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

From a Syndrome to a Son

It’s hard to write about Down syndrome every day.

I know that’s not the rule during 31 for 21, but I feel obligated to at least address it, as much as I can.

And like others have said before me, I think the fact that I can’t write about it every day says a lot.

Yes, Down syndrome is a part of our life, it’s a part of who Leo is, but it doesn’t define him.

This wasn’t always the case. There was a time when I thought about Down syndrome nearly all the time. There wasn’t a day that I didn’t wake up, roll over and think “my baby has Down syndrome.” And yes, I was sad about it. I'll go ahead and say that I was full-on depressed about it. I woke sad and I went to bed sad.

In the mothers pushing the designer strollers through my Brooklyn neighborhood, I saw everything that I lacked. I didn’t get the “perfect” baby. While other babies started to sit and crawl and pull up, mine wasn't doing anything when he was supposed to. And I wondered if he’d ever do anything. Or if I'd ever feel like my old self again. Or if I'd ever think about anything but Down syndrome and how much I hated it.

But somewhere there was a shift. And I credit Leo for much of this. Sure Leo is challenging sometimes (what kid isn’t?). His language delay certainly complicates our communications. He gets frustrated. We get frustrated.

I hate that Leo requires annual blood draws to check his thyroid and CBC, that he has a 20 percent chance of developing leukemia, that for a few years we had to take him to the ENT every six months, eliciting hysterical cries from him when he had to be held down and examined (I think I still have some bruises from those brutal appointments). I hate that he had to have eye surgery at age three. I hate how raw and red his cheeks get in the winter time. I hate that Leo is five and he still often runs away from me in public places. Yes, I attribute all these things to Down syndrome.

But ultimately, I think the good outweighs the bad. And Leo is just Leo. He is a champion hugger. He loves to laugh and entertain. He is turning into a great little student who works hard in school and delights in pleasing his teachers and therapists (he's way better behaved for them than he is for me!).

Leo is a boy who happens to have Down syndrome. When you first get the diagnosis, whether it’s prenatal or you’re staring down at this foreign little newborn, it feels like all they are is a diagnosis. The baby is just Down syndrome personified.

And somewhere along the line they become people. With strong preferences and opinions. With senses of humor and preferred people and places and animals. The babies who love frozen blueberries and vanilla yogurt and crinkled up newspaper become little boys who love scrambled eggs so much that they eat them with their eyes closed. They become little boys who like to zoom around the house in a super hero cape, and play “Murderball” with a doll stroller. They become little boys who like to bake pumpkin bread and take their dog on a walk. They become little boys who flat our adore their little sisters (because teasing and torment is a sign of love, right? Right?).

Now when I wake up in the morning, I’m just grateful if the kids are still asleep (anything that will buy me fifteen minutes of peace to make breakfasts and lunches) and that the dog didn’t have an accident in the dining room and that I remembered to buy half and half for my coffee.

Most days, Down syndrome is really the last thing on my mind.

Typical Birthday Party and “Retarded” Playgroup

Saturday morning Leo and Ellie went to a mutual friend’s birthday party at a play space. I guess here in New Jersey play spaces are The place to have a party (we had an invite for Leo for another one in our mailbox when we got home Saturday night -yay I love parties!). I completely see the appeal but I think it’s funny though that we all finally (I say “all” in reference to the many people we know where we live who have made the exodus from cramped NYC apartments to “spacious” houses) have the space to have parties and yet it’s so popular to not have them at home.

That’s beside the point. Both kids had a blast climbing the massive play structure-and I do mean massive. It must have been 20 feet tall, basically it looked like a giant hamster activity center (the plastic ones with the tunnels). Ellie was pretty brazen for a little thing-she held her own with the three and four year olds no problem. I had a few heart pounding moments where I couldn’t spot either kid (I knew they couldn’t go far but it’s still not a mom’s happiest moment). And Leo is very fast. Thank goodness I did see him out of the corner of my eye sneak into the party room or there may have been far fewer cupcakes than the host had originally planned.

Leo pretty much sticks to himself at these things. He didn’t want to participate in circle time, wanted nothing to do with the jumpy-apparatus that was blown up after the dancing. Fine, whatever. He was content to climb and slide and climb and slide some more.

