A Letter to You, Dad

Do you remember that old song you used to sing to me, Dad?

You know which one I’m talking about. The Good Old Summertime, I believe it was called. I have no idea who sang it and am unfamiliar with most of the words except that one part, that one line that you changed a little, just for me. “You’ll be my tootsie-wootsie in the good old summertime,” you would sing while strumming your guitar as you held me on your lap. That was me. I was your tootsie-wootsie, your term of endearment for your youngest child and only daughter.

Everybody in the family nicknamed me Toots because of that song you sang. I hated it. I cringed every time someone called me by that tag, but I couldn’t get rid of it. It stuck with me all through childhood and my teens and even followed me into young adulthood. Eventually it faded, just like a lot of things naturally do. The only person who still calls me that is my brother Rob, your second son. He doesn't use it very often anymore more, just occasionally when he's in a particularly good mood or feeling nostalgic. Looking back now, even though I couldn’t stand it at the time, I can’t help but smile when Rob calls me Toots. It is a cherished memory of childhood and a much-treasured reminder of you.

I don’t have a lot of memories of you from my childhood to speak of, really. As you know, I was pretty young when you and Mom split for the last time. The souvenirs I have stuffed in the memory chest of my mind that include you are rusted and fading more as the years go on.

I still hold on to the best ones, though. I remember a few Christmases together when we all went as a family to chop down a tree, and I remember jumping in the bed with you and Mom to let you know when Santa had arrived. You probably weren't happy about that, as it was most likely just a couple of hours after you both had tucked in. You never showed it, though. You got up to watch us open our presents and acted just as surprised as we were about what the jolly old elf in red had left under the tree. I recall fondly, that big stuffed Easter bunny you gave me. It was as tall as I was, and I slept with it every night. I think back on proudly showing you my report card from school and some of the little pictures and cards I made for you and Mom. Mostly though, I remember that song – our song.

Unfortunately, I also recollect when you left home and moved to Toronto. Visits with you were few and far between after that, and I got used to not having you around. I remember when you came home one time, and you had that mustang convertible. I loved that car. Sorry to say, but at the time, I was probably more excited about that car than I was about seeing you. It was just as well, though. You took us for a drive up to Signal Hill in that Mustang. I must have been only ten or eleven years old, but I was proud as a peacock to be in that car with you. No time later, you went back to the mainland, and the car was gone with you. It would probably be a full year before I saw you again.

Things changed after you moved away. Because we didn't see you much anymore, our closeness began to fade. I'm sorry to admit that, but it's true. When you moved back home, I wasn't as interested in your visits. You and Mom had been separated for years by then, and I was no longer used to having you as a regular part of my life. I didn't care if you came to see me or not. Don't get me wrong; I wasn't mad at you. It wasn’t your fault. I was just a preteen who was more interested in hanging out with friends than spending time with a father I didn’t really know anymore.

I’m embarrassed to say that selfish attitude in me continued for a long time, much longer than it should have. I only saw you during my teen years at family gatherings or when Mom forced me to. Even into my early twenties, when I did make an effort to visit after your Huntington’s diagnosis, it wasn’t much more than half a dozen times a year. You lived in the same city as me, in a long-term care facility not more than a ten-minute drive away and I was too uncomfortable to bother.

I was uncomfortable with the fact that I felt I didn’t really know you, and even more so with your disease. I didn’t know what to say to you the few times I did visit, and I didn’t know how to react to the uncontrolled jerking motions your failing body was inflicting on you. Not having the courage or desire to deal with any of it, I stayed away. It's no excuse, I know, but it was the only one I had at the time. I will forever regret allowing my lack of courage to control me and my relationship with you.

Only after my grandfather (Mom’s dad) passed away in January 1988 did I finally grow a spine and force myself to deal with the discomfort. There was no more time to waste. I made a pact with myself to put in a genuine effort to see you regularly, and I did. Sometimes I was able to visit a couple of times a week, but for sure, it was every Sunday, without fail.

I loved those times with you, and as you know, it wasn't just me there. Amazingly, it was the first time in ten years that all three of your children were in our hometown at the same time. We all went to visit you together, and it was great. We had a lot of laughs reminiscing about old times. The boys, being a few years older than me, remembered things that I'm not sure I ever even knew. Sometimes, due to your condition, you had trouble getting words to flow properly, but one or both of my brothers could always fill in the gaps. Do you know what's amazing? The discomfort I felt from watching your uncontrolled movements disappeared after a couple of visits. I stopped noticing. I was much more interested in the smile on your face and twinkle in your eyes brought from having your children there with you. It was a beautiful time, Dad. I only wish we had more.

Six months after Pop passed, death claimed you as well. I was shocked and devastated. I'll admit I didn't know much about Huntington’s disease's progression at the time (I had yet to do the research that would come later), but I didn't think you were near the end of life stage. You still had control of your movements for the most part. You were able to talk with us and enjoy our company. You could eat and drink on your own. You weren’t bedridden. The official cause of death was a massive heart attack.

I was convinced it was my fault, sure that God or the universe or that nasty thing they call karma was coming to roost on my heart for all those years I ignored you. All those times I couldn’t be bothered to go out of my way to see you because I was too uncomfortable, or too selfish were coming for payback. I was angry. I was angry with the world, and even more than that, I was angry with myself. I had missed so much time. I was just getting to know you again as a person, just learning to love you again as a father, and then you were gone. It was heartbreaking.

