Monday, March 4, 2013

The Sacred and the Profane

Being the parent of a special needs kid sometimes - at least for me - means just being a parent. We do a lot of the same, run of the mill, everyday things with Teeny that we do with Bee and that I bet you do with your kids.

We listen to a lot of music. Both Teeny and Bee have their own special songs. Our current Teeny favorite is the old Archies' track Sugar, Sugar. Can you hear it? We sing her name: "Aww Teeny, doo doo doo doo doo doo, aww, Teeny Teeny, you are our Teeny girl!" We sing it so often that Bee wanders around humming it absently. We also turned Mellow Yellow into a Teeny song. "They call her little Teeny... Her name is Teeny-Weeny..." No one in our house is exempt from getting their own song, not even the stuffed animals. Johnny makes up his own lyrics to dance songs he likes and Bee grabs her dolls and dances around clutching them by the neck while she and Johnny sing Mickey Mickey Mouse rocks the house along to some silly 90s dance song by Shannon or Technotronic. Johnny pulls lots of music out of his own childhood, just like I do. I offer Free to Be You and Me, Dr. Teeth and the Electric Mayhem, and I Love You A Bushel and a Peck; he offers Stop That Pigeon and Eep-App-Ork-Ah-Ah Means I Love You. Lucky for us, Teeny and Bee love both. It's adorable.

We make art together. We tape easel paper to the walls and let Teeny draw with big, thick crayons. Bee paints with watercolors and fingerpaints. She draws with markers and pens. Sometimes she does all of this at once, making a huge mess, and Johnny calls it "mixed media." She can write her name and a few other words perfectly, but she prefers to write her letters and numbers on her Brain Quest write-and-erase sets or scribble with a black marker in a notebook and call it her shopping list. On Bee's birthday a few weeks ago, the four of us went to the Children's Museum of the Arts, and while Bee bounced and screamed in the ball pit with Daddy, Teeny and I made collages and watercolors. I painted her hands different colors and she went to town smearing vivid handprints on paper, creating some really beautiful keepsakes for me. I collected them all and couldn't wait to go back to do more. Bee and I went this past weekend with some friends and we made paintings I could see framed in my office or my bedroom, but of course I set them down to dry while we had a snack and put on our coats and I didn't remember them again until we were in the car on our way to New Jersey later that afternoon.

We go shopping. We usually drive to a mall outside the city. The urban pandemonium of two kids in one stroller on a crowded subway going from store to store with diaper bags and bags of groceries and whatever else is more than my tired brain can stand. The suburban friends I have tell me they never go to malls, but malls don't really bother me. One stop shopping, especially when they're near a Trader Joe's or a Whole Foods with a parking lot. Not that we don't enjoy walking and window shopping in the city though. A few weeks ago we went to FAO Schwarz because we had a gift card. We got a Corelle baby for each kid. I never had one as a kid and yet their baby powder smell took me back at least 35 years. I'm not sure who loves those babies more, the girls, or me. For Teeny's baby, we got one of those little bottles that looks like it's full when it's upright and empty when you tip it. Bee picked out a little pink plastic potty for her baby. She had to have it, but unfortunately it gets about as much use as the lonely little potty we have in the bathroom. (We are currently NOT working on potty learning.)

We take baths. Teeny was born in the water and just loves getting wet. Pools, showers, baths. You name it, she loves it. Now that we have a seat for her, she loves bathtime even more. Johnny blows bubbles and if I make it home from work before bath is over, I sing the bubble songs. Bee pours us imaginary cups of coffee and Teeny grabs and shoots water from a dozen squirt toys. They play together beautifully. Bathtime is really fun.

We watch movies. Seriously, I'm not a TV person yet I'll freely admit that the PS3 is our most valuable possession. Where would we be without Ponyo, Kiki, Totoro, Cinderella, the old school series of Sesame Street, The Muppet Movie, Peter Pan, Finding Nemo, Monsters Inc., Alice in Wonderland and our Baby Signing Time video? Early mornings, when the kids are up before dawn, pre-coffee, pre-shower - when Johnny is a total zombie and all I can do is smell his morning breath and panic about how much I have to do and how tired I'm going to be all day - that is when these movies save us.

