For those of you who follow my blog you know that my 22-year-old son Spencer is Intellectually Disabled and my husband Greg has Primary Progressive MS and is confined to a power chair. For those of you who aren’t familiar with my story, Greg is my second husband and was only diagnosed 4 weeks after our wedding. He went from walking at our wedding to being immobile within 3 years. I can’t count how many times in my life I’ve heard the words “I could never deal with everything you do.”
Caring for two people with disabilities isn’t always easy but loving them is.
First I’ll share the hard parts. There are so many everyday things that you take for granted when you are able-bodied – dancing at weddings, going on a hike in the woods, visiting friends whose homes aren’t wheelchair accessible, spontaneously planning a weekend getaway. These are all things we can’t do together, and it definitely makes me sad. And yes, sometimes I get cranky when I have to do the majority of the work around the house and work full time.
As a mom it hurt as I watched other kids Spencer’s age get their driver’s license, graduate high school then college and fall in love for the first time.
But the one thing that truly terrifies me is what happens after I die to Spencer and Greg if I were to die before him? The profound weight I feel being completely responsible for two people I love is at times overwhelming.
It’s difficult for people who have able-bodied, neuro-typical loved ones to fully comprehend how hard it can be. I get that. Prior to my life as a caregiver I didn’t either.
Does this sound tough?
I won’t lie – it is. But here’s the amazing side of my life with Greg and Spencer.
Greg is my hero. He has not allowed his disability to define him. Prior to his diagnosis he was a pro-golfer. Today he is on the board of the Stand Up and Play Foundation, an organization that donates specially designed golf carts to courses around the country. The Paramobile allows people with disabilities and spinal cord injuries to play golf and other sporting activities. Greg now teaches the game he loves to stroke victims, military vets and others with intellectual and physical disabilities. He also keeps himself in shape by daily chair yoga sessions and working out on the Myocycle, a device that uses functional electrical stimulation (FES) to help people with muscle weakness or paralysis to exercise by pedaling a stationary bike.
Even more than his commitment to be his best self and desire to help others is his unwavering determination not to be a burden to me. It is a rare day when Greg complains about his disability, even though he has every right to.
I sometimes forget how incredibly hard it is for him to manage seemingly easy tasks such as maneuvering his power chair to get a dish from the cabinet or put something in the microwave. I know it upsets him that I have to do many of the tasks around the house that he would prefer to do – mowing the lawn, snow blowing, leaf blowing, even changing light bulbs in ceiling fixtures. I love that he wants to do these things as I also know there are many able-bodied husbands who don’t help around the house even when they can.
One of the greatest challenges for him is getting into bed and I have to help swing his legs up. Until COVID I used to travel a great deal for business and if one of the kids wasn’t around to help him get into bed he’d sleep in his chair. Last month, after my friend passed away from a long battle with cancer I knew that I needed to go away by myself and regroup. Despite this being difficult for Greg, he encouraged me to go, never once complaining.
I know Greg doesn’t believe me, but I don’t see the disability I simply see the man. The guy who always buys me the perfect gift. The man who I enjoy spending time with no matter what we’re doing. The goofy stepfather who makes my kids laugh and has been known as Steppy since the day we got married.
As for Spencer he is hands down the kindest and happiest guy you’ll ever meet. While he can’t drive he takes several walks a day, sometimes to Subway or Dunkin Donuts and other times just around the neighborhood. Everyone knows him and he knows them. He’ll stop and have conversations and tell them what’s going on in his life. My heart melted the day he told me that when he gets a girlfriend he knows that the most important thing is to “respect her and treat her with kindness.” While he might have trouble reading a book he can read a person’s emotions perfectly and when he senses someone is upset he’s the first person to offer comfort. Yup, that’s my son.
My daughters and step-kids love Greg and Spencer unconditionally. They too see beyond the disabilities to the men they are. And in my heart I know that, should anything happen to me, they will be there caring for both of them.
When Greg proposed to me we had no idea this would be our future. When Spencer was born I had no idea I would be caring for him the rest of my life. None of it matters because I love these two men just as they are.