Tag Archives: family


March 11th, 2007. Ten years. An entire decade since I packed up all my things in my boyfriend’s parents’ minivan and crossed the border with my work visa and no idea whether or not this whole “Jen’s international move” idea might be insane. It was insane, really, if you think about it.

I’m an anxious person: risk-averse and disinclined to attempt anything where my success isn’t guaranteed. I’d never lived on my own. And yet somehow I found it in me to take certification exams and fill out visa paperwork and interview for a job in a foreign country, 500 miles away. Not a decision that anyone who knew me expected me to make. But ten years ago today, I surprised myself by actually going through with an international move.

I signed a lease on my first apartment. I opened a bank account. I bought furniture and groceries and I waited for the cable guy to hook me up with TV. I learned new roads and got used to using money that’s all the same color. I adopted a cat. I missed home. A lot. But I was doing this crazy thing and not actually failing at it.

Ten years later there’s a mortgage and a toddler and a marriage and a green card, and I’m still not actually failing at any of it. I’m actually doing a damn good job, thank you very much. Take that, risk-aversion.

My reality is here now, and after a decade I guess I’ve gotten pretty comfortable with it. I’m proud of myself for taking the steps and for working to build and maintain this life here, and I’m grateful for all the help I’ve had along the way. I’ve grown and changed and I hope that some of what I’m doing every day matters.

I still miss home. But not quite the kind of missing that makes me want to go back there, at least not most of the time. The kind where I wish that here was closer to there and going back and forth could be easier. If I could keep my job and my house and my family but also be able to see Mom for dinner, or pick up Timbits on the way home, or be able to leave the Habs game on as background noise as I fold laundry.

The current situation in this country is discouraging and frightening, and I’ve been asked over and over by well-meaning friends whether I plan to stay here. Barring disaster, yes, I think I will. This is my community now, and it’s my responsibility to lift up everything I’ve discovered that’s wonderful about America, while working to change what’s not. I may not apply for citizenship, even though that would give me a vote. I’m not sure yet whether I’m comfortable with the words I would need to recite in front of a flag which is so often held up in hateful ways. But I’m not leaving. I’ll try to teach my American kid some French in between his lessons about respect and civic responsibility. After all, immigrants make this country great.


Dear Representative: Save the Affordable Care Act

Dear Representative Cummings,

I am a legal permanent resident of these United States, currently living in Maryland’s 7th district, represented by your voice in Congress. I am writing to you today to ask you to keep up the fight to preserve the protections contained in the Affordable Care Act, and to work hard to convince your Republican colleagues to reconsider their efforts to repeal the Act. My son’s life may depend on it.

Liam is two and a half years old. He loves to play his ukulele and harmonica, and his favorite planet is Jupiter. He insists on wearing bow ties, he likes to help me make my coffee in the morning, and he tells me every day that he loves me “really much.” He is the greatest joy of my life. Born with a genetic condition called Neurofibromatosis (NF), he has already endured five sedated MRI scans, to watch carefully for growth of the tumors that already threaten his optic nerves and other regions deep in his brain. Every three months, we bring him to the hospital and hold him as they apply the anesthesia mask to his face. He holds his beloved Elmo, and we rock him and sing to him, but he always cries. He cries because he doesn’t understand. We cry because we do.

Despite all of this, he is a thriving and joyful little boy, loving and learning and testing his limits like every other toddler. He sees an ophthalmologist and a neurologist regularly, and he goes to music class on Sundays. He sees a physical therapist and an orthotist for the low muscle tone that come with his condition, and he has soccer once a week.

His extensive medical care is just a part of our life, and we adapt. We are grateful that he hasn’t yet needed any surgeries or serious intervention that would require hospitalization. Other children with NF aren’t so lucky. A day may come when chemotherapy will be necessary to stop Liam’s tumors from taking his vision. Serious and complex surgeries may be needed in the future, to remove painful nerve tumors growing along his spine. And one day, he will grow up and grow out of his dependence on us, leaving him to find coverage for himself. This is why we can’t allow the Affordable Care Act to be repealed.

