My father died a year ago today, the second day of Rosh Hashanah.
I dreamt about him earlier this morning. I was walking with Jo Jo in a parking lot towards our car, and as we approached I realized he was sitting in the left rear back seat, right behind the driver’s seat. It’s usually where Teddy sits, but instead of my four year old son bouncing up and down in his car seat there was my father, wearing his red checked short sleeved shirt and the trademark pen and paper in his front pocket.
Somehow the window was down and I reached through and grabbed his hand. He felt firm, his fingers so strong. I could see the freckles on his arms and the slivers of gray in his hair.
I know we talked for a few minutes, although I can’t remember what we said. He leaned forward and kissed me on the forehead. I could feel his warm breath and feel the cold metal of his glasses against my face.
And then I woke up and he was gone.
Teddy was lying next to me, his mouth slightly ajar, faintly snoring. He opened his eyes and we stared at each other for a second. “Meow!” he said solemnly.
Then, “is it morning yet?”
I fumbled around for my glasses and phone. 6:03 AM. “Teddy, it’s not morning time yet,” I said, and then stopped. A year ago I’d woken up around the same time to hear my four year old niece crying, and then a minute later we’d gotten a call. We knew who it was, of course, before my mother even picked up the phone. My sister, telling us my father had just passed away. At 6:03 AM.
“It’s morning, little one,” I said, and Teddy snuggled up against me and we lay back down. He’s been coming into my bed now. I’m not sure if he’s wandering in in the middle of the night or first thing in the morning—when I wake up, he’s there.
It’s been a long, hard year. I grieved my father but I also grieved so much more—the loss of my marriage, the loss of our home life as I’d known it. And I wanted my father around so much, for his quiet reassurances, for his stoicism as I tried to navigate myself down a path I wasn’t quite sure was right.
But although he’s not around physically now, I feel his presence more than ever. And as everything is basically imploding around me, I feel stronger, more confident, more sure of myself and the path I’m going down than ever before.
I know my father is with me. I know he supports the turns our lives have taken. As often as I wax on about how I see my father in my children, particularly Teddy, the truth is I see him in me too. I’m my father’s daughter, after all. I have his stubbornness, his perseverance, and, I’m finally beginning to realize, his moral coding.
It’s been three hours since that dream, but no matter how hard I try, I still can’t remember what he said to me. I can close my eyes and remember how he looked—his grin, the faint bristles on his cheeks and chin, the strength of his grip on mine—but I can’t bring back those words. It’s more a sensation, really, a feeling that he was there, and that I was safe.
And of course he’s not here anymore, but I can take the essence of what was there and apply it to my own life. He was always the safe parent. The one who navigated us through life’s never ending obstacles. The parent who stayed with me all night, even night, when I was eight years old and in the hospital for a week with croup, dozing on a hard backed chair as I lay in an oxygen tent because he knew I would sleep more soundly if he was there. The parent who fished my Harvard application out of the trash and told me if I really wanted to go there, I should apply, because he knew I was capable of achieving anything I set my mind out to do. The parent who looked at me steadily when I cried over my infant daughter and said, “She will be capable of many things, including a tremendous amount of love, which is all that matters.”
He’s gone, but the moral fiber of him remains. It’s in me. It’s in my children. It’s in my mother and my sister and my sister’s children.
I am so blessed to have had this man in my life, to have had the gift of him as my father for 39 years.
I know he’s with me still, giving me courage for the months to come, giving me the tools so that I can be the safe parent I need to be for my kids.
Thank you, Daddy, for everything.
Yesterday was Jo Jo’s first day of kindergarten.
I wasn’t sure how much she grasped, honestly. We’d been talking about it at home, and last weekend I made a big deal out of showing her her new book bag and her new lunch box and her new school supplies. She’d gone to camp over the summer, but she’d had one of her preschool aides, Ms. Rosie, with her. This was all so, so new to her. And I was excited, but still worried.
She was very quiet at breakfast. I watched her, fiddling with her pancakes, her hair neatly plaited into two French braids.
She looked apprehensive as we all piled into the minivan to take her to school, and once we got into the parking lot she promptly starting bawling.
“It’s okay baby” I kept saying over and over, rubbing my face in her hair. And as I did so I remembered my own first day of kindergarten.
It was a typical New England September day, warm but with just a faint hint of crispness in the air. Usually my mom took me to school, but given the enormity of the occasion my father insisted on taking me himself. I wore a red jumper embossed with three yellow flowers over a white blouse, black Mary Jane’s on my feet, grasping my father’s hand. I remember looking up at him, in his brown hounds tooth suit, trying to keep up with his gargantuan stride. His fingers curled around mine, I felt so safe. Like I could conquer anything, even kindergarten.
As we approached the building, we ran into another little girl and her father. She had two long brown pigtails and freckles on her nose and as our fathers talked to one another, we glanced at each other and giggled. She was wearing a white ruffled dress with red polka dots and I remember looking at that dress with envy. I remember thinking that this little girl was someone special, and that I wanted more than anything to be her friend.
