What are the Options?
Like many mothers my age, I am at the dark end of a blind alleyway looking for the exit ramp from daily caregiving and into retirement.
I love being a mom and have been privileged to support and care for Mikelle’s mom. I am just being realistic. I can’t do what I have been doing forever. So, I search for ideas, solutions, and that elusive exit ramp.
So what happens to Mikelle if I can not be there? How do I replace forty years of knowledge and wisdom?
This is not my first trip into the alleyway.
I find myself in the alleyway during times of transition.
My first sojourn into the night was nearly forty years ago. I remember sitting awake in my waterbed…that lets you know how long ago, holding my infant daughter, r labeled recently as having severe, spastic quadriplegia, wondering how this beautiful girl would navigate the world.
Fear had such a steely grip on my chest I could barely breathe. Then, holding Mikelle in my arms, her chest rose and fell confidently. Somehow, she knew she was safe. At that moment, I knew the fear was more disabling than disability.
Mikelle deserved the best in life. I wanted to know how to provide it for her. But I didn’t know what to do.
How would I care for her, my son, and my marriage? Did I have the “right stuff” to see the answers in the darkness?
I learned to let go of what was and focus on what is. I learned to ask for help. These things don’t come naturally. My instincts, like yours, tend to tell us to hold on. Seek solid ground. Stabilize. Our minds deny what is real, keeping us from seeing solutions where at the moment, none appear.
Keep in mind the hardest part of change is letting go of the expected moment and embracing the unexpected moment.
I remind myself of the lessons learned then:
- Let go.
- Become flexible.
- Loosen up.
- Unleash my ability to respond. I am responsABLE for setting off on the new journey that lay before us as we find the exit in the blind alleyway.
I remember when Mikelle arrived from Korea as an infant, I expected to have a beautiful girl with dark eyes and hair running around the house chasing her big brother. That expectation changed in an instant upon her diagnosis. My heart sank. The invisible guidance, my desire for sibling fun not dashed, just changed. Mikelle still chased her brother in her wheelchair. They adapted and came up with their version of the tag.
Change took me to places I didn’t think I wanted to go—and I love the place I am in.
Here is the reality of our situation
There is no exit for aging parents to confidently move on to the later stages of life with the assurance that their loved ones will maintain the quality of life they have now. However, who will do the hard work of navigating an illogical, overly complicated Medicaid system and establishing deep relationships with valued partners, ensuring Mikelle’s complete and successful inclusion into her community? Yet, policymakers and funders believe we will live forever because there is no plan for our replacement. At this time, staff turnover and shortages abound. Currently, the economics does not support sibling support to replace us.
This blog is Part One of a series. Who knows how long it will be? The next installment is a testament to love posted on our February 2023 post.