Monday, December 5, 2011

Moment's Captured: MY Mylie

This post is in response to a prompt by two fabulous bloggers, Galit at These Little Waves and Allison at Mama Wants This.  They had this amazing idea to capture a person in image and words.  Theirs are lovely as are so many others that have already linked up.  The moment I saw them, I knew that I had to do this.
I chose to capture Mylie in mine.  I wanted to do this for Mylie because her labels are so ever present on my mind and tongue.  You see, unlike my sweet Isaac, Mylie’s disabilities aren’t obvious at first glance.  Unlike Conner, her disabilities aren’t shrinking into the background.   If we DeZarns are (proudly) square pegs, Mylie is a hexagonal one.  The world isn’t cut neatly to fit her.  Her issues are too big for some settings, too small for others.  She doesn’t fit nicely into pre-prescribed boxes.
In order to be sure she gets services she needs, to be certain she is safe with other caregivers, I have to say: 
·       Please remember loud noises upset her
·       Please remember that while she’ll jabber your ears off, she usually can’t tell you if she’s hungry, or thirsty, or hot, or cold
·       Please remember when she’s tired swallowing is difficult and potentially dangerous
·       Please remember she does not understand much of what you say
·       Please remember she’s doing the best she can
·       Please remember sitting still is not in her wheelhouse, it could be a seizure
·       Please remember my baby is not perfect, or fine, or well

Yes, my friends, this mama knows all of the things Mylie isn’t and, while I am immensely proud of her, I cannot afford to let the world forget all that she lacks.  However, this mama also knows my girl is magical, miraculous, stunning. 
So today, I share in words and image the things that the world has to know but also the words of my heart.  The pink words, because all words that are truly important to my baby girl are pink, these are the ones that I celebrate with you. Thank you, thank you Galit and Allison for providing this opportunity to do so.


http://theselittlewaves.com



<a href="http://www.theselittlewaves.com/" target="_blank"><img border="0" src="http://theselittlewaves.com/wp-content/uploads/2011/11/MemoriesCaptured1.jpg" /></a>

20 comments:

  1. Oh, this made me tear up. She's beautiful, truly. And your love for her, shining through in those few words.

    Thank you for sharing Mylie with us, and for linking up.

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  2. It's those eyes that get me - wow. Love the close up, stunning!

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  3. @ Alison, so glad you fabulous ladies had this idea. I cried as I made it as well. They were good tears, soul cleansing ones. The thanks goes to you.

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  4. @ Coffee Lovin' Mom, Thank you. In this pic, those eyes are watching Elephants, her favorite thing in the whole world:)

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  5. Beautiful. Your words, your daughter, and the love you have for her.

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  6. Amanda, thanks so much, I loved yours as well.

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  7. Such a heartwarming words and she's just so beautiful. Thank you for sharing this.

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  8. Oh my heart, this is so very beautifully written.

    You splayed it all out there and mostly what I see here? Is pure love.

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  9. I don't know her and can't quite grasp how it is to have children with these different kinds of needs, but what a beautiful breakdown of everything. She's very blessed to have you for a mommy. :-)

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  10. It takes a special mommy to lay it all out there like that. What a blessing!

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  11. Wow this really touched my heart...what a great mommy you are. She is so lucky to have you...and you're lucky to have such a precious girl!

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  12. @ Galit and Maureen Thank you all so much for the kind words.

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  13. @ Jessica, funny, I've worked with people with special needs my entire adult life. I had a stepsister with special needs, I thought I knew so much more than I did before becoming a parent. Thank you for your kind words.

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  14. @NayLahKnee and Natalie, I so wonderfully blessed to have her and her siblings in my life. They make me a better mommy, they make me a better person. It's hard not to improve, at least a little, when you live surrounded by miracles. Thank you all for coming to my blog and sharing Miss Mylie with me.

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  15. An excellent tribute to her! She has got the most beautiful blue eyes - but I'm sure you know that :-)

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  16. Your little girl is beautiful!

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  17. Oh my goodness...she is stunning. I love how you wrote this, and that picture is perfect.
    Thank you for sharing her with us all :)

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  18. This is beautiful. I love how you put her special needs, but then something special about her with it.

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  19. Thank you Lisa, Shell, Jen and Andrea for all of the kind words and for coming to my blog:)

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  20. This is so beautiful, it melted my heart reading your captions of Mylie.

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