Celebrating the holidays since Gay’s transition to the next place* on October 1st had been difficult, as it is for many who grieve the loss of a loved one. As I celebrate my parents on Mother’s Day and Father’s Day, I have been reflecting on how their grief and loss is different from mine as Gay’s sister. We have spent the holidays or other times together reminiscing about Gay, our life with her, both the joy and challenges we faced as a family.
In those stories, and etched in my memories, are the lengths to which my parents went to support a child and person with disabilities and the personal sacrifices they made to give Gay a full and joyful life. Other families and parents with disabilities would often ask me what made me want to bring Gay into my home to care for her and how could they encourage that sentiment among the siblings of their child with disabilities. A big part of my decision was observing our parents for 46 years and the ways in which they managed and helped me manage the difficulties of having Gay in our lives (temper tantrums, showering and bathing on her schedule, really our whole lives designed around Gay’s needs – when to eat, how and where to eat, listening to music, watching TV, how, when and where we spent time with family and friends, the one or two vacations we took as a family, etc.)
Most of my memories come from the time living at our farmhouse in Ida, Michigan. However, as we have written these blogs together, I have also learned a lot about how my parents, and my Mom as full-time caregiver, navigated all the doctors, the educational systems, and fought hard to get Gay the appropriate education and support for her needs. Every morning for over 53 years, Gay had to transitioned out of bed, dressed, teeth brushed, fed, lunch packed and any materials for school (26 years at the Monroe Intermediate School District) or her community programs after, managed on her behalf.
When she arrived home, it was keeping her active, feeding her, and bathing her before she went to bed. My Mom gave up having a career, cared for Gay, and supported our family through managing our small farm and the family finances, sewing our clothes, and growing food in our garden. My Dad, worked the night shift at GM in Toledo 6-7 nights a week and yet would attend school events, assist with doctors’ appointments, and even volunteered on the intermediate school board.
And my parents included Gay in every event of or lives for example, attending midnight church on Christmas eve and going to see fireworks (Gay’s favorite, “BOOM, BOOM, BOOM” she would shout. Gay loved Katy Perry’s Fireworks song singing it with me in the van last summer, the Boom, Boom, Boom part of course). Gay attended the weddings of family members, funerals of loved ones, the movie theatre, went to church every Sunday, went to “prom” every year for over 40 years, and every school dance. If my Mom wanted to go shopping or to run errands, Gay went along. All these experiences required significant planning, timing of bathroom breaks, packing food or snack options that met Gay’s needs, considering clothing options that were age appropriate, curling hair (which tested Gay’s patience), finding the kind of shoes Gay loved that would fit her braces or making standing to use the toilet easier. All this and getting themselves and me ready for those events and activities, as well.
They also supported me and attended school events or spent weekend days, all day, at equestrian events, managing Gay’s needs, the horse’s needs, and my needs on those long 10-hour weekend days. They made time to attend father/mother or other family events with me and created time and space for me to be alone with one of them to go shopping or see a play or musical performance. We also spent most of our time on the farm together, caring for our animals, swinging Gay on a swing made just for her, cuddling our cats and dogs, and splashing in the pool, something Gay could do as well.
While our lives were not perfect and we experienced serious stress, anger, fear, and anxiety trying to navigate our family’s situation, there was always a tremendous amount of love in our home, all centered on this person’s life who absolutely and completely depended on us. Gay’s presence in our life challenged us to be better, to see beyond ourselves as individuals, to see the world and other people in it with a different lens. Little things mattered so much to Gay and in many ways, it was easy to bring her joy – making her audio books, bathing and dressing her in a favorite outfit, taking her for a drive, looking at the water on Lake Michigan, or sitting on the deck listening and watching the birds. As I grew older and my parents grew older, I had a strong desire to see Gay continue to be happy, content, and safe, to complete what my parents had started, to make sure they knew Gay could continue to live the life they had worked so hard to give her.
It’s only fitting that the three of us, with the kindness and dedication of Liz, DeJai, and Ashlei, and brief check-ins by hospice nurses, would support Gay through her final days with us, every minute, around the clock for 4 days. The grief of watching our special person leave this world has taken an incredible toll on us emotionally and mentally, and yet, it’s exactly what we. always wanted and planned for, to make sure Gay was safe, comfortable, and surrounded by love through the last days of her life.
On Mother’s Day and Father’s Day, even as we feel the huge hole in our lives with Gay in the next place*, I am grateful for and want to celebrate all that my parents have done for our family. Thank you Mom and Dad, I love you!
*The book “The Next Place”, by Warren Hanson, was a beautiful gift from my colleague Ann Hoffman, perfectly timed as we remember all that happened last year. I highly recommend it to others and thank you, Ann!