My greatest fear in life is failure. Not on a minor level; I'm not overly concerned with screwing up at work or falling on my face in front of a ton of people. I mean failure on a grand scale. Failing as a wife, a mother, an advocate. I constantly worry if I'm doing enough for my child. For someone that already dealt with anxiety pre-parenthood, adding in the wealth of worries special needs parenting dredges up means I live in a 24/7 bubble of bother.
When your child is born, something just kind of snaps in your brain. All of a sudden you operate on a kind of loop--you constantly wonder if they've eaten enough, if their size is "normal," if they're happy or sad or in need of anything. If my relationship with my mother is any guideline, I'm keen to say that loop doesn't stop once your child enters adulthood. Most of what I remember from Kerrigan's newborn days is logging what side she nursed on or when she had a wet diaper. That loop is only exacerbated when you toss a disability diagnosis into the mix.
As a new mom, you have to learn to kind of "tune out" the loop at times so you don't give yourself a headache. As a new mom of a baby with a disability, you have to learn to turn it up to hyper speed. Beyond worrying about their growth curves, you now compare their height and weight on both the charts for typically developing children and the charts for children with their disability. You worry about their eating schedule, but you also have to cram in a full therapy schedule around all of that nursing and bottle feeding. Everyone in your crunchy-mom group says Baby Led Weaning is the best way to go, but your research and Occupational Therapist are saying purees at 4 months will help reinforce great oral tone. My particular anxiety makes me feel like my thoughts are on a hamster wheel. My brain spins non-stop, sometimes so much so that I can't fall asleep. All of a sudden, with Down syndrome in the picture, I wasn't just on the hamster wheel, but I was now also juggling with bowling pins that were lit on fire. It has become a perpetual battle with myself--am I doing enough?
Am I reading enough research? I'll be frank. Books about T21 are boring. I love reading. I do not love reading about the best tactics for discipline in children with Down syndrome. I cruised through emotionally relatable reads like Bloom and An Uncomplicated Life. I have far more educational reads stacked on my nightstand but good lord, it's a task to get through a chapter. Am I fighting hard enough for therapies? I've been chastised and chided for not forcing our Early Intervention team to continue physical therapy services and for cutting occupational therapy down. I felt that those choices were in Kerrigan's best interests, but how do you know? Am I advocating enough? Sure, I volunteer to help with the Buddy Walk each year. We host fundraisers and attend events. I always feel the need to do more--no matter how thin I'm stretched, I can always stretch thinner.
Am I doing enough?
When Kerrigan is a grown woman, my hope is that she looks back on her childhood and sees a mother that provided her a path to live life to its fullest. I don't know that I'll ever feel truly fulfilled in my role as her mom because there is always something I could expand on. There's always room for learning, improvement, and growth. so the question will always remain...am I doing enough?
Guest post by Kayla Schadegg