Adventures with Margot

ASD Roadmap

Siege or surrender: The battle to turn the winter holidays right side up again

December 30, 2016

It is odd that having children is so normal, yet no one is ever really prepared for the completely unexpected and wonderful ways it changes your life.  I love spotting young couples making their their first foray with a newborn into a cafe.  Strollers and diaper bags overstuffed for every contingency, totally engrossed in their infant and oblivious of their surrounding, supremely happy... and not a little shellshocked. But there are many natural mechanisms to guide and support them.  Parents and friends provide them with ideas, act as models, and share triumphs and tribulations.  Schools shepherd their children to eventual independence before they leave their parents broke and/or crazy. And many other people making other important decisions on behalf of the children or their parents are parents themselves, and so can draw on that experience to make the best possible choices.  So your life might turn upside down when your first child is born, but that is normal, and many people can help you to right yourself.

It was only when I became a parent of a child with a disability that I could appreciate how ill-prepared we all are for this unexpected kind of responsibility. It is the most difficult job we neither applied for, nor can never resign from. None of the natural mechanisms are in place, and so going broke and crazy is a real possibility.  Many of us have to plan a lifetime of support if our children do not grow up to be fully independent. Your life is turned upside down, and may never really right itself. And while it is hard for us to speak frankly about all of our concerns, it can be even harder for others to listen.

Maybe because I have always loved a good war story, everything became a battle to turn our lives right-side up. Our life and future were now under siege from the marauding army of Margot's disabilities. Margot's Marauders appeared to be as skilled, relentless, and unpredictable as Rommel's armies at their best, and they almost routed me.  With my back to the sea, I wondered if this was my Omaha or my Gallipoli.  I manned the barricades as reinforcements for Margot's Marauders appeared on the horizon, in the form of another gloomy diagnosis or prognosis.  I retreated into highly predictable routines that made best use of our limited knowledge, time, and resources, and carefully designed to minimize the risk of precipitating problems. I added new routines and strategies like the stones in the wall of a redoubt designed to protect our increasingly modest, upside-down life, while trying to avoid becoming imprisoned by them like other families.

As the walls went up and my siege mentality strengthened, I regrouped and began to regain some semblance of a normal life. I trained my field glasses on some highly desirable territory we had lost early in the campaign; the kinds of holidays we enjoyed before Margot's Marauder's came galloping across the steppes like a Mongolian horde. These holidays had always helped us to re-connect with our family and recharge our batteries... a little R and R behind the lines. Alas, Margot's Marauders ultimately prevailed in the battle to keep my version of winter holidays intact.  But she also taught me the need to occasionally surrender during a long campaign. Lose the battle to win the war... It was not to be my Gallipoli, it was not yet my Omaha... it was perhaps my Dieppe. And it helped me create a Margot-kind of winter holiday, with its own pleasures. Here is what happened.

Keeping Christmas alive

I have many fond memories of the Christmas season... the excitement of packing up the car to join the other holiday travelers, the laughter and easy conversation with family over a languid and luscious dinner, and sleeping in instead of rushing off to work.

The drive, the conversation, and the break from work all turn upside-down our second Christmas with Margot. We got by on adrenalin the first Christmas, because we could finally bring her home from 30 days in the NICU after her birth.  The next year, our drive was exciting because Margot massively vomited all over the car shortly after leaving New York City on the I-95 to Boston during a driving snowstorm. I did battle with the holiday traffic while my wife Monique tried to clean up without pulling Margot's NG tube out. Instead of a conversation around whether we should abort this mission, Monique and I just screamed nonsensically at one another for a while.  Mind you, maybe we were just channeling the mood on this the most brutal stretch of interstate in the US on the most brutal travel day of the year (our son claims to have no memory of this).  And as we were beginning our trip, we knew that we could only dream of rest and relaxation AFTER the holidays were over, when Margot was back in school and we were back at work.

The next couple of seasons, Monique and I tag teamed during Christmas dinner like a couple of professional wrestlers.  We would wrangle Margot into some kind of sparkly outfit she would never wear again, and parade her around the family gathering for the requisite family photos until she cried or vomited or pooped (sometimes a trifecta). Then we would retreat back into her bedroom and prayed that she would sleep so that we could keep our spirits up until her school resumed after the New Year. She did get better over time, eventually putting up with a 10 or even 15 minute minute parade, allowing us to get one picture when she was not writhing. But we just got more depressed as we watched cousins her age play, then walk then pictures we somehow never bothered to take.

A trip to the beach?

I also have many fond memories spent with my wife's family in warmer climes over the winter break. For while, we continued to do this by having my mother and our nanny watch Margot for a couple of days somewhere during the Christmas break. But with my mother turning 80, I needed an alternative. And I really wanted Margot to enjoy the sun and the beach as much as we did, especially after one summer when she smiled at the waves washing over her, dressed in bizarre pink bathing injected with foam, like some kind of bullet-proofed vest.

So I decided it was time for Margot to join us with my in-laws in the Caribbean for a couple of days over the holidays at a beautiful resort. As our trip to the Carribean (our C-Day) approached, I laid out a battle plan. Should I schedule a surprise landing in Normandy instead of Calais, by flying on New Year's Eve to avoid some of the crowds?  Can I expect to charge directly up Utah beach, or should I plan a more circuitous route to confuse the enemy.  For example, maybe a flight with a layover to feed Margot and try to keep her seizure medication from coming back up at 35 000 feet?  Learning to cope with a seizure on an airplane was not on my bucket list.  My wife knew I had no idea how Margot would cope with flying, and she wisely booked an earlier flight with our two other kids, away from the carnage of the battle.