If lifetime caps on benefits are reinstated, chemotherapy or surgery could have us reaching those caps within a matter of months. If pre-existing conditions clauses are allowed, my son may not be able to find affordable health insurance for himself when he grows up, because of a spontaneous mutation that occurred before he was born. And if anything happens to us to affect our ability to work, we need better options than high-risk exchanges or bankruptcy. Yes, we hope to maintain access to employer-subsidized health insurance, but without protections in place for us and our family, we’re one layoff away from a disaster. That’s a lot of stress to carry, when we already carry so much.

I came to the United States from a country where healthcare is understood to be a basic necessity, and is available to all through the taxes that residents pay into their government. When I moved to Maryland in 2007, I was consumed by anxiety. I had a good job with good health benefits, but what if I were to get sick enough that I could no longer work? What if I lost my job and it took me several months, or years, to find another? It’s common knowledge across the globe that Americans lose their homes when they get cancer, and carry crushing medical debt if their children have special medical needs. The passing of the Affordable Care Act, and the protections it contained, made me feel much safer here. America could be humane about health care after all.

That’s why I can’t understand why so many Republicans want to erase that progress and put stress back on American families and individuals. Surely they also have families of their own. Surely their constituents include families like mine, children like Liam. Why do they want children like my son to be left without access to reasonable health insurance once he’s out on his own? Why do they want to cap how much health care any one person is entitled to? Why do they want us to live in terror of losing our jobs or getting sick? Why do they think that families with sick children need the extra strain on top of what they’re already living? Why do they ignore the voices of the people they represent, and feel that they know better?

Please, sir, bring your Republican colleagues my story. Bring them all of our stories. Please appeal to their humanity and encourage them to do what is best for the people who are depending on them. Liam is counting on you. Our family needs the ACA “really much.”




I struggle to hold him still on the changing table as he twists his little naked body around to reach the light switch. “ight ahfffff!” he declares proudly, dragging out the ffff as though he were blowing out birthday candles. Not for another couple weeks, kiddo. I reach out to flick the light back on and spin him back around to secure the velcro on his diaper while he wiggles his feet in my face. “eet?” he asks. I grab one little foot and kiss its sole. MWAH. He grins. “Udda eet?” the other foot comes up beside the first, and I continue delivering kisses, MWAH MWAH MWAH, back and forth, one foot, two foot, while I get him into his shark pajamas.

I hoist him up and turn to set him on the floor, and he stops me, asking eagerly “Nunnel fuhst mommy? Nunnel?”

Of course.

Of course we can snuggle first.

Still holding him, all twenty-six wiggling pounds of him, I switch on the nightlight and pull the cord on the ceiling fan to dim the room with a click. I back carefully into the soft brown recliner and shift him into my lap, but he squirms free with a grin. “Cose! Cose dees!” he toddles to the bedroom door and pushes it closed with a click. He crosses the carpet to his crib and sticks his hand through the slats, all the way to his shoulder, to the very edge of his reach. He yanks his hand back out, triumphantly waving his frog Wubbanub. Half pacifier, half stuffed animal, “Bubba” is a snuggle time necessity. He pulls a blanket from the crib rail, pops Bubba in his mouth and walks towards me, stuffed frog dangling from his little face. He drops the blanket on my feet before lifting both hands up and out, and bouncing a little at his knees. The international toddler sign for “up, mommy.”

He’s heavy. The angle is awkward. I huff and I oof and I drag him up to my lap and he shifts around until his arms are in just the right places before he drops his head to my chest with a soft thud. He’s quiet except for snuffly breathing and the little sucking squeaks that escape around the pacifier. I wrap him up in the blanket and he wiggles an arm free, lifts his head, readjusts his shoulders, drops back down. He’s settled. He’s comfy.


My mouth is right against the top of his head, and I kiss him. He doesn’t smell like a baby anymore. He smells like sunscreen and sweat, like an active little boy. But it’s the same weight on my chest, only heavier. The same little heartbeat, only stronger.

