A few weeks ago I posted our “Christmas in July” card. Christmas in July has come and gone. Jimmy John Jack was kind. But I want to write about something else, something amazing–and an amazing woman who makes it all possible. I’ve changed everybody’s names and a few key things to protect the privacy of these remarkable people, but this is a story too good to keep to myself.
Two years ago
“Yes, I know Alex,” says Erica, the woman who runs one of the few summer daycamp programs in town. “I was at his school last year. I’ll be happy to have him. I always tell parents when they sign up that we have kids of all ages and ability ranges at Next Steps, and everybody deserves respect. I have zero tolerance for mean-spirited teasing, name-calling, stuff like that. Knowing Alex, I don’t think it’ll be a problem, but I just want to make sure that we’re all on the same page.”
I have no idea if we are or not. Alex has never shown any real proclivity for mean-spirited teasing, but I am not sure if that’s because of inherent nobility, or because it hasn’t yet occurred to him to consider differences reasons for mockery. But Erica seems to have faith in him.
I sign the check, and Alex becomes a day-camper. He is just starting fifth grade.
The first few days are rocky; Alex has had a tough year; we moved to town just a little more than six months ago, leaving the only home he has known on about three-days’ notice. He was a trooper, but the year has taken a toll.
A week in, and Alex has found friends. When I pick him up he tells me about Josie, Becky and Jake, Kevin, Edward, Beth, and Matt–particularly about Matt. Matt is nice. Matt lives next door to our town chocolatier (and yes, we do have one). Matt has a Play Station. Can Matt come over sometime? Can he go to Matt’ house sometime?
A couple weeks in Alex comes out to the car and asks me to go inside with him. He wants to introduce me to his friends. We walk in and I meet Becky. I meet Jake. I meet baby Olivia, Erica’s tiny daughter. And then I meet Matt. I am startled to learn that Matt has Down Syndrome. Matt is outgoing, personable, and engaging. He shakes my hand, asks me, “So. How are ya?” And then he cocks his head and waits for an answer. I am not certain what to say.
As we leave that day I am struck by the fact that while I looked at Matt and saw first that he had Down Syndrome, Alex looked and saw a friend. That was when I got my first inkling that Next Steps was going to be something special.
A few days later Alex says, “I dreamed about Next Steps last night. We were all out in the jungle and we got caught in quicksand and Beth came and saved us all.” I tell Erica. She laughs, turns and hugs Beth–a sweet-faced girl so quiet and shy I have yet to hear her speak. Like Matt, she has Down Syndrome. “Yeah,” Erica says, laughing, “Beth’s our angel.” Beth smiles sweetly at her feet.
In late June Alex and I begin preparing for one of our favorite holidays–Christmas in July. The custom began when Alex was very small. For some reason that will forever remain a mystery to me, as the summer heats up and the air conditioning runs more and more I become obsessed with Christmas. For years I have done a large part of my Christmas shopping in July, stuffing everything into cupboards. The years it was the worst I would take out my boxes of ornaments, sort them, rewrap them, hold them in my hands, and dream.
The year Alex turned five I took it a step further–I set up our tree, decorated it with summer silk flowers and fairy lights, bought small gifts for the children in his daycare group, baked sugar cookies, and threw a Christmas party.
Christmas in July has become an institution in our house–we even have our own gift-giving magical visitor-Jimmy John Jack. Alex wrote a letter to him one year. Jimmy John Jack has become an indispensable part of the holiday. This year we invite Next Steps to Christmas in July. We load the tree with summer silk flowers–enough for everyone to take home a bouquet. Each child gets a small ornament. We decorate sugar cookies and roll chocolates into nuts and candy. We dip strawberries into white and milk chocolate. Everyone goes home high on sugar and Christmas.
Summer ends, and Alex goes back to school. He enjoys his classes. But he misses Next Steps. He begins to ask if he can go there after school to see his friends. I call Erica, and she says it’s fine. Next Steps becomes Alex’s after-school place.
The next summer he goes again, and the next school year he asks to go to Next Steps after school. He can’t go as often because he has started middle school. There is band. There is wrestling. There is track and field. The day Alex has his first wrestling tournament he wins his first bout. It is a wonderful beginning to what will shape up to be a challenging season. The next day he says he wants to go to Next Steps. I drive him there after school, fresh from victory, and wait in the car while he climbs out and trots inside. And I watch through the window as the Next Steps regulars gather around him in a tight little pack. I see him talking, and suddenly fists everywhere shoot into the air, and the pack surges in around him in a massive group hug.
I watch that and for the first time it occurs to me that the giving hasn’t all gone one way; Alex brings something to these children’s lives that they might otherwise not experience. When he asks to take his tuba in to play for them a few days later I agree. We pull up and he climbs out of the car. Somebody inside sees him and the pack surges out into the parking lot to gather around him while he wrestles the tuba out of the back seat.
Many hands help him carry it inside. I drive away, leaving him to his moment of glory. A few days later I cross paths with the band teacher. “Alex’s doing great,” he tells me.