We got to the classroom. My father kneeled down and looked at me solemnly. “You’re my big girl. No tears today, right?” he said. (I’d sobbed my way through two years of preschool.) Normally I would have grabbed onto his collar and held on for dear life, shrieking that I didn’t want him to leave. But today was different. Today, there was the girl in the white ruffled dress, who held all sorts of promises.
I nodded. “Sure,” I said, and then the girl in the white ruffled dress and I looked at each other and began giggling.
Her name was Melanie, and she was my best friend for the next three years. We drowned our Sea Wees mermaid dolls in bubble baths and held tea parties with my Sindy dolls and occasionally shoved our Strawberry Shortcake dolls in the fridge (always a big surprise for my dad when he opened it up for his orange juice at 6 am). When I was 8, we moved to Michigan, and we lost touch, but we reconnected in middle school and during college and even in our late 20s, when we both were living in New York.
I so want that for Jo Jo. If you were to ask me my one goal for her this year, I’d say, even before all those IEP goals like her being able to recognize and write the alphabet or know her letter sounds or count to 20, I’d say it was for her to find her first best friend.
She’s never really had that. Other little girls adore her—at camp this summer, she was basically the Katy Perry of Sara’s Superheroes crew and they all jockeyed to sit next to her at lunch or hold her hand during music class. But it’s not the same. She’s like a pet, a mascot, and while I’m so, so grateful that they embrace her, I want her to have a true friend. Another little girl to giggle with at sleepovers in her purple Princess bedroom or to play camp with in her pink Princess tent or dress up with the Barbies that are still in their containers in her bedroom closet because I don’t think she’s yet developmentally ready to play with them.
Her first day of kindergarten was glorious. I couldn’t have asked for anymore more: she’s in a mainstream classroom with her own aide, a loving teacher, and excellent therapists. She’s fully included, which is amazing—that didn’t really happen in Massachusetts in 1978, when I started school.
And I tell myself that somewhere, sitting among the 22 other kids in the class, is my daughter’s very own Melanie, someone to hold hands and giggle with as they stand in line for music class. If she’s not there, maybe she’s in the classroom over and they’ll bump into each other on the swings during recess. Or they’ll find each other when they’re both pulled out for small group reading instruction.
I have to tell myself this. Just as I have to tell myself that Jo Jo will learn to read and write and ride a bike and do all the things that sometimes seem so daunting and overwhelming.
But it’s the thing I wish most for for my daughter. A friend.
To my darling Teddy,
Today is a big day! Today you are four!
Boy, do I remember that morning when you were born! I was in labor for what felt like an eternity. In fact, I’d been pregnant for what seemed like forever. I was so sure you’d come early, like your sister (especially since the 32 week ultrasound showed you were already six pounds!) but you waited until the day before your due date to make your appearance. I just kept getting bigger and bigger and the summer kept getting hotter and hotter, until finally you decided maybe Mommy’s tummy was getting a little too cramped for you.
Then when you finally arrived—all 21 ½ inches, almost ten pounds of you—I’ll never forget the doctor picking you up and exclaiming, “He’s a moose! An absolute moose!”
Your birth was a little bittersweet. Your big sister’s birth had been so traumatic, given the fact that we found out that she had Down Syndrome and she was taken away from me immediately for surgery. But your birth was exactly the birth I had always imagined: being pushed in a wheelchair up to the maternity ward with a sleepy, content, greedily nursing baby in my arms. Instead of racing around the NICU, I got to snuggle in bed with you and eat sushi and watch really bad reality TV.
That being said, you weren’t the easiest little guy in the world. You’ve always had a mind of your own! Your second night, the nurses kicked you out of the nursery because you were bellowing like a large drunken frat boy and disturbing all the other babies. The only way I could get you to sleep was if you were latched onto my right boob. You stayed that way for about four months.
I remember marveling at all the things you could do so effortlessly. The way you flipped yourself over at five days old because you were so outraged that Mommy had dared to place you on your tummy. The way you looked up at me on the changing table at six weeks and gave me a huge, toothless, heart melting grin. The way you were a champion eater and could devour everything in sight, even with no teeth.
I think if I had had you first, I would have spent a lot of time obsessing over things like Ferberizing you and the color of your poop. But given everything I’d had to go through with Jo Jo, I didn’t have the energy to sweat the small stuff. Everything about you seemed miraculous and not to be taken for granted.
From an early age, you seemed to have such an intense bond with Jo Jo. When you took your first steps at 14 months, you tottered over to her. When you were 17 months, Jo Jo fell into the snow and you were so worried you raced over to her to help her get up. Even yesterday, at your birthday party, the one day it should have been all about you, you were concerned about your sister: when she got too hot and needed to go inside, you insisted on missing visiting the rest of the animals to stay right near her.
I used to worry that you were too protective of her, that you were shouldering too much responsibility at an age where you shouldn’t be having angst about anything other than Legos. But gradually I’ve realized that it’s okay, that it’s just part of who you are. You’re like a little man in a preschooler’s body, with your insistence on wearing ties and belts and taking a few minutes to hang back and survey new situations, rather than just jumping into the fray like the rest of your friends.
