31 for 21, Day 24: The News is Good

Welp. Clearly I've failed at ye olde "31 for 21" this year. It was a nice thought, but it was not to be. There was a time when I could blog every day and this is just NOT that time.

But I've enjoyed the abundance of Down syndrome articles friends have shared in the last few weeks (courtesy of Down syndrome Awareness Month). There's so much good information now. So much positivity and hope. So much that wasn't there on that insufferably hot, humid day more than eleven years ago in the delivery room, when a doctor I'd never met gruffly muttered, "Well, we think he has Down syndrome."

This week, some of that good information came in the form of a podcast. I've started listening to them again, after an unintentional hiatus. I used to enjoy them when I was commuting (a hot coffee, a seat by a steamy window, a voice whispering eloquent writing or dialogue into your ear? THE BEST). Now my commute is two minutes long, the time it takes for me to drive home from dropping Ellie at school, walk to the kitchen table and pull out my laptop. So I've had to get a little more creative about finding the time to listen.

But check this one out. Writer and comedian Bethany Van Delft says, of her realization about her early days of having a baby with Down syndrome:

"Once I stopped fearing...I realized all moms cry a lot. All moms doubt their ability to raise this child. All moms worry about the future. I used to wish I could go back in time and get that test after all, but now I wish I could could go back in time to allow myself to feel the joy that a new mother feels, because that's what I was."


I've started listening to podcasts while running (the only time in my life when things are "quiet"). I turn the volume WAY up so I can't hear my pathetic gasps for air. Recommend!

Then came this story, about a new program in which young people with Down syndrome write "Congratulation" letters to new parents of babies with Down syndrome. Now, "Congratulations!" is not a word I remember hearing much (ever?) at the hospital when Leo was born. Luckily, I think the world has changed a bit since then, but this campaign is still amazing and much-needed. An excerpt from my favorite letter:

"PS. This baby is going to be the best thing that ever happens to you."


Leo, 18 months. 

Yes.

Worth a Read (Or a Re-Read)

Have you read this?

"I'm Not a Saint, Just a Parent."

Cate reminded me about it and I just reread it and yes, I'm a big ball of hormones right now but wow. It's beautiful. There are so many passages worth repeating. This might be my favorite:

On being a parent:

"Some bits are hard, some bits are easy, some bits are fun, some bits are a frightful bore. That’s true of life with Eddie [writer's son with DS], it’s also true of life with Joe ["typical" child]. But you don’t even begin to break it up into categories: it is the one endless, complex business of being a parent. You don’t gointo parenthood to make sure that the benefits outweigh the deficits: you go into it out of — brace yourself but no other word will do — love."

Check it out.

The Most Wonderful Time of the Year

Oh I want to stop time right now. I love love love the stretch of days between Thanksgiving all the way through New Year’s. It means warm houses and cooking and baking and choral music and decorations and time off work and time home with the kids and visiting family. I’m in a bit of denial about all the gifts that need purchasing and goodies that need to made, wrapped and distributed to various teachers, therapists and caregivers. It's making me feel a little itchy, to be honest. Oh heck, it will be fun, right? And it will all get done because it always does.

Here are a few other tidbits, since I seem incapable of a coherent post.

-All this “home time” the last four days reminded me how the kids have been playing soooo well together lately, I’m almost afraid to talk about it. They come up with elaborate schemes, such as outdoor tea parties which translate to: put all the outdoor chairs around the mini trampoline, sit in the chairs, and pretend to eat and drink. There is also train assembling (lining up various furniture to make “trains”) and of course, good old stand-bys, like “making a bed” (see above). To say nothing of “doctor,” and “school.”

-Most of these ideas are orchestrated by Ellie (who is quite the boss) but Leo is an eager participant. There is less bickering now that Ellie can call Leo on his antics (I don’t love the tattle tale trait but it’s mighty convenient when I’m upstairs and they are in the basement playroom and Leo is doing something like, oh I don’t know, stacking a stool on top of a table so that he can reach a shelf). NOT COOL and he knows it but this doesn’t stop him from trying to get away with it.

-Leo is talking a lot. While he continues to be difficult to understand at times, he has a couple of new phrases that come out clear as a bell:
“I got it.”
“No thank you.”
“Here you go.”
"I don't know."