“I’m glad to hear it–I know he enjoys band. He took his tuba to Next Steps to play for the kids,” I tell him.
“Oh, so that’s what it was,” he laughs. “The choir teacher told me he was in the DMV right next door, and he heard somebody playing the tuba. Couldn’t for the life of him figure out who would be playing the tuba in the DMV office.”
And so it goes. Alex develops a tripartite life: home, school, and Next Steps. And each offers him something different. At school he excels in his classes and in band, and begins to understand and strengthen his body. At home he learns to help with the housework, plays games, and begins the process of growing from a boy to an adolescent. And always, there is Next Steps, and the core of friends he made the first year.
The next summer the group is smaller, and Next Steps moves out of its storefront and into its own building. The change shakes Alex, and he begins to ask to stay home. I wonder if maybe he feels he has outgrown Next Steps. Erica calls, then comes over, and we talk.
Alex hesitates, but then says it’s not as much fun as it used to be. Erica agrees–the move has been a challenge, coming right at the beginning of the summer. “But,” she says, “It’s hard for me, too. I don’t know when you’re coming, and when you come late, or at different times, you miss out on some of the fun stuff we do.”
The lesson is for me as much as for Alex. We have to a great degree seen ourselves as passengers on the Next Steps train, customers who arrive and expect to be entertained. As Erica talks to Alex about how knowing his schedule would make it easier for her to plan fun things I realize that she is absolutely right–we have been discourteous and selfish, and I have allowed it to happen because I never really thought that our presence or absence mattered.
We arrange a schedule with her–and we stick to it. And Alex again enjoys going. Still, though, Erica and I can both see that he is growing and changing, and while he still loves Next Steps, other parts of his life have begun to compete with it.
The winter passes, and when school lets out Alex is eager to go to Next Steps. The old, tight core of friends is still there–Josie, Becky and Jake, Kevin, Edward, and Matt. But there are new faces, too–Amanda and Marie, two foster girls who have become part of Matt’ family, Gloria and Kathleen, whose mother is a reporter on our local paper, and Annalee, a deaf, profoundly withdrawn girl who mostly sits on the sofa and looks at her feet.
By this time I know the regulars, and I have learned to say hello to the newcomers. Next Steps, and Matt, in particular, have taught me that I matter. Each time he sees me he comes over, shakes my hand, tilts his head to the side, and asks, “So. How ya doing?” And by now I know he really wants to know. As the years have passed I have come to realize that it is not just Matt who notices my presence, my absence, and how I am doing. And so I have learned not to just drop Alex at the door and drive away, but to stop, turn the car off, come inside, and pass the time of day. I have learned that it’s important to seek each person out with my eyes, smile, ask, “So. How ya doing?” like Matt does, and wait for them to tell me. Because it matters. It matters a lot.
The only person who seems not to notice is Annalee, lost in her silent world. I learn to wait for her to glance up and try a smile. Sometimes she smiles back. Sometimes she doesn’t.
At home my lavender shoots up tall stalks and blooms. I invite Erica to bring Next Steps over and cut lavender. The van pulls up and children tumble out. As Annalee scrambles out she looks at me, grins, and gives me “two thumbs up.” I smile back, make sure she’s facing me, and say, “hello.” She looks a little puzzled and turns away.
“She can’t hear,” says Becky.
“Can she read lips?” I ask.
“I don’t know,” Becky says. “Come on, Beth.” She reaches out a gentle hand to Beth, and leads her up the steps and around the back of the house to the lavender. I watch them go, marveling as I always do at the gentleness Becky shows even as she is working very hard to appear tough and ruthless. I have seen her caring for Olivia, who is three now, with the same matter-of-fact grace that characterizes her dealings with Beth, and now with Annalee, the two girls who need it most. I think back on myself at her age, and recognize something in the toughness she uses to mask inner sweetness.
Around back some children cut lavender. Some help me tie it into bundles. Kathleen and Becky help Annalee cut and then tie some. Gloria offers to come help me cut more of my lavender, and weed the flower beds. I resolve to ask her mother if we can work something out. Annalee looks at me again, grins, and gives me another “thumbs-up.” I grin and give her one back.
A month passes, and it’s time again for Christmas in July. Erica asks the kids what they would like to do this year. They agree on a water fight on the lawn. Alex sets up the tree a week before. Erica gives us a list of names, and suggestions for what each child might like. Alex and I go shopping twice–once for food, once for presents. At home, Alex puts the gifts into bags and hangs them on our tree. We bake cookies and make lemon bars. We find our “Hogfather” DVD, and we’re ready. Christmas in July isn’t about killing yourself in prep time.
The Next Steps van arrives. I go down the steps to say ‘hello.’ When Annalee gets out I wait until I catch her eye, smile, and say, “Hello, Annalee.”
She smiles back. And then she does something amazing. She opens her mouth and burbles out lovely liquid sounds. It reminds me of cool water flowing over rocks.
“That means ‘hello,'” Becky tells me. “She can’t talk. Come on, Annalee. Come on, Beth.” Becky reaches out a hand to each, and the three girls head inside.
