A Tribute To My Mother


As with all things in life - there is a time before and a time after.

A time when feet could wildly move when they danced along to The Rolling Stones. A time when hands could firmly pull close when holding someone dear. A time when carelessness and reckless abandon could be attributed only to the effervescent spirit that declared such notions. My Mother, with her big, cobalt eyes that even Poseidon grew envious of, and her bold pink lipstick that perfectly complemented her milky complexion, was as graceful, as beautiful, and more importantly - as free as they come.

I mostly know these things about my Mother in the memories of others who are kind enough to share them with me, how she was a lover of all, passionate, and strong-willed. All traits I hope someone would think to attribute to me someday.

Nevertheless, I never knew my Mother in "the before." I only knew her in the after, and so in the after is where my story begins.

To start, I always say that I was my Mother's best mistake. I was not planned for. My Mother hadn't even been dating my father when she found out she was pregnant. I was truly, an unexpected gift. Despite all that, the early years of my life were filled with happiness, family, and an insurmountable amount of love. My Mother and I were unstoppable.

Alas, as life likes to remind us constantly - you cannot sustain perfection. The unstoppable duo was stopped. Like many other stories about HD, my Mother was adopted and unaware of any inherited diseases. All she knew, and my aunt (her sister), was that something wasn't right. When I was five, I would come to understand this as, "my mom is sick." Not too long after that, I would come to understand it as Huntington's Disease. My aunt was quick to do research, to get involved, to join the conventions, and do her best to grasp something about this unheard-of disorder.

Reflecting back, I am so grateful that she informed me and got me active alongside her so that growing up, I never was ignorant to the changes that my Mother was going through. Especially when so many other families in the community thought I was too young. But the harsh reality was that my Mother was sick, and the even harsher reality was that yes, I was young when it happened. But the power of knowledge is what inevitably kept me grounded in all of it. I never let these "differences" keep me from treating her as someone who is disabled. If anything, we danced just as much, we sang (horribly) just as much, and we loved just as much - if not more.
But, like the crocodile in Peter Pan - time is always chasing us, and time certainly caught us sooner than we would have ever liked.

At the age of ten, my aunt made the hardest decision she ever had to make, and that was moving my Mother into a nursing home. She needed more care than either of us could ever provide, and the devastating truth was that my Mother was not getting any better.

I consider my teenage years as the limbo between my own before and after. Where I tried to pretend my life was some semblance of 'normal,' an illusion only barely held on by the perfected smile on my face. During the day, I was like any other average girl, but at night, I was terrified. Of what was to become of my Mother. What was to undoubtedly become of me. I had always known I wanted to get tested - I couldn't decide my life, my future without knowing my diagnoses. But my impending eighteenth birthday also meant knowing that I could face the same fate.

What did I ever do to deserve this? What did anyone do to deserve HD?

I stumbled through the years, preparing myself for the inevitable Summer I could test. However, while I had mentally braced myself for my results - what I had not prepared for was my Mother's passing during that same time. In her final days, she was unable to swallow, unable to move, and weighed a total of 65 pounds. The last time I saw her, her Journey CD had been playing in the background while we talked of stories, talked of music, and talked of how much we infinitely loved her. We even carried her outside for one final moment so that she could feel the sun once more. And even through the pain of HD, I could truly see only peace on her face. She was ready to move on.

As quickly as my next breath - she had gone. And even quicker than that - I found out I was positive.

I want to be honest with myself and everyone who reads this. My mental state was turbulent. I tried to look brave for my friends and family, but every time I was driving my car, I wondered what it might be like to let go of the wheel and let it take me back to my mom. I didn't care half as much about being positive as I did about losing her. Thankfully, in that regard, I didn't have time to dwell in my misery or let my worst emotions get the best of me because three days after my results, I started college.

Leading up to it, I had enormous reservations about going. However, this ultimately was the best decision I could have ever made. It forced me to think about something other than my results. It forced me to be honest with myself about who I wanted to be and what kind of life I wanted to live. It forced me to face my fears and my truths and learn to love every part of myself. And it forced me to feel something I thought I never would again - happiness. Despite my Mother being gone, I found I could feel happy again.
This July (2021) will be ten years since my Mother passed and since I found out that I, too, have Huntington's Disease. Needless to say, it certainly has been a journey, one that at times I wasn't so sure I would survive. But I did - I survived. Furthermore, I came out on the other side better than I would have ever predicted. As I entered this world, I am once again surrounded by love - honest and true love. I am once again unafraid of what my future may hold, something I'd like to think my teenage self would be proud of. And I am once again at peace with myself, genuinely and wholeheartedly content with who I am and who I will continue to become. Something, I'd like to think my Mother would be proud of.

I still have a lot left to do with this life I have been given, including one day being a mother myself, and the only thing having HD does is remind me that not a single day should be taken for granted. Even more so, that time certainly doesn't wait for anyone, so cherish it and the people around you as much as you can while you have them.

To end this on something my Mother once wrote to me...

"Still I would like you to know that no matter what life holds, I do and will always love you and yes you will, hopefully always love me. If we can just hold on to that knowledge, we will be able to go through anything."