And you’re so much like your Pop Pop. I don’t like saying that too much, because I don’t want to make you into something you’re not, but everything about you: the way you stick your tongue out in concentration, the way you calmly and methodically attack a project until it’s done, the way you’re so solicitious of others and how they feel. When I went to your spring preschool conference your Morahs mentioned that a few days earlier, they’d been blown away by how well you sewed. They showed me a picture of you, forehead furrowed, mouth set in concentration, and I cried because you looked exactly how my father did and your small fingers seemed miniature replicas of his skilled surgeon hands.
Over the last few months, you’ve really come into your own. I watch you as you insist on picking out your own clothes and getting dressed and making your bed and cutting your grilled cheese with your own knife and riding your brand new bike with training wheels and marvel at how grown up you’ve become. You’re no longer a baby voiced chipmunk cheeked preschooler. Your face has thinned out and your gait is more forceful and you drop my hand as soon as we arrive at camp and walk away without so much as a backwards look.
It saddens me in some ways, that you’re growing up so fast, but then you come home in the afternoons and insist on crawling on my lap for a cuddle and I smell the sunscreen on your skin and the little boy sweat in your hair and I know you’re still my baby for a little while longer.
Happy birthday, Teddy Bear. I love you very, very much.
I haven’t blogged in a couple months. There’s been no real reason, other than the hectic transition of shifting kids from school routine to camp routine and finding ourselves spending afternoons splashing at the pool and running around the playground only to roll into bed just a little too late every night. But there have been big events going on in the Sklar household. Among the most memorable milestones:
Geoffrey turned two.
On May 16th, to be exact. And while I’m mortified I’ve waited so long to blog about it, in my defense it was pretty much a standard two year old birthday bash, complete with the requisite music, pizza and cake.
The big hit of the party? Geoffrey’s very own big boy Bigwheel, which he rode all around the house, careening into furniture and the dog with obvious pride. Ivry was fine (she’s got a lot of doggie fat to buffer here) but at one point G took a tumble (notice the bruiser).
Maybe because Geoffrey’s my third—and my last—I spend a lot of time marveling over his development. Somehow in the span of a few weeks he went from toddler to a two year old who speaks in full sentences (or somewhat full sentences), drinks from a big boy cup, and counts to ten. He loves Legos and riding Teddy’s old tricycle and taking off all his clothes and running around naked peeing all over the house like a drunken frat boy.
He started camp this summer, at the Gan, where Teddy also goes to school. The first week he was totally fine. Couldn’t have cared less when I left and screamed like a madman when I came to pick him up. The second week, it sunk into his little brain that this was a permanent gig. He shrieked and was inconsolable for hours, until I had to come get him. I could hear his wails echoing off the corridors, these plaintative “MaMa! Mama!”s and I had to remind myself that he wasn’t being tortured but was instead being encouraged to play in a very pricy twos program.
Finally my nanny suggested we get Night Night (his blankie) and the teachers jumped on the suggestion. A few minutes later, once Night Night was in his arms, he was totally fine. I watched him totter down the hallway, following the teacher, Night Night wrapped around his entire body like a little green cocoon, wondering if Night Night was going to accompany him to college in 16 years.
He’s going through his “No!” phase right now, but the thing is with Geoffrey, is that even when he’s defying you he’s just so damn cute. Teddy and Jo Jo used to scream “No!” and stamp their feet and holler. Geoffrey just looks at you, grins his mouth watering grin, and says “No” in his little lilting baby voice. No shrieking, no temper tantrums, just a simple, straightforward “no.” Which makes it that much harder to refuse him.
I hear “No” a lot at night. He has a new bedtime routine that lasts for hours. After I read books to Teddy and Jo Jo, I have to read to him—his doggie book (Bedtime Peekabo), Where is Baby’s Belly Button, Goodnight Moon, and Llama Llama. Then he has to have his wa wa. Then it’s time for rock rock—in the big kid’s room. Then it’s on to rock rock in Geoffrey’s room. Then I have to sing “C is for Cookie” about a zillion trillion times, substituting in family names for Cookie Monster. All the while he’s squealing and giggling and smiling at me with his eyes all crinkled up so I don’t have the heart to put him in his crib. Finally I say, “bedtime Geoffie” and he sighs, shakes his head, and says, “No Mommy. Not yet” and lays his head against my chest.
And I know it’s getting late and he’s long overdue for bedtime but at the same time he’s just so snuggly and smells so delicious from his bath I tell myself it’s okay to rock him for a bit longer. And we stay like that, sometimes for five minutes, sometimes for a half hour, until he starts to fall asleep.
Jo Jo graduated from preschool.
I can’t wrap my head around the fact that my eldest is entering kindergarten, but in so many ways, despite her myriad delays, I can tell my little girl is growing up. She looks older, for one: her delicious round tummy and blonde pigtails have given way to long willowy legs and big girl French braids. But over the last couple months she’s gradually started to come into her own. She’s beginning to recognize a few letters. She recites the Hebrew alphabet. She rocks a Ralph Lauren bikini. And most importantly, she has a joie de vivre, an ability to sing and dance her way through anything in a way that’s so infectious you can’t help but join in. My girl knows how to walk in a room and command all the attention. As her physical therapist said to me, “Jo Jo’s life is a Broadway play, and she’s the star.”
