Lifestyle sync
I am writing this post from Texas at my mother-in-law’s house which sits on a massive piece of land, so far removed from town that they cannot even see their neighbor’s house. Talk about a fish out of water for this city girl. Sure, I grew up in Omaha, Nebraska and could see cornfields out of my high school biology classroom window, but for the most part my childhood was very suburban. At 18 though, I went 1,500 miles away from home to go to school in Boston. I have an amazing relationship with my parents, I just knew there was more of the world to see and I was eager to experience it. I love living in the city: the culture, the accessibility, the variety of, well, everything.
Miguel had to talk me into moving from New York City to New Jersey. He wanted a house and a yard and started sending me house listings trying to tempt me into moving, but I was stubborn and holding strong. It was shortly after Jackson was born and I didn’t see why we couldn’t raise him in our two bedroom apartment in Astoria, Queens, which had the perfect stoop for eating bagels and drinking coffee on Sunday mornings. Millions of people raise children in New York City and so, clearly, we could too. Let me tell you something though - it is hard AF. Making multiple trips to the grocery store with our little granny cart because we didn’t have a car. Taking twice-daily loads of laundry down the street to the laundromat and back…WHILE wearing our “large for his age” baby boy.
Then on one just-this-side-of-freezing, rainy January day my rose-colored glasses were finally shattered. We were leaving the upper west side after visiting a friend, Jackson was seven months old and did NOT want to be strapped back into his stroller. That not-so-little bugger was as loud as he was large and made sure I knew just how unhappy he was.
With Jackson wailing and wiggling in his stroller I managed to carry him down the stairs to the subway platform only to realize that I was on the platform going uptown and we needed to be going downtown. Somehow, I made it back up the stairs to the street level before having a complete meltdown.
“Mig? It’s fine, just do it.”
“Babe? You ok? Do what?”
“I’m wet! It’s cold! Your son is very heavy and I am never taking him on the subway again. Start looking for a house in New Jersey. It just doesn’t have to be this hard!”
Our lifestyle no longer fit the details of our life - if we weren’t going to come into a large sum of money anytime soon then something had to give. Rarely did I relent on much of anything, let alone something I had been so passionate about, so, Miguel acted quickly. Naturally, I thought it would take months, that I would have time to mentally adjust to this decision.
He found our home the following week.
It was the right decision, of course. The house was small and dated, but with the help of Pinterest and YouTube tutorials, we made it our home on a budget. We now had a beautiful backyard, we were within walking distance to the commuter train station, and Jackson had other kids to play with in the neighborhood. We would also come to learn that it was only a ten-minute drive to the hospital, not something we had considered when purchasing the home, but a fact we would appreciate later.
Throughout our lives we experience natural lifestyle changes: leaving our childhood home, living independently, creating our own family - whatever that means to us - we move, we learn, we grow. Then there are the lifestyle changes that catch us by surprise: those set off by sudden fortune or loss. For example, your husband booking the lead in the most successful Broadway show of all time or your daughter being diagnosed with intractable epilepsy. But then there are those lifestyle changes that are so shattering that they become a delineation in time. For me this is Adelaide’s life and subsequent death. There was life with her and there is life now.
Whether the lifestyle change is something we initiate or it is thrust upon us, there is an undetermined length transition time where we must actively work to sync our new lifestyle with our current life. As we stumble closer to the two year anniversary since I last held Adelaide I can see how I’ve grown more comfortable with our new lifestyle, void of medical and therapy routines. But when we travel, the noted differences come barreling at me: the stress of making the list and triple checking it to be sure that nothing life-sustaining gets left behind, the lengthy trudge through security as every piece of equipment and item of food are checked, the multiple trips onto the plane with our many bags, and waiting until the last passenger has disembarked to carry Adelaide off in her carseat.
But it continues to our destination: Not having to make emergent trips to the drug store for suppositories or Tylenol. Not having to research where the closest hospital is located or running out to buy a baby swing because that is the only way she will settle and fall asleep even though she is so large it can barely move with her in it.
When we moved from the city to the suburbs it was because our lifestyle did not sync with our life. When Miguel booked Hamilton and Adelaide got sick there were significantly more adjustments to be made, not least of which was an interstate move - but again it was all done so that our lifestyle could better match up with our life. Now, however, I find myself in this bizarre position where I don’t feel like my life matches my lifestyle vs the other way around: I still take note of the location of the closest hospital, I still stay up to date on the latest scientific advancements, I still wake up several times a night. Losing Adelaide was the most significant and sudden lifestyle change I could ever imagine but my life, my mind and my heart cling to what was.
Perhaps this is why I cling to this epilepsy and disability community so strongly. Because I’m not ready for my life to match my daily lifestyle. I need these connections to feed the void that Adelaide left behind. In September I will take over as CURE Epilepsy’s Board Chair. The responsibility of helping to lead and guide this organization beside our incredibly capable and talented leadership team is daunting to say the least. But I am grateful to keep this connection and for my lifestyle to stay connected to the life I fell in love with for just a little bit longer… near a large city…where I can see my neighbors…and don’t cross creeks on logs and ropes.
