36. Sky People

“Sky People”

We are baaaaaack in New Jersey! Many hours of flying are behind us, thank heavens, and though we did have to submit my mom’s precious homemade pachadis and podis to the agriculture peeps at Newark airport, they didn’t make us throw any of it away. That’s good. No one wants to see a grown woman cry over squandered spices in public. I would have too. Ask G. I did it once. And I’m not going to tell you that story. 😉

We tried a huge experiment for this trip. My husband showed up last weekend and attended the wedding, while A stayed in New Jersey with a trusted babysitter. It took a lot of planning and coordination and slogging, but it worked out beautifully. A was content and engaged, thrilled to have the full attention of a one on one caregiver, and he showed off to the fullest. All the effort and expense were worth it because of one huge hurdle she managed to make him cross–she got him to quit drinking water out of those infernal disposable three-ounce cups, and transitioned him to a steel water cup. I cannot even tell you. It has been years of defeat for us. And now it’s done. I don’t care one bit that someone else achieved it and not us. I’m too busy leaping about gleefully that IT’S DONE. Of course, he is now trying to lay down the law about which exact steel cup, but that’s just who he is.

It had been twelve years since my husband and I were in my hometown together. That kind of disconnect doesn’t feel good. Over the years, I had begun to pull away in my heart because I felt so isolated when I left him and A to go back. I would land there and feel sick and empty throughout my whole visit. There was no sense of harmony between the two worlds, and I would count the days till it was time to return, which made my guilt over my terrible attitude even worse. And when it was time to return, I took away a wrenching sorrow because I couldn’t seem to mend the jagged pieces. Twelve years is a lot of years.

Holidaying together is something lots of families can take for granted. My husband was only there for three days before we all flew back together, but neither of us took a single moment of it lightly. I couldn’t stop looking at the tableau. It filled me with such tremendous and ridiculous happiness. A not being with us was the one missing puzzle piece, but we both needed the respite. And this time, when we left, I didn’t feel all torn up and thrown away. I felt good about returning, with no caveats.

It’ll be a long while before we can afford another trip like this, with respite care costs thrown in. Hopefully not another dozen years. Respite is often the most neglected component of the special needs family’s life. And for people like us who are not native to where we live, that means a lot of holidays spent on our own, maintaining routines and seeking out activity when the country grinds to a halt for Christmas, snowstorms, and random long weekends. Sometimes it’s peaceful and comforting that way, and sometimes it takes a lot to tell ourselves that no holiday lasts forever. We do love being home, nesters and cocooners that the four of us are, and this December, we will have some wonderful memories to talk about. A has already begun looking through the photos on my phone so he can figure out where we went.

We owe a great deal to the babysitter who took on this duty so cheerfully, and who made A’s days pass so pleasantly. Special needs professionals end up becoming family too. How can they not? It is as if we let go of the piece of sky that we usually hold over A, that represents our love and protection, and the respite caregiver picks up the piece and holds it up while we are away, nodding at us as if to say, “Go. He’ll still have the sky.” It takes a person of great character to stand up and do that for a family.

I was massaging A’s little spine this evening, and he smiled at me with unabashed joy. It mirrored my own heart. He enjoyed showing off for someone else for a few days, but he’s happy to have his sky people back. As are we, A. As are we.


2 thoughts on “36. Sky People

  1. Aargh! This was gorgeous and heart-rending (in a good way) as always. LOVED having you here with me, however briefly. In all your accounts of A’s interactions with people, one thing stands out to me: yes, others help hold the sky over him, but he’s doing it too. Each time he shows off for them, responds to them, lets them into his world, he’s helping that sky to stay up. All hail the Sky People! May your shadows never grow less ❤


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