Visions of Johanna

Someone had his first birthday last Wednesday. We celebrated with a party on Saturday.

With his future prom date, Evie.

I’ve been a bit delayed with this post, mainly because I haven’t been sure what to say. My baby’s first birthday is a moment I’d been looking forward to—and dreading—for the last few weeks. Looking forward of course to celebrating the fact that my little guy has turned one, that he’s morphing into a toddler who walks holding my hands and drinks from a straw like a big boy and grins at me and says “ma ma.” But it’s sad, too, because Geoffrey is my last and watching him reach all his baby milestones this past year has been bittersweet. I’ll never get to do it again.

I keep thinking back to the day he was born, when he was placed in my arms and I watched as he yawned and stretched and then latched on, sleepily nursing. I remember watching Glee that night in the hospital room, cuddling Geoffrey in my arms and bawling because the episode showcased the death of Jean, the beloved sister of Sue (Jane Lynch) who had Down Syndrome. Geoffrey was out like a light, peacefully sleeping in his newborn trance, and I remember looking down at him and wondering if he would love Jo Jo as much as Sue seemed to love Jean, and if he would have to face a similar situation—and experience the same grief—in thirty or forty odd years.

I remember nursing him those first few weeks after he came home from the hospital, and how he’d fall asleep in my arms and we’d stay like that, snug and warm in the bed, for the rest of the night. I remember when we drove up to Montreal and stopped for lunch and a strange woman came over and exclaimed to me, “He’s an old soul.” I remember marveling at how placid he was, how amazingly serene, and how he could calm himself simply by sucking on his fingers. I remember noticing when he was about ten weeks old that his eyes seemed to move back and forth, especially when he was tired and ready for a nap. I remember the morning I snuck up to his bassinet while he gurgled happily and stood there silently, waiting for him to see me and smile, and how nothing happened until he heard my voice and beamed a huge grin. I remember feeling confused, and concerned, but also dismissing it as the concerns of an over anxious, over wrought, over tired mom.

I remember going to the eye doctor and being told Geoffrey had a form of albinism and would most likely be legally blind. I remember my husband asking increduously, “what does that mean? Does that mean he’ll need to read Braille? Does that mean he’ll need a seeing eye dog?” and the doctor just shaking his head and saying he didn’t know. I remember screaming in the parking lot, just losing, howling like a madwoman with tears running down my face, wondering how we could handle anything more after what we’d been through with Jo Jo.

But then I remember going home, and listening to a message from our pediatrician telling us everything was going to be fine, that he was very optimistic and that he had another little boy in his practice with albinism who was doing great. I remember taking Geoffrey to another eye doctor the very next day, one who had much more experience with albinism, and I remember him reassuring me that Geoffrey could indeed see, and that it would just take time for his vision to come in. I remember talking to the mother of a 16 year old boy with albinism who told me to not worry, to stop shaking rattles in front of my baby’s face and to simply spend some time cuddling and playing with him. I remember the positive blog comments I received from other adults with albinism, who wanted to just reach out and reassure me that Geoffrey would lead an exceptional life. I remember the college professor with albanism who emailed me to not treat Geoffrey any differently, to just “let a kid be a kid.”

Deep thoughts

A lot of people have emailed me wanting to know about Geoffrey and how he’s doing on all levels, and I have to say, he’s doing great. He’s right where he needs to be with most of his milestones, although he does have some delays with hand/eye coordination, which is to be expected due to his less than stellar vision and his nystagmus (that means his eyes go back and forth). We had a big scare in January when we took him to a pediatric geneticist who was convinced he had a form of Hermansky Pudlak Syndrome, a blood platelet disorder that can be associated with certain forms of albinism, especially among Jews, but he didn’t. Which just shows you at the end of the day how much the so-called experts seem to know.

I get asked all the time what Geoffrey’s vision prognosis is, but honestly, we still don’t know. Our local eye doctor is very optimistic. He seems to see a lot, but he’s also a very bright kid and has great adaptive skills, so he may just be using his little baby brain creatively to maximize what he has. And I have to say, it doesn’t really matter to me at this point whether his corrected vision will turn out to be 20/40 or 20/400. We’re not doing anything differently at this point. He has occupational therapy once a week and sees a teacher for the visually impaired twice a month, and other than that we’re out and about doing business as usual.