I don’t get to contemplate my toddler for long, because after thirty seconds of ‘nunnels’ he pops the pacifier out and looks up at me. “Suh-shyyy?” I sing for him, rocking, telling him he’s my little squirm-shine and he makes me happy. After three rounds of suh-shyyy, two baby belugas, and a twinkle twinkle, he pulls himself up and points to the space between the chair and the bedroom wall. There’s a pillow stuffed in there, is that what he wants? He nods, and the frog in his mouth hops twice. I shimmy the pillow loose and move it to the arm of the chair, and he immediately throws himself into it with a grin. I can’t see the grin behind the Wubbanub, but his eyes are bright and happy, and there’s one sweet dimple peeking out beside the pacifier’s edge. I grin back at him and his eyes sparkle brighter and the dimple gets deeper, and just the smallest “heh” escapes behind the frog.

I hug him tight, so tight.

I’ll snuggle you as long as you’ll let me.


It’s been almost two months. Her number is still on a Post-it note beside my computer monitor. I can’t bring myself to take it down yet.

Some days I drive home and wonder how she’s doing. I forget she’s gone, just for a moment, just long enough for it to ache when I remember. In every conversation with Mom, there’s a vacuum where the update should be. The argument with the nurse over how sandwiches aren’t a real lunch. The hunt for the earrings she hadn’t seen in years but wanted to wear tomorrow. The whole lobster she ate when they took her out to dinner. How tired she was. How her blood pressure danced up and down and made her dizzy. How she spent the entire day in her comfy chair because walking was getting too exhausting.

Maybe I should have called more often. Her deafness frustrated us both and left us having parallel conversations with one side yelling to be understood and the other too proud to admit not understanding. But once she knew it was me, once I’d yelled my name three times with emphasis on different syllables in hopes one version would click, her voice would light up. I was her doll, her poupée, her first grandchild. It got harder to call, as her voice got weaker. It was frustrating. It was too hard to hear her talk about being tired, about how she thought she wouldn’t be here for Easter, or for Christmas, or for my next visit. It was so difficult to be reminded that she was 99 and each conversation might be our last. I didn’t call enough. I was selfish and scared and not ready.

I’m grateful that we did get a last conversation, and that I wasn’t left with the pain and guilt of not having said goodbye. When Mom told me she was letting go, I called her room and her little sister, my great-aunt, answered. Her voice was so small and so sad. At 87, she was sitting next to her big sister’s hospital bed, holding her hand and singing to comfort her. She sobbed and apologized and couldn’t put the phone to Grandmaman’s ear for me. She can’t understand, she said. She’s too far gone and she wouldn’t hear me. I told her I understood. I thanked her. I hung up. I cried. When Mom got there, I tried again. She told her “C’est Jennifer,” and held the phone to her ear so I could tell her I loved her. I tried so hard to pour 34 years of love and memories and gratitude into those few seconds. She tried to respond but didn’t have the strength. But I imagined her hand, and I squeezed it in my mind. I’ve decided to believe that when she realized it was me, she squeezed back, 500 miles away, to say she loved me too.

I can’t find the words, yet, to tell all the stories. There are so many stories. Both hers and ours. Her life; my memories.

Driving us back from dinner during the break between the afternoon and evening viewings at the funeral parlor, my cousin turned down a side street and stopped the car in the middle of the road. It was dark and we were alone. The clicking of the hazard lights was the only sound as heavy snowflakes fell all around us. My brother, my cousin and I all looked up at Grandmaman’s old house for a silent minute. “It looks so small now,” one of us said. Fifteen years since she’d lived there, but it was still Grandmaman’s house to us. Home to memories of Christmases and card games and hide & seek and macrame lampshades.

All of us in that car were adults, and yet we felt that we were sitting at the kids’ table. Until that week we were still the grandkids, still the younger generation. With Grandmaman’s passing, our parents suddenly seemed so much older. And that made us older, too. We weren’t ready. But I guess you never are.

I’ll miss her so much.


Liam’s Birth Story

Liam’s birth story begins with an ultrasound tech saying “Hmm.”

“Hmm” meant my amniotic fluid was very low. It meant an anxious phone call to Dave warning him not to leave for work. It meant they were getting a room ready for me in Labor & Delivery, because as the perinatologist put it, I’d be “having a baby this weekend, one way or another.”

