Five years ago I suddenly went from mother-to-be to mom of a child with a disability. There was no warning, no training. Now I’m six weeks into another role I didn’t sign up for — preschool teacher. Well, not just that: add in special education, occupational therapy, physical therapy, and speech therapy. Managing Hannah’s school work and keeping her fed, safe, and semi-entertained is a full-time job, on top of my actual full-time job. As independent as Hannah is, she’s still not capable of doing everything herself. That means maintaining a certain level of supervision all day and being ready at any moment to help her. I can tell you a 5-year-old’s bladder certainly doesn’t care what’s a convenient time for me.
Every day is a seesaw (admittedly built by my own expectations). I bounce from totally ‘killin’ it’ to barely hanging on. There’s no work-life balance. There’s no work-life integration. I can’t lean in or out. If I focus on work I feel like I’m failing Hannah; if I focus on Hannah I feel I’m failing my employer. While Hannah’s understanding and patience for the situation has increased significantly since March, there are still meltdowns when she begs to go outside in the middle of the day and I say no. Some days we survive on Goldfish and coffee. We don’t have a schedule, let alone a cutesy color-coded one, and screen time is out of control. The goal now is to simply not undo the phenomenal work Hannah’s team did since September.
This new life is just as hard on Hannah. No more school or daycare. No more gymnastics. No more spontaneous trips to Target. A big outing these days is driving down the street to see if the cows and horses are outside. Hannah misses her teachers, therapists, and classmates dearly. She scrolls through ClassDojo every day to look at pictures of her friends and re-watches videos of their classroom birthday celebrations. There’s a reason parents of children with disabilities fight for inclusion — our kids love to be with their peers and it’s where they thrive.
Now, I don’t want my complaints to overshadow how incredibly lucky our family has been. I truly do try to maintain a healthy level of positivity and gratitude in between the occasional secret sob-fest in the pantry or in the car. We have a house with multiple rooms to make messes in. We have a backyard in a safe, quiet neighborhood. We’re maintaining our incomes and I have the opportunity to work from home at times. Hannah’s grandparents are available the weeks I’m in the office, and to be honest, their homeschooling-during-a-pandemic-skills are impressive.
More importantly, we’re lucky to have this time together. Without extracurricular activities and meetings our evenings are more relaxed. The weekends no longer fly by from squeezing grocery shopping, errands, and chores into two days. We’re no longer rushing. Hannah can take her time working on skills like getting dressed, going potty, and brushing her teeth by herself. We hang out in our jammies reading dozens of books and then reading them again. We dance along to GoNoodle or the Trolls soundtrack, usually with Hannah directing me like a seasoned fitness instructor. There’s time for her to help me fix meals, empty the dishwasher, and load the washing machine. She asks a lot of questions, which means learning new words and new ASL signs. While I hope this is a once in a lifetime pandemic that means this time with Hannah is even more precious.
One day we’ll look back and, despite the tears shed and sleep lost, we’ll realize it wasn’t so bad. I look back at those first months with Hannah when I was scared to be a mom of a child with a disability, afraid that I wouldn’t be able to fight for her or give her the life she deserved, terrified of her heart defect and impending surgery. In the moment it always seems impossible. But every day we wake up and do our best because that’s what parents do.