Both kids also had a great time with this contraption-not sure what to call it. It involved climbing a little ladder and then sliding while hanging. You get the idea. See an earlier post for a video, though the shot below does feature a lovely view of Leo's cute outie belly button.


And he was quite happy to go eat pizza in the party room but insisted on beginning his meal sitting under the table. I don’t know what it is, if it’s the noise or the crowds but he does this often when faced with a group of people. Just ideal for social situations! It was ok though. I mean, I’m over being embarrassed or self-conscious about it. Eventually he sat down and ate his pizza like everyone else.

Of course I would like Leo to be the Down syndrome poster child in these kinds of “typical” social situations and act like everyone else. Of course I think that invariably people see him doing something weird (eating his pizza under the table) and think that he’s being “weird” because he has Down syndrome and therefore people with Down syndrome are weird.

But like I said, Leo eventually came up from his subterranean position and joined the rest of the party. And he loved singing “Happy Birthday” (one of his favorite songs ever) and he clapped the loudest and longest of anyone when the song was completed. But then. After Leo was finished eating he jumped up and zoomed back out to the play space. I figure his thought process was “good food, now I’m full, let’s play some more!” Makes perfect sense, right? The only problem is, there was another party going on in the play space. And after we ate it was our cue to leave.

Our exit was a touch humiliating. As much as I can say it doesn’t bother me that Leo ate part of his pizza under the table, it does bother me that I had to wrestle him into the stroller in order to control him from running away from me. Without help and with Ellie in tow, that was the only way I was going to get us all out of that building in one piece. I’m sure the fact that Leo was exhausted didn’t help matters, it just would have been nice to not have to push my 4 ½ year old out of the party hysterically crying, in a stroller. But then I have to remind myself that Leo isn’t really 4 ½, developmentally. And I’m pretty sure we weren’t the only ones having party-exit-emotional-outbursts (though I honestly didn’t see any that were quite as vocal as ours). And there was a moment when I had to dash from the party room to the playroom to retrieve Leo when I left Ellie completely unsupervised so that was a little scary. It happened so quickly that I wasn’t able to grab a parent to see if they could look after her for a second while I attended to Leo. Not to be dramatic, I mean it’s not like she was playing next to a swimming pool or anything. When I went back to get her she was carrying someone’s mary janes around. That little girl likes shoes.
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Later that day was the New York City Down syndrome parent group/play group. I knew some of the parents in real life, others I’d only exchanged emails with (a few were particularly helpful when I sent out the desperate “sleep problems for a preschooler” email a month or so ago). It was a nice mixture of ages of kids, I think the youngest was seven months old. It threw me a little when one mom, her son almost two, smiled at Leo as he barked like a dog on all fours inside a “house” made of cushions, and told me it was “great to see older kids who were doing so well.” Wasn’t it just last week that I attended my first playgroup with infant Leo, studying the faces and movements of the “old” (four and five year old) kids with a mixture of curiosity, tenderness and terror?

Sorry, gratuitous baby Leo picture. Since I didn’t have a blog when he was a baby I feel that he missed out on being shown off as a newborn. That baby I saw on Saturday looked an awful lot like this:

As an aside, I know that all sleeping babies kind of look alike but it’s really eerie to me how similar sleeping babies with Down syndrome look alike. The little 7-month old on Saturday that we met, when he passed out on his mother’s chest it was like seeing a sleepy infant Leo. It almost made me shiver.

In addition to the adorable sleeping 7-month old, there was a gregarious 8-year-old with a wonderful sense of humor. She told me “Babies (i.e. Ellie) are not allowed to play on boats” (there was a large boat climbing structure in the center of the playroom). She also reached over and while we were talking, sweetly (some might say I guess, inappropriately) tucked my hair behind my ear.

I met the mom of a toddler who told me her diagnosis story. We all have one, whether it was finding out on the operating room table (me) or prenatally and over the phone by a genetic counselor (her). She told me how insensitive her genetic counselor was, pausing to take another call and putting her on hold in the middle of the life changing news. Her description of the events in that phone call? “Retarded.” She said it with a straight face, and without missing a beat.

