My son was having trouble falling asleep last night. His room was hot, as it usually is, after having the sun shine through his window most of the day, so I told him to climb into my bed where there was enough of a cross-breeze to keep him comfortable.

I lied next to him and watched him drift off. After a few moments of sleeping peacefully, he experienced that sensation of falling where you gasp and your entire body jumps. Then he settled into his pillow and dozed off for the night.

That sensation is called a hypnic jerk and my son used to experience them a lot when he was young, especially when he was sick. And, he was sick all the time.

In the mere seconds it took for his body to jolt, my mind traveled from watching a typical kid going to sleep, to the very ill child I used to know. His hypnic jerk not only shook his body, but shook my memory as well.

I thought of the heart monitor that went off constantly and the sound of him gasping for breath as his nasal passages filled with the contents of his stomach. I remembered watching him play with toys in a hospital crib, three hour long appointments with neonatologists and geneticists and him crying in pain because we just couldn’t get his meds right.

I thought of him weighing 13 pounds on his first birthday and how his GI doctor was this close to putting him back on tube feeds because of it. I remembered therapy sessions where he didn’t do anything but lie there because he simply didn’t have the energy to do anything else.

I thought of his heart diagnosis, his surgeries, and his struggles with eating, crawling, walking and talking.

I remembered everything.

I was reminded that all of those things are deep inside the boy I know now. He is tough, yet parts of his body are still weak. He is strong, but he is very small. He is smart, but still talks like a three year old. He is healthy, for now.

Although his struggles are much easier than they once were, he still faces an uphill battle each and every day.

I needed to be reminded of that; to know that he tries his best and has to work twice as hard as an average kid. I have been trying so hard to make him typical that I have forgotten that he, quite simply, isn’t.

My son is different. He is one of a kind and I wouldn’t want him any other way, even though I forget that sometimes. He is a challenge, but that makes his accomplishments all the more special. I needed to be reminded of how far he has come.

Thanks for the jolt, buddy.

Follow

Email