A Confession and Just Another Gorgeous Autumn Sunday

I have a small problem.

It's an addiction really.

It is completely impossible for me to resist purchasing doll houses at garage sales.

Ellie and I found this one today at what was billed as a "garage sale" but was actually an estate sale. Ellie took one look at that beauty and said "I want to take this to my house." I couldn't say no when I found out it was $2. And yes, I searched futily for vintage Little People. This house isn't vintage (1993 though-not a spring chicken!) but I figured there might be some older things lurking. No such luck. Did I mention If they ever do a special "Hoarders" episode on doll houses I will be an excellent candidate.

It was very sad. The woman overseeing the sale was cleaning out her parents' house. I imagine they either died or are no longer able to live on their own. I didn't ask, but she told me she'd grown up in the house and was preparing to put it up for sale. It felt odd going through other people's belongings. There was just so. much. stuff. And it reminded me of how that's what we leave, I mean, in addition to offspring (perhaps) and loved ones and memories, we leave a lot, a lot of stuff. It was fascinating though. Every single room in the house was up for grabs, there were even items in the bathroom that people were buying. There must have been twenty pairs of ice skates in the basement, half a room of LPs, an entire wall of vases and crystal. There was a box of commemorative champagne glasses ("happy 25th anniversary!") that had never even been opened, along with an entire shelf of Corningware, white with the little blue flowers, that I remember someone in my family having. I took a couple of little dishes too, unable to resist.

In other news, today was a much better day in the Leo department. Erin took him to play miniature golf with his two peer buddies Jake and Adam. It has a Safari theme--a giant elephant, a fake shark pool, and fountains galore. Erin watched the boys from afar and said Leo had a blast. After golf they stopped at the deli to get takeout for lunch. When Ellie and I returned home with our garage sale booty, we dined on sandwiches and extra sour pickles and black cherry soda, al fresco. It was another crystal clear, idyllic east coast autumn day today. Leo was happy and agreeable and smiley and playful. Pfew.

Some days are hard. And some days are much, much better.

And did I mention? A new dollhouse?

Breaking Stereotypes at the Pumpkin Patch

We went to a farm today that boasted not just apples for picking but pumpkins too. And Leo's beloved hayride. There was only one problem. Leo was not all that excited or happy about much of it.

Oh sure, he had his moments of pleasure. He jumped up and down with anticipation of the approaching hayride. He smiled and cuddled on the hayride and hugged the woman who helped people down the stairs off the truck (oops). He was happy to pick apples for a while. But something was just off. He was more stubborn than usual. He didn't want to hold hands in the parking lot. He didn't want to stay on the path (you know, away from the oncoming tractors). There was much scowling about, well, pretty much everything. In short, he was just a big grump.

But wait, aren't people, especially children with Down syndrome, such "happy little beings?" That's what the geneticists at the hospital promised us the day that Leo's official karyotype came back. Hey! I want my money back, because Leo can be a downright crab.

A happy moment, but notice how he's trying to get away from me taking his picture?

It all seemed to go downhill when, on the way to the farm we had the nerve to drive past one of his favorite places, Barnes & Noble. Thus began the chant for "bookstore! bookstore!" When I explained to him that we were going to a place with hayrides! and apples! and pumpkins! He wanted none of it. He became completely focused on the bookstore and the cruelty of how we were making him go to the farm instead. And did I mention he even had his Grandma Jerry with him too?

By the time we reached the farm, a good thirty minute scenic drive through winding roads of northwestern New Jersey farm country, he was in a slightly better mood, and thankfully the bookstore seemed to have receded from his mind. But like I said, he just wasn't himself. Everything felt harder than it needed to be. Granted, that is not unusual, but today was just different.

I feel badly for Leo. As I've said before, I think much of his frustrations stem from communication issues. Then again, we knew exactly what he wanted today: the bookstore. It just wasn't in the cards. Whereas other kids get mad about not getting their way and tantrum about it, Leo seems to just hold onto it, completely unable to listen to reason. He knows what he wants and he wants it now and god help anyone who stands in his way. Transitions can be really rough.