I waited after she said it, a second or two, expecting her to look embarrassed or apologetic. Wasn’t that word banned from “our” vocabulary? Ironically, I had just heard my beloved Dan Savage use “retarded” on a recent podcast and cringed. He quickly followed it up with a humorous explanation that only he could get away with. Ordinarily, retarded as an adjective is a deal breaker for me. In fact, I just had drinks with some old friends and one of them dropped the “R” bomb, knowing full well about Leo. I stupidly kept my mouth shut and haven't thought of this "friend" in the same way since.

I once had a friend who used the word a continuously. It bothered me and I finally said something to her about it. Her response? She didn’t think of Leo as retarded, therefore the term wasn’t any insult. To her.

Where am I going with all of this in, to borrow one of Amy’s expressions, this rather unblogosphere friendly length. I guess I just found the use of “retarded,” by the mother of a child with Down syndrome as interesting. But maybe some of us are like my friend, they don’t see our kids as retarded in that way. Our kids have delays. Our kids are different. Our kids do things in their own time. But they are not like, retarded. As babies, when they sleep they look like angels. They sing “Happy Birthday” louder and longer than anyone at a birthday party. They sweetly tuck hair behind an ear. To be fair they also have ugly fits when it’s time to leave a birthday party, but they are not retarded. Retarded is so school yard bully. So ugly. Maybe it’s that the original definition of the word has changed and been replaced by things like “special needs” and therefore retarded can be returned to it pejorative status, but not relating to actual people. Whatever. And they can say what they want but I hardly think we've come to the point as other minorities have in which we have "reclaimed" our ugly word (I'm thinking of the n-word, queer) into something that is no longer (at least to some) icky. Maybe I'm old fashioned but I still think it’s ugly and I can’t shake it. And I won’t use it. And it stings when I hear someone else say it, even if their kid does have Down syndrome.

Shout Out to Babytalk

I realized in my comment about Babytalk magazine that I forgot to mention that this publication did something great last year which was feature a baby with Down syndrome on the cover, along with this article about having a baby with DS. Boy could I have used that issue back in the fall of 2004 when I was suffering from the Only One Syndrome (I'm the only one that has a kid with DS).

Coincidentally (I happen to think it was absolutely not a coincidence, actually) Leo was featured in Babytalk, back in 2006 (again, I have a connection). It was not a story about Down syndrome, Leo was just modeling some musical toys. He had a blast (what can I say, he has been a ham from the start). I like to think that it was his charm and charisma that got the editors to think about doing something a bit more substantial about DS. And what do you know, a year later, they did.

Pictured above, Leo in Babytalk at about 22 months.

Addendum to my First Time Mom post

I forgot to mention some crucial information about why I feel like a first time mom. It’s a lot more than the developmental stuff. Leo was an insanely easy baby. He slept through the night at six weeks. He didn’t teethe. In fact I didn’t know he had a tooth until he bit me while I was nursing him (I’m not sure what this says about me as a mom but it’s the truth). Ellie was not easy. In fact I don’t think I put her down until she was about three months old. For the first month she didn’t sleep at night. I mean not at all. And she was fussy. Really fussy. Thank goodness she completely mellowed out at four months and she’s now pretty easy going. She’s still way more opinionated than Leo ever was but that could also be a personality thing. I think Leo is making up for lost time now because presently he has TONS of opinions.

Leo hardly cried as a baby. I remember him sleeping through his diaper being changed! It was so sweet how he would fall asleep on me so easily. So many sweet memories of holding him while he slept. To be honest, Ellie had me worried there for a while. I was like, whoa, this newborn thing is actually hard. Now I see what all the fuss is about. I don’t like to make generalizations but I think most of us would agree that babies with Down syndrome are pretty easy babies. I think it’s a gift. I can’t imagine having to deal with that surprise diagnosis and a fussy baby. He was so serene and easy. How could I help but fall in love with him?

Pictured above, Miss "Fussy" aka Sleep Striker Ellie (who is now the definition of sweet and mellow). She looks like a tough customer, doesn't she?