Induction. What I’d most wanted to avoid. I wasn’t having contractions, my water hadn’t broken, and I felt absolutely fine (besides huge, sweaty, and sluggish). I’d read enough to know that pitocin’s no picnic, and that inductions before term had a decent chance of failing and sending Mom to the OR for a C-section. I wasn’t afraid of the C-section itself, but I dreaded the thought of being in pitocin-cranked labor for hours and hours and hours and then needing a section anyway.

I called Dave to confirm we were about to start the party early. I called work to tell them I wasn’t coming in for, oh, a few months or so. Then I drove home. I could have walked across the parking lot to the hospital, but I needed some time to come to terms with the induction plan. I was twitchy and distracted. I couldn’t make my eyes focus on anything. I pulled the hospital bag out of the car to check it and recheck it and make sure I hadn’t forgotten anything. Dave stood by patiently, knowing I’d already checked it two days ago. He was so calm. On the outside, anyway.

Then we went to Panera, because I wanted a chocolate chip cookie. Gestational diabetes be damned, if I was to be done gestating in a few hours. I wanted a goddamn cookie, and I was going to have a goddamn cookie. And it was THE BEST COOKIE EVER.

After the L&D receptionist gave us our armbands, a nurse brought me to a room and asked me to get changed into a hospital gown. I stood at the door, frozen.

“Don’t I start at triage?”

“Oh, no, we’re getting you started right away.”

Giant speeding truck of reality, meet my head. Head, meet truck. Ok, we’re settled, then.

A nurse took my vital signs, then strapped monitors to my belly. Whoomp whoomp, baby was still doing fine even though his swimming pool was down to a puddle. It took three tries and both arms to get my IV installed, because although the nurse was really good with her needle, my veins are full of valves. Good for doing their blood transportation thing, but bad for snaking a tube through. We laughed about it. I joke around a lot when I’m nervous.

Dr. Rojas came in, smiling as always, and explained what was going to happen. We’d be using a couple of waves of different medications, and we’d see what my progress was like after each one before moving on. That sounded fair to me. Slow and steady. I was relieved that they weren’t just going to fill me with pitocin right away. I was given Cervidil around 2pm and told to stay in bed for twelve hours while it worked its magic, opening up my cervix. 12 hours is a long time when you know you’re not supposed to move except to use the bathroom. I think we watched some TV. Dave went to get food, but I was only allowed liquids and jello and long wistful looks at his takeout. Sometime around 8 or 9, the nurse offered me Ambien so I could get a little sleep before all the craziness planned for the morning. I took it gladly, and drifted in and out of sleep for a few hours. Hospitals are hard to sleep in. So much beeping.

I started feeling contractions somewhere around midnight. They intensified steadily, and the nurses offered me some IV painkiller to take the edge off. It helped, and I drifted back in and out until Dr. Rojas came back in at 2am to check on me. He was happy enough with my progress to switch me over to pitocin. He told me things were going to start getting more intense, and that the medical team would do everything they could to minimize my pain – when I was ready for the epidural, they’d get right on it. He told me not to be a hero, to ask for it when it started to hurt. He squeezed my hand before he left.

It didn’t take long. By 3am, I was feeling contractions strong enough to make me whimper, groan, and squeeze the sides of the bed. I was making enough noise to wake Dave up, and I felt bad. After half a dozen contractions, I knew two things. One, I would never be the type to choose a medication-free birth. Two, it was epidural time. Well, it was ask for an epidural time. Took them an hour to get to me. That was a rough hour.

A needle into the spine is not fun. And the fact that they leave a little tube in place, similar to an IV in my back, freaked me out. But, you know, contractions. Pain. For how many more hours? So I leaned forward and tried not to move while the anesthesiologist did his thing. I flinched when the first medication went in, because it felt like my back was on fire. Pro tip: do not flinch during an epidural. You will be yelled at. Which may make you cry. Just saying, theoretically. He secured the tubing by taping my back up like he was shipping an international package in a questionably-constructed box, and then I got to lie down again and rest while my contractions continued. Or so the monitor said. I couldn’t feel them at all. Ah, pharmacology. I love you so much.

Fun fact: the epidural medication pump had an intermittent squeak that sounded so much like a tiny kitten that I was sure either Dave or I had changed the notification tone on a phone or tablet and we were getting lots of messages. I’d say it was just the drugs making me crazy, but a nurse confirmed the pumps squeak. Most people think it’s a bird. But it sounded enough like Horton that it helped me to smile through the pushing stage later on, so I’m grateful for it.

