"My Story..." Monday: What's Wrong With Her?

I'm taking a bit of a departure from the "chronological" story of pregnancy and subsequent birth of C. to talk a bit about a whole 'nother huge part of of "my story"... the story of parenting a micro-preemie. After all, that is my story too. More, it is my life. It will always be my life. And it's something important that I want to share...

Today I'm addressing the question:

What's wrong with her?

Here's the very short answer-

She is very near-sighted and needs to wear her glasses at every waking moment. She has a speech delay along with some motor delays. Therapy will be an important part of her life for the foreseeable future.

So there you go. There's my former micropreemie daughter in a nut-shell. But what child fits in a nut-shell??? Certainly not mine. That description doesn't really tell you much of anything relevant about my little girl. Well, it does tell you to look for a child with glasses, but that's about it.

• It doesn't tell you that she's a social butterfly with oodles of friends.
• Or that she dreams of being Cinderella, not for the prince, but for the dress and the horses.
• It doesn't reveal her amazing belly laugh that is so contagious that children and grown-ups alike jump through hoops to amuse her.
• It tells you nothing about how much she loves red pepper flakes on her pizza and the skin left ON her apple, thank-you-very-much.
• You wouldn't know that she loves to dance with her Papa, kiss her baby sister, and say "Thank you, honey," in a drawl-y imitation of her mama.

And, really? Those things are so much more of "who" she is than the above description.



"What's wrong with her?"

It's hurtful. I guess that's really what I want you to know. It was hurtful back when she was a baby with an NG tube and a nasal cannula. It's hurtful now too. I KNOW everyone is just curious. And I know they marvel at how, well, typical my little girl is "all things considered". I really do get that. Just remember, perhaps before you seek to indulge your own curiosity by asking that question...

Many parents of children with special needs have to ask themselves that question every night as they lie in bed. They worry over it. Cry over it. Lose sleep over it. The last thing they want to do is answer to strangers throughout their days.

I want to encourage you to embrace all the little differences and idiosyncrasies that make our children special. Be open-minded and receptive. You'll learn all you need to know- I promise!

All without ever bruising a feeling.