In this case, he wanted to go to the bookstore and just was not able to shift his thinking towards the farm. But he's six years old! a not so patient little voice in me says. He shouldn't be acting this way anymore. Of course this isn't fair to Leo because sure, he's technically six, but he's not really six, in terms of his maturity level. And also? I think today Leo was just tired. He kept sitting down, like, in the middle of the path near the apple orchard. This is just not like him. But whereas another child might say "Mommy, I'm tired!" Leo just takes his frustration out on everyone else around him.

Or maybe I'm just too hard on him. I know that I can be. I'll be the first to admit I get frustrated and honestly? A little depressed by days like today. Why can't he just have fun? Roll with the punches? Why can't he listen, when asked not to run into the road. Why does everything just have to be harder? It's the DOWN SYNDROME, a little (OK, big) voice in me booms. If it weren't for the Down syndrome... Days like today leave me feeling exhausted and spent from being a wound-up ball of nerves because every. little. thing. is met with a "NO!"

I know blaming the Down syndrome is seriously unproductive. What does it accomplish? Or, sure, I could throw myself a big old pity party, but why? What's the point? So some of his behavior is related to the Down syndrome. What else is new? Not to stereotype but I think most of us in the "club" can agree: we've got some seriously stubborn people on our hands.

Of course it all evens out in the end, because as I've said here before ad nauseum, Leo is one of the most empathetic, nurturing, thoughtful people I know. He can be witty and funny and smart and affectionate. Nobody else was hugging the farm employees except Leo (and we do try to reign in the hugging but believe me he is fast).

It is what it is. But it doesn't keep me from wanting to have a little tantrum myself sometimes.

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.

The Worst Thing That Ever Happens To You

"A Country Wedding," 1951, The Bennington Museum, Bennington, Vt., © 2007 Grandma Moses Properties Co., New York

My dad has an expression he reserves solely for moments of ridiculous self-pity: “May that be the worst thing that ever happens to you.” It’s appropriate for the many first world troubles we face. Couldn’t get a reservation at your favorite restaurant? Missed your bus? Spilled coffee on your favorite shirt?

May that be the worst thing that ever happens to you.

Trust me when I say this did not go over well when I was a teenager. It stings a little, doesn’t it? But it’s also an instant reality check (as only Yiddish expressions can be-I think that's its origin but I can't seem to find it now). And now? I get it. That’s not to say that we’re not all allowed mini tantrums about the mundane from time to time but really, I think we could all stand to use a bit more empathy in our every day lives. I hope that doesn’t come off as preachy, and I am far from perfect on this front, but it’s just been on my mind because of something that happened yesterday.

I was at the cafeteria in my building when the woman next to me became furious because the line cook apparently forgot her veggie burger. There was muttering and deep sighing and a lot of eye rolling. To be fair, maybe she was just having a bad day and this was the straw that broke it. Maybe she was diabetic or hypoglycemic or just really, really hungry. I tried to be charitable and give her the benefit of the doubt but still, her reaction did seem extreme. She was feeling well enough to berate the line cook so I really don’t think it was a medical emergency. And what did he do with that frustration? Did he shrug it off? Or did it ruin his afternoon? Did he go home and yell at his partner or kick his dog?

Honestly, there was a time when I could have been that woman, incensed by her lack of a veggie burger. For the most part, I’m wired fairly “Type A.” I can easily get impatient with myself and others if I allow myself to go there. But a funny thing has happened since Leo came into my life. I don’t really feel so impatient anymore. Or I feel the impatience, and then it just sort of rolls away from me, washes over me like a wave. I feel impatient with mean people, and people who lack patience for others but really? The coffee line is taking too long? Someone is struggling with their bag on the bus? You don’t know the whole story.

“Be kinder than necessary, for everyone you meet is fighting some kind
of battle.”—Author unknown

This refrain has become something of a mantra for me, the last few years (even if, as some sources claim, it’s an amalgamation of a quote by Ronald Reagen). Don’t get me wrong. I can still swear like a sailor when I’m driving and when Ellie calls me into her room at bedtime for the ninety-seventh time to “tell me something” I want to bang my head against the wall. I am clearly no saint. But let's just say my perspective has shifted.

