daddy's kisses

spoiled welcome

Michael picked me up from the airport yesterday morning after a red-eye home from San Diego. I had spent six days visiting my eighty-one year old mom who has Alzheimer’s. I arrived weary with a stiff neck and aching muscles from sleeping half sideways in the plane and then in an airport seat, my boots propped up awkwardly on my luggage.

As a welcome home he cooked a wonderful spaghetti dinner and we had just sat down to eat it in front of a rolling fire. Michael had the baby monitor slung around his head when we heard Calvin move. It was just after eight, his new time for seizures, so instinctively I ran upstairs and found Calvin, red in the face, listless and semi-responsive, suspicious he had had a silent seizure.

By the time I got downstairs my meal was cold but I had lost my appetite anyway. Michael had already resigned to washing the dishes and putting things away. So much for my warm welcome home. It was spoiled.

It's a crappy existence to be imprisoned by a sick kid who never seems to get any better no matter what we do. The seizures remain elusive even in the face of—or perhaps due to—mounting drugs, and his autistic behavior gets worse and worse but that could be the drug side effects, who knows?  What we do know is that we are trapped.

Friends innocently ask us, “so what did you do this weekend?” I think to myself, what else but what we always do? A whole lot of nothing. Thankfully Michael rescues us from the grind, if only a bit, by his ever-expanding repertoire of delicious home cooked meals or a Sunday drive (as we cross our fingers hoping Calvin will stay calm.) Sometimes we spice things up on the weekend with an exciting trip to the cafe or an action packed visit to the hardware store. Yup, it’s pretty sorry when you get right down to it, an entire family tethered to a life of seizures, drugs, side-effects, doctors, diets, rigid schedules and a seven year old kid who is still in diapers, can’t walk by himself, can’t talk, doesn’t sleep well, screams much of the time, seems oblivious to the world and yet exercises a stubborn refusal to walk, with any semblance of skill, when we need him to.

I don’t believe in hell, but every once in a while I’d swear I was in it. Heaven is waking up, after a solid night's sleep, in a cozy seaside cottage hearing wind chimes, foghorns and songbirds—all by myself.

medical practice

When Calvin started having seizures when he was only two years old, we made countless trips to the emergency room of our local hospital. It quickly became clear that the hospital could not always handle Calvin’s complicated health, particularly since it lacked a pediatric intensive care unit. So, a half dozen times or more, after dangerously prolonged seizures, the Maine Medical Center’s pediatric emergency transport team came to gather Calvin and shuttle him thirty miles to their facility in a special pediatric ambulance.

On one occasion, after a twenty-minute seizure, Calvin landed in a cramped room in that hospital’s emergency department. White coated doctors and nurses buzzed around him taking vital signs and asking me about his medical history. I rattled off the long list of his diagnoses followed by the long list of his medications. Calvin had a fever and a rash all over his body. The attending and resident physicians suspected meningitis. We were told that, to confirm their theory, they were going to perform a spinal tap on Calvin, a painful and risky procedure that could result in paralysis. I feared that that course of action might also trigger another seizure, the kind most feared, the kind that never stops.

As Michael and I were expressing our grave concern about the spinal tap fresh resident and attending physicians took over and discussed Calvin’s case. The attending doc posed thoughtful questions to the intern regarding the nature of Calvin’s rash that might indicate the likelihood of meningitis. They determined that it was not meningitis and, with that, Calvin was spared a dangerous and distressing procedure.

We’ve been up against these types of quandaries time and time again since just before Calvin was born. My husband always reminds me, regarding the nature of the medical field and its infinite uncertainties about cases such as Calvin's, “that’s why they call it a medical practice.”

photo by Michael Kolster

goodnight mom

Last night I tucked my eighty-one year old mom, who has Alzheimer's, into bed. I stroked her fine white hair and hugged and kissed her goodnight:

Me: I love you mom.
Mom: I love you too. I’m so proud of you.
Me: What for?
Mom: I don’t remember what for, but it’s good.

We chuckled, I squeezed her soft hand, switched off the light and, with a very warm, happy and satisfied feeling, closed her door behind me.

Leaving today. I'm going to miss her.

October 2006

brick and flower

My husband Michael and I watch a lot of movies, mostly at home. Not too long ago we saw one about a couple whose four-year-old son had died in an accident. The plot caught us off guard.

Throughout the film I found myself identifying with the grieving mother. I stepped into her shoes click-clacking down the grocery store aisle as she watched another mother argue with her child. I sat behind the wheel of her parked car as she mournfully watched young dapper couples headed to the prom, all neat and shiny and pressed. I saw through her eyes the boys behind the glare of school bus windows sitting straight and confident in their seats. I felt her tears run down my face as she watched happy moments of other parents and their children, her own having been buried with her child.