Dr Leak took over later that morning, and came in to check my progress. Three seconds into the exam, her eyes popped open wide.

“You don’t feel that?”

“…no…?” (Hello, that’s why I got the epidural!)

“His head’s right here! It’s pushing time!”

There was a whirlwind of gowns and tarps, some parts of my bed disappeared, and someone set the baby warmer to preheat in the corner. Before I had time to even think about it, they were hoisting my legs up and asking me to tell them when I felt pressure so I could push with the contractions. I did pretty well, or so they kept telling me. We laughed a lot through the delivery, which made me so happy. My son was coming into the world in a room full of laughter and silliness and joy. It helped tremendously that both Dr Leak and the nurse were incredibly relaxed and kept everything low-key and informal. It was like having three Daves in the room with me. I’d feel pressure, tell them “Maybe now?” And they’d say, “sure, let’s push.” Dave stood at my side and helped support my neck when I curled up for each push, and he encouraged me the whole way, telling me what a great job I was doing. After about an hour of that, Liam was born.

They put him on my chest and rubbed him down, suctioned the goo from his throat, and let me have a look at him. He was gross and squishy and beautiful. They didn’t leave him there long, because they didn’t like his breathing. They called in someone from the NICU to have a look, but they reassured me that it was almost always nothing, just a transition from goo to air that made them sound funny and struggle a little. I didn’t worry much. But then the specialist saw Liam’s hands shaking. They ran a bedside glucose test. His result was low. Very low. So low that they weren’t going to let me breastfeed him yet because he needed to get his sugar up ASAP. Before I knew what was going on she’d whipped out a bottle of formula and plugged it in his mouth. So much for avoiding bottles.

For the rest of the day, they checked his glucose every few hours, after nursing sessions. He was doing better by late afternoon, but not good enough for the NICU specialists, who decided he needed an IV with a steady sugar supply so he wouldn’t dip into hypoglycemia. They took him away around dinnertime. I was devastated. I’d just met him, and a few hours into our relationship, he was leaving me for the hectic bright world of the NICU.

We kept thinking they’d let him go as soon as his sugar looked good, but they were very cautious and wanted to wean him off his glucose drip very slowly, to be sure his body could manage sugars on its own after he left. So we spent three days visiting him there every three hours. Dave wheeled me down the hall 8 times a day so I could feed Liam, even if the little guy only got a few drops out of me and needed to be topped off with formula. We stayed for an hour each time, holding his hands and stroking his hair and trying not to notice the tubes and wires attached to our little man. The nurses were wonderful and he got the absolute best care from all of them, but Monday night became the hardest night in my life when I had to leave the hospital without my son. As we were packing up to leave, I saw the beautiful flower and balloon arrangement from my mother-in-law, and I fell apart. On TV, the woman being wheeled through the lobby with the happy “It’s a BOY” balloon is holding that boy in her lap. But I wouldn’t have my boy. And in my blind emotional state, I refused to entertain the thought of leaving this gift behind in the room. So Dave, wonderful, wonderful Dave, picked it up and walked three steps behind my wheelchair.

Liam won’t have any memory of the NICU, but we’ll never forget it. The sinks at the entrance, where 3 minutes of scrubbing with antiseptic soap stood between these babies and possible infections. Liam’s poor little feet covered in bandaids to hide the dozens of cuts from the lancets used for his blood draws. The tiny plank strapped to his arm to keep his IV in place. The care with which his nurses swaddled him up for the night. The shrieking of the heart monitor if we bent the wires the wrong way when picking him up from the plastic bassinet. The regular hum of the IV pump blending with Liam’s snorting and sucking as he was held to my breast. The sounds of other parents, getting news you can’t ever be ready to hear. We were so lucky that it was just a little blood sugar issue. He was only in the NICU because they were being extra careful. I can’t imagine the stress that other mothers must feel when their babies are stuck in the NICU with serious issues for days or weeks or months.

