Posted by: Hallie Levine | April 8, 2013

It’s Not Fair

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?”

I nodded.

“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.


Posted by: Hallie Levine | March 29, 2013

Sign this for Jo Jo

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…


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, looking appropriately horrified at this whole nasty situation.


Posted by: Hallie Levine | March 6, 2013

A Party Fit for a Princess

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.




ImageWe tried to get a group photo of all three of our small progeny, but Jo Jo and Teddy took off, leaving behind a perplexed Geoffrey, who smiled gamely at the camera for his photo op.



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.



Posted by: Hallie Levine | February 27, 2013

Scatter Brained

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.


Posted by: Hallie Levine | February 15, 2013

When Worlds Collide

Yesterday Jo Jo and I ended up in a major car accident.

It was around 3:15, and I had just picked Jo Jo up from pre-school. She’d resisted letting me buckle her into her car seat, and while I’d managed to fasten her lap belt she kept wiggling out of her shoulder straps, shouting “No No No!” She was so adamant Imageand fighting me so hard that for a moment I debated just letting her ride home with her arms out—it was only a few miles, after all, and maybe not worth all this hassle. But for some reason I had this weird nagging sensation she should be securely strapped in. So I tightened her shoulder straps even more—much to her chagrin—and drove off.

We were driving north down Long Ridge when all of a sudden I saw a Jeep that was driving south start careening straight towards us. This can’t be happening I thought as I instinctively got into the right lane. Then the next few moments happened at lightning speed. The other car hit my back rear driver’s side with an ear splitting thump and then sped away. I felt the Sienna lurch forwards, and watched as we smashed against the guard rail on the right side of the street. Then our van turned and spun right into oncoming traffic.

I was panicking. The smell of smoke was all around me. I hit the brake, and then realized that was absolutely the wrong thing to do. Was I supposed to steer into the spin? Steer away? Cars were coming towards us. I tried moving the steering wheel, which didn’t seem to be working. I saw Jo Jo in the rear view mirror, frantically flapping her arms, wide-eyed. The car was slowing down, but I couldn’t get it to stop.

Then all of a sudden I smelled a scent I’d known from childhood: a combo of Dove soap and Downy fabric softener. It was the smell of my dad in his last couple years of life, when he wasn’t working anymore and had given up his suits for his khakis and wool sweaters. I heard his voice, calm, gentle, reassuring: “put the car in park.”

I did it without thinking, and the car jerked forward and then ground to a complete halt. I blinked. We were right in the middle of the road, facing south. The scent was gone, replaced by the acrid odor of burning metal. Smoke was pouring out of the steering wheel. I stared at a sorry mess of yellowish fabric coming out of it and realized it was my airbag, now deflated.

I don’t remember much of what happened next. I know I got out of the car, legs trembling, feeling as battered and drained as when I’d ran my first marathon. A few people stopped their cars to check on us; someone called 911. I checked Jo Jo, who seemed unharmed, “whoa,” she said to me, shaking her head. “Whoa”. The paramedics came. The police came. The other driver—a woman in her 70s—had apparently kept driving on the wrong side of the road until her tire blew out and she was forced to pull over. She insisted I’d swerved into her. The police kept demanding my version. Meanwhile my husband showed up, racing down Long Ridge Road at about 100 miles an hour. I saw him pull up, saw the police freak out and order him to move his car, at which point he jumped out and shouted, “I’m not doing anything until I’ve checked on my wife and daughter!” He ran up to me and hugged me, and when I felt him trembling and the moistness of his shirt I realized yet again what a close call we’d had.

Ultimately, the police agreed that my story checked out—given the location of the damage on both cars, and where the skid marks on the road were, there was no possible explanation other than she’d driven straight into my lane. While we were both shaken up, it was clear that Jo Jo and I had emerged unscathed. The minivan, however, was totaled. A tow truck came to take it away. As we unstrapped car seats and removed registration info from our Sienna, I started shaking again. The paramedic came over. “Are you sure you’re okay?” he asked.

“Yes,” I said, then added once again what I’d been repeating over and over for the last hour, “we could have died.”

“You’re lucky,” he said gently, and then, “someone was looking out for you.”

I nodded. “Yes,” I said. “Someone was.”

