Several weeks ago, a friend sent me an email and a link to this short essay. (note: the rest of this blog post will not make sense unless you read the essay)
My friend included a link to a counter point essay as well (for balance). I have been thinking about these essays. Italy. Holland. What they mean for our family and how I feel about our new place.
Like many Doose families; we started our lives in “Italy.” And we lived there quite happily for a long time.
At some point, Lil J quietly packed his bags and left us. His body decided it was time to move to Holland. We don’t know when. And, the timing of when his relocation happened is actually quite critical to his long term prognosis, but… there is no way for us to turn back the clock and determine what day and time his flight his departed.
My mother’s instinct (if you believe in that sort of thing) now realizes that Lil J was sending us “signal flares” from his new residence in Holland. As far back as February, 2016 Lil J began to have accidents.
A month later, he fell on the playground and his two front teeth went through his bottom lip. We also began to see a decline in Lil J’s behavior. He was less cooperative and increasingly defiant. He would become so out of control angry that in the back of my mind, I actually was worried that something “pop” inside of him.
My “okay sleeper” became even more restless. Therefore, as the lightest sleeper in our family, I began to wake up nightly to hear him stirring and watched him in the monitor tossing and turning. Standing on his bed. Reading. Playing.
When we visited my parents in July, I found him curled up at the bottom of a bookshelf that was adjacent to the mattress he was sleeping on. He began to wake habitually at 2, 3 and 4 in the morning to cry out for me. I chalked all of this up to his age and transitioning into a new classroom at school. Some of these behaviors absolutely are attributable to those elements.
But, when we met with Lil J’s neurologist to hear his first EEG results and she said “My concern is for the seizures you are not seeing. A lot of those seizures are happening at night” I had a weird feeling my stomach. The kind you get when you are watching a tv drama show and all of a sudden the plot lines finally come together for the viewer, but the characters don’t know yet. A lightbulb went off in my head. As a hard core extrovert I had to work hard not to blurt out everything in the three paragraphs above, and to simply say “hmmmm… that explains why nap time has always been so critical for him.”
In late August, I explained some of this to an epilepsy researcher. He was not surprised to hear my description Lil J’s behavior changes. He described it as an approaching thunderstorm. Like being able to see and hear thunder and lighting in the distance before it is overhead.
We will probably never know exactly how long Lil J was living in Holland before we joined him. Long enough to learn the landscape and develop plenty of coping mechanisms that far surpass the rest of us at this point. Long enough to look around and figure out how to signal for help. Long enough to develop deep fears about his new country of residence.
What I do know is that I am glad that he is no longer there by himself. On one of our first dates, my husband asked me what I wanted to do with our time together and I boldly replied “I don’t really care, as long as I’m with you.” And that is how I feel now. I don’t really care which country we live in – as long as we are all together.