But Liam’s body just needed a couple of days to figure out how sugar works. We brought him home on Tuesday, healthy and happy and asleep. We got him into the house and let the cats sniff him. We put all of our bags in the front closet to be dealt with later. We took our son out of his carseat, looked at his scrunchy sleeping baby face, and wondered… what the hell were we supposed to do with him now?

Two Weddings and a Baby

The First Wedding

We sat at the Cuddle Up Pavillion at Glen Echo National Park, alternately peeling our skin from the vinyl chairs and fanning our faces with the wedding programs. The groom paced near the altar, drinking lemonade and accepting hugs from family. His groomsmen scanned the area for signs of the bride.

There was a giggle from my left, and I turned to see a group of guests leaning over a cell phone. “That is SO like her,” said a woman in green, “to be late to her own wedding!”

I took out my own phone to check Facebook, and saw her post:

“I am going to be late to my own wedding. Shocker. Don’t worry, Ryan, I’m coming!!!”

I smiled, and then aimed my phone’s camera at the groom.


I sent her the photo with the message “He’s still here!”

He stayed, of course, and my good friends were married on a hot and beautiful August day, in front of all the people who love them most. They made fun of me later for the grin on my face through the ceremony, but when you’re that happy for someone, you can’t keep it in.


The Second Wedding

Rain on your wedding day is lucky, but not if your ceremony is outdoors. Luckily for my cousin John and his beautiful bride, the threatening skies held back and left the orchard dry.  Huge iridescent dragonflies dipped between the wedding guests as we sat by the apple trees and watched the happy couple promise their lives to one another. When the minister mentioned their son, soon to arrive and make them a family of three, everyone reached for a tissue to dry their eyes.


As we found our seats under the big tent for the reception, my little cousin Olivia ran to our table and held up a bag for me to see.

“I picked apples!” She beamed with pride.

“Wow, that’s a lot of apples! Are you going to eat them?”

“Nope!” She bounced away to show others her bag.

It was wonderful to be with the family for a whole evening. It was more like a party than a wedding – casual and comfortable and welcoming. The peaches in the salad were so good that I sneaked back to the serving bowl and played the claw game with the tongs to pull out more peach slices for my plate.

When the music started, I taught Olivia to twist – an essential life skill – and she dominated the dance floor for the rest of the evening. As one adult’s energy ran out, Olivia grabbed another’s hand and demanded they dance. Three years old, and she was already going to the deejay station to request her favorite songs. He was sorry to have to tell her that “Gangnam Style” wasn’t in his playlist, because it’s hard to disappoint someone so adorable.


It was a wedding to remember. A reunion and a beginning. It was love and happiness and a gorgeous Massachusetts apple orchard at the start of autumn.

The Baby

I came home on Friday and dropped my keys on the counter.

“Honey, I’m home!”

I heard Tasha laugh from the couch. She’d spent the day hanging out with the cats and the complimentary WiFi, because my vacation days were tapped out, but she’d wanted to visit me in August anyway, for a change of pace. We hadn’t had a chance to hang out and talk in ages.

“Welcome home!” She came up the stairs and motioned to the phone on the counter. “Someone called a few minutes ago,” she said. “I didn’t hear the message, though.”

I pressed the button and my heard father-in-law say “Hi. It’s me. Call us back when you get home.”

“Everything okay?” Tasha asked.

“Well,” I said, “it’s either bad news or baby news. With Sarah due in a couple of weeks, it could be any time.”

Happily, it was baby news. My sister-in-law had gone into the hospital that morning with contractions, but she’d been sent home. Not unusual, apparently. As of the time I called my in-laws back, though, she was back in Labor and Delivery and they’d decided to keep her there. Baby on the way! I hung up the phone after extracting a promise from my mother-in-law to call as soon as there was more news, even though it was likely to be in the middle of the night.

Tasha and I went off as planned to the Friday afternoon farmer’s market, looking for some tomatoes and green beans for dinner. Friday’s market is set up in the hospital parking lot, so I turned towards the side of the hospital that I thought might be the Labor and Delivery unit, and waved enthusiastically at the windows. “Go Sarah! You can do it!”