-Ellie no longer seems to enjoy being my translator. If I ask her what Leo is saying she almost always responds “I dunno” whereas two months ago she always knew just what he was saying. However when they are playing and I hear them talking to each other and I have no earthly idea what Leo is saying, Ellie always does. So I think she’s just holding out on me. Oh well. As long as they understand each other.

-We got our Christmas tree on Saturday. I told you we like to drink up this season for all it's worth. I almost think we don't need to bother with presents for Leo this year because he was positively enthralled with all the decorations. I'm kidding of course about the presents but he had a blast with it all. The little figurines and miniature Christmas themed stuffed animals and music boxes collected over the years and dreidels make for some good, good times. Who knew? He assembled all the "guys" so that it looked like there was this giant holiday caucus between a porcelain Santa and about twenty various Rudolphs, snowmen, ceramic houses and trains. Then, as we were decorating the tree Ellie announced: "This is going to be the best Christmas ever!" Minutes later came the melodramatic proclamation that "Christmas was ruined!" I have no idea where she gets this kind of talk.

-You can call me cheesy (it wouldn't be the first time) but I cannot stop listening to “Just the Way You Are” from last week’s “Glee.” I would watch that wedding reception scene too, non-stop too if anyone in the house let me view anything but Nick Jr., but that’s another story. (Scroll down to the second video clip on this page to see it).

That song. That scene. It was just…life affirming. And inspiring and could apply to so many realms of life: Down syndrome, being a gay teenager, being gay period, not feeling like you fit in or belong or matter, no matter what it is that makes you "different." Well you do. You’re amazing. Just the way you are.

Mistakes and Miracles

Every night after bath and books, either Erin or I lie down next to Leo in his bed and stay with him until he falls asleep (and no, I didn't think I'd ever be that parent). Leo gets his covers just so, lines his pillow up perfectly straight with the fabric smoothed down, and rests his water bottle on it.

Most nights, it takes about 3.2 seconds for Leo’s breathing to become deep and slow and tinged with a slight snore—the instant indication that he is fast asleep. I’m not sure what they do with him at that school of his but the boy is wiped out. Many a night dinner is eaten with his head almost horizontal on the table, poor guy.

I don’t get up from Leo’s bed right away. First of all, Leo’s bed creaks. As do the wood floors. And the old door. So I wait a few extra minutes, until I’m absolutely certain he is down for the count. And in this time, I often gaze at my boy, the little six year old who, when he sleeps? Looks just like the newborn I held and nursed and rocked. Full little pink lips, slight open mouth posture with the little tongue that, when resting, curls inward like a spoon. I could watch him sleep for hours, there is just something about it that fills me with both peace and pride.



Maybe it’s because when Leo is awake he’s in constant motion. He’ll still allow a cuddle or a snuggle here and there (and he’s actually far cuddlier now than he used to be) but not much slows Leo down. When he’s awake, I can’t drink him in the way I can when he’s sleeping. Those little, slightly curled ears, the crease in his palms, the significant space between his big and second toe on his decidedly flat and wide feet. All of these traits are characteristics of Down syndrome. Those traits, and hypotonia (pronounced floppiness) are probably what tipped off Dr. No Tact to the extra chromosome on that insufferably humid July day six years ago. Not all people with Down syndrome share these features, mind you, but many do.

I find it fascinating, really, how people with Down syndrome can both look like each other (it’s as if they’re all distant relatives, I heard someone say once, and that’s stuck in my mind ever since) but also resemble their families. If you’ve ever been to Buddy Walk or, a child’s birthday party for instance, brimming with children with Down syndrome, you see that it’s true. They all look a little bit like their moms and dads and brothers and sisters and grandmas and grandpas, and a little bit like each other. I remember being so worried that Leo wouldn’t look like me (I know, this sounds pretty narcissistic but you can’t tell me I’m the only mom with a baby with Down syndrome who hasn’t thought this). It was one of my first fears (along with whether Leo's liver and kidneys were functioning properly and whether he was going to die) in those early dark days and it came to me when we were driving home one night from a long, somber day in the NICU.

When I was pregnant with Ellie, I wondered if she would look like her brother. For some reason I was worried they wouldn’t look like siblings.

I think it’s safe to say my fears have been put to rest. That's Leo at about a year old and that's Ellie at about age two.

