Holidays
My son’s first Christmas, Santa visited the NICU and handed out teddy bears. My parents were in town, a visit planned months earlier when we felt certain Evan would be home by Thanksgiving. Instead, they witnessed Evan’s third and final eye surgery, and the conversation afterwards with the retinologist. “I’m sorry,” she said. “I did everything I could.”
That year, I couldn’t bring myself to put up a tree. Instead, I sat on the couch and told a friend, “I know it would make me feel better to have a tree. But I just can’t.”
The next Christmas, none of us quite knew how to make a new life during the holiday season, and so we played at the old. I made myself put up the tree. And then the gifts came. Friends and family sent toys my son could not see, hold, or use. Each gift addressed to him became my daughter’s instead. I never expected that every present might be a harbinger of how much our lives had changed. Each discarded toy was further proof of what my son would never do: roll a truck across the floor, turn the pages of a book.
We spent our third Christmas in a new home, the first one we had owned after years of renting, a small house with a lovely view of the mountains across the way. This time, when I went to set up the tree, I saw how I might create new traditions. Where would we put the tree? In the corner, out of reach? By the living room window, where the lights could be visible from the street?
I decorated the house. I told family members to send Evan clothes instead of toys.
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Each year, the holidays remind me of what I already know: it’s hard to celebrate, to watch typical kids grow up, while my son remains stalled, progressing (so very slowly), and developing (at his own pace). I acknowledge my son’s achievements every day, but around Thanksgiving and Christmas I also seem to notice his differences the most, when relatives call to ask “What’s Evan into these days?” or “What size is he?” The questions that come each December mark the time that’s passed, and not.
“He’s still the same size,” I’ll say. “He’s a bit taller, but hasn’t gained much weight.” Or, “He’s still into musical toys, maybe a new keyboard? I wish I could be more help, but honestly, not much has changed. . . .”
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If the holidays remind me of how little has changed, they also remind me of how far we’ve come. Early in December, seven years ago, friends hosted a baby shower for me. There was no talk of special needs, no sense of what our lives might become. Instead, one of them mentioned a friend whose son was blind in one eye but who still played football. “He has to look behind him a lot, so he doesn’t get sacked, but he can catch a ball and still score touchdowns, no problem.” Early that December, I still thought I might have a son who was simply blind in one eye. And a future footballer. No problem.
Just a few weeks later, by Christmas, that image had become a distant memory. Instead, I saw my parents off at the airport in utter disorientation. This was Christmas? A son in the hospital and all this cheer? Each moment became a marker of reasons not to feel joy.
But that second year, and the third, in our new house, the holidays came more easily. I bought lights and made ornaments for Evan’s teachers. I forgot the first Christmas, the bad news. I forgot I ever hoped my son might play football.
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This year, my husband bought Evan a CD, one he slipped into the player with a flourish. “Everyone needs a copy of Christmas With The Chipmunks!” he announced. With the first strains of Alvin singing “Rudolph, the Red-Nosed Reindeer,” Evan dissolved into laughter. So did his older sister, who wanted to know why we hadn’t bought that CD for her when she was younger. For the next forty minutes, they laughed along to the same songs I remember hearing as a small child, the ones that made my own little brother and sister laugh just as hard.
This year, we are mended around the new truths in our lives. There will be gifts under the tree, lights on the house, and The Chipmunks on the CD player. And that, as a friend of mine likes to say, is something to celebrate all by itself.
12 replies on “Holidays”
Vicki, its a relief to know I’m not the only one who has struggled with holiday cheer after the premature birth of my son. I’m going shopping later today, and I think I might just purchase a Chipmunks Christmas CD. Thanks for your beautiful words.
Beautiful! I can relate to your emotions so well. I still feel strange telling friends to shop in the “0 to 6 month” toy section for my 5 year old Jenelle. And like you, we are starting to need to replace some of her favorites. The first Christmas after her diagnosis was hard as it was difficult to imagine a child without toys. But with time, things get easier!
Merry Christmas to you and your beautiful family!
“This year we are mended around the new truths in our lives.” Merry Christmas, my friend, and thank you for this beautiful essay.
Vicki, you’ve done it again, touched upon something I thought I was unique to my experience with my daughter who has Down syndrome. The issue of toys.
I am supposed to think of new toys to buy her, when she is happily playing with those her sisters used when they were three. It hurts to have her in what seems perpetual toddlerhood, and I had buried that feeling until your column helped me realize it.
Now, of course, I’ll have to post on this, thanks for another inspriration!
OT/Have you ever concidered Stem Cell for you son?!!!I love your column…I have 2 ASD boys and I will try this for my boys!!! I know that there is hope in all areas, one of them is sight!!!Love, Gabby. :0)
P.S. Also look in to The Institutes for the Acheivment of Human Potential (in Philadelphia)….they are also helping on this topic…
The holidays always make me feel simultaneously happy and sad (even before we had Avery in our lives)…this post captures that feeling so well. Beautiful!
Oh Vicki, so beautiful! (And may I say I am excited to be first to comment on one of your posts for a change!) I can relate to so many of these feelings, especially the overarching theme of redefining celebration, and joy, and family, and how it all changes. Sending you hugs, and giggles, and all our best wishes for new traditions and joys and celebrations this year.
This is a touching, raw and lyrical piece. It rings true with the lovely, different boys in my own life–a 19 year old Autistic cousin, a close friend’s young son. Thanks for this– Jan
I love reading your columns! Makes me miss our monthly get togethers, but at least I get to keep up with what’s going on in your life. I love hearing about how Evan’s changing. Even though it seems incremental to you…It’s big!
Miss you…
Traci
I guess I see your story differently then others! I have seven adopted special needs children, anything from severe behavior to deafness, to a 13 year old twin without sight and a 60% brain loose. My point is, I never listened to what the doctors told me, like any other child, I left the child discover the world for themselves, just like a so called normal child. Our family motto is, it’s not what you can’t do, it’s what you might do if someone gives you a chance. My twins that came to me at 3 months of age, with no chance of living, celebrated their 13th birthday this past September. My newest twins came with a lable that said, keep the world safe from these children. One is deaf, and at age 4 1/2 has to learn sign and to use hearing aids. They have been here for 8 months and are doing remarkable well! Love your children for who they are, not what you expected them to be!
This small, good thing reminds me how simple and not easy strength is.
The dynamic of gifts for one child becoming gifts for the other has happened here as well — along with the tug of making the same suggestions year after year (“board books, the best bets are the ones with bright colors and multiple textures” I found myself saying yet again this year.)
Chipmunks. Hmm. That has possibilities!
Thank you for yet another touching and beautiful column.