It turns out that my encouragement was appropriate. By the time I pulled into my driveway with my pal and my bags of local produce, I had two missed calls on my cell phone, giving me the good news that my beautiful niece had arrived. I’d like to think my cheers helped a little, but my sister-in-law sure did a hell of a job. So now I’ve got a niece, and she’s the cutest little squeaky thing. I can’t wait to see what she turns into as she grows up.


Multiple sclerosis is a terrible way to die.

Sonya was Dad’s second wife. They married a couple of years after my parents’ divorce. I can’t say that we were very close, really, because of the nature of that relationship and the fact that I moved away soon after they were married. But I never had any reason not to like her. She was loud and silly and kind. To my eyes (and ears) she was the stereotypical Southern American, and I couldn’t help but poke fun at her American flag quilts, gun-totin’ relatives, collectible figurines, and Arkansas accent. She didn’t mind, and sometimes even cranked her drawl up a notch just for me. She seemed to make Dad happy. I’m pretty sure she was the one picking out Christmas presents for me and my siblings the whole time she and Dad were together, and she always chose better than Dad would have on his own.

I never knew her without her wheelchair. Her MS had already knocked her off her feet by the time we met, but she was tough and optimistic and open to new treatments. She made appointments with the best specialists at the Montreal Neurological Institute. She tried pills and injections, and clinical trials for new experimental medications. Both she and Dad kept up on the latest research online so they could point at a new study and ask the doctors if there was any hope there. I saw Sonya puff up from steroid treatments, and then shrink away as eating became difficult. She started visiting the hospital more often as her condition worsened. Despite regular physical therapy, her body got weaker and weaker, until even a wheelchair was too much for her. She spent days and nights in a hospital bed in her living room, watching TV with a pile of cats on her legs. Eventually, she deteriorated enough to need full-time care, and so Dad reluctantly found her a spot in a long-term-care facility.

She died yesterday.

I got to visit her a few weeks before the end. Her pillow, embroidered with “An American Princess Sleeps Here,” was carefully propped up to keep her head from dropping to the sides. She wore new PJs, and hugged a plush cat doll to her side. That is, Dad had placed the cat by her hip and put her arm over it – she no longer had any control of her limbs. She smiled when she saw me, and opened her mouth to speak, but no sound came out. Just a hint of breath. It was heartbreaking to see her reduced to a smile and a whisper.

Multiple sclerosis is a disease of the central nervous system, and the central nervous system controls everything. That makes MS a progressive, debilitating disease of the whole body.

Your nerve cells need a protective layer around the long axons they use like telephone wires to get messages to their neighbors. MS eats away at that layer, leaving the lines weak, frayed, and full of static. Depending on where the damage begins, your disease may manifest itself in blurred or double vision. You may stumble as you lose your sense of balance and develop involuntary spasms in your legs. You may feel numbness in your hands, and find yourself dropping things as you lose your dexterity. Maybe you need a cane at first, but over the years you may move to a walker as your legs get weaker. Then a wheelchair when they stop working entirely. You might lose conscious control of your bodily functions, depending on a caregiver to keep you comfortable with diapers and catheters. Solid food can become a choking hazard as your throat muscles stop receiving commands, so you may need a liquid diet or a feeding tube. Your voice becomes a whisper as your vocal cords shut down. You’re trapped in a body that can’t hear your brain.

They’re not sure what causes it, or why some people progress so much more rapidly than others. There isn’t a cure yet, and most of the treatments only offer short-term relief of some of the symptoms. MS is a mystery, and it’s terrifying.

As I sit around today, waiting for news about funeral arrangements for Sonya and consoling Dad over the phone, I’m making a donation to the National Multiple Sclerosis Society in Sonya’s memory. I can’t stop MS from squeezing the life out of people. But someone out there will find a way someday, and I want to help them get there.

The Smashing Of The Bunny

It’s a funny thing, to watch an octogenarian grin wickedly as she crushes a chocolate bunny’s skull in her wrinkled hands.

The Smashing Of The Bunny is a decades-old Easter tradition in my family. Every year, a large hollow chocolate creature of some kind sits at the center of our Easter table, nestled in neon plastic grass, surrounded by Hershey kisses and Cadbury Creme Eggs.  A bunny, a hen, sometimes a squirrel, quietly waiting for us to finish our plates of deviled eggs and honeyed ham.