It’s such a cliché to say that having a child with “special needs” makes you more sensitive, opens your eyes to a whole other world, to a slower pace. But clichés come from truth. It’s difficult to be in a hurry with Leo. He won’t allow it. Why not try out every bench and greet every person you meet from the car to the doctor’s office. You only live once, right?

“The heart breaks open...I know now that we never get over great losses; we absorb them, and they carve us into different, often kinder, creatures. Sometimes I think that the pain is what yields the solution.” —Gail Caldwell, Let’s Take the Long Way Home

My heart has broken, I think. Twice. Once when my mother died and once, however briefly, when Leo was born. And I've really tried to do what the writer and chaplain Kate Braestrup instructed: "Let it break open...love more."

I don’t mean to equate Down syndrome with a loss but for me? In the beginning, it surely felt like it. As I’ve written here before, we didn’t know that Leo had Down syndrome in advance, but learned of it in the delivery room. I have no problem admitting I grieved the loss of the baby I thought I was having. So yes, there was a loss there. The loss I’ve experienced has completely marked me, but for the better. I have a son with Down syndrome. Once I thought that was the worst thing that could ever happen to me. Now I know better.

When I was searching for the origin of that quote of my dad's, I was reminded of another gem from one of my favorites, good old Grandma Moses:

“Life is what we make it. Always has been, always will be.”

Honestly I want to staple this to my arm I love it so much. It’s just…everything.

So if you choose to make your life about tantrums from delayed veggie burgers, that’s your business. But may that be the worst thing that ever happens to you.

Drive By

I don't usually post this late in the day but I have to get in here, because I'm a person who keeps promises.

So let's see...

Insanely busy at work.

So tired my eyes are bloodshot.

Waa waa waa.

I may have eaten my weight in candy corn today. Feeling fall festive, I filled a dish with candy corn and those adorable little pumpkins (see above) and put it on my desk at work "for people who come to my office." But really, who am I kidding?

I got some new shoes. I know, I know, can you get any more Mom? But trust me, you don't want to know what size shoe I wear nor the width. Truly this is as good as it gets for me, shoe-wise. And I got them in black, don't worry. Also? Twenty dollars off with a coupon that I found through Googling. Always, always Google for a coupon. Yes it's true I'm a Never-Pay-Full-Price-Girl.

Is anybody still awake?

The used DVD of "Beauty and the Beast" that I ordered for the kids arrived in the mail today. I'm pretty sure my little Belle-obsessed Ellie-Belle is going to hyperventilate when she realizes there is an entire Belle MOVIE. Love, love, love used Amazon. Some Pig: A Charlotte's Web Picture Book should arrive any day and I can't wait to see Leo's face.

Unexpected trip tonight to the airport to pick up Grandma because Erin was running late at work (Hi Grandma Jerry!).

Kids loved the little detour. Ellie shrieked as she pointed at all the "tall buildings in the big city" (Newark). I didn't have the heart to remind her there was a just slightly larger city right across the river. Bonus: we saw three different trains and plenty of airplanes landing. Kid heaven. I love how kids can make something as simple as a trip to the airport a thing of unbridled joy.

I have so many posts in my head, there is so much I want to cover and say during this month.

Also, questions. Are there any questions out there? About anything at all? Fire away.

I promise to be more exciting tomorrow. OK I probably shouldn't say that. I hope to be more exciting tomorrow.

Whatever Gets You On The Bus

Leo’s creativity never ceases to amaze me.

But let me back up a minute. He asked to go downstairs to the playroom this morning before school and I agreed. He ate grapes and drank orange juice and played happily with his trains and Little People while I made breakfasts and lunches and a very large pot of coffee.

It started as many weekday mornings do, with Ellie calling to me from upstairs with the inquiry:

“Mommy, is there no school today?”

“Yes Belle, we have school today,” I answered.

A few minutes later Leo emerged from the basement with this ensemble:




In case you’re having a hard time making it out, it’s a stuffed snake, riding in a Build A Bear backpack (well of course it is!).

And yes, he wore this little get up on the school bus (not sure how they strapped him in but he practically skipped to the bus, so I call that a win). The bus lady’s giggle at the sight of Leo was pretty priceless too.

You know what? Whatever gets Leo on the bus, that’s what I say.

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