Curse the Night

Christmas Day, 1:30 am.

I lie, awake, next to Martin, in his bed. He too is awake. Christmas Eve he went to bed about 8:30 pm, eager to get to sleep so that Santa could come, and dropped off immediately. Adrian was seeing Star Wars: The Force Awakens with my father and brothers, so I had time to finish wrapping gifts and even bake some ginger spice cookies, which turned out terrific. I thought about updating my Facebook status with some ditty about the peace and tranquility of Christmas Eve.

At 11:40 pm, just as Adrian and I had gone to bed, Martin woke. Night waking, like bedwetting, is so rare nowadays that I can’t remember the last time it happened. Martin can still take a while to fall asleep, but once he does, he’s out till morning. Tonight, he called out, saying he thought he saw it getting light outside, and asking whether Santa had come. I told him that it wasn’t even midnight yet, and that he could go back to sleep.

He hasn’t gone back to sleep. He is so concerned with getting back to sleep for Santa Claus that he’s worked himself into an anxiety attack, crying and wheezing. Adrian spent some time trying to comfort him, to no avail. Since 1:15 am, I’ve been here, in Martin’s bed, soothing him, hoping for sleep of my own, wondering what Christmas Day will be like when I’m exhausted.

Here’s the thing about being awake in the middle of the night: When I’m lying in the darkness, all my fears grow. Every single fear. From work deadlines to household finances to body image—they get worse. Problems loom insurmountable. I think about this issue and that issue, this concern and that concern, until finally I crash into the unmentionable fear: that if Martin never recovers fully, this will be my life forever. Autism will be my life forever. There will never be a time when my child achieves independence. There will never be a time when I can turn back to my non-Martin goals, to what I want to achieve for me.

Why do I call that fear “unmentionable”? Because it is selfish. Because it borders on blaming Martin for my own shortcomings. Because it affixes my personal journey to factors that depend on Martin but over which he has no control. Because my official position is that Martin will recover fully, and it’s only in the wee hours that doubt makes inroads. It’s only when I want to be sleeping, or reading, or writing, or even working, or anything other than lying next to a boy who can’t stop fidgeting, crying, laughing—only then do I think, “What if he’s done getting better? What if this is as good as it gets?”

It’s just better not to mention it.

Christmas Day, noon.

I must have dozed off, in Martin’s bed, sometime after 2:00 am. I woke at 3:50 am to find him asleep, finally, and then I returned to my own bed.

I woke again at 7:45 am, to the breathtaking melody of Martin, down the hall, conversing with my father, who is visiting. (Yes. Conversing. Answering questions and asking them in turn. How old are you, Poppa? That’s old. I’m seven. What year was it when you were seven? Grandma was already born then. Are you older than Grandma?) We had left one special gift unwrapped by the tree, and Martin played with that until everyone was up and ready to open gifts. Once all the gifts were unwrapped, Martin asked:

“Is there another gift to me from Santa?”

I realized right away what he wanted. The trombone. When he’d made his Christmas list, he’d included a trombone. At the time, the trombone seemed no more desired than the other gifts, most of which he received. In the day or two before Christmas, long after all gifts had been purchased, the trombone acquired new gravitas. Martin began to speak frequently of the trombone Santa was bringing him, and how he planned to learn to play the trombone, and how he would become good enough to play in a marching band by high school. Trombone, trombone, trombone. But seriously, I was not going to interrupt all other plans to procure a toy trombone.

“No, honey. I think that’s all that Santa brought you.”

Martin started to cry. “‘You get what you get?’ You just get what you get?” He was quoting our pastor, who upon assigning parts for the Christmas pageant had told the kids, “No complaining. You get what you get.”

I conveyed to Adrian why Martin was upset—I mimed playing the trombone—and Adrian moved in to comfort him, explaining that Santa might have thought that he is still too young to learn the trombone and needs to wait another year.

And then—Martin pulled it together. He was still upset, but he stopped the tears and moved to pouting and whining instead. No full-blown meltdown. No screaming. He asked, “Santa thinks I’m too young? Maybe next year?” All in all, the response seemed more age-appropriate than autism-indicative.

It’s noon now. Everyone has eaten a special Christmas breakfast, which was gluten-free French toast with cranberry compote. Martin played with his new gifts (he’s favoring a set of Beatles figures, and also a “play the trombone” app I downloaded hastily to his iPad) and then accompanied Adrian to the gym. My brothers are playing backgammon. My father is napping. The house is quiet. I’m starting to prepare Christmas dinner: cannellini-bean latkes, roasted Brussels sprouts leaves, and quinoa pilaf. Last night’s fears are last night’s fears.