And that was it. We got in the car and drove home. The other driver, as far as I know, is fine. She also didn’t suffer any injuries. I’m not sure if she ever changed her story, if she was actually fleeing the accident scene, why she swerved into oncoming traffic, right into my lane. We’ll see the police report next week, which hopefully will help sort some of these mysteries out.

I’ve always been agnostic. I’m skeptical what I thought happened in the car during the spin really happened. The rational part of me says that my subconscious mind conjured my father up, as a way to cope during an incredibly stressful, life-threatening situation.  I don’t want to become the almost-40 year old fruitcake obsessed with visitations from her Dear Departed Dad.

But for a moment, I did feel like he was in the car with me, and I felt secure, and I felt his strength.  And I was able to do what I needed to do to stop the Sienna and get my daughter and me to safety.

And I guess ultimately that’s all that matters.

Posted by: Hallie Levine | February 8, 2013

Moving On

I haven’t blogged in a long, long time.

 After my father passed away, there were weeks of struggling to return to normal. Trying to reconnect with my kids, who were also in their own little ways grappling with Pop Pop’s death. Playing mad catch up at work. Then just when it seemed we were moving gradually back into a routine, the hurricane hit, then the Newtown shooting, and it just seemed like our lives would never return to normal. There would always be a Nor’easter, or an Adam Lanza lurking around the corner, to keep us in a perpetual state of anxiety.

 And through it all, I missed my father so, so much. I tried to keep it together in front of my babies, but every time I got into my car or closed the door to my office my face was bathed with tears.

 We went up to Canada over Christmas, to spend some time with my in-laws. While Jo Jo wasn’t so into the snow, Teddy loved it. My normally introverted, bookwormish son wanted to be outside building snow forts and chasing the dog around. One day, Jamie took him skiing. It was too cold for Geoffrey and Jo Jo, so we three stayed inside the ski hill’s play area. There were big glass windows that looked out on the hill and I could just make out Teddy’s green jacket and little green monster hat as he gingerly slid down the gentle slope right by the chair lift. It was his first time on skis and he was doing so, so amazingly well. Daddy, I thought as I watched my small son maneuver his skis, I wish so badly you could see this. The tears came yet again, and if it weren’t for the fact that another French Canadian toddler began beating up Geoffrey while yapping away like Pepe Le Pew I would have had a total meltdown.

 That night, I lay in bed, listening to the sound of my husband’s snoring, missing my father so much it hurt. I kept thinking about one of the last times I’d visited before he was in the hospital. I’d had a work deadline and spent most of my time on the phone doing back to back interviews. I’d felt guilty, but I’d figured there would be plenty more time for leisurely visits over the next few months. After all, he’d go into remission, which would buy him a couple more years.

 I’d never, ever expected what had happened to happen. And staring up at the ceiling, I just wished I had blown off my assignments for just one afternoon to sit and reminisce with him.

 Then I fell asleep. I don’t often recall dreams, but this one was particularly vivid: Jamie and I were standing in the yard of a large farmhouse. We were surrounded by cherry trees and Virgina bluebells and there were five or six golden retrievers bouncing around. Ivry sat a few feet away, happily chewing on a twig. “Daddy would love this place,” I thought, and then suddenly I was inside the house, in a bedroom, and there was a knock on the door.

 I opened it and there, smiling faintly, was my father. He was wearing his beige Samuelson sport coat and the blue silk tie with anchors on it I’d given him for one of his forty something birthdays. He looked like his old self, before the myeloma returned, thinner and grayer but relaxed.

 “Daddy is that you?” I asked, and he nodded. I reached out to hug him, and he embraced me. He felt solid and strong, like the man I remembered. “I can feel you?” I said in wonderment, and he nodded again. Then he turned and began to walk away.

 I stood there, stunned. I couldn’t believe that my father had appeared to me and was just going to walk away like nothing unusual had happened. “Daddy!” I shrieked, racing down the hallway, and then I noticed I was wearing one of my white cotton nighties from high school. How’d that happen? I wondered, but I continued in hot pursuit of my father, shrieking, “Daddy, come back here now!”

 My father stopped at the front door of the house, turned, and literally blanched at the sight of his overweight middle aged daughter lurching towards him in a lacey little girl nightgown that barely grazed her knees.

 “Hallie,” he said sternly, “stop.”

