Three years ago, my life underwent a profound transformation. I found myself hurrying from Washington D.C. to Cleveland in search of my older sister. Knowing she had developmental disabilities and was hospitalized, I faced the uncertainty of not knowing her location. That day, for the first time, I truly heard my soul urging me to support my sister no matter the circumstances. From that moment forward, I committed to fighting for safety, peace, and love, regardless of the challenges that arose.
I hope my story inspires you to heed your soul's call. Life may lead us down paths we don't wish to take, but sometimes our souls guide us in that direction. The journey may be daunting and filled with fears, but trust in your soul, believe in your safety and protection, and know that miracles await along the way. Ultimately, you will experience tremendous personal growth beyond your wildest dreams. At the journey's end, a beautiful rainbow awaits.
Allow me to introduce my older sister, Stacey. As a child, she had a bad virus that caused very traumatic medical issues. This led to severe brain damage and epilepsy. Growing up, she was my closest companion; being six years her junior, she was my big sister, and we shared countless adventures.
(In November 2020, just before her accident, we enjoyed a birthday dinner together.)
Our family lacked the skills to provide her with the support she needed to thrive, resulting in her placement in a state institution at the age of 18. This separation was traumatic for both of us, as we were left with no choice but to part ways.
I typically saw Stacey during the holidays, but I missed her deeply. As the years went by, our connection dwindled, and I often felt lost in how to reach out. As an adult, I began to rebuild our relationship through visits and sleepovers at my home.
Stacey's experiences in various homes have been challenging. She encountered both love and neglect, moving multiple times throughout Cleveland, Ohio.
In my eyes, Stacey has always been incredibly loving, patient, and kind, even in the most trying situations. Over the years, I struggled to find ways to help her. I saw the endless hope and patience she embodied, taking life as it was served to her.
When COVID-19 struck, I learned that she had broken her leg below the knee. Shortly afterward, I received distressing news from family that they had lost track of her for two weeks. This included her parents, the county, and her current provider's home.
Desperate to find her, I embarked on a multi-year journey of love, support, and rebuilding trust with Stacey. I made calls and eventually located her in a rehab center. I drove from DC to Cleveland that very day, only to find her having seizures. The nurse informed me that this was normal for her, as she had been experiencing them throughout her stay.
Stacey had not been receiving her epilepsy medication, leading to constant seizures, which is extremely harmful to her health. This marked the beginning of our fight for her dignity and proper care.
I became her advocate, addressing her needs. It was a continual uphill struggle.
From my experience, approximately 10% of people treat individuals with developmental disabilities with the dignity and respect they deserve. It is an ongoing challenge to remind others that this population consists of human beings deserving of the same quality of care as anyone else. I do not blame the 90% who don't treat people with developmental disabilities fairly or with respect. Often, this population is shunned to the shadows of society, and do not interact with their communities. Over time, they have fought for their rights and have been more integrated into the community. We need more education and advocacy for others to see the joy they bring to their communities.
(In Spring 2021, Stacey was in her first nursing home, just a month after leaving the hospital.)
Believe me, there were moments when I wanted to scream! Yet, instead of losing my temper upon discovering her inadequate care, I took a deep breath and calmly explained her needs. It became evident that Stacey required an advocate around 80% of the time. Consequently, my life transformed as I took on the role of her advocate for over three years.
Stacey's health is incredibly fragile, and caring for her as a whole person is crucial. This advocacy was necessary, as many healthcare providers did not approach her care holistically. Moreover, nursing homes are often severely understaffed, resulting in inconsistent care for her daily needs. I am grateful for the county support staff and clinicians who genuinely care for Stacey and have been instrumental in our progress.
Throughout this journey, Stacey faced hospitalization three times due to respiratory distress, spending several weeks in the ICU. While a high-functioning adult might have been able to heal and participate in physical therapy, her condition hindered that level of self-motivation. Coupled with inadequate care and restricted resources, her health saw significant fluctuations. On two separate occasions, she was intubated in the ICU, with her survival remaining uncertain.
In March 2024, she found herself in the ICU once again. The doctors approached me with the grim prospect of deciding whether to proceed with a permanent tracheostomy, as her survival hung in the balance. It was a life-or-death choice. I prayed and told the doctors that Stacey had fought for her life for as long as she could remember, and now more than ever. We had been searching for a safe home for her within the community for over two years. I insisted,
"She is going to live! Do everything possible to ensure she makes it through." And she did. It was a miracle in my eyes.
Now, after years of navigating the system, and thanks to a small circle of supportive friends and family, Stacey resides in an excellent nursing home. She has friends visiting her regularly, and her health is stable and improving.
Love has triumphed! Stacey has triumphed!
(This year, we celebrated her 51st birthday. Here’s a snapshot of our small party at the nursing home, featuring her two friends and my emotional support dog, Indigo.)
This journey stands as one of my proudest personal accomplishments, driven by love and faith in a greater power to achieve stability and peace.
For the first time, I believe Stacey is in a protective environment where she can heal and find serenity.
Thank you for taking the time to read this story. I share it to illustrate that life can throw unexpected challenges our way, and it's perfectly acceptable to embrace them. Many might claim they don't have time for such commitments, and perhaps they don't. I chose to dedicate my life to this cause, which I view as a significant achievement. I've learned so much about myself and the world around me. My bond with my sister has been restored through love after so many years, and I now understand that the bigger picture is what truly matters.
Yes, I made numerous sacrifices, and my career progression was affected. Some have judged me for taking time off work for this, questioning my professional capabilities. However, none of that holds value to me, as I am aware of the complete story, and I am at peace with prioritizing something more significant. I have faith that my professional life will flourish now that Stacey is stable.
Sometimes, we must take an unanticipated detour in life, and I will never regret the day I embraced her profound love. A hug from Stacey is the purest love one could ever experience. She has countless guardian angels watching over her through all her life’s challenges, and she remains an inspiration to me.
Thank you once again to everyone who has supported us on this journey! Much love to all; this is a monumental achievement, and we feel incredibly blessed to be alive.