Did you know that Down syndrome is the only trisomy (each cell in the body has three copies of the twenty-first chromosome) deemed “compatible with life?” That in itself is sobering. Every little bit of Leo is affected, and yet, he’s here. I look at all of Leo’s features-- funny little ears and feet, his eyes, his chubby hands, and do you know what I think? I think that it’s kind of a miracle. Twenty-five percent of fetuses with Down syndrome will either miscarry or be stillborn. Doesn’t that sort of make you stop and think?

I struggle with faith. I do. Sometimes I don’t know who to believe or what I believe in. But this much, I know. I believe in love. I believe in the religion of love and gratefulness and kindness and forgiveness. And I would like to believe in miracles, I would. I try every day to believe that everything happens for a reason, both the terrible and the wonderful. And to trust. Like Cate says (she gave me the fridge magnet too): “Everything will be OK in the end and if it’s not OK, it’s not the end.”

This week, on “Glee,” (ha! Bet you didn’t see that one coming!) one of my favorite shows and if you aren’t watching it start right now, there was a scene that I have not been able to stop thinking about. Sue Sylvester, the often cruel, hard-nosed cheer leading coach shows a softer side whenever she has a scene with her older sister Jeanie, who has Down Syndrome.

In this particular scene, Sue talks about how as a child, she would pray to god to make her sister "better" and it (obviously) didn't work. And so, she couldn’t believe in a god that wouldn’t heal her sister, the sister she admired and looked up and who was tormented by her peers for being different, for having Down syndrome.

Sue asks her sister if she believes in god and her sister responds: “God doesn’t make mistakes.”

Maybe that's too simplistic. Too easy. But the more I live this life, the more I get to know Leo and all the other children that have come into my life because of that extra little chromosome, I believe this. Life usually doesn’t work out how we plan or expect it to. The things you thought you always wanted and needed can leave you feeling empty. The things you thought you never wanted can end up being gifts.

When you think about it, we are all just one chromosome away from being “incompatible with life.” We’re all just one car accident or wonky blood cell away from disaster. Having said all this, I still think Sue's sister is right. There are no mistakes. There are certainly great challenges and disappointments and hard lessons to be learned. But there are no mistakes.

Acceptance

The other night Leo was getting undressed and ready for bed. He sat down on the edge of the bathtub and methodically placed one foot into each flannel pajama pant leg. I was sitting on the toilet (lid closed, ahem), sporting one of my favorite “night gowns,” a super soft and well-worn Buddy Walk t-shirt from back in the day—2004—the year Leo was born.

Leo looked at me and then at my shirt and said, clear as a bell:

“Buddy Walk.”

We didn’t go to the Buddy Walk this year. For whatever reason, it just didn’t happen. I did not teach him that word. Leo can read. I guess I need to accept this already but I still find it shocking.

Oh how I wish someone had told me that little moment in the bathroom would happen, back in 2004 when I held a little two month old Leo and cried through most of my first Buddy Walk, held in New York’s Central Park. I never thought I would see the day that my boy would read (or walk or talk or build hayrides or torment his future baby sister). I never thought I would see the day that I didn’t believe with all my heart, that life was over.

Sometimes (well, all of the time, really), you just have to live through the struggles to find out that it’s possible to come out the other side.

Leo's first birthday, Portland, Oregon, 2005

Now We Are Six

But now I am Six,
I'm as clever as clever,
So I think I'll be six now for ever and ever.
--From "Now We Are Six," by A.A. Milne

Six years ago this morning, on a day that was very much like today (insufferably humid, cloudy and overcast) a doctor leaned over my shoulder in the delivery room and told me he thought our baby had Down syndrome. What should have been one of the happiest days of my life had been transformed forever.

In case you hadn’t noticed, I’m a sentimental person. Even though Leo is six today, that fateful moment when Dr. No Tact made his announcement before I even got to hold my baby could have been yesterday. Leo’s birthday still chokes me up a little. OK, a lot. It’s not because I’m sad though. It’s because we’ve come so far in six years. I’ve come so far. I look at pictures of newborn Leo and want a "do-over." I want to hold him again when he is just minutes old and know what I know now. That sure, things might be hard sometimes, or different than I expected, but everything is going to be just fine.