In a scene with her mother, who mourned the death of an adult son, she asks if the feelings of grief and loss ever go away. "No" her mother says, "but it changes." "How?" she implores, and her mother describes the transformation of grief and loss into something that can be held, carried, like a brick in a pocket that at moments you forget until you reach down in and there it still is. The reminder. The loss. The brick.

I hold a brick in my own pocket, for the things that are lost to me because of Calvin’s circumstances, the things that he can’t do now—ride a bike, talk with his dad, make cookies with me, play with friends, read a story, run in the yard—and for the things Calvin will likely never do—live independently, go to college, have children of his own. This brick is heavy and rough, cold, bulky. But in my other pocket I hold a flower that is forever blooming—that belongs only to me. Its supple petals are the ivory silk of Calvin’s skin and its fragrance is beyond imagination. As time passes this flower changes like a chameleon, becomes more beautiful and interesting over time.  Most of all this flower serves as a reminder of the wonderful gift that is my son, and gracefully—thankfully—balances the weight of the brick.

pain and inspiration

My brother Scott is a world-class Master’s swimmer. He’s in his early fifties still swimming times nearly as good—if not better in some cases—as he did in College. Scott has competed in countless Master’s Nationals, in fact he swam in one last weekend in Phoenix. Over the years he’s broken a few world records in his age group.

Our dad was an athlete in his own right, running a 4:28 mile at the Naval Academy back in 1948. He was adept at hurling a javelin with the innate grace of his lithe animal self—a six foot four inch, one hundred and seventy pound gazelle. As a family man my dad continued to run for exercise and the sheer joy of it. Along the way he’d stash roadside aluminum cans in plastic bags and donate the proceeds to my swim team. He lifted weights and repeated hundreds of crunches, sit-ups and push-ups—the only bald-headed old dude I’ve ever seen with a washboard stomach.

Tragically, my dad developed cancer at the age of sixty-five. I don't recall him ever being sick until then. Several courses of toxic chemotherapy for multiple myeloma, a type of blood cancer, took its toll on him. I remember my mom describing the time he had to give a bone marrow sample. My dad denied anesthesia when the doctor bore a hole deep into his hipbone to extract a core. My mother said his clothes were completely drenched in sweat from the immense pain, but that he had remained silent and stoic throughout the procedure.

At one Master’s Nationals, when my father was still alive, my brother won his best event, the two-hundred backstroke. He received a gold medal, dangling from a wide red white and blue satin ribbon. He sent it to my father in a velvet-lined case along with a hand written letter on ruled yellow paper. I remember reading it and sobbing. Scott described the event, my father not having been able to attend. He spoke of slightly trailing his opponent, his muscles and lungs burning. He wrote how he worked through the pain thinking of the unimaginable agony my dad was suffering from the cancer, the chemo. He focused on that image and nothing else, just being one with the blazing pain, but for my dad. My brother poured it on in the last lap, his adrenaline taking him hard to the finish, muscles on fire, shredding, fatiguing. He won the race.

My brother has always been a great inspiration to me. He’s helped me win races, swim my fastest times, break plateaus. I often think of that letter he wrote to my dad, and of my dad’s suffering. Both of these men have inspired me to work through the pain and suffering in my own life, and now in my life with Calvin. I only wish I could share that same magnificent influence with my own son ... and with others.

bad things sometimes happen

 Last Friday I boarded a plane headed to San Diego to visit my eighty-one year old mom. She lives there with my brother Matt and his wife. My sister Caron lives about five minutes away with her husband.

When I go on trips like these, which is not often, I sometimes look forward to the journey, to just sit back, relax and think about nothing, do nothing. But that never happens. Instead, I end up with too much room in my head—lag space—and my thoughts seem to always gravitate toward Calvin and what the hell went so wrong. It’s what happened in the Washington Dulles airport as I sat in adjoining vinyl chairs propped up before a huge plate glass window staring out at the painted lines on the tarmac, sitting between strangers. I didn’t care if they saw me cry.

I always ask myself if I swam too hard when I was pregnant. Was that what happened? If only I could roll back time I’d do it differently. He’d have been such an amazingly extraordinary ordinary kid. If only I could see him now, without the mess of a brain—without the seizures—walking, talking, practicing multiplication tables, splashing in the spring’s rain puddles with me.

And then, as a coping mechanism, I remember the email my sister’s friend sent me, the OBGYN who we met in Boston after the shit had hit the fan, who wrote, “Unequivocally—YOU DID NOTHING TO CAUSE THIS PROBLEM. Unfortunately bad things sometimes happen.”

She got that right.

photo by Michael Kolster