Wednesday, January 22, 2014

WAGR Wednesday~ Sleepy Baby




If you’re a parent of a child with WAGR Syndrome, I know you will recognize the sound of this…

       Someone is sleepy…
      Looks like someone missed her nap…
      Oh, are we keeping you up? 
Sleepy Baby…

Only, when I’d hear these comments, my baby was wide awake, she just couldn’t keep her eyes open!  I know, I know…was that really a reason for me to get frustrated?

Tammie, they didn’t KNOW when they said she looked sleepy that Evie had WAGR, or aniridia, or vision impairment.



You’re right, they didn’t.  But, there’s a certain amount that I could tolerate, I mean, it was overwhelming how many times we would hear it when we were out in public.  My sister can account for it…”Six ‘sleepy baby’ comments and we are outta here,” I told her one day when we went shopping in Madison.

It didn’t take long…and, thankfully, my sister was counting right along with me, so she turned on a dime, and walked out of the store we were in when the 6th “Sleepy Baby” comment was made.

I remember her saying, “Okay, that was really annoying.”  And it wasn’t because people meant harm, and it wasn’t ignorance, and it wasn’t insensitivity; it was just unbelievable how many of those comments I could get day in and day out when Evie was a baby.

On the flip side, (and this is how God has a sense of humor), we had the totally OPPOSITE problem when Evie had her surgery to correct the ptosis (droopy eyelid).  Her eyes had to be “slung” open, so then, for a while after the surgery her eyes NEVER CLOSED.  

Seriously…

Do you know how freaky it is to look at your toddler with their eyes wide open and staring into space because they are sound asleep?  Doo-do-do-do, Doo-do-do-do (insert Twilight Zone music here).

So, we’d be at stores, restaurants, and doctors appointments, and people would try talking to her…but she wouldn’t respond at all. 

“Oh, she’s asleep…” I would say.

Imagine the looks I got THEN! And, you don’t really start telling someone about WAGR or aniridia in a brief passing moment like that, so I just left many people confused and in disbelief.

Because Evie’s eyes wouldn’t close, we had to put an ointment in them several times a day to keep them lubricated and healthy.  We still have to put the ointment in at bedtime because her right eye doesn’t close completely even when she sleeps.  But, I would take that any day rather than her not being able to keep her eyes open.

I wrote a poem about the “sleepy baby” that accompanied me for the first 20 months of her life…


No, My Baby Isn’t Sleeping
No, my baby isn’t sleeping,
Although her eyes are closed.
She’s wide awake and knows such things
A baby shouldn’t know.
No, my baby isn’t sleeping,
She just woke from a nap. 
Her smile makes my heart burst with pride
And I love to hear her laugh.

Evelyn means “living light,”
She’s that and full of grace,
She was knit together by her Father’s hands,
Not born through random fate.

I see my past and see how I’ve been shaped to handle this,
And how God’s brought you to my side
For strength and encouragement.

God tells me his thoughts are higher than mine,
That I can’t understand his ways,
But someday soon we’ll be glorified,
And he’ll wipe our tears away.

No, my baby isn’t sleeping,
She’s singing her own song,
I hear her twinkling melody,
And know she’s growing strong.

No, my baby isn’t sleeping,
Her life is full of joy and fun,
She’ll have challenges and trials along the way,
But with her faith, she’ll overcome.

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