Geoffrey’s my last baby, and I made a conscious decision a few days after the diagnosis that I was going to just savor every last gurgly moment and not worry so much about things I can’t control, like his eyesight. He’s getting the therapy he needs to thrive, and I’d rather spend my free time “chatting” with him or playing peek-a-boo or helping him knock over block towers than obsessing over whether or not his vision will be good enough to allow him to drive. Besides, in twenty years, cars will be driving themselves anyway.

We had a great birthday celebration, although a certain someone got a little overtired towards the end (that’s what happens when you have a 7 pm bedtime) and cried while gumming down his birthday cake.

But hey, it’s his party and he can cry if he wants too.

Thankfully, we didn’t have a repeat of Jo Jo’s third birthday party, when the dog ate half the cake, but Ivry lurked around the high chair, just waiting for Geoffrey to throw some morsels her way. She looks so angelic, but you can just see her little doggy brain plotting.

Happy birthday, Geoffrey Solomon Sklar. We all love you very, very much.

Last Saturday, Geoffrey and I made a surprise trip to visit Nana and Pop Pop.

We haven’t seen them since Jo Jo’s birthday. Pop Pop is still going through chemo, so he’s very weak and his immune system is shot. Unfortunately, my kids are laden with germs—the last time my dad saw them, he came down with a cold and was house bound for a couple weeks.

But last weekend was special. Pop Pop’s birthday was on May 9th, and Sunday was Mother’s Day. I called Pop Pop’s oncologist in Boston, and he said it was fine to visit with Geoffrey as long as neither of us was under the weather.

We showed up at 10 am and surprised Nana, who was barely out of her curlers.

We had a great time. Geoffrey loved exploring a new place, especially one that’s not Geoffrey-baby-proofed and filled with such tempting items as sharp edged glass coffee tables. He bumped his head a couple times, but hey, just makes those skull bones stronger.

And my almost one-year old hit a major milestone while we were there.

Geoffrey and I were playing on the ground (inches away from the oh-so-enticing-but-oh-so-dangerous coffee table) while Pop Pop sat on the couch, listening. Geoffrey crawled over to me and pulled up to stand, grinning. Then he cautiously moved his right hand off of my shirt and stood, balancing himself by holding onto me with just one hand.

Then he looked at me and beamed his happy baby-toothed smile before removing his other hand. He stood there in shock, and glanced at me in glee.

Look, mom, I’m standing! I could hear him thinking.

“Daddy!” I said hurriedly. “Daddy, look!”

My father stared over in the direction of my voice, frowning, and I realized, with a huge stabbing pain in my stomach, that I had said the wrong thing. The completely, horribly, terribly wrong thing. He couldn’t look. He couldn’t see that his grandson was standing.

I tried to cover it up quickly. “Daddy, he’s standing!” I said brightly.

“Is that so,” my father said in his jovial Pop Pop voice. “Geoffie, you’re such a big boy!” And then the moment ended and Geoffrey toppled over on top of me—narrowly missing smashing his head open on the glass coffee table—and started bawling.

My dad was quiet for the rest of the afternoon. My mother said it was because he was tired, but also a little upset. It’s so hard for him, to know that Geoffrey is there but not to be able to see him. It’s so hard, for a man who for the last 40 years got up every morning at 6 am without even an alarm clock to rouse him to feel so exhausted and fatigued from chemo that he can barely move from the couch.

I know it’s temporary. In a couple months, the chemo will be done, and he will go into remission, and ideally he’ll stay in remission long enough for them to come out with some killer new drug that will forever wipe the myeloma from his system.

Yet I still grapple with all that’s happened to him. It seems so senseless, and so tragic, and some of it (the herpes encephalitis that ultimately led to his blindness) could have been avoided if certain doctors had caught it in time.

But I’m still glad I brought Geoffrey to see him, and that at least he got to squeeze my son’s little fat thighs and hear his giggle and smell his sweet baby scent (as well as the not so sweet scents when Geoffrey loaded his diaper).