This year was another milestone of sorts: it’s Jo Jo’s first year at camp. We signed her up for the first two weeks and then for four weeks in the afternoon, after summer school. Even though she was going with one of her preschool aides, Ms. Rosie, I was still really nervous. I wasn’t sure how she’d react to camp. The days are long and hot and there’s a lot of walking and a lot of activities, all geared to typical peers. I wasn’t sure she’d be able to keep up. And I wasn’t sure how the other little girls were going to respond.
The first couple weeks were hard. Ms. Rosie mentioned to me a couple times that some of the little girls seemed to be really struggling to make sense of Jo Jo. They kept asking why she wouldn’t talk to them, or why she insisted on chewing on one of her therapy sticks or why she would suddenly impromptu stand up and start doing her own little Jo Jo dance during art class.
But gradually that seemed to change. Ms. Rosie reported that there were two or three little girls who wanted to eat lunch with Jo Jo or sit next to her in music. My friends mentioned to me that their daughters were coming home from camp talking about her, not wondering anymore why she had trouble keeping up with the group or needed help during activities but casually, as if she was one of the group. Like she belonged. And last Friday, when I went to pick her up, Ms. Rosie was beaming. “Jo Jo was the It girl today,” she told me and it turned out all the other girls had been clamoring for Jo Jo’s attention all day long.
I got teary eyed, not just because I know all this exposure to typical peers is great for Jo Jo, but because I know those girls will all benefit from befriending her, from learning how to celebrate her differences rather than to be fearful or mock them.
That’s why inclusion’s really a two way street.
Teddy’s morphed into a little man.
My eldest son has really come into his own this past year. We had a rocky start with preschool, but we moved him to a smaller school with a more child-centric curriculum and he flourished. Out of all my children, Teddy’s definitely the most angst ridden of the bunch. He’s not shy, per se, but definitely reserved: when he’s in a new situation he hangs back and sizes it up and it oftentimes takes him weeks before he jumps in. So I was surprised at how quickly he took to camp. My normally aqua-phobic little guy now isn’t afraid to dunk his head underwater or swim in the big pool or even pee standing up (something we’d been trying to get him to do for months.)
Most importantly, he has a girlfriend. Two, actually. One, Sarah, is his camp girlfriend, and one, Ana, is his pool club squeeze. They all go to camp together during the day, so I’m not sure how the dynamics of that work out, but the counselors haven’t informed me of any Jerry Springerish like moments, so I’m assuming it’s everyone going along to get along right now.
This past Friday, Sarah came over for a play date. Teddy was talking about if for days, and once he got home from camp he wanted to make sure there were plenty of snacks laid out for her and he insisted on dragging out all his favorite puzzles and games for her to enjoy. Sarah arrived a bit late, somewhat groggy and cranky from her nap, but soon revived thanks to all the veggie sticks and juice my son plied on her. They were soon engaged in a game of Sneaky Snacky Squirrel, and I was impressed at how tender Teddy was with her. “Take an acorn, Sarah,” he said helpfully, patting her on the shoulder and staring at her with love struck eyes.
That’s my son. The almost four year old eternal romantic.
Here’s to the good times.
My father would have been 70 years old today.
It’s so hard to write that. They say the first year is the most difficult, that every big event–that first Thanksgiving, that first Father’s Day, that first birthday—brings the pain back in a huge cold wave. I never thought he wouldn’t be here this May. I felt so strongly that he would go back into remission and we’d buy a few more years, that he’d be around to take the boys to their first Red Sox game and Johanna to her first performance of the Nutcracker.
And he’s not. And while part of me knows that at least he’s no longer suffering, I’m selfish enough to want him back with me. He was my touchstone, after all, and over the past few weeks, as I’ve grappled with some issues close to my heart, I feel that I need him more than ever. I need his quiet strength, his reassurance, his stoicism.
I still dream about him. Some nights he’s sitting on the leather ottoman chair in the family room, my three children tumbling around him. Teddy is showing him how he can spell his name on the I pad and Jo Jo is leaning on his arm, twirling her hands and singing, while Geoffrey bobs up and down on his lap like a two year old Jack in the Box. My father looks at me, beaming, and I know he is relishing the moment, soaking in the kinetic color palette of my children; the way Jo Jo’s pink glasses magnify her wide almond shaped hazel eyes, the light reflecting off of the white gold hair of my youngest son.
And some nights my dreams take the shape of just me and the kids, sitting in music class or sailing tricycles up and down our cul de sac. After a while I notice my father, standing silently in the door way or in the shadow of one of the trees on our front lawn, motionless but watching us all intensely.
He never speaks in these dreams. Ever. But I know he’s there and even though I can’t hear his voice or feel the weight of his arms around me I feel as safe and connected as I did when I was a very little girl, when he would walk into our house after a day of surgery and my sister and I would race down the stairs in our nightgowns and pink animal slippers, hurling ourselves at him and giggling.
But it still doesn’t change the fact that he’s gone, and that I miss him. Terribly. There are still times when one of the kids does something—Teddy asks something incredibly precocious, or Jo Jo achieves some milestone, or Geoffrey does something so devilish yet so cute it’s impossible not to laugh—when I want to call him, to tell him, only to remember he’s no longer here.
