Terena Scott's Blog, page 3
August 4, 2024
It feels like when she went to preschool
It felt so much like when Rhia started pre-school.
But this time, it was the first day of her day-program.
I came to support communication between her and the staff using my basic, adapted-for-Rhia, Sign Language. She sat in the art room with several other Disabled adults and three aids. When Rhia saw me, she held out her arms and smiled. Holding her tight, I felt her relief as her muscles relaxed. Then we strung colorful beads onto a plastic thread to make a necklace. She chose beaded letters to say “Rhia” and “Mom.” I hoped she’d give it to me as a precious memento from her first day, like when she gave me a drawing she’d made on her first day of preschool.
The instructor worked with Rhia beading, learning the signs for colors while I interpreted. When Rhia became fatigued, we were given a tour of the center. Rhia briefly joined a dance class, waving her hands back and forth to the rhythm while sitting in her wheelchair. I kept interpreting, supporting Rhia as she met the staff and other adults in the program.
Rhia stared into space, becoming unresponsive a few times during our tour, a sign she was overwhelmed and overstimulated. It looks like she’s having a seizure but she’s not; these episodes allow her to shut off her senses to process sensory information she’s already gathered. It can last twenty seconds sometimes, but when the sensory overload passes, she reengages with a smile.
Back in the art room, we finished her necklace. Then she said loudly, “I remember this place. We came her to meet new friends!”
“You’re right. We did,” I said, nodding.
“I know.” She grinned.
Then I asked, “Are you okay now? Do you want me to stay more, or should I go?”
Rhia glanced at the table where colorful beads were scattered, then looked back at me. “I’m okay. You can go.”
Before I left she asked when she’d see me again and I promised to take her to lunch on Saturday. I then realized that she’s now okay when I’m gone, just as long as she knows when I’ll be back.
Walking to my car, I felt tearful and amazed, just like I did when she started pre-school. On that day, 26 years ago, Rhia took her teacher’s hand and said, “Bye, Mom, ” then walked to her classroom without looking back. I had walked to my car and cried in the parking lot for an hour.
This time, I wiped a few tears from my cheeks, then I took myself out for a celebratory mocha, feelign more awe than sadness. Rhia has adapted to her new life better than I had imagined. She is an independent woman now who still needs help to live safely but is perfectly capable of making her own choices and expressing her needs. She is learning to trust her new caregivers and teachers. And she knows I have her back.
She knows she is loved.
She’s okay now.
In time, I’ll be okay too.
July 23, 2024
I may have underestimated how hard this would be.
I thought it would take just two months for me to find some kind of balance and for Rhia to settle into her new life at the group home.
What is two months of respite compared to 29 years of caregiving?
Nothing.
Two months barely adds up to one breath of quiet in a lifetime of long nights and chronic stress. I still twitch at sounds in the night as if I need to jump out of bed and help her. I still don’t know what to eat for dinner or even when to eat it because my natural body clock has been dominated by Rhia’s needs. And Rhia is being forced to adapt to a new schedule at her new home, one that encompasses a group of women rather than just her own wishes.
Neither of us are adapting quickly.
There are days I feel the entire weight of all the grief I rarely allowed myself to feel in 29 years crush against my lungs. I hold one of her Princess cups, trying to decide what I should hold on to and what I need give away and I weep as if she’s vanished. She’s hasn’t vanished. She moved twenty minutes away. I use to cry for her expected death but today I’m crying because she’s moved out into the world to live her own life separate from mine. It’s a wonderful, beautiful thing! I am celebrating as I wipe away tears.
I understand this is how it feels to become an “empty nester” for the first time. Now I understand it will take more than two months to recover from this transition. This change is probably the most ordinary life event Rhia and I have ever experienced.
How long will it take for me to stop feeling like a kite with a broken string?
A friend visited Rhia today and she messaged me to let me know that Rhia was playing a keyboard and singing at the top of her lungs. I am so glad to hear that, because if Rhia is still singing then I know she’s okay. She may still fight against the changes in her life but she is beginning to adapt and find happiness again.
I’ll find it again, too.
But not in two months.
Maybe in six months?
July 7, 2024
Energy Depletion
(image from ThoughtCo )
Since Rhia moved out, all I want to do is sleep. My skin feels heavy stretched across my frame and sometimes my muscles tremble as if I’ve lifted hundreds of pounds of iron. Everything aches. It’s clear that I’ve been running on adrenaline instead of energy.
Energy, like particles of fire coursing through my body, colliding, surging, expanding, swirling together until enough heat is generated to fuel my heart and head. Energy needing more fuel to burn bright, like a star burning hydrogen in the darkness. Even stars have a lifespan. Energy never disappears, but it does have limits. It either has to be transformed or transferred. I transferred most of my energy to my daughter so that she would thrive, then what energy was left for me was transformed into a heavy, languid, slow moving force that longed for rest. Adrenaline then provided the fuel so I could work.