 I halted, right in front of him.

 “Little one,” he said, and his voice propelled me backwards 30 years, “you have got to let me go.”

 “Well wait a minute,” I said. “I want to know where you are. Are you in heaven? Do you like it? Will we see you again?”

 “Yes,” he said evenly. 

 “Yes to which question?” I challenged him.

 He didn’t answer.

 “Are you going to be reincarnated?” I blurted out.

 He rolled his eyes. “Hallie, I don’t know,” he said, exacerbated and he sounded so exactly like himself I started blubbering.

 “I’m a journalist,” I said. “You had to know that if you came back I’d bombard you with questions.”

 He smiled. “I promise you, we’ll all be together again very soon. But little one,” and his voice was so gentle, “you need to move on. Please.”

 And then he was gone. But before I had time to react the dream changed and I suddenly found myself at a dinner party in the season finale of Gossip Girl. Miraculously, somehow I was 20 pounds thinner and wearing one of my pre-pregnancy Diane Von Furstenberg wrap dresses.

 When I woke up, my head was throbbing. I felt dazed. I crept downstairs, got my migraine meds, and crawled back into bed. I woke up an hour later to the smell of chocolate chip pancakes and the sound of squealing children. Delicious scents, happy noises…was this really my home? I wondered.

 Jamie walked into the room with a cup of coffee. “How are you feeling?” he asked solicitously.

 I stared at him. My husband bringing me coffee in bed unprompted with no snide comments about sleeping in? I knew my father must have some sort of a role in this.

 I told him about the dream. “He was so vague,” I said. “Why didn’t he want to tell me anything?”

 Jamie snorted. “Because he knows you’d go and write a blog about it,” he said. “I don’t think they can just visit after death and tell you what goes on. There must be rules.”

 He’s probably right about that.

 I don’t know what happened with that dream, if it really was my father reaching out to comfort me, or my mind conjuring him up in an effort to heal. But I do know that since then, the grief has abated. I can look at pictures of my dad with my children without feeling like I’ve been stabbed in the chest. I can watch Teddy concentrating on drawing with his tongue in between his teeth—a quintessential mannerism of my father–and not burst into tears.

 And I feel different. Stronger, more confident. Nothing seems to faze me anymore, whether it was the decision to switch Teddy’s pre school mid year or tackling Jo Jo’s last IEP meeting. I remember always looking at my father and marveling at how stoic he was, how he always seemed to radiate strength and how secure I felt when he was around.

 Now it seems that strength is in me. “He’ll be with you all the time,” one friend who lost her mom about three years ago told me soon after my father’s death. I didn’t believe her, but now I realize she was right.

 And whether he’s really up in Heaven or swirling around some spiritual cyberspace, it’s pretty clear my dad’s moved on. Maybe he’s busy attending Board meetings with the rest of the Machers, or maybe he spends his days doing Civil War re-enactments with General Robert Lee.

 But I know that every so often he’ll also stop what he’s doing to check in. He’ll be there when Jo Jo reads her first word, or when the boys have their bar mitzvahs, and to kvell over them at their weddings.

 I’m glad he’s moved on. I’m glad he’s no longer in pain. And I know now, as trite as it sounds, that part of him lives on, not only in my kids but also in me.  Image


Posted by: Hallie Levine | October 10, 2012


Tonight, I was sitting in the family room having a cozy moment with all three kids. Geoffrey was intently putting coins into his toy piggy bank, Jo Jo was prancing around the room singing and waving two drum sticks, and I was helping Teddy dress Jo Jo’s magnetic paper dolls.

I was trying to convince my eldest son to outfit the dolls in something other than what he usually insists they wear—a mustard yellow shirt and brown pants—when I heard squealing. I looked up to see Geoffrey wailing as Jo Jo banged him on the head.

“No, Jo Jo, no no!” I said sternly, and put her on the stairs for a time out.

She immediately started sobbing, these gut-wrenching cries that always tug at my heart strings, but I steeled myself. We’ve been really, really strict about correcting her misbehaviors. “Three minutes,” I told her, and walked back into the playroom.

“Here, Geoffrey,” I said, giving him back his pink pig.

