Deborah’s Story
A date that will always be engraved in my heart: September 11, 2021.
My beloved mother died and went to be with God a bit too soon; I'm grieving and will continue to until I see her again.
The past 11 months have been the hard. Grief is complex, individual, unpredictable, all-encompassing, overwhelming... By far, the passing of my mom is the most challenging thing I've had to endure beyond words can ever express. Yet, I'm choosing to embrace grief the best I can for it's also my forever love for my mom.
My story of caregiving began in 2018 when my mother was diagnosed with a rare neurological disease, called Multiple Systems Atrophy. I was a sophomore in college, lost & disoriented by the devastating news. Starting from the end of 2016, my mom started to gradually display unique symptoms, such as excessive random laughing & difficulty with balance/coordination. I was in and out of the process of finding an official diagnosis because I was home only on the weekends from college. This inconsistency intensified my confusion and guilt. I learned early on that caregiving for a loved one requires a TEAM; I was so thankful for my brother and dad who took the reins in seeing primary care physicians & specialists to receive endless imaging of the brain and testing done.
It's not easy to be correctly diagnosed with a rare illness that attacks multiple systems of the body. Oftentimes, patients are first diagnosed with Parkinson's only to find out they had Multiple Systems Atrophy all along. For this reason, our family was grateful for the early diagnosis. However, it does not take away from the weight behind what this disease was about to unfold for my mom and my family. Multiple Systems Atrophy is a progressive disease that impacts the autonomic functions, like breathing, muscle control, regulation of blood control, and bladder function; it ultimately deteriorates a part of the brain that controls all the essential functions of a human. It's debilitating and horrific. Period.
Finishing college was a journey I would not have been able to do apart from Jesus. His presence was truly my life line when my world flipped upside down, when friendships became almost impossible to navigate through, when my role at home shifted, when my mom was suffering, when I had lost almost all hope. I didn't have the framework to walk through illness with my community, nor did I have the energy to share my journey for what it was. I was busy trying to adjust, adapt, and accept my new reality. After graduating in 2019, I felt more resilient & committed to transition from a part-time caretaker to a full time one for my beautiful mama.
My dad, older brother, and I became mom's full time caregivers. Her condition was gradual for the first 2 years until it progressed very rapidly during the pandemic. By the end of 2020, she needed around the clock care for day to day activities that we often take for granted: bathing, feeding, toileting, shifting positions when lying down, and dressing. Her health declined so much more quickly than I had anticipated & ever wanted. In the 1 year of intense caregiving, I have loved deeply and been loved deeply by my mom. I was probably not a good friend, constantly stressed, stretched so thin almost to the point of breaking, & burnt out everyday, BUT I would never replace that season of caring for my mom for anything else. It is in that year I found an intimate relationship with my mom, felt so aligned to my purpose, & gave it my all in loving someone.
If it means I can be with my mom again physically, I would say yes to go through the grind of caregiving again in a blink of an eye. That is how much I see caregiving as a labor of love & how dearly I miss my mom. The future gets too daunting to think about when I look far ahead, realizing I won't have my mom by my side in many of my milestones: stabilizing in my career, getting married, having kids, etc. My mom's death isn't just something of the past, from September 2021, but it's a present thing; I will have to relive & ache at her absence through every new event, relationship, & celebration. I didn't expect to be going through my 20s with these life circumstances, lessons, & grievances, but I'm also so thankful for the growth, perspectives, support, & resilience that's being built within me.
With almost 1 year coming up since my mom passed away, I am still grasping my new reality, wrestling with community, enjoying the joys of life, bringing to light grief and death in more conversations, adapting, processing, remaining hopeful, healing... & mostly missing my mom. I will never get over missing her in the years to come, so I hope my grief is never overlooked, but seen as a part of who I am & am becoming.
I've been trying my best to be transparent through the past 6 years of my life, but it's never been easy. Vulnerability takes risk and is costly, but it's worth it. I experienced the need for vulnerability & connection in this last year like never before, so if you've read this far... I want to say thank you from the bottom of my heart.