We buy Disney stuff. Yes, yes. I know. After the first time I went to Disney, a coworker shook his head at me. "How the mighty have fallen," he mourned. (And I can't wait to go back!) We keep it to a minimum. Still, the tamer Disney movies have made it into our lives and Bee loves Mickey and Minnie best of all. At the Disney outlet store this weekend I picked up a cheap pair of Minnie Mouse rain boots and she was so excited about them she wore them in the house with nothing but a pull-up diaper and pajama top. She would have slept in them if I hadn't pulled them off her. And no, of course it wasn't raining.
We apply to preschool. In this way, we aren't any different from most New York parents I know. Sometimes I can't believe this is life; this kind of insanity was reserved for college when I was growing up. Applications, open houses, interviews, financial aid, wait lists, acceptance letters, schedule negotiations, contracts to sign and checks to write. For preschool! And after months of stress, waiting, and wondering, we're done: both girls are in and our spots are secure. Since the research indicates that quality preschool can actually boost IQ points, we feel that in a part-time nursery school setting may be able to stimulate our social little Teeny's mind in new and exciting ways. Of course we are scared to death to leave her with other people for any length of time but we're hoping we'll feel differently about that part by September.

We sleep (or rather, we don't). With our attachment-parent-ish leanings, we just don't get a ton of rest. We nurse, we co-sleep, we play musical beds. My husband ends up on the couch - which does not pull out into a sofa bed -- more than either of us would care to admit. Just as people assure me that Bee will not go to college in diapers, I remind myself that no matter what happens with Teeny, when she is a teenager, she won't be waking up to come into bed with Mama two or three times a night. This too shall pass. And somehow, in the past two weeks, they have both begun to sleep better -- just a touch better -- than they were before. Teeny goes down at 7 and Bee not long after, and about six of the last ten nights they stayed asleep until the sun came up. Of course I take that to mean that with fewer interruptions, I will be better rested, so I've been pushing myself to work until midnight or later. Not a good idea. Even without babies waking to nurse, if I go to bed at 1 and wake up at 5:30 or 6, I am, essentially, the walking dead.

We go on playdates and to birthday parties. Last week Bee's best pal's mom asked if she could pick her up right from school and take her to their apartment for the afternoon. Bee is an early napper, so we expected a call no more than an hour later. Instead we got photos of the girls holding hands, of them hugging. We got a text: "They're napping." Wait, they're what?! At four o'clock Bee came home, all smiles, and the mom was willing to do it again. Two weeks ago we went to Bee's first classmate birthday party and I brought Teeny with us. It was at a kids' gym and I figured she could romp around too. She climbed and crawled and tumbled and had so much fun. Best of all, no one asked me anything about her. For an hour and a half I got to just enjoy the awkwardness of being there with my three year old celebrating the birthday of another three year old, standing around with a bunch of other parents of three year olds, making small talk about preschool. If anyone suspected anything was going on with Teeny, no one knew me well enough to ask. This was the best and most normal awkardness ever and I reveled in it.

And so on and so on. Sometimes we're just like everyone else.

And then of course, there are the rest of the times. We have ten therapy sessions in the apartment per week. We have an average of two to three hospital/doctor visits per week. There is no end to the calls: research, insurance questions, negotiations. Reading articles and books. Asking for help. Just in this past week I asked for (and expect to be denied) SSI and I applied for a handicapped parking permit. With some shame, this week I also completed a request for financial aid for the local YMCA. Membership is $102 a month that we just do not have on top of everything else, and we are asking because they have a pool with family hours. Aquatic therapy, at $180 per half hour session at a pool on the Upper East Side, could work wonders for Teeny, but is well out of our price range even with a prescription and even if I could find a way to get our insurance to reimburse us at the out-of-network rate. But we figure just getting her in the water could be helpful. Still, I don't forget that many of our neighbors are hurting financially more than we are. My hand skated over the list of checkboxes on the financial aid form asking what types of federal assistance the applicants receive, instead writing a few paragraphs about Teeny and her needs. I've gotten the courage to ask for -- and accept -- a lot of help in the past six months, but I don't have the guts to hand this application in myself. I'm making Johnny do it.

That is the tough stuff. It's hard hard hard. Sometimes I don't know how I do it. People say that to me that all the time. I just shrug. You just do what you have to do, I guess. But I can't do it alone. My head spins a thousand miles a minute, hurtling me into the future of What-Ifs and If-Onlys and it makes me feel that there is no such thing as doing enough. And that makes me crazy and sad and helpless. I see why special needs parents become religious. I see why there are support groups. I bought a book called Shut Up About Your Perfect Kid Already and wanted to love it (but it was so poorly written I couldn't make it more than a few pages). Religion never worked for me, the support groups are by and large for parents with kids on the spectrum, and I am too busy to read crappy books by whiny moms. None of these make me feel included. Even the CH support group, wonderful as it is, isn't always helpful. I got a private message from one of the moms recently asking me why Teeny doesn't "look as bad" as the other kids there. Of course I hope she's right and that she isn't, but even then I couldn't help feeling a tiny sting that even here, me and my kid don't fit in.

