It's 9:03pm and the little boy is squawking in the bedroom. This has been his practice lately and while we seem to have been blessed with sleep training having been done in the hospital two years ago, there seems to be a toddler phase of sleep training happening here at our house as of late.
As is our approach, I slip into the room and sit quietly by the toddler bed. My boy rolls over and as he is wont to do lately, begins the round two ritual of 'night night'.
I put my forearm down the length of his body and lay my head down on the blankets that are bunched around his chest. My other hand slips underneath and rests sandwiched between my forehead and his beating heart just underneath the skin.
We sit quietly for a few minutes and as I move to come up for air he quickly brings his hand to the back of my neck and pulls me back down.
We resume the position. I hear his breathing begin to slow and wonder when the regular stroking of the back of my head will stop as he falls asleep.
While I'm waiting I'm starting to hear something come out of the quiet.
It's the quiet in my head, but as clear as if it was the knob on a stereo being turned, I hear it.
It's not as if I think this a lot. I'm sure compared to a lot of people out there I do, but given how much I used to think it during those first few months after diagnosis...really I hardly ever think it.
And certainly with so many more pressing things to think about these days- like what shall we do with three hours off, what will Simon bring home today from school for his art project album, what food shall we play with during therapeutic mealtimes, or lately, how long will this tantrum last, I hardly ever think about how this little boy's heart is so sick.
I think about other things related to that but not simply that.
But tonight there she was. Death was reminding me that while she sometimes looks so far away, waving us on as we pass her in our own little bizarre roller coaster/train ride, she's still keeping an eye on us.
There are other heart children that we know with Ejection Fractions and Shortening Fractions so much better than Simon's. Several of them really. Girls, boys, older, younger. They are sick and they show it. On ventilators, in wheelchairs, waiting for heart transplants.
There are even other children with numbers worse than Simon that are running and playing in ways that Simon has yet to even attempt. I don't understand it and expect that I never will.
But tonight at 9:08pm when all I can hear is "Pleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdie," running through my head, Simon shows me that there is so much more.
The volume gets turned down again and we're back to me coming up for air.
One more round of "Hug. Love" and I can sit up as he lets me go.
As I'm getting up to leave he says it again.
I'm afraid we might have to start all over again only as I turn back to the bed I can see in the dark that he is giving himself the hug and 'love' and I think there is nothing more that I could want at this moment in life.
Isn't this what all parents want?
I know that Simon will always get love from me AND I know there will come a time when I won't be the one holding him as he falls asleep. I won't always be there to hold him after something gives him an 'owie'. I won't always be there to administer the medications and schedule doctor's appointments.
But if I can instill in him a deep love of self and love of the world around him, then I can worry a little less as the independent 'do-it-myself' Simon continues to show up.
Fer sure. Totally.
Don't judge. He gets all his fruits and veggies through the tube.
Hugs and Love with Moses
Snuggles with Sophie
High Fives with PopPop
MM and PopPop with Simon and Sweet Pea