SB stories

I’m perched on a balcony above the Guadalupe River in the city of Kerrville, about two hours away from the chaos of my home in Austin.

Nature and thought entwine here as I watch an egret directly across the river from where I sit, searching for fish and salamanders hiding in the river’s reeds.

She’ll take off soon flying just inches from the river’s glassy surface, teasing a dip of her wings. On a sunny day, you can see her reflection just beneath her, as if there were a second egret gently guiding her path.

As I watch, I’m realizing there is something more to her flight - something I’ve longed for.

She has confidence that her ecosystem will deliver food and safety every day. She follows the same curve of the river and finds the same tree limbs for roosting. Above all, she has infinite room to soar.

It’s all I’ve ever wanted for my daughter Meredith – confidence in her environment and freedom to make her own way.

Meredith was born with cognitive disabilities that set her on a different course from birth, but they have never stopped her from finding happiness with friends and activities.

I always imagined her living at home forever, yet still having a full life of her own. My husband, Jim, and I were so sure of this that we built an apartment above our garage when Meredith was 16. We thought she’d get job training and be able to ride a bus and live her life to be best of her ability.

Meredith’s first volunteer job she found through her school was folding napkins at an Italian restaurant in our neighborhood called Gusto. It was a cozy setting with five or so six booths tucked around a circle of café tables draped in white tablecloths.

I would take her at 3 p.m. on Tuesdays. I looked forward to the camaraderie with the servers and the free cup of coffee. We folded, laughed and talked about the crazy restaurant business.

But after four months, Meredith made little progress and still needed my coaching to fold just one napkin. Despite my friendships with the servers, I knew we had to move on.

Tuesdays at Gusto’s was now a sweet memory. We tried other things, but it became my greatest irony that I had spent two decades arguing for inclusion for Meredith, while her happiness was in close friendships and hobbies, not venturing out into the big world with formidable challenges.

As an alternative, I took her teacher’s advice and got her on the list for a recreational program located in Austin’s Zilker Park. Indelicately referred to as day habilitation or |”day hab,” it was one of few programs available in Austin. For all its magnetic lure for young people starting careers, this city does an abysmal job for young people with disabilities.

Without job possibilities, Meredith started the rec program after she graduated and now had a place where she could learn to dance and do art and make a new friend in a safe setting. Although the program was designed for youths with disabilities, I was told my presence was still needed to get Meredith through her day. That wasn’t ideal, so I eventually found a wonderful caregiver to help out.

But just a few months into hitting a weekly routine at the day hab, COVID-19 happened and the program shut down. Meredith was at home again 24-7, and she was starved for something to do.

The pandemic made me realize that being present and enthusiastic for everything that brought Meredith bliss in addition to her personal care, like showering and fixing meals, was becoming overwhelming.

But something else was destroying me: the knowing. Knowing that I was nearly 60, and knowing Jim and I didn’t want to leave Meredith’s care a worry for Caroline, her younger sister away at college. We had no future plan.

The Search

Meredith was 24 now and we began visiting places with dorm-style living for people of all ages who have cognitive and physical disabilities.

We looked at group homes in Austin, but they didn’t have the one-on-one care Meredith needed. Much of the time, the group homes selected residents by ability, so you might find a home where all the residents got on a van and went to their jobs together. Others were differentiated by individuals with autism or those needing home health care for severe disabilities.

I found a set of group homes side by side about 45 minutes away that separated people by those who were sexually active and those who weren’t. That was a short conversation.

But there was one place south of Austin that we kept visiting, and it seemed like a good fit. It was a larger community of about 60 people, an activities director, and field trips. It was what Meredith needed, but I was still questioning my decision. Fortunately it would take a years long waiting list before we would be considered.

Three years later, we got the call.

I didn’t just cry, I blubbered with unchecked panic and fear once I understood Meredith had a room.

“They called,” I said, running into Jim’s study. “They have spaaacccce,” I said, as if I couldn’t comprehend the word.

“Who called? What are you talking about?” Jim asked.

I explained and he put his head in his hands.

“Oh my God,” he said. “What should we do?”

We weren’t ready to hear this news.

Flashbacks of teaching Meredith how to use a walker, getting through a major spine surgery and watching her sister defend her on a playground in elementary school filled me with fleeting snapshots of where Meredith had always been – here with us.

“Oh my God, Mom. What are you gonna do?” asked her sister Caroline, who was a student at the University of California, Santa Barbara at the time. “Should I come home?” she asked, somewhat bewildered but with a spike of maturity that astounded me.

“I don’t know,” I answered helpfully. “I need to think.”

Oh God, how can I let go? Meredith has defined the four of us in this family for 27 years. Every time we go out, every vacation and every meal has centered around our funny, highly engaging daughter. She has been the glue that has kept us together. The thoughts bounced around my head with one piercing conclusion: Who was I without Meredith’s daily needs? And how would I help Caroline be OK with such a decision about her sister? Jim and I would have a completely different rhythm. It was different from a typical empty nest. Emptier.

Ultimately the three of us decided we’d give the South Austin community a try. Jim and I sat down with Meredith and explained it was decision time. She asked just a few questions about going to Target for a new bedspread and where she would eat, but the final question slayed us.

“Who will take care of you and Dad?” Meredith asked.

“We’ll be OK, Mere, don’t worry,” I answered, trying to stifle my emotions. It was a funny and poignant question, exactly something Meredith would ask.

We moved in the last Friday in May. Jim and Meredith and I walked down the hall and turned into her room, finding empty cabinets and a bare bed all waiting to be made homey. I put on her new bedspread, which had a cheerful pink background with red ladybugs, and leaned her Mickey Mouse doll against her pillow.

Jim and I opted to leave Meredith on her own for most of the day, but we came back at 8 p.m. We talked about her first day and the beading she did in crafts, and she named a few of the residents she’d met at dinner. Miraculously, she let us leave that first night with a kiss from each of us.

We repeated this routine the second night, but after we talked about crafts and dinner, Meredith cried and we had to pack up her overnight bag and bring her home. It felt like a failed experiment, but by the fourth night, Meredith became confident enough to ask us to leave. We were relieved, but it would be a bittersweet adjustment.

Our house is indefinably quiet now. The landing at the top of the stairs is still, not bustling with comings and goings of sisters. Meredith’s craft room has been frozen since her last project four months ago. A paint set and SpongeBob figurines lie abandoned, as if waiting for her return.

Now graduated from UCSB, Caroline is getting ready to start graduate school in California and has firm roots in her indie pop band. So it only made sense when she came home for a visit that she and Jim, also a musician, would collaborate for a gig at Meredith’s new home. Though Caroline had always played keyboards and sang in her university’s a cappella group, it was a sweet new turn to see the two of them together on stage.

As they started, I watched Meredith beaming with every chord of the guitar, every word from the Ramones, Beach Boys and Willie Nelson. She was sitting with her new best friend and everyone was clapping. Caroline had accompanied her sister to dozens of events and been her lifelong advocate, but her sororal smile from across the room was different this time, an acceptance.

After the gig, residents filtered out and we had hugs with Meredith before she scurried down the hall for a new adventure.

I set my gaze on her as she soared past the common room, followed the curve of the nurse’s station and disappeared down the long hall. Beneath her, I saw the egret’s reflection.