Today I took Leo to school as I do every day. He helped me carry the casserole dish full of cupcakes he’ll eat later this afternoon with his classmates. They are pink and yellow (per his request) and I stayed up until 11 p.m. last night frosting each one. I had to work late and I was tired by the time I got to the little frosting project (thank goodness I had the foresight to make them the night before). The cake that I made along with the cupcakes (for tonight’s family celebration) is a bit of a disaster. I’m fairly confident that it tastes better than it looks though and luckily Leo is not a pastry critic. Yet.

The crooked cake? It really doesn’t matter. Because all I could think about last night, as I wiped the powdered sugar off the counters and soaked the frosting coated beaters was how happy I was. How normal everything seemed. And I thought about how six years ago last night I was oblivious to the roller coaster ride of emotions I was about to take. In the morning, life as I knew it would be over (as it is for any new parent, Down syndrome or not). Now, it's difficult to believe there was a time I doubted I would ever feel "happy" or "normal" again. ("Normal" being a relative term of course.)

Leaving Leo at school this morning, the tears came for me. It was six years ago I cried because my new baby, the baby I was terrified of and grief stricken over was downstairs in the neonatal intensive care unit. In a little more than a month my “baby” will enter first grade. Did I mention that sometimes I really want to stop time?

This has been a huge year for you Leo. You went from a small private school of less than forty children to a huge public school of over 500. You graduated kindergarten. You learned to read and speak in sentences without prompting. You can write, you’re beginning to learn to tell time, count money and you are an expert at coloring. You also really love to draw.

You have a lot of loves in your life and you continue to be a person of extremes. When you enjoy something (scrambled eggs, cake, grapes, watermelon) you enjoy it. But when you don’t want it (pretty much anything green), look out.

You adore your sister Ellie, who you have started calling (along with the rest of the family) "Ellie-Belle." Unlike many words you can say this one clear as, well, a bell. You are a fiercely protective older brother, already. The other day when you two were eating lunch outside and Ellie wandered off to play mid-meal (as she is prone to do), a fly landed on her pizza. You were incredulous. You yelled “My Ellie-Belle pizza, my sister!” Yes, you yelled at a fly.

You value family above everything and get giddy at the mention of “Grandma” (both of them) or Grandpa. You love your home. In fact, most days I think you’d be happy to just stay there, play with your trains and cars and Little People and put blankets on your dog Ruby while she “sleeps.” Sure the zoo and the park and taking Ruby for walks are all great fun but you’re also perfectly content to build hayrides and draw and do puzzles and read books. Lots and lots of books.

You could also play ball for an entire day, I’m pretty certain, and did I mention you have a fabulous arm? Really, people comment on it all the time.

Your stubbornness (when you don’t want to do something you don’t want to do it) is matched only by your incredible sweetness and sensitivity. I’m pretty sure that if your Grandma Eleanor was here she would say that when you are good you are very, very good and when you are bad you are horrid (see above regarding extremes). But don’t worry, she said this about me too sometimes.

You have a sharp little sense of humor and you love to make people laugh.

You continue to teach me to see the world in a way I never thought I could or would. You have introduced me to patience I didn’t know I had and have brought grace and compassion to my life. I did not know what these words really meant until you.

You surprise me and make me laugh every single day. I am so very proud of you and you are only six. I can’t wait to see what else you do! And even when you throw dish towels at me and cross your arms and scowl when you don’t want to do something, I love you.

Love,
Mommy

All I Have

Oh, hello!

It feels like it’s been forever, even though it hasn't. I think it's because I’ve been cheating on this little project with another decidedly not so little project. So yes, distracted is the word du jour. My mind has been charging through in overdrive. There have been loads of delicious little anxious moments and middle of the night wake-ups that involve a bounty of tossing and turning and ceiling staring. Questions range from Can I Do This? to Who the Hell Do I Think I Am? (perhaps my personal fave) to I Have No Choice. OK so the last one is not a question, that much I do know.

So. Not to be vague, but I kind of have to be for now. I am that superstitious.

In other news, Bullets. What can I say? It’s all I have. Right now.

