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The Secret I Never Share About My 'Miracle Baby'

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“Does your child have any special needs we should be aware of?”

Pen in hand, I hesitate. I always do when it’s time to fill in this portion of the application to summer camp or dance class or Little League.

How can I possibly explain my son in this tiny box they’ve provided?

How do I fit in the 29-week pregnancy and the panic it ended in? Where do I put his tiny, translucent body quivering under my hand as I pretended not to be shocked by the fetus they claimed was my baby? How do I summarize the glaring lights, the beeping monitors, the slivers of antiseptic soap caught under your fingernails, the constant fear caught in your throat?

Baby with a breathing tube at the hospital.

How do I say my child wasn’t held until he was 6 weeks old?

I have a hard enough time explaining it to him. I’ll never forget the day he backed away from a baby picture of his 2-pound former self, horrified by the ventilator covering his tiny face, unwilling to believe me when I promised him it was a good thing; it kept him alive! He shook his head, refusing to look at the picture again. My heart broke.

So how then do I explain him to complete strangers? How do I explain that my son is absolutely brilliant, loving, generous and undeniably hilarious… but it is possible they may never notice because he will also be disruptive.

I want to beg them to help him navigate peer relationships so his tender heart is not crushed again when he says or does the wrong thing again and is abandoned again. I want to clarify that he isn’t being rude when he says you smell bad; the scent of perfume is just overwhelming to him. He isn’t being defiant when he makes the same mistake after three warnings; he desperately wants to please but has underdeveloped impulse control. He isn’t being silly when he cries at the sound of a flushing toilet. For whatever reason, it feels like torture to his brain — a brain that finished developing in a temperature-controlled box with a needle pumping neon yellow liquid into his tiny veins when it should have been warm and safe inside of me.

I believe he was rewired, rewritten… and I’ll never know who he might have been.

That is the secret of my “miracle baby” that I never talk about. Tell anyone you have a premature baby and they have a success story to share. A girl kept alive in a cigar box. A 1-pound boy who is now a linebacker. One day, he will be taller than me. One day, his beginning won’t matter.

Only it does because I believe he is forever different than he was meant to be.

He comes running to me after an activity one afternoon, thrilled: “I didn’t get put in time-out at all today!” I celebrate with him, but I am concerned. “How often are you in time-out, buddy?” I ask.

A lot. The answer is a lot.

There’s no way to clearly define my son’s special needs. In spite of my constant explanations of his behavior, my son is often punished for things beyond his control.

When he is bouncing off the walls, screaming or throwing a tantrum and he says he “can’t stop,” he means it. He is asking for help. Please help him, I want to beg. Please pick him off the floor and take him to a quiet place. Please hold him tight. Please spin him around. Please give him space to find himself. Please don’t alienate him. Please see how hard he tries. Please give him a chance to succeed, to learn, to feel normal and included, to be liked.

Young boy outside with a hat and long, curly hair. His mouth is wide open in a smile.

I want to shove it all in, but I stare at that little box and write what I always do: “Liam has sensory processing issues. He may find it difficult to focus or relate to peers. Please contact me for more information.”

No one ever does.

Originally published: June 9, 2015
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