18 comments:

  1. Awhh.. does she have to sleep in the braces/shoes? Or did she fall asleep that way? It doesn't look too comfortable but then its funny what we can adapt to. You have a beautiful daughter and I enjoy reading about her days!

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  2. What a sweet girl! She sure has been through a lot, more than most people ever have to go through. As her Mom I know how it must hurt your heart at times. She is a tough little girl, with a tough Mama.
    I have a question I wanted to ask you so I am going to shoot you an email real quick!

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  3. That is the perfect poem. Beautiful photos of your darling little girl. You are so right, my sister grew stronger than any of us ever expected she is now 38 and as precious as ever. The early years are very tough but it does get easier and better. Best wishes to you and your little one.

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  4. Hi there! I love your poem and your photos.. SHE IS JUST TOO CUTE! Best wishes to you and ur lil cutie! :)
    I look forward to reading more of your posts!

    Just following you from Sunday blog hop!

    You can follow me back @ http://ourlitleinspiration.blogspot.com

    Thanks,
    Angie

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  5. I wish that we could respond to messages as well, this is mine to your last posts. I did see that you recommend the amber neclace for teething and I order one for Vada.I'm a little nervous about her bitingvthrough the string and eating the amber pieces but she is always with me sonorous should be fine. As far as fionas shoes, it stinks that they are going to be such a big part of her MGS for awhile but i totally understand wanting to get fixed up and not messing around about it. I'm the same way. ;)

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  6. Hi im a new follower from the blog hop
    you have a great blog i enjoyed reading it
    please come visit me anytime
    www.jolly.blogspot.com

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  7. New follower from the hop. Hope your having a great Monday. I'd love a follow back at
    realadventuresfromamomof3.blogspot.com

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  8. Hi,

    I found your blog via a Monday blog-hop and am now following you in GFC!

    I saw you're from Florida. I'm from Southeast Florida and a new mom to a little boy, one month old.

    Your daughter is just beautiful and reading this post made my heart swell with love. She is just beautiful!

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  9. she is beautiful and absolutely perfect! what a doll!

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  10. I had the same problem as a kid with the same braces on and everything. Let me tell you 25 years later, she will be able to walk, jump, run and dance just fine!

    Be strong in this fight, she will love you all the more for it.

    Thanks for stopping by the blog hop I am now following you
    www.mummyknowsreviews.com

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  11. Hi, New follower here from the Monkey Around Monday Blog Hop!

    Your blog made me tear up. It's amazing what mothers have to do. You're a wonderful momma and she looks so happy.

    Happy Blogging!
    Rosa
    http://www.rosasmommyblog.com

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  12. Your daughter is adorable. Your poem is very beautiful! New follower from the monday hop, have a great week!

    http://wvfrugal-wvsaver.blogspot.com/

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  13. New follower...your daughter is simply adorable and I can tell she is as sweet as can be. Bless her heart for all she has to go through. Wishing you all the best!
    ~Marcy

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  14. She is beautiful, resilient, and amazing! You are blessed Shannon!

    ♡ Kyna
    http://greatexpectations-kyna.blogspot.com/

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  15. Aww baby girl! All I can think of is to send {HUGS}. -erin

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  16. Wow! Fiona is such a fighter...I can tell you are beyond blessed to have her in your family. I look forward to hearing more about her and the boys!

    New follower from http://jetsjourney.blogspot.com.

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  17. Hi.. my son was born with clubbed feet.. he'll be 4 months on the 2nd of Dec 2012. He's been in his braces a few weeks now and he's recently become more active in kicking and bending his legs... I catch his legs bent to where one knee appears to turn in often.. I'm hoping you can tell me if this is normal or not.. there really isn't enough information out there about it. Nobody tells you what to expect or what to watch out for. What's normal and what's not. You can email me.. ggmariepoetically8@gmail.com

    Thanks.

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  18. Hi.. can you tell me if it's normal for a knee to appear to bend in at times.. I catch my son like this from time to time.. he's just under 4 months and has been in braces a few weeks but is just now becoming really active.

    ReplyDelete

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