I sang Amazing Grace at your funeral. I had never sung in public before, but I sang for you. You always told me I had a beautiful voice when we used to sing all those old country songs you loved at the family kitchen parties. Members of the family didn't think I could pull it off, didn't believe I had the fortitude to get through it without falling apart. Not only did I get through it, Dad, but I nailed it. You would have been so proud. Actually, I believe you are proud. I believe you heard me.

You’ll be happy to know that I did eventually come to terms with your death and stopped blaming myself. Years later, when I thought about getting tested for Huntington’s myself and did some research, I came to realize that your death occurring before end-stage was really a blessing in disguise. The universe wasn't punishing me. It was helping us both. It was relieving you of the pain and preventing my brothers and me from witnessing you going through what the Huntington Society of Canada describes as:

“When the person affected has little control over movement, is bedbound, unable to communicate, unable to eat and drink on his/her own and experiences severe chorea or extreme rigidity."

The boys had the genetic testing for the disease completed around 10 – 15 years after you passed. I’m happy to report they both got negative results. I was afraid. I’ve always been pretty good at math and knew each of us had a 50/50 chance of inheriting the mutated gene. I've never considered myself very good at luck, though, so I put it off. My logic, or lack thereof, was to wonder how it was possible that this horrible disease that had taken your life at fifty-two and had also stolen your father, your uncle, and even your youngest brother and his son would miss all three of your children. I didn't want to know. There I was again, letting my discomfort control me. You’d think I’d have learned by then.

I had to bite the bullet eventually and book the appointment when I found myself lying in bed at night, having my leg suddenly jump or my arm inexplicably fly across the mattress. Yeah, I know; calm down, Cathy. It's probably just Restless Leg or Periodic Limb Movement or something simple, right?

On the day of my appointment, I left work early and travelled to the hospital for my pre-testing interview. It was a ninety-minute session with a doctor and therapist that covered everything from the genetic mutation involved to the physical and mental symptoms, as well as an evaluation of my emotional preparedness to deal with the consequences of a positive result. I left that meeting with a referral to a therapist if required, suggestions to ensure my final wishes and insurance policies were in order and a requisition for blood testing.

I also left that meeting with a terrifying calm acceptance like I’d never felt before. I was scared, yet I was also relaxed. I knew I was getting a positive result. I knew I was getting a negative result. Needless to say, I didn’t really know anything. I wasn’t even sure I was going to complete the test when I stepped on the elevator and pushed the button for the lab floor, as well as the one for the main floor. I’d either get off at the lab and get it done or continue down to main and run like hell out the door.

I got off at lab, but you know already that. I walked to the reception area, handed in my requisition, and was directed to the waiting room down the hall. When I arrived at that waiting area, I saw something as I stepped into the room that stopped me dead in my tracks. There, on the wall directly across from the door, hung a whiteboard. On that board were written two words in large black lettering, two words that completely took my breath away:

Hello Toots

Let me tell you, Dad, it's a good thing I was alone in that room because when I saw those words, I answered. I saw your words, and I responded:

"Uhh, Hello, Daddy."

If there had been anyone around, they probably would have dragged me straight from the lab to the mental ward or, at minimum, decided that maybe I wasn't mentally stable enough for this test after all. There I was, standing alone in a lab waiting room, talking to words on a whiteboard.

Obviously, there had to be a logical reason why those words were written on that board. They had to have been meant for someone who worked there, right? Someone with that same nickname worked that same shift on that same day that I was coming to get tested for the horrible disease that killed my father, the father that gave me that name that I hadn't heard or seen in years before that moment.

Yeah, logic schmogic! I knew it was you. It had to be. You were there to give me support or send me a message, but I wasn't sure which. Were you protecting me, or were you saying "Hello Toots" because you knew we'd be meeting again soon? I smiled at those words on that whiteboard, and I cringed looking at those same words. Soon, the lab tech came to collect the blood, and once that was finished, I scurried out of that place as fast as my weakened legs could carry me.

When I left the hospital, I met Jerry (my oldest brother), who had kindly offered to give me a ride home after my appointment. I told him what I saw in that waiting room, and he was just as flabbergasted as I was. Ever the optimist, though, he was sure the message you were sending was that I would be ok. Turns out he was right. Two weeks later, we went back to that place to receive the results – NEGATIVE.

I should have known all along. There was no way you were going to let that disease take your only daughter. That horrible Huntington’s monster that ran roughshod through our family was stopped dead in its tracks. It took you away from us. It took your father, your uncle, brother and nephew, but there was no way you were going to stand by and let it steal your children or be passed on to your grandchildren. We all tested negative. The line stops here.

Approximately ten years have passed since I had that test, and as they say, life goes on. It goes on without shakes or tremors or any sign of the cruel disease that I once feared would control my future and eventually my death. It goes on with happiness and sadness, monotony and excitement, euphoria and grief and all the rest of the ups and downs expected with a somewhat normal existence. Barring some unforeseen tragedy, it will continue until what's considered a normal life expectancy, I guess.

I think you'd be happy to know that we won't meet again as soon as I once feared we would. We will one day, though. We will reunite when my time comes, and on that day, we'll have one hell of a kitchen party in heaven. I know you and Uncles Rob and David will be there to meet me with your guitars and a big bottle of rum. Dear cousin Kelly who just joined you last year, will be there with us as well. It’ll be the biggest and best kitchen party ever, so much fun that even the angels will join in the festivities.

Before the party gets too raucous, though, I need you to do me a favour. I want you to take out your old guitar and play a song just for me. It's an old song you know well from forever ago. Even though I'm too big to sit on your lap now, I’ll happily cuddle up by your side as you strum that old Fender and remind me again that I am once and forever your “tootsie wootsie in the good old summertime.”

Love,

Toots