My nature is to act. I am busy busy busy, and I want to fix everything, clean everything, organize everything, feed everyone, and order everyone around. It's as if I believe that the more I do the less I have to feel. In college I was attracted to men and women with big problems that of course I felt I had all the answers to; a classmate of mine and I used to joke that we were saving the world and starting with our boyfriends. At work I have to bite my tongue and sit on my hands to let my staff members come up with solutions themselves; it would be so much easier for me to just tell everyone what to do. But the biggest lesson I've gotten from being Teeny's mom is that I am not in control. There is absolutely nothing I can say or do that will change who she is and how she is. Sure, I can push her to do more therapy and more art and more music and more school and I can nag more doctors and beg for more discounts and negotiate with more insurance companies, and I accomplish a lot doing all of those things, but I'm not going to win a contest for Most Calls Made or Most Co-Pays Paid in which first prize is a brand new cerebellum for Teeny. It's not up to me. No matter how much I do and how badly I want things not to be this way, there will never come a morning in which I open my eyes and find that I have worked myself into having two daughters, each with a normal brain. It's just never going to happen. This is a kind of special I never wanted to be or to have, and you know what? It's lonely here sometimes.

Recently someone I've grown to love and respect told me to meditate. In my head, I laughed at her. Do you know how many times in my life I have tried to meditate? A lot. Every time I do, I fall asleep. I'm like the quintessential physics lesson: an object in motion stays in motion; an object at rest stays at rest. If I am not bustling around with some huge and terribly urgent project like reorganizing all the tupperwares or refolding all the towels in the linen closet, I am unconscious, asleep, K-Oed. Johnny hates watching movies with me because often before the credits have even finished, I'm snoring. I used to take a lot of yoga classes just for the last ten minutes. Shavasana literally means corpse pose, and that was me, dead asleep on the floor every single time. Last year I spent a fortune to go on a yoga retreat. In it, I went to every meditation class I could. I took it very seriously, hoping I would turn over a new leaf once out of my regular element. In the first class, I started to snore. I was so loud in the silent room that I woke myself up. The people around me tittered, clearly losing their concentration too.
So when this woman suggested I meditate - even for one minute a day - I scoffed. But then she told me two things. One, she said I might try to meditate using a mantra. Keep it simple, she said. Say over and over, slow down. Slow down. Slow.  Down.  And, she said, put your hand over your heart or a finger on your pulse. You feel that? she asked. Yes, I feel it. Are you controlling that? No, I answered. See? she said. You're not in charge. You can let go. You get to let go. This isn't about you and how hard you're working. You don't get graded on this. It's not your doing and you can't fix it. Just let go and slow down. And feel. 

This was truly the most profound thing I'd heard in years, and I do this now. I have an app that looks like a lit and flickering candle, and it has a timer. I put my hand on my heart and I feel it beating. I put a finger to my wrist or to my neck, and there it is, my pulse. I'm alive; just one of seven billion human beings, just one of seven billion miracles of evolution that I sure as hell can't explain. In high school, searching for relevance, there was nothing worse to me than feeling like just another brick in the wall, a tiny speck of nothing relative to the rest of the universe. But now, for one minute or five minutes or however long I can stand to sit there with my iCandle and my timer and not fall asleep, it brings me comfort. Slow down. Sometimes tears come. Slow down. Sometimes I feel pure joy, bceause Teeny is a beautiful child in spite of and perhaps because of her needs. Slow down. Some days I'm just not feeling it and I don't push myself. Slow down. It's not about me, I'm not doing it, I can't fix it. I'm not the only one who's hurting and I'm not the only mom who worries about her kids. I might be the only mom going through this particular thing that I know of right now, but when other people share their struggles with me, when readers reach out to tell me about their sister's or cousin's medical issues growing up, when I hear that completely different problems about work or family or money elicit that same insane fix-it response in some of my closest friends and colleagues, I know I'm not alone. While being a mama can really push these buttons for me, on my best days parenthood is the closest thing I've found to the sacred. I want to cultivate that feeling and be here for this crazy bumpy unknowable ride. Slow down, Mama. Just slow down.

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