Did I physically wear out before I mentally burned out, or did emotional exhaustion start the cascade? I suppose it doesn’t matter which came first, mental health depletion or physical depletion, it all leads to energy collapse. To a longing for quiet and rest.
I want to run away and sleep in a large bed near the ocean until my body fully heals and the beating of my heart relaxes to a peaceful rate. I want time for the energy in my body to return to its vibrant velocity before I go back to daily life. I want the ache in my muscles and in my spirit to release so I can breath deeply again. I want to stop wondering if my energy will ever come back.
Transfer or transform, that is what energy wants to do. Through the process of transformation and transition, energy changes, expands, shrinks, moves, radiates and sings. It is powerful but requires gentle care and attention. It can be used, even guided, but it cannot be forced. It can be shared with others but cautiously. Don’t give your energy to people or situations that demand all of it. Trust your body. It knows when your energy is being drained too deeply.
I didn’t know this before. I have no regrets about giving my energy to my child, but I wish I had given a little more to myself.
June 23, 2024
Allowing my child to be angry with me.
Rhia doesn’t understand
For two weeks she has glared at me and repeatedly said “I want to go home.”
She complains about the way her new caregivers provide support because it is different from how I supported her. She doesn’t like how they wash her hair or make her bed. She wants me to show them how I do things because I do it “right.”
I talked to them and wrote everything down, from how she brushes her teeth herself to how she likes using a nonslip mat under her coloring books. But ultimately they will all have to figure out how to work together in her new home. I don’t live there.
Rhia’s anger simmers in her dark blue eyes. Occasionally it bursts out in shouts and tears. Once it exploded with a fist. I take all of her rage because I am the cause of it. I know she feels powerless. I’ve sent her to live in a group home so she will have more independence and find her community of friends. She will also have more care than I can provide now.
Rhia lives in the now, today, so hopes for the future are meaningless. Today she is unhappy. That’s all that matters. Telling her in time she will feel happy again is like telling her someday she’ll grow wings and fly. Metaphorically it’s true, but Rhia will just glare and say, “I’m not a bird!”
Rhia’s anger still simmers but the outbursts are less heated. She smiles more and doesn’t cry when I leave. Perhaps the worst is over? Perhaps she’s finding her way in her new life.
Perhaps one day she’ll forgive me.
June 13, 2024
Open-Toe Sandals
The change is monumental but it is measured in minutiae.
Taking down my fragile blue glasses from the top shelf where the wine glasses are kept.
Leaving the dishes I used to cook dinner on the countertop, including the knives.
Walking away from a pile of laundry on the couch I don’t care about folding.
I left my phone on the table knowing no one will try to put it away.
I walk in my house with bare feet now because there isn’t a walker to roll over them.
There is no one to remind me to clean the house or wash the clothes.
My daughter has moved out, leaving behind a few crafts and outgrown baby dolls.
It’s taken longer for me to become an empty nester than most people. My daughter is 29.
Suddenly my schedule is set to my own rhythm and I eat dinner at nine-o-clock.
I shop for food I want and cook what I like to eat, even just cereal sometimes.
My daughter isn’t here to break my glasses, drop my phone, or run over my toes.
She isn’t here to wake me up at 10:00 PM or midnight or 3:00 AM.
She isn’t asking me to wash her hair, tape her books back together or help her dress.
It’s just me now, an unemployed caregiver in this quiet, too big house.
I gave away most of my leggings and sweats, the clothes I wore to care for my daughter.
Then I unpacked all my pretty dresses that I couldn’t wear before, hanging them in my closet.
I put one on and stretch my arms above my head, letting the cloth stroke my bare legs.
Putting on my one pair of open toe sandals, I decide it’s time to buy more.
May 31, 2024
Packing for a Group Home
What do you bring to a group home?
Your own bed with your own mattress, pillow and favorite quilt.
All of your dolls, especially the Disney dolls, because they are soft and good to hug and listen to everything you say.
You’ll also bring two shoe organizers because they can hang on your bed frame and hold all of your dolls. It’s good to have friends near you when you’re sleeping.
Your clothes of course. But you’ll need something to keep them organized because there isn’t enough space in your new room for your wardrobe. Closet organizers like hanging cubbies will work great, especially if you don’t like drawers. Dresser drawers are hard to open.
Books. A room isn’t comfortable without your books. You’ll need to bring your bookcase to hold all of them. Books are important.
One chair to sit in beside your bookcase so you can read your books comfortably.
Pictures of your friends. These include all of the Disney princesses you’ve met because they are your friends too. The pictures will be hung on the wall next to your bed so you can look at them every day.
Lots of pillows so you can lounge on your bed and talk to your dolls and read your books in your own, special place that is just the way you like it.
Hope. Hope is important. Hope that living in this new house will be a good thing and you’ll make lots of new friends, even though you’ll miss your old room and your mom for a while. Actually, you’ll always miss your mom. But that’s okay because your mom will visit a lot and you’ll go out to lunch together and then the library. Mom likes books, too.
