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Sunday, September 28, 2014

Hypotonia

Upon first seeing her on the playground, you may notice her unsteady gait, or you may catch a glimpse of her braces peeking out from her pink tennis shoes as she makes her way across her classroom floor.  At times you may see that she is unable to keep up with her peers, and that she sometimes sits hunched over, head tilted back, her tired body unable to provide any more support.  There are many things you may observe about my Ceci...about her disability...

But one thing I will never do, is ask you to pretend it isn't there.

Because her disability is very much there.  It is just as much a part of her as her piercing  blue eyes and blonde wispy hair.

For me, Ceci's disability is not something to be ashamed of or that needs to be ignored.  It is not ugly nor something that needs to be hidden.  It is not a thing to be whispered about behind closed doors or only mentioned at doctor's appointments.  It is our reality.  It is our every day.

And because of this, I will never ask for you to pretend it isn't there.

I do hope that you do not only see a disability when you look at my Ceci, because there is so much more to who she is.  So much beauty.  An enormous amount of happy.  Lots of belly laughs and dimpled smiles.  There are sweet songs and soft cuddles.  A big sister's unconditional love and a family's unwavering support.  There is much mischief to be had and countless memories to be made.  A little bit of ornery and a heart of gold.  A love for baby dolls and ice cream.  A stubborn streak.  A social butterfly.  A silly ball of energy.

And hypotonia.

Hypotonia is not who she is, but it is a part of her, so I will never ask for you to pretend it isn't there.

Because the only way you can truly appreciate Ceci's strength and sheer determination (two of my favorite qualities about her), the only way you can sincerely marvel at her perseverance, and the only way you can truly celebrate her numerous accomplishments is to see her disability and the beauty that exists all around it.

7 comments:

  1. I'm visiting from Daisy & June's post today! I admit I had to google Hypotonia. I couldn't stop reading so I kept clicking on the post below to find out more. You have a beautiful, precious daughter and she has a one-of-a-kind mom! God knew what he was doing when he blessed you with your pretty little girl and blessed her with such a caring family. Praying for you and yours!

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  2. Hi, I am visiting too. I didn't know much about the condition either. I too will be praying for her and for you as well. Such a wonderful little girl. Thank you for sharing.

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  3. Alli and Mary, thank you so much for not only reading and commenting, but taking the time to learn about hypotonia. I will continue to share our journey and hypotonia information each week, but it is so exciting to learn that others are reading and raising awareness as well. Daisy and June followers are the best. Thank you for your beautiful comments.

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  4. Stopping by from Daisy & June. Your sweet girl sounds like a precious and beautiful little girl! Thanks for sharing your journey. I will be visiting often.

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  5. Katherine, thank you so very much for stopping by! I am so thankful for all the love from Daisy and June. You all rock

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