-Summer seems to be in full swing. Oh well. Spring, it was nice knowing you for all of, what, 4.2 days? Here in New York City we’re in full-on jungle fever. It could seriously be Vietnam out there (although admittedly I’ve never actually been to Vietnam but hey, I have the ability to imagine torturous humidity when I am indeed experiencing it). Thank goodness my hair seems to have recovered from the big Haircut Mistake of March 2010. I can finally put it back into a pony tail or (yippee!) pigtails! And I know what you’re thinking and no, I am NOT too old for pigtails.

-Last weekend I took Ellie to her first official birthday party where only she was invited—it was for a little classmate of hers at school. Held at a nearby park, there was pin the tail on the blow up donkey (which Ellie insisted was a unicorn because of the pointy hat), and a giant kind of scary inflatable ball that the little kids could climb into (I know) and I was positive someone was going to be suffocated at some point during the party. I jumped at my chance to get my hot dog on (yes I’m one of those vegetarians who deigns to eat hot dogs—real hot dogs made from turkey lips and cow nose and all that).

-In short, the party was general, fun preschool mayhem (as they should be at this age). And it was also at this party that I discovered Ellie is afraid of clowns. Like, really, really terrified, run-screaming-from-said-clown-with-tears-and-a-bright-red pink-face, afraid. This clown was painting faces which I thought Ellie would adore but alas, the clown was too much to get past. Ellie did warm to him later in the party when he made balloon animals and um, other things (Ellie took home a pink balloon “flower.”)

-I also had a pretty big realization at the party: little boys can be really annoying, even when they have 46 chromosomes. I know, newsflash, right? Those balloon animals I just mentioned? The little boys at the party (ranging from nearly three to five or six) took great delight in popping those balloons, literally right after that poor clown made them. And I even thought to myself when I heard that balloon animals were on the agenda, Well it’s a good thing Leo isn’t here because he wouldn’t be able to handle those.

-Oh that clown. He was either heavily medicated or had the patience of a saint or had plans to go home after the party and drink and entire bottle of wine. I'm betting on option #3.

-Party realization, continued: You know those annoying little 46ers I just mentioned? The balloon poppers? They reminded me of how I can be really hard on Leo. I try not to let it show, but I know it does sometimes and I need to really watch it. He might not notice it now, but there will come a day when he will.

-And I tend to jump to the conclusion (as I’ve written here before) that all of Leo’s infuriating, exasperating behavior is because of the Old Faithful Down syndrome, you know, Down syndrome, the reason for all that sucketh.

-Because you know, if Leo didn’t have Down syndrome, he wouldn’t feel the need to stomp in the ginormous mud puddle that he created in what used to be my beloved flower bed (it was nice knowing you, butterfly bush). If he didn’t have Down syndrome he wouldn’t refuse to get into his car seat at the end of the day and instead climb into the passenger seat or scurry to the back of the minivan and dance around and shake his behind (true story—I’m still trying to figure out who taught him/showed him how to shake his booty).

-Right. It’s all Down syndrome’s fault. Because little boys (or little girls for that matter, I need to do a whole other post on the Bargaining and Deal Making and Discussion that exists when you live with an almost three year old girl) couldn’t just be maddening and annoying Why-is-Mommy-banging-her-head-against-the-wall? inducing little creatures, all on their own, without the help of some silly little syndrome.

The Big Sap at the IEP Meeting

This morning was Leo’s IEP meeting. He’s going into the first grade in the fall. First grade! My baby!

I always get choked up at these meetings. Not because I’m sad about all the things Leo isn’t doing or can’t do (frankly, there isn’t much he can’t do). No, if you’ll indulge me for a moment, I get teary because it’s pretty emotional to sit at a table with a bunch of women who are telling you how great your kid is. And these aren’t people who have to say any of this.

Here were a few of the main points:

-Leo loves to learn. (This has always been one of his greatest strengths, I will agree and really, I think we just lucked out with this one. It’s just his personality. He loves to learn and he loves to please and he loves to be praised). I wish I could take some kind of credit for this but I truly believe kids come with this or they don't.

-According to Ms. L, Leo is a “truly special child and one of the most grateful children” she’s ever met. She told a story of how he’d misplaced his hat. The teacher and the aides looked all over for it. Leo was troubled but not hysterical and was able to move on when he was told they would “find it tomorrow.” Then Mrs. L. tried one more place and lo and behold, the hat was found. Mrs. L. said Leo hugged her and said “thank you, thank you” as though he’d just been given an all day pass to Disney World.