The day of my father’s funeral, I got a call from the office of Jo Jo’s ENT doctor. She was supposed to get ear tubes the following week, and her usual ENT surgeon wouldn’t be operating that day. But his new associate could do it. Sure, sure, I said, trying to get them off the phone, and then when I hung up I wondered if a brand new spanking young associate had any experience with the small delicate ear canals of kids with Down Syndrome. I need to ask Daddy, I thought, and then of course reality hit: but I can’t.
I started to cry. My aunt Carey, who’s also a physician, walked in. “What’s wrong?” she asked. I explained the situation. “I’d usually ask Daddy,” I said sheepishly.
She just looked at me. “Well, what do you think you should do?” she queried.
“I think I should call the office back and explain that since Jo Jo has Down Syndrome I’m really not comfortable with anyone else putting in her tubes,” I said instantly.
She nodded. “I think your instinct is right,” she said. “And I don’t think you needed your Dad to tell you that.”
She’s right, of course. But that doesn’t change the fact that there’s still that little girl in me, the one in her frilly lace nightie and pink slippers who wants to dive into her Daddy’s lap and huddle against him, basking in his security. When my father died, he left a huge void in all of our lives. But I’m finding my way. It’s slow and hesitant, and sometimes gruelingly painful, but I’m doing it.
At my father’s memorial, I told the story of how when I was six years old, I was terrified of riding a bike. My father used to take me out on the street and coax me to ride it, telling me he was holding onto the back of the seat and would not let go. We did this together, blissfully, for many weeks, until one day I saw my shadow and noticed he was no longer holding on.
I stopped so hard I fell over and started to cry. “Daddy, what are you doing?” I bawled. “You promised.”
He cradled me in his arms and kissed my head. “I haven’t been holding on for a long time now,” he told me, laughing. “But this was the first time you noticed.”
The way I see it, my father has let go of my metaphorical bike and moved on. He shows up in dreams, sometimes, to let me know he’s keeping an eye on things, but for the most part, I’m left, alone, wobbling somewhat but realizing I can do this on my own.
Thank you, daddy. Thank you for loving me, and my children. Thank you for teaching me how to ride, and for letting go when you did. Thank you for letting me think you were there for so long, when you were actually letting me ride on your own.
You are not gone. You live on in your grandchildren. I see your purity of heart, your innate sense of goodness, in Jo Jo. I see your astute mind, your problem solving, your inquisitiveness in Teddy. I see your stubbornness, your determination, your ultimate perseverance, in Geoffrey.
Happy birthday Daddy.
We toilet trained Teddy over February break. After months of him refusing to sit on the potty and give up his diapers, we finally did it by bribing him (cookies, TV, promises of camp).
The actual training was pretty quick. A day of peeing all over himself, and then it was over. He got it. He went on the potty, got his rewards, and that was that. It was so painless I was glad we’d waited and hadn’t pushed him.
But a few weeks ago, he started to relapse. First he had a couple pee accidents at school. Then one day my nanny walked into his classroom and saw him, sheepishly sitting in the corner eating his grilled cheese sandwich and smelling like a homeless guy who craps on himself on the subway.
It turns out he’d pooped in his underwear as he was eating his lunch.
It was pretty gross, for everyone involved, and Teddy was embarrassed enough about it not to do it again—at least, not in public. But at home, it was a completely different story. He started refusing to go on the potty again, or he’d go into the bathroom, kick me out, and then saunter out a few minutes later claimed he’d peed and demanding an Oreo (it took a few days of this before I caught on to the fact that I was being bamboozled by a 3 ½ year old.)
And there were accidents. Many accidents. Big, poopy accidents, after which he’d race up to me and screech at the top of his lungs, “Mooom! Change me!!!!”
“Teddy,” I would say to him in exasperation, “you can’t do this at camp over the summer. They’ll send you home.” I figured that would have to get to him. He can’t stop babbling about camp.
He rolled his eyes.
“It’s only March, mommy,” he said incredulously, as if he were dealing with the village idiot.
“So?” I asked, genuinely confused.
“Camp’s not until June,” he said, clearly disgusted by my cluelessness. “That’s three months away. It’s no big deal if I have accidents up until then.”
He got me there. My brain’s been dulled by years of anti depressants and pregnancy hormones and there’s no way I’m a match for my son.
Then last week, I met with Jo Jo’s educational consultant to discuss, among other things, Jo Jo’s potty training. Unlike Teddy, my daughter is great about sitting on the potty and actually doing something on it, but she won’t indicate when she has to go, and, unlike my son, doesn’t seem to care if she’s sitting in damp underwear. Needless to say, we’ve been still having our share of accidents, and needless to say, I was at a loss.
The consultant and I brainstormed—she had some good ideas—and as she was leaving, I said, almost as an afterthought, “I’m having some issues with Teddy. Do you have a moment?”
“Sure,” she said, and I told her what was going on.
“He’s a super bright little boy,” she said when I had finished. “Do you think he sees Jo Jo still having accidents and figures it’s no big deal if he also has them?”
“What you need to do is not make it so easy for him,” she said, and then basically told me the next time he crapped all over himself to make him clean it up himself.
