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The Dance

If you live with a child who has a developmental disability, you know life is a dance, two steps forward, five steps back. I’m convinced part of the reason we endured the NICU was to prepare us for this same type of dance with Little Man.  It’s been a summer of forward and backward movement with him.

We went to the beach the other day. Typically, we have to fight to get him there, and he is inevitably asking how much longer we have to stay within half an hour of our arrival.  He went with a friend on Monday. We caught up with them later, after Big Man finished cross country practice.  When we got there, he was in the water with his friend, on his boogie board. He’d been there almost the entire time, my friend informed me. “Seriously? This is Little Man we’re talking about, right?” But sure enough, there he was, farther out in the water than I’ve ever seen him, having the time of his life. The difference? He had a wet suit on. It still amazes me the little things that will make such a huge difference for him. He spent most of the three-plus hours we were there out in the water. And for the first time ever, he wasn’t anxious to leave, was disappointed when it was time to leave. A wet suit. Who knew?

The pool is usually a trouble spot for him too, but he’s been a swimming fiend this summer. My parents even commented on in when we were out to visit them back in June.  Instead of begging to leave within minutes of our arrival, we had to drag him out when it was time to go back to the house.  I have no clue what the difference-maker is for this one. We haven’t introduced any new tools. I think he is just more comfortable and confident in  his swimming abilities, and his siblings were taking the time to play with him.

We’ve had our backwards steps as well. Last night at dinner, he reached maximum capacity, and the tears started to flow. He was tired. It was really loud in the restaurant, and we’d been at the pool, in 100+ degree temps, all afternoon. We’re away from home, out of routine completely. I took him outside for a walk while Spouse, Big Man, and the Princess finished dinner.  At the Princess’ recital last week, I had to take him out the lobby before the first half was done to decompress. He stayed out there most of the second half of the show (and I am so thankful for other moms at our studio who get him, and stayed with him so I could watch the Princess dance).

He’s had his share of meltdowns over the last couple of weeks. We are most of the way through summer. He’s ready for the routine of school, but even that brings some anxiety as it will be a new school, a new environment, a new routine for him. Some days lately, we have five steps forward, and then ten steps back. I feel I’m walking a tightrope, wondering from second to second what’s going to come out of him emotionally.  But then he will walk up to me, give me a big  hug, and tell me he loves me, and we both breath. We’ll get through, and we will keep on dancing.

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