My twin girls turn six years old later this month! We’re going with the super hero theme again this year. Word Girl and Captain Huggy Face were the flavor at last year’s party, and we’re going with that again this year mainly because the Word Girl costume still fits Sylvie’s twin sister. Word Girl rocks on multiple levels, but primarily because she is a smart girl who knows every word in the dictionary!
Captain Huggy Face doesn’t talk and has no super powers—in fact, he’s a pet monkey on the PBS kids show. I don’t think my daughter is a monkey, but she is sometimes merely a sidekick to her frenzied sister. Sylvie’s sister is a whirling ball of energetic madness most of the time, being a typical five-year old, while Sylvie struggles to swallow 20 ounces of liquid a day and get phlegm out of her throat with colossal coughs. It’s hard to feel any sort of balance standing in between these two little beings—one who is so fiercely vocal and independent and headstrong that she drives me into rages. The other who is so intensely dependent for absolutely anything that she drives me to tears. I anticipated chaos when we discovered we were having twins, but I never imagined such disparate worlds in which my daughters would occupy.
The circles and bags under my eyes are far more prominent than when the girls were born. I’m far more fragile and tired and stressed than when they were infants. I eat more and drink less, laugh more sporadically and see far less films than pre-twin life. My belly has never reclaimed its pre-twin shape and now hangs from my torso like a lost puppy looking for a new home. I wasn’t a particularly anxious new parent, but I feel far more fretful now as I worry each day about Sylvie’s health and her sister’s mental well-being. I long for that perceived harmonious time when my twin girls shared my womb, as I anticipated their arrival and their future together. For the first six months of their lives, they shared a co-sleeper, happy to have their familiar warm bodies squished together in small spaces. Their papa and I aimed to create a deeply secure and safe climate where our daughters could thrive —a goal many parents strive to achieve for their offspring. I often think I’ve lost not only that larger vision but my compass for such a secure and safe future for either of my children or myself.
While I use the new calendar as a time to reflect and hope for a fresh start, I don’t typically have many concrete resolutions for myself. However, this year, I want to focus more on self-care. It’s my birthday present to my daughters as well as to myself and my lovely partner of 16 years.
Over the last year, I’ve made a new friend and colleague in the founder of Parent-to-Parent USA; she’s connected with people all around the country who are advocating for children and youth with special health care needs and disabilities (CYSHCN). Earlier in the fall she slipped me an August issue of this fabulous Canadian magazine called Bloom –a bi-annual publication for parents of kids with disabilities. In the particular issue my new friend gave me, there was an article about self-care and respite that alter my perspective a bit. The article, “Respite: ‘It Needs to be a Way of Life’” reaffirmed the importance of taking a break and gaining perspective. When the girls were first born, I was deliberate about getting exercise, sleep, enough water and breaks. But once we were thrown into the dark world of living with Sylvie’s diagnosis, we went into survival mode, just trying to piecemeal respite as we could, and squeezing random “date nights” into our schedule. But here we are into year six, and Sylvie is still with us! A miraculous cure for her diseases has not yet arrived, so I better recalibrate for a long-haul marathon where self-care is a regiment of faith and necessity.
So happy birthday little ones. Your mama is going to work harder this year to make sure she takes care of herself more so that she has more energy and focus for you! She’s going to take more walks and drink more water and eat less chocolate and sleep more. In the meantime, you keep growing and playing and laughing in this next year of life.
When Kirsten isn’t working on self-enlightenment, self-care and finding respite, she is a professor of Communication Studies at the State University of New York. The paradox in this quest does not escape her.