One mother’s relationship with her son who has disabilities
by Beth
Gus and Beth
Our 28-year-old son wears diapers. He can’t talk or walk. If his food isn’t cut into bite-sized pieces, we have to feed him. Gus’s genetic condition doesn’t have a name, like Downs or Asperger’s. It’s known by its clinical description: Trisomy 12p.
My husband Mike has loved his son from the day Gus was born. It took me a lot longer. Truth is, I was angry at Gus. He wasn’t the baby I expected. A baby was supposed to bring us joy. The way I saw it, Gus brought nothing but trouble.
I did therapeutic exercises with Gus. I cuddled him, played the piano for him. But none of it was heartfelt.
Until one night, when I was singing Gus to sleep. Suddenly understanding washed over me: None of this was Gus’s fault. “‘You didn’t want it to be like this,’” I said, starting to cry now. “It’s not your fault, is it?” Over and over I repeated it. “It’s not your fault, Gus.” I kissed and hugged him, finally able to love him and to tell him so.
Decades later, Gus communicates by crawling to whatever it is he needs. He can manipulate a wheelchair, too, and when he wants to hear music, he rolls himself to the piano. Gus laughs and sings with the tunes and claps with delight whenever he hears live music. He loves to hold hands, especially while swinging on a porch swing. But as Gus grew bigger, Mike and I grew older. Shortly after Gus’s 16th birthday, we realized it was time for him to move away. Mike and I placed him on waiting lists all over the country. A facility four hours away contacted us in 2002. They had an opening.
Gus cried his entire first weekend away. So did we. ‘It’ll take some time for us to all get used to each other,’ the social worker assured us over the phone. On our first visit, we found Gus happy and smiling, yet not quite sure what to make of these visitors on his new turf. I sang to him. He felt my face. Suddenly he burst out in laughter, realizing it really was me.
During that visit I stood him up to transfer him from the wheelchair to the car so he could join us for lunch, and I realized how much he’d grown. He was up to my chin.
As I leaned down to kiss Gus goodbye afterwards, he took off. Couldn’t wait to wheel himself back to his friends in the activity center.
Now, when we visit Gus, it’s all fun. No hoisting him onto the toilet, no muscling him into the shower, no changing his diapers. No drudgery. He seems relieved, too, finally allowed to do things independently of his parents. Hmmm…maybe Gus has more in common with other young men his age than I thought.
February 24th, 2015 at 1:10 pm
Thank you so much for this heartfelt, honest and inspiring story of mothering a child with special needs.