The Lesson You've Taught Me, Daddy, as You Fight Parkinson's Disease and Dementia


Dear Dad,

I’m writing you this letter to tell you what I’ve learned — what you’ve taught me. The powerful stuff, the stuff that resonates deeply and entirely. Some of it I know was intentional, while another aspect of it I know wasn’t. You didn’t ask to get sick or to be on hospice at 53 years young. Parkinson’s disease and Lewy body dementia began taking your life away from you nine years ago. Yet, you’re still hanging on. Your body has deteriorated to practically just skin and bones, you’ve lost all control of that body and the ability to function as any seemingly healthy individual should. I’m not sure if you know who I am, but I do know that you sometimes burst into the biggest grin when you hear my obnoxious, cackling laugh (I’m talking shaking the windows, shaking the doors, get-everyone-ear-plugs-stat laugh… you know the one) — and that is everything to me. Maybe that’s why you’re holding on, because you know we’re still here… I don’t know…

What I do know, however, is that I think about you every day, and while, yes, many of those moments fill me with sadness and longing, I’ve been teaching myself to reflect peacefully, happily and contently. Don’t get me wrong — even in those sad moments, love never ceases, but I have found there is a difference — a difference, at least, in my personal perception of how that love feels.

As I’ve been on a journey the last several weeks to find inner peace with myself, work with my own chronic illness and all that comes with it, learn to cope better with stress, honor and trust myself and my intentions, and to find happiness with where I am presently, I’ve gained some perspective. Love shadowed with sadness presents itself negatively — like love shadowed with anger, regret, heartbreak… you name it. There’s always some kind of negative connotation associated with that love. And I’ve realized, Daddy, that I don’t want there to be any kind of negative energy surrounding my memory of you. You bring warmth to my heart and a feeling of calmness to my mind and soul. It’s those feelings, all that good love, that I want to hold onto forever.

Sure, I may be crying as I write this… because it’s powerful. This insane path you, Mom, Lauren and I found ourselves on in 2007 is just that… insane. It has been the farthest thing from fair, just, or any rational or “normal” existence we hoped to live. But with that, your love has kept me afloat. And Dad, that is the most potent, influential, palpable, touching, beautiful, flawlessly incredible lesson you taught me. And it sounds so simple and obvious — love.

It’s something I’d forgotten, grieving you for all those years, watching you deteriorate in front of my eyes. It’s often easy to forget the good stuff. Over the past several years, I feel as if I’ve spent more time reflecting on the bad stuff, the icky times, the awful times (I wonder why that is?). But today, Daddy, I choose love over everything. I choose to remember that dorky ear-to-ear grin that crinkled your eyes, your tender, warm bear hugs, the silent yet wonderfully expressive look of adoration, support and pride on your face when I’d walk out at the end of a performance. Love, Dad, has been the greatest gift you’ve given me, and the greatest lesson you’ve taught me; really, the greatest gift and lesson we can all give to each other. Because with love should come respect, support, trust, encouragement, compassion and adventure (and boy, did we have our fill of that! River rafting, camping, traveling…) — things we all need to get through the day.

Positivity, too, follows love. The good stuff. And though it can be very difficult at times (challenging, in fact, to the nth degree), I’ve made a promise to myself, and now to you in this letter, to continue growing in this positive light and to spread the love you’ve given so very much of — the love I have been blessed to receive. The gratitude I have for you, Dad, is unending. Pure, wholesome gratitude.

Your love literally created my being and shaped me into the woman I am today. I feel strong because of you, I feel empowered because I have your love coursing through my body and soul. I will continue to smile for you, I will continue to laugh for you, I will continue to love with you in mind.

You are an exemplary man and a gift. And I’m honored to be your daughter.

I love you the most,

Your Maddie Claire Boo-Boo Bear

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