When Your Child’s Disability Becomes Visible

The indoor playground at the mall was crowded with the typical, just before naptime crowd.  Moms sat chatting on the benches while their kids played on the squishy, soft sculpted foam ladybugs and slides made to look like logs cut in half.

Josh was watching Haven play, while I trailed along after Eisley, making sure that she didn’t crawl too far away from her little backpack containing her feeding pump and bag with her toddler formula that she receives through her NG tube.

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While I helped Eisley stand against a bright blue beetle, a toddler waddled over to us, intrigued by the cool little backpack sitting on the floor.  She grabbed the syringe of water sticking out of the front pocket, and her mom swooped in from the side, and said, “Oh, that’s not yours!”

As she handed the syringe back to me, she asked about Eisley-what her name was, how old she was, you know, just the regular mom to mom chat.

“She’s 17 months,” I told her.

And then, just for the shortest moment, I saw the flash of confusion across her face.  After a beat, she told me that her little girl, (who was much bigger in size and proficiently walking around), would turn one in a few days.

“Oh! Happy birthday!” I told her.

We parted ways after agreeing that it was just about naptime for both of our girls, and I brought Eisley to a new section of the playground.  But I couldn’t help feeling just a little bit alone and just a little bit…visible.

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Eisley is getting to the point now that her disability is more obvious to those who don’t know her.  She wears braces on her feet, has an NG tube on her face, that is sometimes attached to a long tube and a little backpack, and she is much smaller than other kids her age.  The mom I was talking to was taken aback when I told her Eisley’s age, because she looks and moves more like a 7-8 month old.

I am usually not very sad that Eisley has a disability.  In fact, most of the time I either forget about it, or I treasure that aspect of her because it helps make her who she is.  But sometimes, especially now that she is to the age where her typical peers have far surpassed her in gross motor skills and in size, I get just a little sad, sinking feeling in the pit of my belly.

Seeing kids younger than her running around is a reminder of where she would be, of what she would be doing, if she did not have spina bifida.  And seeing others see that makes it even harder, because they don’t get the chance to see who I see-a girl who is strong, funny, smart, and loving.

As I was disconnecting Eisley’s feeding pump after her feed was done, an older gentleman came up to me.

“Ma’am, do you mind if I ask about the…”, he asked, pointing to his face, indicating Eisley’s NG tube.

“Oh, not at all,” I told him.  I explained that she was born with spina bifida, so she had a portion of her spine surgically closed up after she was born.  She has some challenges with mobility, and also some oral difficulites as a side effect, which causes her to need supplementation with a feeding tube.

“Oh, that’s a feeding tube?  I thought it was oxygen,” he told me.  He went on to ask if he could put her on his prayer list at church, and of course I agreed.

“She’s doing well, she just needs some help with some things like eating and getting around, so we could always use prayers.”

Those kinds of interactions usually don’t bother me.  I love to educate and advocate.  The more that people know about spina bifida, and see that disablilty is not shameful, the better the world will be for Eisley and others with disabilities as she grows up.

As she gets older, and is using her walker full time, it will become even more obvious that she has a disability.  Maybe I’ll get more used to the stares and feeling like we are under a microscope, but maybe you never get used to those things.  It’s all a learning process, that’s for sure.

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