And I can still hope (and pray, even though technically I’m agnostic) that next year in this time, on my father’s 70th birthday, we’ll all be in a different place.

It seems like the last few times I’ve logged onto Facebook, I’ve been inundated with status updates of people bragging about their kids’ intellectual prowess. So and So got into the preschool program for exceptionally gifted children! So and so is the brightest child their teacher has ever seen! So and so is only two and a half but is already fluent in two languages!

I have to admit, I read these posts, and they crack me up. A couple years ago, it would have hurt, to read about “exceptional” children and to know that my daughter wasn’t considered one of them. But now when I read or hear such things, I feel bemused, almost as if I were watching members of an alien species conduct a tea party in my backyard. It feels so out of my own reality, it’s fascinating.

All this came back to mind this morning, when I saw a clip from the Today show about a three year old , Emmelyn Roettger, who has an IQ of 135 and is already a member of Mensa. The little girl was on the show with her proud, beaming parents as TV host Natalie Morales tried to get her to answer questions about the solar system. Alas, the little genius was too busy sticking out her tongue and waving to the camera to answer questions.

As I watched, I thought, are you kidding me? Let the kid be a three year old. Don’t put her on TV and expect her to show off like a trained poodle.

But then the real moment came.

The child prodigy had to do a number two. And she announced it in no uncertain terms on camera. Morales tried to distract her, but Emmelyn was having none of it.

Her mother looked mortified. “I knew this would happen,” she mumbled, and I thought snidely, “that’s what you get when you make your 18 month old take an IQ test.”

Some people may call it sour grapes on my part, that I’m just bitter because my own daughter’s IQ will ultimately end up being no more than half that of little Emmelyn’s. I’ve thought about it a lot, and the answer is, no, I don’t think so. But I do think that having a child with developmental delays has made me question so much of what we value as “gifted.” Is being able to recite all the planets in the solar system at age three really what we deem important in our society? Is it not enough to be proud of your preschooler because she sings and dances and gives you wet, sticky kisses rather than the fact that she got into some supposedly incredibly difficult to get into program for intellectually gifted children?

This morning, I went to Johanna’s preschool for a Mother’s day breakfast. I watched as my daughter sat among her typical peers, and I watched as her typical peers (literally) ran circles around her. But then I watched as her teacher leaned over to show her something, and at the way her eyes crinkled together and she beamed back at her with delight. I watched as she shouted yay and clapped and cheered for the other kids in my class, and I was, to use that Jewish Yiddish phrase, kvelling. I couldn’t have been more proud if she’d stood up and demonstrated to everyone a new formula for Pi.

Personally, I think IQ tests are somewhat bogus. The party line among many in the Down syndrome community is you’re never, ever supposed to let the school system perform IQ testing on your child. I’m not going to let a school administrator within a foot of any of my kids with an IQ test. I think it’s dangerous to label any child with a number, whether it’s to bolster the case that they’ve got intellectual function way below or way above the norm. I’ve even heard parents of other kids with Down Syndrome boast that their kid did take the IQ test and scored in the borderline/low normal range (which usually then gave school districts an excuse to take away some of the services that were helping boost the child’s IQ in the first place), and I’ve always thought they were missing the point. They, even though well intentioned, were buying into the belief that their son or daughter’s value lies in a number.

But that’s something I never would have thought before I had Johanna. I would have assumed—like so many of us do—that the highest label you could ever hope to bestow on your child would be intellectually gifted.

I believe my daughter is just as gifted—perhaps even more so—than that poor kid Emmelyn, whom I am assuming will need years and years of therapy to deal with a world who only seems to see her as the sum of all her cognitive accomplishments. And perhaps Johanna’s greatest gift is her ability to force me to view our lives—and all we consider worthy—through a completely different prism.

Sounds hokey, but it comes from the heart.

A few weeks ago, I was strapping Geoffrey into his car seat when I realized Jo Jo was no longer standing in the minivan next to me.

“Jo Jo?” I asked, looking around the driveway wildly.

Then I saw her, sitting in her car seat beaming at me with a wide Cheshire-like grin, shoulder straps pressed solidly against her arms.

