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



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