This has been a hard week.
James is doing great. His heart failure is under excellent control. We haven’t adjusted his medications, so he remains on a dose suited to a 5 pound baby. He is currently 7.5 lbs! This is great news, because it means that we are weaning him down on his medications, which gives us more wiggle room should we need to go back up on them to control his failure. It will also help us push off heart surgery until it is really necessary. He is awake more, and everything else seems to be functioning pretty well – especially for a trisomy 18 baby.
We’ve adjusted mostly to the moving him around with his oxygen tubing, feeding tube, and pulse oximeter cord. I won’t lie, it’s still a hassle, but we are accustomed to it. I don’t allow myself to lament much about the things that are difficult to do – going out and about in public, wearing him easily while I do household tasks, breastfeeding – because it doesn’t help anything, and it isn’t going to change anytime soon.
All in all, I’d say we’ve settled into a routine. I am even working. Alison and her kids were able to come and stay with us for 3 days, and it was just like old times, before our third baby joined the world.
And what that has led to is a false sense of security. A false sense of timelessness. I feel like we are living day-to-day, rarely looking ahead much farther than a day or two. I feel like we are encased in a bubble of safety. That James is going to stay like this forever – a tiny, sweet little infant without too many significant problems. Magical thinking at its finest.
And then Skylar died. Skylar was a tiny little sweet baby – 5 months old. I’ve been following her videos and her parent’s posts for several months. I knew she was struggling with losing weight. I still wasn’t prepared to open Facebook and see that she had abruptly died in the night. I felt like I’d been punched in the stomach.
Since then, I’ve felt anxious, stressed, hollowed out. I feel like I need to cry, but it’s been hard for me to do so other than the first bout of tears after getting the news. I feel like the tears are sitting behind my eyes – a storm cloud that refuses to open up and release the rain. My chest is tight and hollow.
I was cooking dinner for tonight (I have to work), and James was in his bouncy chair in the kitchen supervising. He fell asleep and I moved him to his cosleeper and went back to cooking. When I turned around, I was confronted with his empty bouncy seat. My heart contracted. Some day, that bouncy seat will be empty for all time. Some day, I won’t need his cosleeper and his beautiful baby blankets and his tiny fuzzy socks. I would like to think that it’s because he’ll grow out of them, but my brain knows better. My brain has read the medical literature. My heart refuses to acknowledge it.
Today, there are so many parents (trisomy parents and otherwise) who already face that empty bouncy chair.
My heart aches for all of them. My heart aches for us – for me, for James, for his sisters and father, for his grandparents.
Little Boy Blue
The little toy dog is covered with dust,
But sturdy and stanch he stands;
The little toy soldier is red with rust,
And his musket molds in his hands.
Time was when the little toy dog was new,
And the soldier was passing fair;
And that was the time when our Little Boy Blue
Kissed them and put them there.
“Now, don’t you go till I come,” he said,
“And don’t you make any noise!”
So, toddling off to his trundle-bed,
He dreamt of the pretty toys;
And, as he was dreaming, an angel song
Awakened our Little Boy Blue—
Oh! the years are many, the years are long,
But the little toy friends are true!
Ay, faithful to Little Boy Blue they stand,
Each in the same old place—
Awaiting the touch of a little hand,
The smile of a little face;
And they wonder, as waiting the long years through
In the dust of that little chair,
What has become of our Little Boy Blue,
Since he kissed them and put them there.