How I’m thankful every day for friend and family caregivers

Though I can still function somewhat independently despite my facioscapulohumeral muscular dystrophy (FSHD) and blindness, I acknowledge that I get a lot of support from my family and friends every day. Here I’d like to express my thankfulness for the help I enjoy, most of the time without even asking.

As we approach Thanksgiving in the United States, the timing seems ideal to offer my gratitude — though I try to be thankful every day, not just the fourth Thursday of every November.

I usually get up early every morning to spend time in prayer. One of those prayers is that I, along with others who receive care, have an attitude of gratitude for this service. I pray that we strive to be as patient and courteous as possible when interacting with our family, friends, and others who provide care. Most family or friend caregivers aren’t getting paid for their services, after all, and they don’t have to provide the care they do.

I also lift those caregivers up in prayer to have good health, patience, and strength. I ask God to help all caregivers feel blessed that they’re able to provide for us.

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The people who help me

I have many people who assist me, and I’m grateful for all of them. However, I want to give special thanks to my wife, Wendy, and my daughter Jill.

Wendy and Jill live with me, and we all perform a balancing act: While I try to do as much for myself as I can, I count on them to handle all the cooking (I do my own microwaving, but that’s not really cooking, is it?), 90% of the cleaning (though I still do the dishes), pay the bills, mow the grass, take out the trash, do the laundry, and much more.

Since they don’t let blind guys drive, Wendy or Jill handle that when we go anywhere by car. They’re also called upon daily when my computer won’t talk to me, wires need checking in my recording setup, and I drop something I can’t locate with my foot. Last evening, in fact, we played “298-Pill Pickup” after I dropped an economy-size bottle of acetaminophen.

I’m also grateful for the help I get from my son, Ryan, and his wife, Danielle. My daughter Nicole and her life partners, Lindsay and Josh, are also there to help when I need them. Of course, my brother Tim and his wife, Diane, have been there to help for most of my life, as have my brother Ron and his wife, Judy. My entire family has always been a blessing for me.

While Wendy and Jill handle most of my transportation needs, I want to acknowledge a few others who’ve joined that team since my move to Pittsburgh.

Carol and Dave Huff take me to play music at a senior facility once a month. Richard Bignell, the vicar at First United Church of Christ (UCC) in Millvale, where Wendy and I attend, is not only taking me to play music at senior facilities twice a month, he’s also started to join in, adding some great percussion. I’m also grateful to our congregation’s music minister, Gary Filbert, who gets me to church for practice every week and picks me up for church on Sundays when we need to get there early to rehearse.

Community caregiving

I’m grateful that the other congregation members at First UCC have gotten more comfortable being around a blind guy in a wheelchair over the past several months. They’re often there to help with doors when Wendy and I arrive at church. If I need a push to the restroom and Wendy’s not around, most of the folks at church are willing to jump in to help, especially now that they know that I don’t need their assistance once we get to the restroom door!

And when a bush was partly blocking the sidewalk outside the handicapped entrance, catching me in the face every week as we entered, it was pruned without my having to ask.

I mentioned a good Samaritan who helped us out when Wendy was struggling to push me as we left a Pirates game awhile back. Over the past year, I’ve been blessed by many such random acts of kindness. I’m thankful for each and every one.

Despite my FSHD and other disabilities, I feel very blessed. I’m grateful this Thanksgiving and the whole year through. Count your blessings, my friend! Despite your problems, you’ll find them if you look for them!

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.