“How’d you get in there?” I asked, confused. I didn’t remember placing her there, but it was completely possible that in typical mommy brain mode, I’d done it automatically. Then Teddy started screaming that he wanted me to buckle him up, and I promptly forgot about it.

But on the way home from the park, the same thing happened again. Teddy climbed into the car, Jo Jo stepped in with a big boost from me, and while I was buckling Geoffrey up I noticed Jo Jo in her seat, beaming at me again.

“Whoa,” I said. “I know I didn’t put you there this time.”

She started giggling, obviously pleased with herself.

The next day, I watched her out of the corner of my eye while strapping in Geoffrey. There’s a small ledge on the back of his seat, directly in front of hers, and she’d figured out that if she just pressed down on it she could hoist herself straight in. “Yay!” she said happily as she snaked her arms through her shoulder straps. Then she caught me looking at her and grinned that Cheshire grin again.

It’s one of those things that’s no big deal when you’re the parent of a typical kid—Teddy’s been independently getting in and out of his car seat for quite some time now. But I’d just assumed that Jo Jo, with her low muscle tone and poor coordination, would require my help for at least the next couple years.

But here she was, surveying the view from her crumb stained car seat like a princess gazing over her fiefdom. She was clearly light years ahead of Teddy, who was grunting and squealing as he tried to scramble up into his seat. “Momma, help you, help you!” he wailed and Jo Jo looked at him with a look that could only be described as pure pity. Clearly her younger brother didn’t have the sophistication and poise to gracefully slide into his seat.

But that’s the thing about Jo Jo—just when you think you’re figured her current stage of development out, she goes and blows you away by effortlessly achieving some milestone you just assumed would be way beyond her.

I hope she takes pity on me, her poor clueless mother, who so clearly does not know how much her own daughter is capable of.

And I hope she continues to blow me away by showing me every now and then what she’s oh-so-capable of.

I was in CVS this past Tuesday picking up a prescription when my I phone beeped and I looked down to see a message from one of my editors at Redbook titled Why You Rock! I almost didn’t open it—I figured it was one of the mass emails editors sometimes send out to people looking for anecdotes for some sort of inspirational story or another—but on a whim I clicked on it and read “because you did an amazing job on the mommy tuck piece—which just got nominated for a National Magazine Award!”

I dropped my phone and gasped so loudly everyone in line who was complaining about waiting for their prescriptions stopped mumbling for a moment to turn and stare at me.

“Oh my god oh my god oh my god” I chanted as I got down on my hands and knees to scoop up my phone. I clicked on the message again. Had I hallucinated? Nope, I hadn’t. The message was still there.

“Are you okay?” someone asked. “I’m fine,” I said brightly, and then, unable to control myself, “I just found out I’m a finalist in the National Magazine Awards!” Everyone in line was gazing at me uncertaintly, and I realized how I must look…a slightly overweight, middle-aged women in grungy sweatpants rocking back and forth on her heels chanting. The only thing probably anyone there thought I was eligible to be nominated for was the loony bin.

“Congratulations!” the pharmacist behind the counter said, holding out my prescription. She had the fake frozen grin people have when they are accosted by one of those Jews for Jesus fanatics on the street and are trying to figure out their escape route.

“Thanks,” I muttered. I managed to keep myself composed enough to walk calmly out of the drugstore and into the parking lot, but once I got into the car I started bouncing up and down on my seat and screaming.

You see, the National Magazine Awards are in magazine speak the equivalent of being nominated for the Emmys. Ever year for, say, well, the last decade, I’ve had some editor email me excitedly and tell me they’d submitted one of my pieces for consideration, but every year, there’s some pretty stiff competition. Out of almost 2,000 entries submitted each year, less than 50 make the cut.

This year, I didn’t even realize I’d been nominated. I’d spent most of the year in a fog, between taking care of a newborn and dealing with all the random crises that had popped up in our small family. I figured this was one year where my professional aspirations were at the bottom of the heap, somewhere between the load of dirty laundry and Geoffrey’s smelly diapers.