He dropped it, completely uninterested. He had stopped bawling and was instead staring intensely at the stairs, his forehead furrowed. “Jo Jo?” he asked curiously, and suddenly he picked up the drumsticks she’d been holding and toddled over to her.

“Here,” he said in his little baby voice, cocking his head. She ignored him, flapping her arms and hysterically mewling, but he persisted. “Jo Jo,” he repeated, more forcefully, and presented the sticks to her again. This time she snuffled and took them, and he chortled with delight. “Mwah,” he said, leaning forward to give her a kiss, and she acquiesced, throwing her arms around him. “Mwah,” he said again, and then toddled away, back to his piggy bank.

I watched him, stunned. It brought back memories of a similar incident that happened with Teddy when he was pretty much the same age as Geoffrey, I’d always assumed the love and compassion my middle child had for his older sister couldn’t be replicated, that my youngest wouldn’t ever be able to match that.

Today, Geoffrey proved me wrong, so wrong.  Sure, he’s taken a protective interest in her before—bringing her her pink glasses when she throws them off, finding one of her shoes and proudly presenting it to her. But today, the fact that he was sensitive enough to pick up on her distress and actively reassure her—that was truly something else. He’d ironically had his annual Birth to Three assessment that morning, where his team went through a whole checklist to make sure he was developmentally where he needed to be. We were going through interpersonal skills, checking off one skill after another that he’d already mastered, when the coordinator asked “tries to comfort others in distress.”

I thought for a moment. “Not really,” I admitted.

She laughed. “That’s totally fine—that’s actually a 24 month skill,” she showed me. “He’s way ahead of the curve as is.”

But watching him, as he fiddled with the coins in his piggy bank while anxiously stealing looks at Jo Jo, I realized I had set my expectations way too low.

“Geoffie, come here,” I said, and he happily ambled over. I buried my face in his little cap of white gold hair and cried. I thought all my tears had dried out after the last few weeks; I thought I was numb, pretty much wiped out of any emotion, but again, another aspect of my life where I was just so wrong.

All I know is that my father would be proud, so proud of his almost 17 month old grandson. And as much as I still miss my father, as much as it hurts to wake up in the morning to realize he’s no longer around, or to want to call him on the phone to tell him something and then realize with a sharp, searing pang that he’s no longer there, I get so much comfort in the fact that part of him will always be with me, in my two little boys.

I am certain that they will both grow up to be as compassionate, as gentle, and as kind as their Pop Pop was. And like him, they will strive to make the world a better place.

Posted by: Hallie Levine | September 20, 2012


We will sit shiva for my father all day on Monday, Sept. 24th, at the Sklar home, 52 Indian Rock Road, Stamford, CT. A minyan will be held at 7:30 pm.

In honor of my father’s memory, donations may be made to the Dana Farber Cancer Institute, Multiple Myeloma Research, at

Thank you everyone, for all the support. I am always in awe of the kindness of others, whether it comes from close childhood friends or strangers I have never met.


Posted by: Hallie Levine | September 18, 2012


My father passed away early this morning.

My sister was with him. She and I had been taking turns staying with him at night. He went peacefully. He had been mostly unconscious for the last few days, although he seemed to come out of it a bit Friday night. I was with him then and was able to say all that I wanted to say to him then. He was not able to talk but he kept reaching for and squeezing my hand, and I know that he understood.

It was so hard watching him die, but I also know now that he was slowly dying for a long time. We had interpreted his withdrawal, his loss of interest, his fatigue, as a side effect of the chemo and as depression. But now I realize it wasn’t. It was him preparing to say goodbye. At the end, he took things into his own hands. He didn’t want this slow, painful, drawn out process, so he started refusing food and fluids once he got into hospice. I think the one aspect of his illness that frustrated him the most was his lack of control. He’s a former surgeon, after all. He’s used to being in charge. And he had it, at the end, what he wanted. A death with dignity.

It hurts. It hurts so damn much. The grief feels so paralyzing and so overwhelming and the air feels so heavy around me it is a struggle to breathe. I sent the kids home with Jamie on Saturday because I felt it was the right thing to do. I didn’t want them to see my father deteriorating and I didn’t want them to see my constant tears. They will be back tomorrow and we will be back together as a family. I need to be strong for them but today I can grieve so I can get on the path to healing. I know that is what my father would want.