To be honest, I have no memory of that first flight - it like I was not even there. There there was alot of crying and screaming until some shellshocked grunt resembling me handed Margot off to her mother after passing through customs. I had just started to settle in at the hotel, umbrella-topped drink in hand, squinting at the beach, when Monique came rushing back in. She had dropped Margot's Trileptal (her liquid seizure medication) on the floor.  The only bottle - and my peace of mind - had shattered into a thousand pieces.

It was not a complete disaster.  I learned some things I did not know. Like how glass breaks into remarkably tiny shards.  And how it is possible to scrape liquid medicine off a floor with a thick knife with absolutely no risk of contamination, but it is not possible to use a colander or coffee filter to separate out these tiny shards from the liquid. And how picking the tiny shards out with your fingers results in bleeding that can dilute the medication, and thus diminish its likely effectiveness.

Why was this such a problem?  This was New Year's Eve, so flying in the liquid suspension that Margot depended on was not an option.  Margot's neurologist and I had fine tuned Margot's dosage over many years, but were flummoxed about how to achieve a precise dosage by splitting the split-pea-sized pills likely available.  So off I trudged to the one tiny dispensary on the island to pick up whatever they had... to finally face my Waterloo.  But miraculously someone  had placed a special order for liquid Trileptal, and never bothered to pick it up. And so the nurse just handed the whole bottle to me, free of charge!

The following year offered a chance to fine tune my battle plan.  I decided a direct  flight would decrease the total amount of crying, and a flight on Christmas day would be even less crowded.  Unfortunately, that required a 6 AM departure from an airport a 3 hour drive away through Christmas Eve traffic.  But fortunately, the airport hotel had a room for me, apparently directly under the runway, ensuring a great sleep for both of us.

This time I do remember being on the plane, Margot crying whenever she wasn't hitting or scratching me, and me trying to wall her off from the other passengers. And I remember the kindly gentleman sitting in the aisle seat next to me, who started ordering drinks an hour into the flight and never stopped.  As we began to deplane, I explained a bit about Margot, thanked him profusely, and told him that the drinks would be on me the next time we met.

In the end, my Waterloo did not take place on a field of mud, or even involve a broken bottle of seizure medication.  It took place the day before we left, in the children's section of the hotel pool.  I was absolutely determined to finally prevail - that is, to make sure Margot had fun, whereby I too could be content.  The air was warm, the water was not cold, Margot was safe in her pink armored vest-suit. But whether it was the change in routine, the change in surroundings, or some other contingency my meticulous battle plan had failed to account for, Margot was simply not happy now... in fact, she had never really been happy at any point on this trip or the previous one. Within 5 minutes, she began to crumble, and this time her sobs were amplified by the water and the hotel courtyard, scattering other guests like fish in a pond.

Instead being a soldier, I now felt like a terrorist. And for just a moment I felt justified in my cause of going anywhere and trying anything to make Margot happy and bring me some solace.  Was there some justice in terrorizing more fortunate parents with normal children who could actually enjoy their Christmas vacation together? Perhaps it was my glorious destiny to sacrifice my few remaining shreds of sanity on behalf of all the other parents of children like Margot, who suffered in silence through their holidays. But I was too battle-weary, and we returned to our room so we could pack our bags for the trip home the next day.

This time, we all flew home together.  As before, I had Margot take the window seat next to me, because windows don't complain to the stewardess when they are hit.  Monique and our other two kids formed a wall in the row of seats in front of Margot and I.  I had barely taken my seat when the passenger sitting down next to me said somewhat solemnly,"I think I have that drink now." It was the kindly gentleman from my flight down. I had him switch with my son to take the aisle seat in the row in front. As the plane accelerated down the runway, I heard him quietly chatting and laughing with Monique, as Margot miraculously fell asleep on my shoulder.

Winter break, Margot-style

At first, I was very sad to have lost this battle.  But once I had surrendered to our new reality, I was able to take stock and think more flexibly about our winter break.  I returned to being a father instead of a soldier. I began to build our winter break around easy and accessible activities Margot and I could do together, like walking, and biking and rollerblading with the help of her Wike trailer. In an odd twist of fate, these options turned out be better than a warm beach.

Sometimes we have made use of a family's New York City apartment to discover the city's holiday charms, needing a three hour drive instead of a 4 hour flight. Sometimes Monique, Nicholas and Lili have joined her family for a few days in sunnier climes for a couple of days for a break of their own, while my family have joined Margot and I to explore Manhattan together, and to enjoy quiet dinners at home. This have given my family a chance to meet Margot on her own turf, joining our routines instead of making her adapt to theirs.  Not surprisingly, they too have all succumbed to her charms (and the occasional hit).

Now I have a new Christmas tradition of trying different things with Margot each year, and adding still more to our repertoire.  Everything has been a winner, save the Carousel in Central Park (it does have a creepy, Stephen King carny feel to it). It began with the first walk she ever really enjoyed, down Broadway on a snowy Christmas Eve.  The next year was our first foray to Times Square to be dazzled by the lights. The next year, she took the subway with me for the first time. She lasted three stops, bringing us back to Times Square. We walked through the crowds and continued the mile or so back home, through lightly falling snow. Subsequent holidays included walks up Central Park and down the High Line, and bike trips up through Harlem and back down the Hudson River.  Last Christmas marked our first real "hike": 1 mile up and down hills through the forest, in the company of her new dog, captured in the photo above.  This Christmas, I hope to bring Margot for her first ski lesson.

It still sometimes feels like a battle, but it really is more like a long campaign. More like winning hearts and minds, and less like hand-to-hand combat.  I have learned that there is a certain dignity to surrendering gracefully to these new realities. And I know that the world will not fall apart if I sometimes choose to walk away from a battle .

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Other Lessons It is hard for parents to speak frankly about their child's disabilities, and it can be even harder for others to listen