But right before I had Geoffrey, I turned in an article to Redbook titled “Would you Get a Mommy Tuck” and somehow I had managed even through all the pregnancy hormones and fatigue and nausea and the anxieties of transitioning Jo Jo into the school system to do a good enough job that my editors had decided to submit the piece to the National Magazine Awards.  (You can read the article at http://www.redbookmag.com/health-wellness/advice/post-pregnancy-tummy-tuck)

It was a great moment, one of those shining ahha! moments you have when you realize that yes, even sometimes with all the stress of raising three small children—including two with some very definite special needs—and those times when you feel so overwhelmed you can’t think straight and you’re really, really tempted to just swallow a handful of Xanax and crawl into bed and call it a day, but you can’t because everyone around you is under the age of five and screaming—you can still do a kick-ass job.

Of course, my moment of euphoria was short lived. I went home to relieve my nanny and found myself caught up in the shrieking, wailing, pooping chaos that has become my home. I always thought that after learning I’d been nominated for a National Magazine Award, I’d be celebrating with drinks at Elaine’s or dinner at Michael’s or some other fabulous Manhattan media mecca. Instead, I was standing in my kitchen dodging flying straw cups and cleaning up macaroni and cheese and wrestling the dog as she stood on her hind legs trying to eat sweet potato off of Geoffrey’s tray.

“Teddy!” I shouted at one point, as my two and a half year old sat in his booster seat shrieking at the offending avocado that had somehow made its way onto his plate,” Teddy! Don’t you care that Mommy’s a finalist in the National Magazine Award!” My voice was rising higher and higher and suddenly all three kids stopped what they were doing to stare at me.

Teddy cocked his head and looked at me, puzzled. “No Mommy,” he said calmly, in his sweetest little baby voice. “I don’t. I don’t care at all.” Then Jo Jo whacked him in the head with her straw cup and once again everyone started screaming.

By the time Jamie walked through the door that night, I was lying comatose on the couch, staring glassy eyed at the E! channel. “Don’t you want to open up some champagne to celebrate?” he asked.

“No,” I said. “I’ll take an Ambien instead.”

I did, and slept for nine whole hours. It was glorious.

The next night, I went into the city and celebrated the ASME nomination with my editors at Redbook. As I stood in their swanky offices and sipped champagne, I marveled at how wonderful it was to talk shop with other adult women instead of exchanging stories about spit up. I could actually feel my brain neurons reforming.

Best of all?

By the time I got home, all three kids were fast asleep.

I meant to write a post in honor of World Down Syndrome Day yesterday. I really did. But I woke up to a flooded downstairs bathroom (turns out there was a small leak in the kids bathroom upstairs) topped off by Geoffrey running a 103 degree fever in the afternoon due to an ear infection. To say the whole day was shot would be an understatement.

This morning I sat at my computer, Geoffrey squirming on my lap and Teddy climbing all over me while I scrolled through Facebook status updates glumly looking at pictures of other families celebrating WDSD. I don’t usually read many blogs, but I stopped at one to view pictures of a gaggle of toddlers with Down Syndrome congregating at a Florida beach. They looked so clean and fresh and…happy. I could never get shots like that. My kids would be covered with sand and snotty nosed and screaming as they fought with each other over beach toys.

I was just about to start silently berating myself about being a bad mother (after all, couldn’t I have taken my kids to a local beach yesterday?) when Teddy pointed to the computer screen and said, “Look, mommy. It’s a girl like Jo Jo.”

I looked and did a double take. He was pointing to a little girl with Down Syndrome.

It was a bit of a shock. Teddy and I have never had a talk about Down Syndrome before, and as far as I know, he doesn’t have a clue that there’s anything “different” about Jo Jo, anything that sets her apart from typical kids. Then I wondered if maybe I was over analyzing the situation, that maybe he was simply pointing out there was a girl in the picture around the same age as Jo Jo.

“You’re right,” I said brightly. “And look, next to her, there’s a dog like Ivry.”

He shook his head. “No,” he said.

“That’s a dog,” I said encouragingly.

“But Ivry’s bigger Mommy,” he said in his sing song voice. Then, solemnly, “And black. That dog’s brown. And little.”