Your own toothbrush.
May 26, 2024
Twenty Nine
Today is Rhia’s birthday and just like every birthday before, I am awed by her. Not because she’s still alive, even though that is what astounds her doctors.
I am awed by her because she is ALIVE.
She is still herself despite everything she has had to cope with. She is still kind and funny, loving and fierce. She is a warrior who knows exactly who she is and what she wants. She is far wiser than I ever was at age 29.
She is the most joyful person I have ever known.
Happy Birthday to my fabulous Rhia. I am so proud of you.
Rhia smiling.
May 16, 2024
Letting Go
My daughter spends too much time alone staring out of her bedroom window. She’s isolated and cut off from anything close to her own community. Her caregivers are her friends. She says she’s happy reading her books and talking to her dolls in her room, but I want more for her.
I want more for me.
I’m tired. That’s the real truth. My body simply can’t keep up this pace of working full time and caring for her needs full time. I need sleep.
My longing for rest makes me feel guilty.
After numerous panic attacks and one complete breakdown, I decided to look for a group home for her. During a meeting with the Regional Center, the organization that provides supports for people with developmental disabilities, I requested they find an appropriate group home for her. I knew it could take years because group homes have waiting lists and not every home would be right for my daughter.
An appropriate home was found in two days.
My daughter moves in at the end of this month.
When I told her, she cried. She doesn’t want to leave her princess room with her Cinderella quilt and all of her dolls. I told her she could take all of her things with her but she’s not convinced. She says she’ll miss her friends. Her friends will visit, I said. And I’ll spend lots of time with her too. We’ll still see each other, we just won’t be living in the same house.
She said she doesn’t think it’s a good idea.
We visited the home, which is only twenty minutes away. Another blessing being so close. Sometimes people move to homes hours away, but my daughter will be close enough for me to come whenever she needs me. The home is lovely and the people who work there are very kind. My daughter made friends in ten minutes with two of the women who live there. It’s a good match.
My daughter still isn’t sure she likes this idea, but I’m determined it will happen. She will live there for the summer and if it really doesn’t work out after a few months she can move back in with me and we’ll figure something else out. We have to give this home a try.
As we prepare for her move in just two weeks, I pray I’m not making the wrong decision. I am guilt ridden and worried that I’m causing her harm. Change is hard, I remind myself. I have cared for all of her needs for 29 years. Now I’m handing that care to someone else and I find that letting go of the control and vigilance is terrifying.
If anything happens to her…
What if this is actually the best decision I could make for her? What if this turns out to be a wonderful thing for us both? Those are the questions I need to be asking as I reorganize both of our lives.
April 20, 2024
Battle Fatigue
Will I lay down my arms when the battle is won?
Will I forgive myself when peace has begun?
Will I feel the world shift toward quiet and calm
Or will I prepare for the next war to come?
The momentum of adrenaline caries me on
Long after the fighting has stopped and I won.
Or maybe I lost, the outcome is the same
My armor is broken but will cover the pain.
I lower my weapons to rest here in peace.
Maybe then I’ll hear that the battle has ceased.
Let go of the torment. Bury my dead.
The only battle raging is the one in my head.
April 15, 2024
Death can wait a little longer.
Image from https://richardeng.medium.com/the-nature-of-life-and-death-c626d8bf0f93Death paces the perimeter of my daughter’s life. Every birthday Death has been there, standing at the edge of the party wistfully, looking at the birthday cake. Every holiday, every trip to Disneyland, every special moment, Death tagged along.
But one day, I walked up to death and said, “What if she lives?”
Death stopped pacing and turned to face me, blinking rapidly as if trying to understand the question.
“What if she lives?” I said again.
Death looked at my daughter.
My voice became louder. “We’ve all been waiting for her to die for the last 10 years. Did it ever occur to you that she might actually live?”
Death stared back at me and said absolutely nothing. Then I realized Death had nothing to say about being alive. Death couldn’t imagine anyone living. Death was prepared for the end of life, not the continuation of life.
But I could imagine my daughter’s life. I could clearly see her alive and well and happy, living many years longer than anyone expected her to.
I stepped closer to Death and pointed toward the road.”I think it’s time for you to wait out there.”
Death glanced in the direction I pointed, then looked back at me.
I took another step forward. Death took a step back.
“I said you should wait over there. I know you’re not going to leave, but you don’t have to hover so close anymore.”
Death stare deep into my eyes, blinked a few times, then shrugged. Slowly, Death turned around and walked out to the road. It didn’t matter how long Death had to wait. What is time to Death?
I turned my back on Death and walked into the house to be closer to my daughter who I as happily coloring a picture and singing a song. I sat down beside her and allowed myself to dream of her future.
It doesn’t matter how long her future is. It only matters that she live.
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