By Susan Seabrook

Susan Seabrook is a wife, a mom, a sister, and a caregiver for her mother living with ALS. In honor of her mother on this Mother’s Day, she is sharing her family’s personal story, their journey with ALS and many of the moments she cherishes most.

The silence is deafening in my car after I drop off my youngest at pre-school. Normally, I’d hit the hands-free call button on the steering wheel and say, “Call Mom”. These days my mom doesn’t have much talk left in her and I know it’s important for her to save her voice to express her needs for the rest of the day. The drives alone in the car are my hardest moments; I’m trapped in my own head with nothing but my sadness and anger toward this devastating disease — ALS. I cry a quick, ugly cry and then force myself to remember that she is still here. She is still fighting to make every moment matter, and so must I.  

My mother was born in the 50s to two hard-working parents in a small town in upstate New York. She is the youngest of three children, married her high school sweetheart, and went on to create a beautiful life having two kids of her own — me and my younger sister. She was born to be a mother, a nurturer and caretaker; she gives everything of herself to everyone she meets. Friend to all, enemy to none. All of my childhood memories include her as she never missed a sporting event, concert, recital, bus stop pick-up or a family meal. To say she is the heartbeat of our family is an understatement.  

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Much like my mother lived for us as children, her heart now beats for her 5 grandchildren. I already see the best parts of her in their young personalities. While ALS ages her physically, those little faces keep her soul young. As I write this, I hear her trying to clear a cough that seems to be stuck in her throat. My father is most likely setting up her cough assist. She just had a bad choking fit, the result of her swallowing muscles weakening. We thicken her drinks and she now has a feeding tube as the risk of aspiration was too great. She cannot walk without major assistance and even then, can she only manage a mere few feet. Toileting and showering are very difficult and are a no longer a solo effort. Her hands and arms are weak, and she needs help dressing and meeting all of her self-care needs.  

We struggle to watch mom lose her strength. It is difficult to see the first hand we ever held struggle to hold a pen or a cup. Even now if I close my eyes, I see the way her hands used to be. They were strong and sturdy with surprisingly dainty nail beds. Rarely getting a professional manicure or using a nail file, her nails always held a perfect shape. Gentle, yet strong, much like her personality. Those same hands moved my sister and I into every dorm, apartment, or house we ever stepped foot into and let me tell you —that list is lengthy. They unscrewed the tightest jar lids and washed every dish after family meals. They folded countless loads of laundry, even now she still tries to help by matching the mounds of partner needy socks. These hands quickly scratched the peskiest of itches on your back. Quite often, they held the winning hand of Rummy, and wiped away the happiest and saddest of tears. These hands are my mother’s and these days I think about how much I soon will miss them as this disease progresses.  

As her daughters, perhaps the hardest part in this ALS journey has been watching her voice disappear. They say as babies we know our mother’s voice; it soothes us even in utero. It may be muffled or unclear, but it is a constant presence. I know this to be true, her voice has always been our guiding compass. That strong voice has encouraged and directed us. It has laughed and cried with us. It has cheered us on and picked us up as it has countless others. My sister has said that what she will miss the most is going to Mom for advice; the advice only a mother can give. While our mom isn’t using assistive technology to help her communicate just yet, she will start soon. We struggle to understand what she’s saying as does the rest of the family.

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I think this difficulty in communication is currently hitting my oldest child the hardest. She is only twelve years old and I’ve seen ALS on her google history more than once. She tries to understand but there is no delicate way to explain this monster of a disease to a child. There is no G-rated version or even PG-13 for that matter. So, we speak the truth while parental guidance may omit some of the details. For now, I video silly things, the little moments, and save these treasures because our world isn’t whole without the sound of her voice.  

We talk of trips and plan events. We know they may not happen, but we hold onto hope that the medicines she struggles to swallow each day will give her more days, more time with us. We pray that there are breakthroughs in science to save her and countless others from this terror - ALS. While we know her body is slowing down and her muscles are deteriorating, we know just as well that we still need each other.  

My favorite mornings are sitting with her at the kitchen table. Both our hands are wrapped around a familiar coffee mug. The smell of breakfast still lingers. The room is filled with sounds of her grandkids laughing (or fighting) in the next room. She looks admiringly at my father. It’s as if her whole body is smiling. In that moment, there are no weakened muscles or destroyed nerve cells. There are no hospital beds, wheelchairs, feeding tubes, breathing tubes or ALS. There is no sadness. ALS has not yet stolen her smile from us, and I’d like to believe it never will. I pray I remember her smile for all the days of my life, and I hope my children remember it throughout all of their days as well. That smile grounds me, it keeps me safe, it keeps me happy. It is the sun, the moon, and the stars. That smile is my home; it is my mother.  

Special thanks to Susan Seabrook and her family for allowing us to share the story of their personal journey with ALS.

Photo by Karrie Davis, karriedavisphotography.com.

This month only all gifts to the ALS Association will be doubled – up to $25,000 – thanks to a generous match from Philips Respironics! Please, double your impact and donate now.