I didn’t really know what to say. As I scrolled down the pictures, he pointed to another little girl and said, “Jo Jo. That girl’s like Jo Jo.”

Sure enough, it was another little girl with Down Syndrome.

 “That’s right Teddy,” I said. “She’s like Jo Jo.”

He was staring at the pictures thoughtfully. “They’re all like Jo Jo,” he finally said.

“Yes,” I said. “They are.”

I left it at that. As bright and perceptive as my two and a half year old son is, I’m not sure he’s ready for a whole discussion yet about Down Syndrome.

To be honest, I’m not sure I’m ready.

But it’s there, the knowledge that my small son realizes something about his sister is different. Right now, it probably doesn’t seem like a big deal to him. He’s still in his bubble of innocence, and if Jo Jo ambles along doing things at her own pace and in her own way, it doesn’t seem to faze him at all. He’s still too young to understand the way the world works, how it views children like Johanna in a completely different prism than how it views typical kids like Teddy or Geoffrey.

I dread when that time comes. I want these moments to last forever, watching my two eldest children hold hands as they chase the dog around the house giggling. I want Teddy to always see his sister as he does now: as his confidante, his partner in crime, his best friend.

That all will change, I know. On Sunday, I spoke to a mom who has 12 year old triplets, one of whom—her daughter—has Down Syndrome.

“How do the boys interact with her?” I asked, thinking, of course, of my two boys themselves.

She was honest. They adored her, and were fiercely protective of her. She told me about how one, every time he passes by her daughter at home, bends down and gently kisses her on the top of her head. But sometimes, when they’re out in public with her, it’s a different story. “They’re in middle school,” she shrugged. “When you’re that age, you want everyone to be the same. If someone sticks out, it’s embarrassing.”

I don’t want to think about that time, those moments a decade from now when Teddy and Geoffrey look at their sister and feel a twinge of something—shame, maybe, or annoyance.

After all, these moments happen with all siblings, and there will be many more moments when my sons look at my daughter and are filled with love.

But still…I’d be lying if I said I didn’t want to be at this place yet. Sometimes, as stressful and overwhelming it can be, I prefer the simplicity of babyhood.

Happy belated World Down Syndrome Day.

Three days after Johanna was born, Jamie and I were sitting in a sterile conference room off of the hospital NICU, listening to the doctor explain the intestinal surgery he was going to perform on our daughter that Monday. When he finished, he asked if we had any questions.

“Just one,” I said. “Do you think she has Down Syndrome?” I knew the answer, obviously, but we were in a haze of waiting for chromosome tests to come back and still in denial.

“Yes,” he said, looking uncomfortable. “She has all the features.” And then, seeing my face, he said, “it’s not so bad. Some of them can even be toilet trained and dress themselves.” He smiled awkwardly, in what I’m sure he thought was a compassionate smile.

I heard my husband snort next to me. “Why’d you do that?” I asked him after the doctor had left the room.

He rolled his eyes. “All people with Down Syndrome are toilet trained and dress themselves.”

“Really?” I asked. I didn’t know anyone with Down Syndrome; the condition was still a mystery. “How do you know?”

“I know Hannah,” he said.

Hannah Lusthaus is 34 and has Down Syndrome. She lives in Montreal and has what she describes as a “fabulous” life. She works at Concordia University and helps coach the Concordia Stingers on the side. She works as an assistant camp counselor at a sleepaway camp during the summers. She travels on her own, dates, and loves to go shopping with her mother, Evie.

I first met her when Johanna was four months old. We were up at our summer cottage in Ivry, an hour north of Montreal, and Hanna’s mom, Evie, invited us to her house for lunch. Hannah was home for the weekend after a full week as working as a camp counselor. I watched her as she played with Jo Jo on the grass outside the house and I peppered her with questions.

“Have you had any surgeries?” I asked. I knew her mom had told me, but I couldn’t remember.

“Just one,” she said matter of factly. “I had my tubes tied.”

I blanched. I hadn’t expected that, but she kept talking. “It was my idea,” she said. “My friend had it and I decided to do it too.”

Since she was being so open I decided to ask her. “Are you sad that you can’t have kids?”