So a few days ago, that’s exactly what I did. Teddy came up to me after lunch smelling like a wino, handed me a clean pair of underwear and pants, smiled sweetly, and said, “change me, Mommy.”
“Pee or poop?” I asked, although I could clearly sniff the evidence.
“Poopie,” he said solemnly.
“Oh, I’m sorry,” I said in my nice Mommy voice. “Mommy doesn’t change poopy underwear anymore. Please go into the bathroom and do it yourself.”
He stared at me, totally incredulous. “Change me,” my little Jewish prince demanded.
“Oh no,” I said. “You’re such a big boy you can do it yourself.”
Let’s just say the s—t hit the fan. Teddy began bellowing like a wounded bull and eventually I ended up in the bathroom with an irate preschooler.
“I don’t want to touch the poopy, mommy!” he wailed, tears streaming down his face. “It’s yucky!”
“So what makes you think I want to touch it?” I asked, simply wondering.
“Wipe my tushie, Mommy!” he screeched at the top of his lungs, his face red with indignity. “Wipe my tushie, now!”
Then he stopped and stared at me. “This isn’t fair,” he said abruptly, changing tactics. “You don’t make Jo Jo change herself when she has accidents.”
Whether he was trying to manipulate me or was simply stating the obvious, Teddy was right. And it really got to me.
“You’re right,” I said, sighing, as I helped him get his underwear off. “I don’t.”
He stared at me balefully, crossing his arms. “She even still wears a pull up sometimes when we go out,” he remarked.
Yup, she did. Sometimes if she hadn’t peed in a while and I knew we’d be out running errands, I’d slip a pull up over her underwear in case she had the inevitable accident.
I didn’t know what to say. I still wasn’t really sure how much Teddy had really figured out about Jo Jo. We’ve never really talked about the fact that she has Down Syndrome. It’s not that we’re avoiding it, it’s just that it simply hasn’t come up. He’s never asked why it takes her longer to do things, why she still has trouble riding her tricycle while he cruises up and down our street effortlessly, or why he can recognize all his letters and knows all the letter sounds while she can’t even recognize her name.
“Teddy,” I said hesitantly, “It’s harder for Jo Jo to do things sometimes. It just takes her a little longer. Jo Jo sometimes can’t control that she has accidents. But Teddy, I know you can control your accidents and that’s why I expect more of you.”
He just looked at me. I couldn’t tell what he was thinking. “Will Jo Jo be able to go to camp this summer if she still has accidents?” he asked.
“Jo Jo is going to have someone with her all the time to take her to the bathroom and make sure she doesn’t,” I told him.
He nodded sagely. “Good,” he said. “I want her to go to camp with me.” Then, “this wasn’t so fun, Mommy. Maybe next time I’ll poop in the toilet.”
And since then, he has.
I wanted to say more to his son, but he’s still too little to understand. He’s right. It’s not fair. It’s not fair that Jo Jo has such low muscle tone she can’t always control when she has to go. It’s not fair that she doesn’t have the expressive language to convey all the thoughts my middle son articulates so effortlessly. It’s not fair that she loves books but it will most likely take years for her to learn to read. It’s not fair that she has a twentyfold risk of developing leukemia compared to other, typical kids her age, or that she’ll inevitably develop Alzheimer’s, most likely by the time she’s in her 40s.
I could go on and on, but at the end of the day, it’s not fair that she has 3 copies of her 21st chromosome, while he has only two.
He might not grasp that concept now, but eventually, I know he will.
Something is very rotten in the state of Maryland.
This past January, Robert Ethan Saylor, a 26 year old man with Down Syndrome, was killed by three off-duty county sheriff’s deputies at a movie theater in Frederick County. And it seems that no one—the Frederick County Sheriff’s office, the US Department of Justice, even national Down Syndrome advocacy groups—are doing much more than batting an eye.
Six days ago, a grand jury decided not to bring criminal charges against the three deputies, even though the investigation was handled by the same sheriff’s office that employs them (a blatant conflict of interest, in case you haven’t figured this out).
Here’s a synopsis of the case: Mr. Saylor and his aide watched the movie “Zero Dark Thirty.” She went to get the car, leaving him alone for a few minutes. A theater employee went up to Saylor and asked him to leave. He refused. The employee then called the off-duty officers, who were moonlighting as mall security. Apparently Saylor resisted, and the deputies decided he was such a security threat that they handcuffed him with three sets of handcuffs on his stomach on the ground. He went into distress and died (but not before crying out for his mother beforehand.). The medical examiner ruled it a homicide by asphyxiation.
It’s one of those things you’d expect to hear happening 50 years ago, back when folks with Down Syndrome were shunted off to institutions. Saylor had no history of violence—family and friends recall him as a warm friendly person, although he reportedly had a history of anger issues when he was confronted or touched.
But please. Is a 26 year old with Down Syndrome such a menace to society that he requires three strapping police officers to physically tackle him and hold him down? Couldn’t they have, um, waited, oh, three minutes for the aide to come back and discussed with her the best way to handle the situation? Would it have been such a crime to let him sit through a few minutes of the second movie?
