The Wild Ride

I decided this morning that having a special needs child is basically like being on a roller coaster ride that never ends. There’s no real final goal or destination; it’s just endlessly going, sometimes rolling along up high, sometimes plummeting down so suddenly your breath is taken away.

I always hesitate to post about the more emotional, difficult side of our journey, because I don’t want to show myself as negative. I’m not usually. I’ve spoken for the past 2 years, though, about how sometimes it just catches up and overwhelms. I have a few bad days, I shake it off, and I carry on.

This time, it’s how Danny seems to always master something, and we get so excited, and then he just…stops. For a while he was saying “hi” when we said it to him, then he stopped. For a while he was showing off his tummy when we asked where it was, then he stopped. Other times he’ll show something once that is obviously not a fluke, like stopping short when we ask where his monkey is and turning around to pick it up, or echoing “mown” after we ask if he wants down, and then he’ll never repeat it. Enough of those add up and it’s like there’s an overflow point where I start to obsess.

Is it all just coincidental timing and he’s not really learning these things?

Is he losing skills because his calcification from the CMV makes it impossible for him to retain?

They say something about losing skills and autism – is he autistic?

Is he ever going to learn to listen and speak?

Did we put him through 7 hours of surgery for it to fail?

Breathe, Kelly, breathe.

The truth is – and I know this! – there are no answers for us right now. Whatever he will or won’t do, he’s going to do it, and he’s going to do it on his own time. Instead of all those other things he used to do, he’s trying to sing now, and learning all the actions to songs we sing a lot both at home and at school. My husband tells me to be patient, and my initial reaction is, “It’s been 2 freaking years already – how much longer do I need to wait!”

As long as it takes.

I stared out the window after he said it last night, watching paramedics take a stretcher out of the back of an ambulance and disappear into a neighbor’s house, and took a few deep breaths. He’s here. He’s healthy, which is a miracle all to itself that we don’t have to deal with hospital visits and medical fragility. He’s walking, and eating, and laughing, and snuggling, and making cheesy faces for the camera, and rolling trains across his train table and up the wall and over my leg, all because he can.

So the roller coaster starts its slow climb again, because the drops are quick but the rises are slow, and then we’ll be sailing along again. After all, any ride with this adorable child (who has to be one of the cutest kids on the face of the planet, seriously!) can’t be too bad.

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  • ((HUGS)) Brandon had a lot of developmental delays. He didn’t have the same issues but I can relate with your post in a lot of ways. Keep doing what you are doing.