“Oh,” I say as they walk away. Because it has just occurred to me that, contrary to what Becky has just said, Annalee has done something I have never heard her do before–she has looked at me, seen my mouth move, moved her own mouth in response, and sounds have come out. Annalee has talked. How does she know that sound comes out? I wonder. And how does she know to make sounds in response?
Erica is busy–she has offered to get lunch, and she has a few other children to pick up for the party. I stay at the house, but my only real function is distributing juice packs. There is a group playing “Star Wars” on the side lawn, a group in the living room watching Phineas and Ferb, a group in the lawn chairs out front, and another group–Matt and Edward–in the kitchen with me. They ask if they can color.
“Sure,” I say, and then I realize that we have no color books. Alex, son of an illustrator, has never cared for them. I do my best. I pull out drawing pads and my 200-color set of artists’ Prismacolor pencils. “You can draw a picture,” I suggest. “Or I’ll draw you one, if you like.”
Edward begins to draw an intricate pattern–squares, triangles, and beautiful sinuous lines, all woven together.
“I think I’d like to write a poem,” says Matt. “I have to think of some rhyming words.”
Since I was an English major, I naturally complicate things. “Don’t you want to think about what you’d like to say first, and then find the rhyming words?”
“I want it to be about Christmas,” he says. “Let’s see…” He taps his chin. “Rhyming words about Christmas…”
I realize I am going to have to rethink the whole “structure follows sense” thing. “How about ‘snow’?” I ask.
“Ooh. Good one,” he says. He writes “snow” carefully on his paper.
“Ah, row,” I say.
“Yeah, like ‘row, row, row your boat’.” He writes “row” on his page. “And flow,” he says, writing.
And we’re off, rhyming words as long as we can. When we’ve run out of “snow” rhymes we rhyme “night.” We try “bell,” but give it up in short order. We try tree, but our rhyming organs have apparently burned out.
“Okay, let’s put some of the words together,” I say. “How about snow…blow?”
Matt thinks. “Yeah, that’s good.” He writes it down, then goes back to his list. “Snow…snow…snow…flow!”
“Good one. Let’s try one of the others now. Maybe ‘night’.”
Matt looks. There aren’t really very many rhymes there, so it doesn’t take him long. “Night…light! Yeah! Like a street light.”
“Okay, one more about the snow.”
The finger taps the chin again. “Snow…glow.” He writes.
And suddenly I see it. “Look, Matt. If we write this in lines rather than like a sentence, look what you have.” And I write on another sheet of paper.
“You’ve got a whole story in eight words. There’s a snowstorm. The snow flows into drifts. Then it stops, and the street lights come on, and the snow glows.” And then I’m on a roll. “And look at this–you’ve got this great rhyming pattern–the first word rhymes with the second word in every line.”
He grins, leans back in his chair, runs his fingers through his hair, and says, “Yeah. This is really good.” He pulls his paper back in front of him and copies his poem onto his own sheet, then hands mine back to me.
We gather by the tree to open our gifts. “Let’s sing a couple Christmas carols,” Erica says. We start out with “Silent Night,” singing about calm, bright nights on a hot July afternoon, a little self-conscious, fumbling for the tune, avoiding each others’ eyes. I try to find the tune, miss it, try again, and miss again. I am about to give up when it happens. Annalee, who has been standing watching our mouths moving, smiles, tilts her face up, opens her mouth, and begins making her liquid burbling sounds, looking from face to face, watching our mouths.
We finish the song and one of the kids says, “Hey, Annalee’s singing with us. Good job, Annalee,” and gives her a thumbs-up. It runs around the circle, “Yeah, good job, Annalee, and thumbs shoot up all around the Christms-in-July tree. We start the next song, and Annalee sings with us, head back, smiling, trying to model her mouth movements on ours, singing of her joy in her own way, in the language we are born knowing. And that changes everything. Instead of mumbling the song, ashamed of my voice, I open my mouth wide, and sing as loudly and clearly as I can, shaping the words carefully. Because Annalee is watching me. I hear our voices, and realize how beautiful they are, and I am humbled by Annalee’s courage in opening her mouth and making sounds in a process she cannot understand. How has she known what we are doing? How does she know that sounds are part of the process? I don’t know.
It doesn’t occur to me until much much later that, surprised as we all were by Annalee’s singing with us, not a single child offered anything but praise and encouragement. It is a powerful testament to the love and support Erica has built among about as diverse a group as I have ever seen–or perhaps it is the magic of Christmas in July.
The song ends. Alex hands out the gifts we bought. Erica has guided us well–I watch the faces brighten as the bags open. Erica brings in the Christmas stocking she has filled and hands them out, one each.
We go outside and have chocolate chip cookies and ice cream on the lawn. A few children half-heartedly renew the water fight. And then it is time to go. The van loads up. The last thing I see is Annalee, waving and giving me a “thumbs up” as they drive away. I go back inside, out of the summer heat, and realize that this is July, that Erica and the remarkable family she has created at Next Steps have become our own, and this has really been Christmas.