The whole thing is just outrageous. And it’s even more outrageous that some of these so-called national advocacy groups walked out of a two hour meeting with the US Justice Department with only a semi-lukewarm agreement to roll out a formal web-based training program in dealing with people with disabilities for law enforcement and first responders . (One of the press releases notes “there will be challenges in implementing a nationwide program to reach 18,000 plus law enforcement agencies across the country…funding issues could create hurdles…we will be competing for training time with many other worthy topics.”)
To which I say…
NO S—T, SHERLOCK. THAT IS WHY IT’S CALLED ADVOCACY. BECAUSE YOU NEED TO GET IN THE FACE OF PEOPLE AGAIN AND AGAIN SINCE IT’S HIGHLY LIKELY THEY WILL NOT HEAR—OR PRETEND NOT TO HEAR—YOU THE FIRST TIME. AND IF THEY TELL YOU THERE’S NOT ENOUGH TIME OR MONEY OR RESOURCES YOU DON’T TAKE THEIR BS EXCUSES BUT YOU COME BACK AT THEM AGAIN AND AGAIN AND AGAIN UNTIL YOU GET WHAT YOU WANT.
Jeez. You’d think these people never sat through an IEP meeting.
I was in Washington DC a few weeks ago for the Buddy Walk on Washington, where I met with congressional reps and Senators to advocate on behalf of Jo Jo and other people with Down Syndrome. I returned from that trip feeling pumped up, feeling like I had spent 36 hours really fighting for Jo Jo and making a difference in her future.
But now…now I feel sick, and nauseous, as if I’d just OD’d on a whole movie sized version of Sour Patch Kids.
There is something you can do. Follow the link below, and sign this petition demanding an outside investigation into the death of Saylor.
I don’t think Saylor died because three valiant police officers were trying to protect the community and themselves from an imminent threat. I think they saw an almost 300 pound man with Down Syndrome and were revolted. They didn’t want to touch him, they didn’t want to be near him, and they were angry. So they killed him. Probably not intentionally, but there’s no doubt in my mind they used way more force than intended because in their minds, his life wasn’t a life worth preserving. Kind of like how you squash a spider in your kitchen under your shoe. You could just safely deposit it outdoors, but that’s so inconvenient when just stomping down is so much faster.
And that could be Jo Jo one day. Now, she’s sylphlike and dainty, a little blonde doll and police officers and security guards everywhere smile at her when she walks by. I want to always keep her that way, to make sure the whole world views her in that same prism of perfection. But still…I could see my daughter 20 years from now in that exact same scenario. Not understanding why she can’t sit through some chick flick twice. Yelling and swatting at the security guard who comes to try to move her. And although my money is on Jo Jo when it comes to surviving a skirmish with three boneheaded police officers, I don’t want to take that chance. She means way too much for me.
So please, sign this petition. For me. For Jo Jo. For parents of kids with disabilities everywhere.
Thank you, all, for reading–and listening.
Jo Jo turned five last Wednesday.
We actually celebrated a couple weeks ago, during February break, with a Mommy and Daughter trip to the American Girl store in Manhattan. Which is something I’d been planning for, well, ever since the 18 week ultrasound when I learned I was pregnant with a little girl.
We started off with a birthday lunch in the American Girl café. She sat wide-eyed next to her mini Jo Jo doll (notice the matching pigtails!) and just took the room in. We were surrounded by other little girls and their moms, feasting on miniature hamburgers and mini hot dogs. (There was one dad next to us who sat frozen at the table with his wife and daughters, eying the dolls as if they were all Brides of Chucky. He was only way too happy to leap up and take our pictures.)
I think Jo Jo was a little overwhelmed and excited—she didn’t really touch her food—but every time the staff came out with a birthday cake to serenade someone she clapped her hands and sang along as well. The moms at the tables near us kept looking over at us smiling, murmuring “she’s adorable” and I sat there in my mommy stretch pants kvelling over the compliments.
After lunch we picked out the dolls together, the Bitty Twins. I showed her the box I wanted—a little blonde girl and her brunette brother—and she pointed and said simply, “Jo Jo and Teddy.”
So there you have it. Big Jo Jo and Big Teddy now have their own little mini mes. Along with all the assorted paraphernalia—a trundle bed, various sporty outfits (including a biking set and PJs) and, best of all, their own dolly potty.
You try schlepping 20 zillion pounds of doll crap across Manhattan—it’s not easy. But we did it. And when we got home, Teddy was thrilled with his doppelganger.
Then, this past Sunday, she had her 5th birthday party at Stepping Stones museum. Where a great time was had by all, especially Geoffrey.
I’m always a bit apprehensive when it comes to Jo Jo and her birthday. The day she was born was both the best day of my life and the worst. I’m still a little bitter that we had to deal with the shock of her diagnosis on that day, and all the accompanying stress that went with it (including her having to ride in a baby ambulance the next day for surgery). I felt cheated that my first birth experience—which is supposed to be some sort of hormonal Nirvana—was actually such a traumatic mess.
But at the same time I can look back at that day and laugh about how scared we were, and how misguided and uninformed we really were.
I can say with all honesty that I love Johanna more and more each day, and oftentimes when I look at her—her silky, flaxen blonde hair, her delicate, cat shaped hazel eyes, her little button of a nose, her rosebud lips—I am blown away by how gorgeous she is.
