Looking out over the surface of the pool, I'm briefly disoriented. I see something out there that I don't recognize at first, but then I am snapped into awareness.
It's Jack.
Terror washes over me. I am a more than capable swimmer, yet I am frozen on the spot. There is nothing I can do but scream. He's drowning, his little head bobbing below the surface, and there's nothing I can do about it.
Mercifully, I wake. It is 3 o'clock in the morning. I race to Jack's room, needing confirmation that my boy is safe in his crib. He is. I return to my bed, but I will not fall asleep again tonight.
The next day, I'm having a conversation with someone about Jack. The question comes up, "How can you not feel like this is the worst thing that could ever have happened to you?"
I think back to that recurring nightmare. That nightmare that is all too real. That nightmare that is a very legitimate concern of mine. I think back to that before answering...
"No, it's not the worst thing that could have happened. At least he's here."
---
It has been on my mind since yesterday. After reading Kate from Chasing Rainbowspost about the impending loss of her son, I have been reminded of the fragile reality of our children. Special needs children can and do face dangers and medical issues that typical children either don't or - in the case of many safety concerns - can negotiate without the same kind if assistance.
Jack has choking issues associated with his feeding disorder and dysphagia. I have had to do choking first aid on Jack to help him when he was choking.
We have wondered - from time-to-time - if Jack was having absence seizures. We have been told to catch it on video before Jack's pediatrician will refer us out for an EEG. We've yet to be able to capture it on video, but videoing it isn't the first thing that has popped in my mind when it happens.
Jack is a wanderer. He can't swim. He doesn't always respond to his name. In fact, when he's wandering he typically doesn't. He's in his own little world.
All of these things give me reason to be concerned. They are what keep me up at night. They are the things that I know make the mortality rate for autistic children higher than it is for their typical peers. I know this; it's part of our reality.
I know it is for many of you as well. Being a special needs parent comes without the crystal ball that so many of us so desperately want. Yet we go through each day putting those fears on the back burner because we are determined to live our lives. I don't know about you, but I refuse to be ruled by fear. The fear does creep back up occasionally, when he wanders, when he chokes, or when he has one of those staring spells. It is always there, waiting in the background.
However, it is through the stories of children like Gavin and his mom Kate that I am reminded that each and every moment is precious. It is those stories that make me hold my boy a little closer - a little tighter - if only in my heart.
Last night, when Jack fell asleep, I took advantage of the time - time in which he was peacefully at rest and would not get upset from the closeness of my snuggles - to hug, kiss, and snuggle him a moment longer. Even after an evening in which my boy seemed closed off to us through his stimming, I was so grateful that he was mine. He - in all of his sweet deliciousness - is mine. He is here. Though we have our struggles, in that moment there was peace.
I will be grateful for every day I get to look at his face. I will pray that I get a lifetime more.
Hold your children a bit closer tonight, and do it for those who can't.