-Handwriting is making progress though still needs work. No surprise there.

-Leo’s sight reading is coming along. He knows 40 sight words in the Edmark Reading Program. Sidenote: This weekend at Costco Leo asked to hold my shopping list. He took one look at the scrawled “dog food” on the little piece of note paper and the massive 35-pound bag on the bottom of cart and declared “dog food!” No doubt about it. That boy can read.

-It’s not just that he can sight read. He loves books and loves reading. This means so much to me, as a lifelong reader and devourer of books, an English major, a journalist, a writer—books have been important to me ever since I fell in love the Bob Books and Bread and Jam for Frances. It’s so important for me to encourage this affection for books in my children. Obviously I can’t make them love books. But I guess all those trips to the library and Barnes & Noble and reading Boynton board books to five day old Leo might be paying off?

-Leo loves his family. We reportedly figure big in his little world. When asked to draw anything, a circus, a beach, the cast of characters in any setting will always include “Mama, Mommy, Ellie and Ruby.” Awwwwwww.

-Leo’s speech therapist reiterated something she had mentioned to me earlier in the year, which is that she’s always judged intelligence by a sense of humor and Leo has a great one, a "sophisticated" (her word, honest) sense of humor, even. And yes, this is when I really choked up. My little boy is funny and not by accident. People aren’t laughing at him, they’re laughing because he’s darn hilarious and he means to be (and best of all he knows it). She also pronounced his receptive language "remarkable." He understands everything. (Whether or not he will actually do what you ask him to do is a whole other conversation.)

-Leo has a girlfriend. She’s in the “typical” kindergarten and her name is Bella. I don’t think it’s a coincidence that her name just happens to be very close to his adored sister Ellie’s nickname (Ellie Belle or just, Belle). That boy loves his sister (loves to push her buttons and drive her crazy and make her cry too).

-Of course not everything is kittens and puppies and rainbows. Leo continues to be a bit overly friendly, doling out hugs to pretty much anyone who will take one. This is no surprise and we struggle with that out in the world too (the waitress who brings the ketchup probably doesn’t really want that cuddle).

-We are having a major and I mean major transportation issue (transportation is part of the IEP). It's really boring to explain here but it has to do with the district not wanting to take Leo the two miles outside of town limits to where his after care program is located (they recently moved). I understand the district's reasoning and we're trying to come up with a solution but it's the kind of thing that wakes me up in a cold sweat in the middle of the night. Not good.

-Leo is easily distracted, particularly by the computer (which he adores). When another child is using the computer and Leo is expected to do another activity they pretty much have to build a barricade around the computer area so that Leo can’t see what’s going on. I suggested maybe horse blinders? KIDDING.

-He is stubborn. Sometimes to a fault and to a maddening degree (OK I added that last part). Huh. Really? (Insert sarcasm.)

-Lastly, Leo was administered the standardized test all the “typical” kindergartners took and no surprise he scored low overall, with some notable higher areas (reading and portions of the handwriting and math were stronger, reading comprehension was without a surprise, a bit of a disaster, since his expressive language is still so far behind a typical kindergartners). Mrs. L. included this score in the packet of material that will come home with the IEP tonight, just for our information. “It is what it is, said Mrs.. L. “Leo’s doing just great.”

There was a time I would have focused on this point, above all others, on the fact that Leo is not “normal” and not like all the other kids. But it’s different now. He’s such his own little person and it’s so clear at the end of every school day from his weary little face and sleepy eyes at the dinner table (he’s mastered the art of chewing with his eyes closed and has been known to nearly nod off while eating) how hard he tries every damn day.

There's no reason to be sad. I can’t not be so incredibly proud of him and yes, teary.

An Irony Not Lost, With a Void

Many years ago, my mother was a special education teacher. And some of her “favorite” students? They had Down syndrome.

Over twenty years later, I still remember little David. He was tiny (well he was only four), with straight, warm chocolate colored brown hair, cut in a bowl shape (give him a break, it was the mid-eighties). You walked into the classroom and David threw his miniature arms around you. Inappropriate? Of course. Sweet and irresistible? That too.