She’s my fairy princess daughter, my Johanna.
Today I did the one mistake I always vowed I’d never do as a mother: I accidentally locked my kids in the car.
I had just picked Jo Jo up from preschool and we had about 45 minutes to kill before getting Teddy. I figured I’d treat Jo Jo and Geoffrey to pizza just a few blocks away from Teddy’s school. “Pizza!” I sang as we drove along High Ridge. “Pizza! Pizza!” my soon-to-be five year old and my 21 month old chanted, bouncing happily up and down in their car seats in response.
I pulled into the parking lot, turned off the ignition, got out of the car, and slammed the door. As I was about to open the door to unstrap the kiddos, I heard a click, then saw the locks on the car dart down like little worms ducking into holes. But it didn’t quite register to me what was happening until I started pulling on the door, only to realize it was locked shut.
That’s strange, I thought, staring at the door, somewhat confused. We’d had this rental car for almost two weeks and I’d never seen it lock itself before.
Then I realized that without even thinking about it, I’d tossed the car keys into the diaper bag sitting on the passenger side of the front seat as I climbed out of the car.
I just stood there, totally stunned, for a moment. Then like a crazed Mommy rabbit I darted over to the other side of the car and tried rattling that door. It refused to open. Jo Jo and Geoffrey were just looking at me, obviously perplexed at what Mommy was doing banging her hands against the sides of the car. Geoffrey’s brow was completely furrowed and his head was tilted to the right, the way he does when his little toddler brain is having a “deep thought” moment. “Pizza,” I watched him mouth to me.
“Oh my god oh my god oh my god” I chanted to myself as I raced into the restaurant.
“Please help me!” I shouted at the waitress as I ran in. “I locked my kids in the car!”
The woman, an aged-looking blonde with smokers’ lines around her mouth, shrugged her shoulders. “What do you want me to do?”
I just gaped at her. “My kids are 4 and 1,” I told her. “I locked my cell phone in my car. Please help me.”
“Don’t worry, we’ll call 911,” I heard someone shout. “We’re on it!”
I nodded and raced back outside. The kids were still sitting patiently in their car seats with the same quizzical, slightly bemused expressions on their faces. Geoffrey saw me and began bouncing up and down in his car seat again. “Mama!” I heard him chirp happily. “Mama!”
“Don’t worry, they’ll be fine,” I heard a voice say, and I turned to see that two of the men in the restaurant had come outside to check on us. “We called 911. Do you want to use my phone to call your husband?”
“Thank you thank you thank you,” I started blubbering. “This is a rental car and I didn’t realize it locked automatically like that.”
“No worries,” he shrugged. “My wife used to do this all the time.”
I called Jamie. “The emergency key’s under the passenger rear bumper,” he told me.
That made no sense to me. “Are you sure?” I asked.
“I’m sure,” he said. “I put it there myself.”
I handed the phone back to my new male friend, got down on my stomach and started slithering underneath the car. “My husband thinks there’s a key under here,” I told the two men, who were staring at me like I had sprouted a third boob right in the middle of my forehead.
“A key under the rental car?” one of the guys asked. “I’ve never heard of that before.” They watched me wiggle around the car for a while. “Don’t touch the exhaust pipe!” the older one yelled. “You might burn yourself.” Then I heard him say, “yeah, she’s underneath the rental car. Ohhh!” and then, “your husband forgot you were driving the rental. You can come on out now.”
I groaned, and then to make things even worse as I was maneuvering my way out my pony tail got caught in the exhaust pipe. “I’m stuck!” I yelped and as one of the men leaped down to untangle me I thought to myself, “why does this random crazy shit always happen to me?”
And then when I emerged from the bowels of the rental car, I saw the firetruck, sirens blaring, lights blazing, headed straight towards us. Five firefighters tumbled out, all here to save me, the desperate, slight sweaty, now covered in grime suburban housewife.
“Tools!” one of them yelled and before I knew it all five of them were on either side of the car with all sorts of pump wedges and tool rods. Geoffrey was going crazy, squealing and clawing at his car seat straps in an effort to climb out and I started to panic and then I realized why: it was his first time ever seeing real live firemen.
Within about three minutes, the car was open, and my kids were freed.
“Thank you thank you thank you!” I babbled again, and then I started to explain myself and they brushed me away with a “no worries, we see it all the time!” I clutched a squirming Geoffrey in my arms, who was babbling and blowing kisses and screaming “aaai!” as if he were backstage at a Rolling Stones concert.
I got it. These fire men were my heros, too.
I was a little sheepish walking into the restaurant, but when the three of us made our entrance everyone stood up and cheered. “I’ve totally been there, little kids, locked car, the whole deal,”one woman told me sympathetically.
As I watched my kids devour their pizza, I could feel myself relaxing as the stress hormones slowly drained from my body. I feel like these days I’m constantly in some sort of fight or flight response, between hurricanes and car accidents and just the random craziness that life always seems to throw my way.
But it’s always heartening to see how others can come through in times of crisis (or in this case, semi crisis). Even though I’d clearly done a stupid scatter brained thing, no one called me out on it.
And I have just one caveat for our new car (our Sienna was totaled, BTW).
No automatically locking doors.