My Dad, Tony, was not at the doctor’s office the day I was diagnosed with muscular dystrophy. This angered my Mom and she held that with her for a very long time. It didn’t bother me, however, because to me that was just the day I got a label for what was going on with my body. My Dad was there when it was important to be there, which was every time I needed help.
For example, when I was struggling with our front steps, my Dad put up an aluminum railing. He even put in an extra step that cut our big front step in half. I probably could have done without the bright yellow “warning” paint he put on our new half-step, but nevertheless he made it easier for me. My Dad also put a railing on our basement steps so I could continue to go down to his office and use his computer to program games and use the dial-up modem. I am a nerd because of my Dad.
When I needed help moving into my college dorms, Dad would make the drive out from Wisconsin to California in autumn and then again in summer on the way back. This way I could also have a vehicle at school and at home. He always wanted me to have a reliable car I could get in-and-out of easily and also wouldn’t break down and leave me stranded. One time my GMC Jimmy broke down in the middle of Nebraska when he and my uncle were driving it out for me. The truck could not be repaired. So my Dad proceeded to the nearest GMC dealer and bought a new one. After that school year, I started having some trouble with the pedals because my legs weren’t working the same. So naturally, instead of a simple solution, Dad traded that Jimmy in for my notorious “purple” Jimmy (the door said it was Radar Blue or I would not have agreed to this color choice). It was a newer model and the pedals were different. So that made three different cars for the first three years of college which of course led my friends to question why I was in the financial aid line with them. Even though he didn’t have a ton of money, Dad thought a reliable and comfortable vehicle was important for not just himself, by my my sister and me as well.
My Dad also flew out a few times to visit me in Hawaii. During these trips I promptly put him to work and he never minded helping. One time I put him in charge of loading up the U-haul to move me from one apartment to another. Another time I had him install a bunch of grab bars in the bathroom so I could continue to use the shower. In order to prove that his installation wouldn’t leave me falling flat on my face, I made him hang from the new shower curtain rod like a monkey to prove that it worked. It did.
Dad was also there on several occasions when I needed assistance getting up from a chair or off the floor. I was amazed he could lift me straight up off the ground if I’d fallen. Of course this meant he’d have to grab onto me in “bear hug” fashion and hoist me up, then wait a few seconds while my feet got flat on the floor. To anyone watching I am sure it looked like we were doing some intensely awkward dance. Needless to say these instances made me be more careful about my walking.
Even before muscular dystrophy started affecting me and before we even knew what it was, dad kept me active. He took me to buy my first real tennis racket and out to play tennis, even once the day after my muscle biopsy. He took me golfing, both mini and regular. He used to take me bowling on Saturday mornings on the way to his office to pick up supplies or check on a job. We’d also go down to my grandparents’ cottage and run around or go fishing. Dad also put an above-ground pool in our backyard so I could “exercise.” And of course Dad bought me a $100 pair of almost all-black Converse basketball shoes even though I was a bench warmer 99% of the time. It’s not how you play, it’s how you look, right?
When my sister and her husband and I bought a house in Wisconsin, Dad took the reigns and made my part of the space wheelchair accessible. He put in a wider entrance and totally modified the bathroom, turning it from a narrow walkway into an open space for my wheelchair by adding a new door and a few extra square feet. Dad also yanked out all the old carpeting and put in hardwood floors to make rolling around my place much easier. He would always tell me how much he was learning about each little task when I would ask how it was going. Clearly this became code for “I have no idea what the hell I am doing” but he was always a fast learner and he finished it and it works.
The number of things my Dad has done for me is countless. Outside of my physical needs, dad put me through college, taught me lots about his business, helped me become a good driver with a great sense of direction, exposed me to many different kinds of music, among other things. The list continues on and on.
I think one of the reasons my Dad didn’t go to the doctor’s office on the day of my diagnosis was because he hated doctors in general. He never went, even for himself. He didn’t have health insurance either, which probably didn’t make it any easier. Unfortunately, despite our constant nagging, he never went once started having trouble getting around, sleeping, and doing the things he had always done. But a few months ago, he woke up one morning and could barely breathe. My uncle rushed him to the hospital where he was diagnosed with pneumonia, intubated, and put on a ventilator. The doctors also discovered he’d had a mild heart attack and confirmed that he indeed had diabetes. The doctor later told him he probably had 15 minutes left to live if he hadn’t come to the hospital.
For several weeks he was there, in bed, sedated, and unable to communicate. He had tubes everywhere. A good day was one when his temperature was normal. We didn’t know what to expect. Every day on the 40-minute drive to and from the hospital I would wonder if he would be better or worse the next time I saw him. Finally, they decided to do a tracheotomy and wake him up. The results were amazing. Each day, he improved and in a few days he was talking again. Within a few weeks he was transferred to a rehab facility where he made tremendous improvements. Granted, he was not back to where he was before all this but compared to being stuck in a bed, we were thrilled. Despite the physical drawbacks, he had his old sense of humor and positive attitude.
My Dad made it home from the hospital just in time for Christmas. My sister and I spent his homecoming day getting him settled. She brought him groceries and I took him to Walgreens to get his medication. He sat in the car and fell asleep while I ran in, but nevertheless my sister and I were both helping out my dad in the same way he had helped us for so many years. We also brought my dad to our house for Christmas and New Year’s weekend and had a nice set of holidays. He was a pretty low maintenance house guest and my nieces loved having him around because it was the absolute best excuse to go downstairs and visit in my part of the house.
My Dad always thanked us for everything we were doing and had done to keep his personal and business finances in order while he was in the hospital. He thanked us for visiting him. He thanked us for having him at our house. He thanked us for making bank deposits and writing checks and filling out forms for the hospital. He thanked us for everything. He was a very grateful person in addition to being very generous.
My dad was home for about three weeks, looking forward to getting better. He had a heart appointment scheduled for January 17th. But sadly, my dad had another heart attack, this time much more severe, and died the weekend of January 15th.
His funeral was filled with nothing but positive memories. The prevailing sentiment was that my Dad was a giver. His friends recalled how my Dad would usually go up and talk to anyone, in fact that’s often how he’d met his friends in the first place. There were so many people there that day who had been helped by my Dad in one way or another and I heard a lot of amazing stories.
And so in remembering my dad and who he was, I remember him as someone who was there when it mattered. He might not have made it to every doctor’s appointment or therapy appointment or all my basketball games or award ceremonies but those days didn’t really matter to me. What matters is who shows up on the days that you need help and my Dad had 100% attendance.