A few times a year my mom would let me skip class and come to her school. I adored these sweet, affectionate little children (it was a “multiply disabled” preschool class, some had Down syndrome, some had other general developmental delays). They could also be scary. They had tantrums and outbursts. Sometimes it was hard to understand what they were saying, and that was the kids who talked at all.

But I knew the day I met him why David was my mom’s favorite. He was a charmer. He took you by the hand and led you to what he wanted to do, whether it was books or dress-up or wooden blocks. He was also sneaky. Sure David, you can have another cookie! Oh, whoops, they aren't supposed to have anymore cookies? David didn't speak much, but he never failed to get his point across. And that smile? Killer. Hmm...remind you of anyone?

Of course, the irony is not lost on me, how much my mother could have helped me with Leo, if she was still here, as a special education teacher, and of course as a mother and grandmother (my mother actually went on to teach "regular" elementary ed, but I'm sure she would have had plenty to add when Leo showed up).

Also, I can’t help thinking about my fourteen year old self, sitting in that huddle of preschoolers during story time. I had no idea what my future held, that my fortune held a child not so unlike one of them. Life is funny, isn’t it?

In those dark, early days after Leo’s birth, when I stared for hours at this little unexpected stranger with the extra chromosome, sleeping sweetly in the infant swing, I had countless one-sided conversations with my mother. Why did this happen? What do I do? What will he be like? What is he capable of? What should I expect?

And also? There was shame. Shame that I had not given her the “perfect” grandson.

Obviously I can only speculate as to what her reaction would have been. I think she would have grieved with me, but that wouldn't have lasted. In many ways, my mother was a very no-nonsense person. Not one to linger in tragedy (as I melodramatically viewed Down syndrome back then), her style was more to get up, brush yourself off and figure out What To Do Next. It’s no accident that one of the adages of hers that I repeat in times of trouble is “Every problem has a solution.” (Which is not to say that Leo is a problem, but when he was first born? Down syndrome was a big problem for me.)

Of course I know now that my apologies to her would have been more than unnecessary. There were so many years that she never thought she’d even have a grandchild, Leo was a gift, with or without Down syndrome.

At the worst, I think she would have worried. She would have worried for Leo’s health and worried about the added challenges that we would have with Leo (and that Leo would have). But if anyone were capable of loving a grandchild too much, it would have been my mother, who was unequivocally born to be a generous, doting grandmother.

I look at Leo today and I see the little David that Leo’s grandmother adored. And I also see glimmers of Leo’s grandmother, dancing around in his round little face, on his light brown hair, (grandma’s exact shade) and in his steely blue eyes and his cleft chin, the chin that is just like grandma’s.

She is never far from us, even though I know of course, that she is.

Wisdom in the Snow

It was the day after our most recent snow storm. Ellie was inside with Erin where it was “nice and warm” (Ellie's words, honest) and I was on the back deck with Leo, attempting to build a snow man.

We rolled the appropriate balls together for the body. We found acorns for eyes and buttons and dried sticks for a mouth and arms and a nose. Leo’s hat was lent to our little snow man and he borrowed my gloves.

And, as I often do at moments I want to document (either here or for a photo album or whatever), I whisked the camera out of my pocket and attempted to take a picture.

Leo is often camera shy. He shakes his little fist at me and stomps his feet and yells “NO!” adamantly. I usually respect his wishes (and go ahead and sneak pictures in when I can), but this snow man was so precious and the activity had been such a delight. I wanted to have proof of it.

That’s when Leo pushed the snow man down. Destroyed it. Down went the head. The hat was thrown across the yard. The stick arms were tossed away with total disregard.

I stood, frozen. Not sure what to say or do. It all happened so fast.

To be honest, I wasn’t even angry. Just sad. Why would he do that?

And my next thought was what I often think when Leo does something "bad" and I'm a little ashamed to admit it. It’s because he has Down syndrome. He wouldn’t have done that if he didn’t have Down syndrome.

This is, of course ridiculous. Because who knows? Who knows which of Leo’s behaviors are related to Down syndrome? I mean, I have my suspicions, but again, why does it matter? It’s just an excuse to be mad. Or disappointed. Or depressed. Or to play that giant, stupid, loomy, “What If” card.

And what of all the so called "good" Down syndrome qualities? I won't even go into that list as I don't want to perpetuate stereotypes. I know, I know.