My father’s funeral will be on Thursday, in Amherst, and we will sit shiva for him through the weekend. On Monday, my whole family will be sitting shiva at our home in Connecticut, if any local friends or family will come by. I will post more details on facebook.

In the meantime, donations can be made to the Dana Farber Cancer Institute, They can be made in honor of my father, Frederick Hugh Levine, designated for multiple myeloma research. Donations can also be made to Abilis, This is Jo Jo and Geoffrey’s Birth to Three provider, and I am chairing their annual walk this year. Every year, my father made it to the walk, except for last year, and I had hoped upon hope that this year it would happen.

But I know he will be with us in spirit, as he is with us everywhere now.

In a couple weeks, I will publish a tribute to my father on this blog. But in the meantime, I need to heal, to cry and laugh and otherwise grieve, and to be with my children.

Thank you, everyone, for everything. Thanks to friends who offered to bring meals this week to my family in Connecticut, while I was here. Thanks to those who called or emailed to show support.

Daddy, I miss you.







Posted by: Hallie Levine | September 13, 2012

Letting Go

My dad went into hospice yesterday morning.

It seems surreal to be writing this, to be facing the fact that he’s dying. Yes, we knew it would happen eventually, but it seemed so far off, so remote, like the idea of the kids going off to college someday. Except, like most things, it sneaks up on you, so even though you’re conscious of the passage of time, and of things changing—children going from elementary school to middle school to high school, or in this case, my father getting weaker and frailer by the day—that when it happens it arrives with such intensity it’s like getting hit in the face with a tidal wave when you expected to dunk your feet in the kiddy pool.

I went to see him on Saturday. I got there at around 11 am, holding my cup of coffee and beaming with false cheer to try to perk my father up. “I’m Dr. Levine’s daughter,” I chirped Stepford wife like to the receptionist at the nurses station, and her face changed. “You need to speak to him,” she said, pointing frantically at the nurse typing away next to her.

“Oh my dear,” he said, stopping to look at me. He was balding, with longish blonde hair, the typical hippyish male nurse you’d expect to see at a hospital in western Massachusetts.  “I’m so sorry.”

It turns out the oncologist had showed up during afternoon rounds the day before and broken the news to my parents that there was really nothing more to do. My father’s myeloma had returned with a vengeance, and even  the newest third generation drugs would only buy him a couple more months. My father had been his typically stoic self while the doctor told him. “I’m done,” he said flatly when the oncologist asked him what he wanted to do. “No more.”

But later that night, when my mother left, he broke. Completely expected, given what he was going through, but now he was under psych watch with a Constant Companion.

“Jesus,” I said, and then, furious, “why doesn’t anyone ever tell me these things?” And then I realized that my mother had probably been waiting to tell me in person.

I went into his room. “Daddy,” I said helplessly. He didn’t respond. He was lying on the bed, hands clenched around the white hospital blanket. Over the last few days, he had gotten even more painfully thin. But his face was still unlined and he looked so much younger than his 69 years. He reminded me suddenly of Teddy, sleeping at night with his hands clutched around his blankie in a death grip.

“Has he been like this all morning?” I asked the petite woman sitting on the chair in front of him.

She looked at me nervously. “I don’t know,” she said. “I’m just covering for his Companion. She went to lunch.”

“Can you leave please?” I asked. I didn’t want some stranger gawking at my father. It violated his dignity.

She looked at me helplessly. “I can’t,” she said.

I gritted my teeth, ready for a standoff but just then my mother arrived and whisked me off to speak to the oncology fellow, an earnest young man who was surprisingly sensitive and compassionate despite my reservations that he looked like he was barely out of medical school.

Apparently the shit had hit the fan at about 3 am, when my father had become agitated and started demanding a knife so he could end it right then, which had prompted the arrival of his Constant Companion. “You know, I really don’t think your father needs all these precautions,” the fellow said cautiously. “I don’t think he’s suicidal. I think he’s just speaking as a former surgeon. He wants to make death quick and decisive, slashing life like a scapel rather than drawing it out.”

My mother and I both nodded. We knew what he was getting at. My father is both brilliant and pragmatic. He knew exactly what was going to happen to him, and, as my father’s daughter, I knew what he was fearing most. The total loss of control.

“What would you do?” I asked the oncologist. “What would you do if it were your father?”

