WELCOME TO A SPACE BETWEEN US
A Space Between Us is a blog for parents who are struggling to raise a "differently-wired" kid, whose life has been turned upside down by a diagnosis, and who feel isolated and exhausted.
I am here to share my personal journey of parenting a child with a disability. I do this as a means of camaraderie - to share the grief and frustration and guilt and small wins - and to tell you that you are doing a good job. Because you are.
No judgement here.
Thanks for reading.
...To begin again
When I wrote this section for the first time, it came out forced and generic. The result read like a resume: born in East Lansing, Michigan. Lived in Argentina once. Worked at a consulting firm in NYC.
I erased it and began again.
In June of 2019 our family nearly fell apart. Our four-and-a-half-year-old son, T, had pretty much stopped speaking, eating, and making eye contact for reasons that we could not identify. He was having violent meltdowns - tearing things off the walls, growling and thrashing in agony, sometimes for an hour at a time, multiple times a day. We didn’t know what was happening and we couldn’t reach him. The pediatrician didn’t know – yet suggested a trip to the ice cream parlor – and Children’s Hospital didn’t know, and said his blood work and gastro work-up were fine. Friends said their children threw temper tantrums too. I felt like I was living underwater.
When all this was happening, my husband and I were both working full time, yet our son increasingly couldn’t be at his longtime daycare. I was recently back at work after maternity leave at a non-profit in D.C. with an intense corporate culture. In the five weeks since returning, I had broken out in hives, pulled my neck muscles twice, wept openly in a stairwell, and developed an unexplained pain in my chest and ribs that wouldn’t lose its grip even with massages and Ativan and Epsom salt baths.
So my husband and I decided to blow up the stability of our lives to save them. If the components of our lives - our gender roles within the marriage, our house, neighborhood, geography, jobs, etc. - were pieces on a chess board, we swept our hands across it, grabbed all the pieces and threw them into the air.
Above all, we decided that one of us needed to dedicate his or her time, energy, and brains to helping our son get whatever help he needed. We also decided it would be harder to pull this off in one of the most expensive cities in the U.S. We set our sights on Michigan where I have family and things are slower, cheaper, and greener. We toyed with the idea of me looking for jobs there, but I was too drained and sad and exhausted to even try. So J got the job and we moved in late October. While J used to be slightly more a lead parent, now it’s me, with a special needs child. I’m struggling with it, but also gaining confidence.
My identity is in flux. But there are some things that remain constant. I am a Michigander by birth and by heart, I have more education than anyone needs or should pay for, and I have lived in a lot of different places, but plan never to move again. I like snow and I do not equate warm temperatures with "good" weather. I am a traveler by nature, though not in practice because of the current constraints of my life. I have two boys, 5 and 1, that are the loves of my life. They are rivaled only by my husband, J, who lets me sleep in when he can and makes me laugh until tears come to my eyes. And really that's all I need. That, and some non-parenting time with him. Because let's be real, that's why I married him, so we could hang out all the time.
I am also stubborn. Not stubborn with friends, or the way towels are folded, or what restaurant we should go to, or winning an argument. In fact, I am very much a willing go-with-the-flow type in many contexts. I am happy to have someone else make the decisions on an outing or trip or when buying a car, and I will enjoy the fruits of their labor without complaint. I am, however, quietly stubborn about goals. Big goals. Like finishing a PhD after having a baby or getting 200 interviews in a conflict zone where people said I wouldn’t be able to get data, or helping my son when people said I was over-pathologizing him or that I should not give up my career “just for him”. In fact, I plan to stubbornly write my way through the trauma I associate with motherhood right here in this blog. And maybe when I don't have anything to write anymore, I will be in a place of acceptance and able to provide a clearer "about" section. For now, friends, it's under construction. As we all are.