She shook her head. “It’s too much work. I’d feel overwhelmed. I like my life as it is.”  It struck me that a few weeks earlier, a single thirty something girlfriend in Manhattan had told me the exact same thing.

When we left, she was sitting on the couch next to her mother, her head on Evie’s shoulder, their fingers intertwined. I watched the two of them cuddling and for the first time since Johanna’s diagnosis I didn’t feel sad. I could picture Johanna and I, thirty years from now, sitting close together and giggling.

Anyway, Hannah is amazing. Her parents, Evelyn and Charles Lusthaus, are amazing. And this video of her being named Montrealer of the Week is incredible. You can watch it here.

http://www.cbc.ca/video/#/News/Canada/Montreal/Montrealer_of_the_week/1610454002/ID=2209557262

Here’s to hope for the future.

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Next Wednesday is World Down Syndrome Day. Yes, we’re a little early. But I wanted to let everyone know that this Sunday, March 18th, an amazing group I’m part of (21 Strong of Fairfield County) is hosting their second annual World Down Syndrome Day Celebration from 2-4 pm at the New Canaan YMCA. There will be lots of fun family activities including music, art, a bouncing bears gym (!!!) and a karate demonstration.

Us Sklars

really like a good party, so we’ll be there! (except maybe for Geoffrey, since it’s his naptime.)

And on another, also exciting note….

Jo Jo is in the April issue of Ladies Home Journal!

You can read about her here.

http://www.lhj.com/health/news/down-syndrome/

But I encourage everyone to run out and pick up an issue–the photos of her are just breathtaking. Plus the magazine has been completely redesigned and looks amazing.

A huge thank you to the editors of Ladies Home Journal (including the awesome editor-in-chief and my former boss, Sally Lee) for raising awareness about Down Syndrome! Hopefully the pictures of my pretty princess will help people realize kids with Down Syndrome are more alike than different.

I’ve been remiss about posting lately. I’ve just really started magazine writing again and trying to find a balance with the whole work/family thing is always a struggle. But the blog posts will start up again soon.

But in the meantime, we’ve been having lots and lots of good times.

Dear Jo Jo,

Today is a big day for you! Today you are four years old!

I remember your birthday like it was yesterday. I remember the excruciating pain, and cursing at the entire nursing staff at Stamford hospital for not getting me the epidural fast enough.  I remember yelling at your father for answering emails on his Blackberry and not paying enough attention to me when I was going through some gruesome contractions. I remember worrying that the dog would be so stressed out that I wasn’t home that she’d poop all over the new living room rug.

Then you came out, wearing only your birthday suit, and covered in blood and your own poop and screaming your head off, and boy did our lives change!

I was pretty much in shock right after you were born. I didn’t know much about newborns, but I was pretty sure you had Down Syndrome, just by seeing the way you looked and how quiet the doctors and nurses were in the room. Daddy was just beside himself, crying and taking pictures and insisting on following you all the way to the nursery so he could record every single precious moment.  For once, I was glad to see he was completely clueless about something, and that he could spend the first hour of your life just enjoying you.

We both cried an hour later, after we learned you had Down Syndrome and would need immediate surgery, and we both staying up all night that first night even after drugging ourselves out on Xanax and Ambien. It seems so strange to look back at that time, and think about how scared we were, and how our fears were nowhere even close to reality.

I remember when you were transferred to Columbia, and the doctors all kept telling us you had low muscle tone, and you freaked them all out post surgery when you ripped your feeding tube out of your nose. One of my editors emailed me later, “Johanna will be ripping proverbial feeding tubes out of her nose her whole life.” And that’s right! You’re constantly shocking so called experts by doing all sorts of things you’re not “supposed” to be able to do.

I remember the NICU nurses labeling you a “hellion” because you screamed all the time and refused to shut up. What did they expect? You were stuck in a tiny incubator covered in wires and wearing a hideous hospital gown. You wanted to be home in your designer Bellini crib covered with faux fur pink blankies and wearing your Ralph Lauren sleepers! Even at five days old, you were a Jewish Princess.

