Recently our 25-year old daughter came home for a brief and (especially since COVID) rare visit.
We all had missed her so much. Unfortunately, her brother and father were away doing “dad/son things,” so we anticipated a great girl’s weekend. Well, unfortunately, it didn’t quite work out as planned. And my point is…it never does.
Moms of children with disabilities are often the unsung heroes or, in some cases, the (insert shock here) villains. With Mother’s Day on the horizon and actually having fit into both boxes, depending on who you talk to, I’d like to dedicate this to the real unsung heroes…the siblings.
Growing up, we tried to give our daughter Megan the life we felt she deserved or was meant to have. We felt that it was unfair to treat her differently when her brother was diagnosed with autism. For many families, that is not possible. The extraordinary amount of care and will it takes to parent a child with severe autism relies on every family member. Physically, emotionally and financially. So often, their young siblings cannot even comprehend what’s happening, let alone pitch in.
For us, we were lucky enough to have a really great program for our son Jack from the time he was diagnosed. However fortunate this was, living with a sibling with severe autism is a challenge. We tag-teamed all of the time. Jack’s needs always seemed to come first. Christmas, birthdays, vacations, outings; all depended on Jack’s behavior. There were always two cars involved in case of a necessary quick exit.
As best we could, we tried to allow Megan to live the most “normal” life possible growing up. Dance, ballet, gymnastics, friends, anything we could. But you see, none of that, without speaking for her, mattered. All she wanted was a “family.” I see that now, especially when she says, “I had a horrible childhood.” Was it because her friends couldn’t come over when her brother was “acting up?” Was it because we tried to let her take a friend on vacation with us and her brother pulled her friend’s hair for the entire one-hour drive to our destination? Was it because we were just bad parents? I imagine this looms in the head of most parents of children with challenges. But for me, it was and is a constant agony… could I have done more?
I struggle as a mom so often, as I know everyone reading this does. I wonder if we shouldn’t have protected her so much but let her be 100% a part of it: the good, the bad, the ugly? I don’t think she would have loved that either, but I also think she missed out on so many of the rewards. Sometimes as parents, we have to surrender and know we can’t win. We do the best we can. And that’s OK! As a mom, I struggle every day, even though it’s been 26 years. Could I have done things differently or better? I am sure I could have. But as Oprah says, “When you know better, you do better.” Amen, Oprah!
Today Jack and Megan are both happy and healthy young adults. Do they still struggle…oh, every day!!! And yet, sometimes, when mom needs some time off, wow, they come to the rescue.
As I said in the beginning, it was such a treat to have our daughter visit. However, I happened to get the COVID second dose vaccine and was pretty ill. Megan just stepped in and took care of me as I was apologizing for ruining her trip. “No worries, Mom, that’s what family is for.” Yes, Megan, that is what family is for. Insert tear.
Happy Mother’s Day!