I’m thinking about updating my Facebook status with some ditty about the peace and tranquility of Christmas Day.

To Martin, on Christmas

Martin, my love, my bunny rabbit, happy Christmas.

It’s been nearly four years since we began biomedical interventions to help you regain your health. If you read this one day, I thought you might like to know how Christmas 2014 looked.

This was the first season that you took an interest in Santa. Daddy and I have never done much to talk up Santa at home, so I’m not sure where you caught the faith. But you did. Since mid-December you’ve implored me to text Santa your holiday wishes, continuously, as they sprang from your head. I had to change Daddy’s contact information in my iPhone to “Santa Claus,” because with each outgoing text you inspected the screen to confirm that Santa would receive the message:

Santa Claus, Martin wants me to tell you that he did very well and played games today.

He would like you to bring him a Knuffle Bunny for Christmas.

Santa, Martin would also like Rudolph.

And a golf club and a golf ball.

And a calendar for January.

Santa, Martin finished all his soup!

I may never erase those text messages.

You approved the idea of lighting a fire to warm up the chimney for Santa, and you agreed that we should leave him a snack. I have to apologize: I forgot to leave a snack last night. This morning, when I saw you headed toward the family room, I grabbed a clean plate and a couple orange rinds from the counter, beat you to the fireplace, and claimed they were evidence of a snack consumed by Santa. Forgive me that! Know that I tried to hum your Santa vibe 100%, until you asked, “Will Santa come into my bedroom and give me kisses?” That was creepy.

You received pretty standard kid-presents. A lot of books. That Knuffle Bunny you asked for, along with a stuffed Paddington. A solar-system wall chart for your bedroom. Daddy bought you a fancy sweater; he’s that way. A family friend gave you a telescope! We can’t wait to assemble that.

I was a disappointed that you didn’t show much enthusiasm opening presents, or for the Rudolf-the-red-nosed-reindeer breakfast I made you. That being said, it didn’t take long to track the pathology of your indifference. Halfway through breakfast, you asked to “take a break” on the couch. Soon after that, you developed a fever, and snot streamed over your mouth and chin. You were sick, sick, sick. You are sick, sick, sick, with a fever and everything. That might not excite all parents. For us, remember that we passed years wherein your body never managed the healing reaction of a fever. In 2014 we’ve welcomed three or four fevers.

Our friend Edwina came for Christmas supper. I made everyone’s meal GAPS-compatible (with the addition of quinoa): deviled eggs and peanuts as hors d’oeuvres, then quinoa-vegetable stuffing, kale salad with cranberries and homemade dressing, salmon, mashed cauliflower, hazelnut-zucchini bread, and chocolate-avocado pudding, berries, chocolate chunks, and my own meringue cookies for dessert. A fat lot of good all that effort did: You weren’t well enough even to come to the table, let alone eat. At least Daddy and Edwina enjoyed the food.

The feast we had without you.

The feast we had without you.

We used “FaceTime” to talk with your family in South America and across the United States. Your sickly participation, though lethargic, was good-natured. Throughout the day I texted your U.S. grandparents and your uncles bulletins on your condition. I was worried that, having slept so much of the afternoon on the couch, you might not be able to fall asleep tonight. Your Uncle Rudy, from California, told the whole family that he was sure you would fall asleep fine. It’s nearly midnight now, and you’re still awake. Plainly, your Uncle Rudy is not a reliable predictor of these things.

You were supposed to go to the local Jewish Community Center tomorrow (Friday), for an all-day social program. That would have given me a lot of time to prepare to leave 7:00 am Saturday for Florida. Unless you make a miraculous recovery over the next eight hours, I’ll keep you home tomorrow; Saturday morning—please may you feel better by then—we’ll embark less than ready. Don’t feel bad. It’s not the first time I’ve scrambled to get it together for vacation. It won’t be the last.

Martin, my love, my bunny rabbit, may you cherish these days. Happy Christmas.

The breakfast I made you yesterday. You complained about eating eggs.

The breakfast I made you this morning. By then you weren't hungry because you were getting sick.

The breakfast I made you this morning. By then you weren’t hungry because you were getting sick.