I can’t wait for our Mommy and Me birthday celebration, which will include an afternoon at the NYC ballet, a ladies tea, and a shopping spree at Lord and Taylor with the gift certificate Nana so thoughtfully provided. It’ll be just you and me, mother-daughter time, without any annoying farting, squawking, attention-seeking younger brothers.

I thought a lot about what to get you for your birthday this year. It’s hard, because, let’s face it, you are the girl who has everything. (Although Daddy did manage to find even more creative gifts for you online.)

We’ll do what we always do each year, which is make a donation to the Down Syndrome Treatment and Research Foundation in your name.

But this year, I’ve decided to do a little more. I’m also making a donation in your name to Planned Parenthood. That might seem random, but it isn’t. I’m really concerned about the scary wave of conservatism that’s washed over this country. I’m terrified of Rick Santorum and his inane statements about prenatal testing and homeschooling. If he ends up running the country, we’ll have to take advantage of Daddy’s Canadian citizenship and move north of the border.

But mostly, I’m frightened to death about what could happen to you. I want to make sure there’s enough funding available so you can get a FAPE (that’s Free and Appropriate Public Education), that more money—not less—is awarded by the NIH towards Down Syndrome research, and that when you get older you’ll have access to things like contraception, breast cancer screenings, and other reproductive health care when you need it.

So hence the donation to Planned Parenthood. Because although you may have Down Syndrome, you’re a female first and foremost, and attacks on women’s health mean an attack on you.

I love you my darling. Love you so much that I gladly go to battle for you against stingy school districts, un-PC comments, and all the religious zealots that are out there.

Happy birthday.

And hopefully this year the dog won’t eat your entire cake.

Two very special people are here today…

Nana and Pop Pop!

We haven’t seen my parents since we went up to Boston to visit my father in the rehab facility over Thanksgiving. We wanted to visit them at their house in Amherst, but my father was still hooked up to all sorts of machinery and catheters until about two weeks ago, so they were understandably skittish about letting my three germ-infested, grabby, screaming, gooey nosed children into their sterile home.

Then last week my dad called. His doctors had put the kibosh on his attending Jo Jo’s fourth birthday party (too many potentially virus laden preschoolers running around) but he had otherwise been cleared to travel. How did I feel about their coming up to visit the following weekend?

Are you kidding?

We’ve been talking about it in our house for days.

When my parents first arrived this afternoon, it was a bit of a shock. The last time I saw my dad he was still basically in a hospital bed. Now he’s moving around and getting into and out of cars and bathrooms and all sorts of awkward places, all with the help of a cane. Also, my mother made him wear these really weird sunglasses (ala Stevie Wonder) because she worried his eyes might freak my kids out. The glasses lasted about all of five minutes, as all three children as soon as they sat on Pop Pop’s lap made a bee line for them.

Yes, it’s still strange to realize he’s blind. Yes, it’s surreal to talk to him and know that he’s looking at you but doesn’t see you. Yes, I choke up when Teddy says, “Read me a story Pop Pop” and I have to explain that Pop Pop can’t (and it’s not like a two year old can really comprehend that, anyway).

I think back to my childhood, when I was a little girl and my father seemed like the Rock of Gibraltar, and to see him in this new place, this vulnerable place, is sometimes just so hard.

But at the same time it’s so wonderful to know that he’s here, that he’s alive, that my children get to cuddle with him and get to know him and that some of his wisdom and his compassion is rubbing off on them.

They just don’t make men like my father anymore. They just….don’t.

We’ll miss my parents at Jo Jo’s birthday party next week. But we feel really lucky because my sister and her family (including my new nephew, Anders!) are driving up to be part of the festivities.

And we feel so, so fortunate to have spent the whole day with Nana and Pop Pop. They are probably the only two people in the universe who can sit for hours in a playroom pretending to sip tea with three puking, pooping grandchildren and think it’s great. Although they did wisely decide to stay at a hotel, so they can sleep in and not be awakened by the small stinkbombs yowling at 6 am on a Sunday morning.

We’re looking forward to bagels and lox with them tomorrow. And lots and lots of snuggles. And more of Nana’s delicious spaghetti and meatballs and brisket.

Here’s to the good times.