Each month The Arch Foundation publishes our Caregiver Corner series where we will share a window into the journey of a caregiver. Our hope is to share these #brutalybeautiful lives and stories to educate, bring awareness, and help build our community of exceptional caregivers.
If you have a story of your journey of being a caregiver, we would love to share it with our community. You can submit your story for a chance to be published through our contact page.
Here is Debbie & Grace’s story…
The hardest part of being a caregiver is the long term management of running on empty, being sleep deprived and at the same time having to perform critical and potentially life altering cares that keep your loved one alive. Our family in many ways is like any other, but there are more chores and longer to-do lists. Just as other families get into the routine of who cooks dinner and who washed the dishes, we also do those things but with an additional few “roles”. Before bed I get Grace undressed while my husband puts away and plugs in her power wheelchair. I put her on a ventilator and he changes her urinary collection bag. The days are long and the nights are short. Most mornings I feel like I just put my head down on the pillow to sleep.
What is harder than the day to day task is the emotional toll: I wake up with my heart beating fast, an adrenal overload from memories of living in the PICU, of alarms going off. I wake up to the sprinklers as if her breathing stopped, as if the ventilator alarms were going off and it takes prayer and meditation to calm me back down only to then be awoken by an actual alarm. It may be the pulse ox that fell off or something mild, but my heart still hurts as if it were the days we almost lost her.
I hear songs Grace used to play and I want to cry, but I dig my fingernail into my thumb and distract myself. Grace's fingers danced on the strings when she played guitar. I mourn the thousands of hours my girl practiced. She started with the Suzuki method on piano, progressed quickly on cello, just could’t get enough and added guitar. Her senior year I heard her singing next to the piano practicing for Madrigals, an hour later I'd hear Liszt on cello and later that night I’d hear her strumming and picking on one of her guitars. Everything from Chopin on piano to the John Butler Trio on guitar sung through our walls. The chords still resonate. She practiced hours upon hours till her sister eventually got annoyed. Sometimes I catch a glimpse of an old photo of Grace as a ballerina, I avert my gaze as it is a painful reminder of the loss.
The loss is great, but the extraordinary ballerina she was, the graceful pianist, the rock star was far less than who I see now. Her beauty shines through her paralyzed limbs, her soul sings through her mastery of daily life and I as her mother, caregiver and biggest fan fight daily to see and experience this Love.
Driving in the van on our way to SBCC, Grace says “oh my gosh it’s so beautiful, I am the luckiest girl in the world!” I turn toward her with a 1/2 smile, has she forgotten she cannot move her arms or legs? She is blessed and a blessing to care for. She reminds me to open my eyes to the beauty that surrounds us, to feel the love, to find the gratitude no matter the obstacle, the loss. She reminds me that Love is greater than all things.