When Ellie won't stop chattering and go to sleep at 10:30 pm, or when she refuses to close the refrigerator door and sit in her chair to eat the string cheese, do I sigh and say, Oh, it's because she has 46 chromosomes? Right.

Back to the snow man.

After what seemed like forever (mere minutes), after the Appetite for Destruction of the snowman incident was over, I just quietly and calmly said to Leo, Why did you do that? Mommy helped you build a snow man and he was beautiful. And I wanted a picture of you two together.

And do you know what Leo did?

He rebuilt his snowman. Every last little body part and limb. Quietly and quickly and wordlessly, he put him back together.

And he crouched down and posed for a picture, without even being asked.

He said "Chee." (His version of "Cheese.")

Oh sure, Leo can be a little hurricane sometimes. And oh does he have a temper. But ultimately, he loves to please. And he knows how to do it. And oh does he know when he’s disappointed you.

This scares me a little, because I know how critical I can be. I’m working on trying to be more patient. Less reactive.


I should take a lesson from Leo.

I think he would have sat for photos for as long as I wanted to take them. He only stopped posing because I put the camera away, finally (and I didn't even get the Geez Mom! expression once!).

When it doesn’t involve food, Leo is one of the most patient people I know.

Taking a Breath

And then, the clouds parted.

What a week.

I’ve had a few decent nights of sleep, several cups of coffee and a good amount of wine (not all of those beverages were consumed this morning, don’t worry).

I made scrambled eggs for Leo yesterday morning, even though there really wasn’t time. That night I let Ellie have the stray Valentine’s Day sucker I found in Leo’s backpack even though bedtime was in twenty minutes (is it true about sugar amping them up? I really haven’t decided. The girl sings and dances in her crib most nights until 10:30 p.m. anyway…)

Last night Leo and Ellie built hayrides way beyond bath time. Erin took them upstairs and the living room had that slightly tornado struck look. I quietly loaded all the Little People back to their appropriate places and went upstairs to join the splashing and the bubbles.

This morning (and every morning this week) Ellie and I drove to school with “Baby Beluga” on repeat. “Mommy it’s my favorite!” she says. Really? I hadn’t noticed. She commands me to “Sing Mommy! I will sing with you.” And of course, I do it. Not a bad way to start the day, is it?

I’m trying to relax a little. The heavy thoughts are still there. I’m acknowledging them but not letting them torture me.

Amidst all of this, I stumbled upon a wonderful quote that I have not been able to get out of my mind since I read it (and in this case, that’s a good thing). Can a quote be that powerful? It can be for me. I'm a professed quote junkie. It just fits everything I’ve been feeling lately (with credit to Cate who first introduced me to it). I’m headed to the library this weekend to check out both books by the author, Kate Braestrup. The passage below is from Marriage and Other Acts of Charity.

One hundred percent of marriages end. As long as we're being brutally realistic, however, why not admit the whole truth? One hundred percent of all relationships end: paternal, maternal, spousal, avuncular, friendly, or filial; one way or another, you will lose everyone you love, everyone you cannot bear to lose.

One response to this appalling reality is to posit the existence of heaven, a place where everyone gets to be together again, just like the old days (though, as my friend Moira declares, in heaven her husband is going to fold laundry).

In the meantime, however, what are those of us still here on earth to do in the face of loss? Jesus has some advice: When he is no longer physically present, he tells his disciples, then those who really loved him should go on to love others -- lots of others -- just as they had loved him. "Inasmuch as ye have done it unto one of the least of these, my brethren, ye have done it to me." If you can't, in fact, go on to love others, you never truly loved him to begin with.

But you don't need to take it from Christ. Maude in the movie Harold and Maude says the same thing: Love more. Start with your siblings, or your spouse, or your parents, but don't stop there. Love whoever needs what you have; love the ones who have been placed in your path.

It seems so obvious, doesn't it? It is the kind of knowledge we all should know, and instead even the wisest need reminders. Fortunately, the reminders do come, from sages and prophets and out of the mouths of babes: If your heart breaks, let it break open. Love more.

I'm trying. I'm really trying.

Acceptance

"Understanding that we couldn’t change him had changed us."
-Annie Lubliner Lehmann

This is from a touching piece in today's New York Times by a mother on coming to terms with her son's autism.

Click here to read it.