Waiting to meet its doom.

A different executioner is selected every year, and each family member has a different signature approach to the job. My brother grips the bunny’s ears, and then delivers a sweet right hook to obliterate his belly. More than once, we had to retrieve bunny shards from the kitchen floor. My sister has a clean, top-down approach with the chocolate hens, bringing a swift fist of justice down onto her victim. I am the decapitator, squeezing the hollow neck until I feel a crack, and then lifting the chocolate head high in victory.

When I was first asked to bring dessert to Easter dinner with my in-laws, several years ago, I brought along a lovely chocolate bunny. The family was a little puzzled at first when I explained that after dinner, we would beat him into the chocolate chips from whence he came. Luckily for me, they’re more than happy to include my family’s strange ways with theirs, and we have had a Smashing Of The Bunny every year since. I’m incredibly grateful.

Because Easter isn’t over till a chocolate bunny dies.

How Did We Get From Saying I Love You

“I married a Canadian – whom I love very much – and she introduced me to a great band called Great Big Sea. And this song is in NO WAY dedicated to her. At all.”
We needed this cruise. More than I realized; more than I can really explain.
Different couples deal with stress in different ways. Some argue, slam doors, and seek out space away from one another. Some look so far outside the relationship for comfort or for escape that nothing can be salvaged.
I have always been afraid that stress would pull my relationships apart. My family doesn’t have a good record in that area. Almost every one of my aunts and uncles who married found themselves in a hurtful and bitter divorce. My parents’ relationship was strained and uncomfortable for years, and ended the same way.
My first boyfriend abandoned me when my parents’ divorce made me “too goddamn sad all the time” and “annoying to be around.” I see now that it was an unstable and unhealthy young-adult relationship that was a bad idea from the start, but it crushed my 18-year-old self. I dropped out of college and floated through several months in a blur before finding the light again and crawling my way towards it. I went back to school. I tried to be sociable. But things were different. I had witnessed a relationship I thought was the most solid and reliable one in the whole world – my parents’ marriage – falling angrily apart in front of me. I had no good role models, nobody to look to for thoughts on a healthy relationship except the columnists at Cosmo and the couples on Friends.
When my husband and I were moving towards our wedding day, I was flooded with conflicting thoughts. Of course we’d last forever – we loved each other so much, understood each other so well, laughed so often together. But everyone must think that at one time, or nobody would ever risk the commitment of marriage. Who could say, then, whether our relationship could withstand all the years ahead, all the problems that would come our way?
It’s been a hard year for us. Members of my family, far away in Canada, have been sick and needing surgery. I lost one grandmother, and the other is 98 and fading. I’m far away and can’t be there for the ones I love, and the guilt eats away at me. I left my old job, which meant leaving some of my support group behind. Other friends moved away. I’m still striving to find my role in my career and in this world. Arguing with immigration agents. Arguing with health insurance companies. Struggles and loss. I got scared. Scared for us.
I tell my husband, often, how much I love him. I cling to him sometimes when we’re in our office together. I drape my arms over his shoulders, my cheek pressed into his beard, as he reads message boards and checks his email. I doubt. I worry, analyzing everything. I ask him again and again whether we’ll be okay, whether we’ll stick together, all the while hating myself for asking but not always able to stop. His answers are always the same, always reassuring, always patient, always yes, yes, of course, I love you and we’re in this for the long haul no matter what.
“How Did We Get From Saying ‘I Love You'”, by Great Big Sea, is a breakup song. It’s about running into your ex after the breakup and realizing you can’t find anything in common anymore, anything to talk about except the smalltalk of strangers. It’s heartbreakingly sad. My feelings of inadequacy and fear of divorce and loneliness make a song like this really resonate with me.
And my husband played this song for me, at an open mic night on our cruise. Knowing how much I love hearing him play music, my husband found a way to dedicate his performance to me without dedicating the song itself. A little gesture, spontaneous, touching. It meant so much. Maybe we’ve come from saying “I Love You” to the place where the words don’t matter as much as the sentiment, and maybe I can be okay with that. I am loved.

 I’m linking up with some amazing bloggers over at Yeah Write. Stop by and spend a little time reading and supporting the gang!