He looked incredibly uncomfortable. “I can’t really answer that,” he said, and then he started rambling about how he tended to be incredibly emotional and thought from emotion rather than reason, and how he’d been in a similar situation and everyone in his family had looked to him for answers, and how he’d really, really wanted to keep the person around. And then he thought about it, and he realized it was for selfish reasons, that he wanted that person in his life, and that he didn’t want this person—whom he loved dearly—to suffer anymore.

So I knew what he was saying. It was time to let my father go.

There are no words to really express what I’m feeling right now, and no words to express what my father is going through. It just hurts, so badly, and the pain is just so raw. My father didn’t really talk the rest of the afternoon. He lay on his bed and answered questions in monosyllabic yeses or nos. I tried talking, making jokes, holding his hand, sometimes just sitting reading the newspaper and editorializing out loud. I told him about the kids. Jo Jo had transitioned to big girl panties. Teddy had learned to ride his new tricycle. Geoffrey was saying “hi mama.” But he had closed himself off. I felt as distant from him as if I were three continents over.

Then we heard on the news that there was a tornado watch in Connecticut. My mother started freaking out and went out of the room to call her dog’s babysitter (yes, her dog has a babysitter) to ask him to turn on the weather channel to find out what was going on.  I listlessly surfed the Internet.

“Hallie.” I turned towards my father.

“Yes, Daddy?” I said eagerly.

“GO HOME.” He said forcefully.

I wasn’t expecting him to say that. “Huh?” I said.

“I SAID GO HOME.” He was dragging the words out with effort, but he sounded exactly like the father I had known for the past 39 years. “I DON’T WANT YOU DRIVING THROUGH A TORNADO.”

“Daddy,” I said helplessly. I wanted him to keep talking, but I didn’t know what to say.


Even weak and helpless in a hospital bed, I knew I was no match for my father. I packed up my laptop and left with my mother.

“She’s staying in Amherst with me tonight,” my mother told him.

“Good,” he said tonelessly.

When we got to my parents’ house my mother started dinner while I went into my father’s office to look at old pictures. It was so strange to be in there, to see his computer and his beloved bookshelves piled high with books and his meticulously arranged files and know he would never be in there again. I pulled a bunch of albums out of the cabinets and began flipping through. One album was filled with photos from a Caribbean vacation from twenty five years ago, picture after picture of me and my sister and my mother on the beach. There were only a handful of my father, and I realized it was because he had always been the one taking the photographs. But I didn’t want these pictures of me and my sister, smiling dorkily at the camera with our huge thick rimmed glasses. I wanted pictures of him.

“Your sister spent all night looking through those albums too,” my mother said matter of factly, coming into the room.

There was a stack of photos pushed a bit further back in the cabinet, wrapped in a rubber band. I pulled them out to find a pile of black and white photos. There was my father as an infant, staring wide eyed at the camera sandwiched in between his parents.  There were photos of my grandparents, my grandmother posed, hip jutted out, in a tankini while my grandfather beamed shirtless beside her. Then there was a picture of my father, age 4, wearing a white shirt with bumblebees emblazoned on it as he pushed his baby brother in the stroller.

I stared at it. My father was the spitting image of Teddy. Everything—the dark hair, the tilt of the ears, the pointed chin with its slight cleft, the smile, even the way he leaned against the stroller. I knew, just taking in the picture, that my father had insisted on pushing his baby brother in the stroller all by “his self.”  I knew, because that’s exactly what my son would have done.

“Mommy, look,” I said, showing her.

She looked hard at the picture for a moment. “Wow,” she said, drawing in her breath.

I took the photo home with me. It’s in my night table drawer, and I pull it out occasionally, just staring at the picture, marveling at the likeness.

We’ve always joked that Teddy is my father’s doppelganger, not just in his looks, but in his behavior. But while I’ve always known that, it takes such new meaning now. I’ll always have some of my father with me, every time I hold my son.

And Teddy is like my father. He has the same sensitivity, the same compassion, the same stubbornness, the same temper. He’s still a baby, and his little feet barely fit into his preschool size Stride Rite sneakers. It will take a while before he’s ready to fill my father’s sturdy brown loafers, to become the man his Pop Pop is.

But I know he’ll get there.

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