Terena Scott's Blog, page 2
December 30, 2024
What is my book about? A very good question.
Mid-century modern elevators by Topher is licensed under CC-CC0 1.0
She Writes Press sent me their cover design questionnaire at the start of the holiday season with the request that I answer “thoughtfully.” It’s due as close to the New Year as possible. It’s a long form with about 18 in-depth questions about my book, including the theme, the characters, the setting and any cover design ideas I may have.
It was surprisingly difficult to answer the questions. One of the hardest questions looked simple: what is my book about? After spending years writing and revising and writing my memoir again, that should be an easy question to answer, but it’s not. What is my book about? Not just what happens in the story, but I need to explain the WHY of my book.
How do I answer that question in three simple sentences?
They call this an elevator pitch. Imagine you’re in an elevator with your favorite author or a famous agent and they suddenly turn to you and say with a smile on their face, “Tell me what your book is about?”
What do I say?
1. My book is about raising my daughter who was born with disabilities and the challenges that go with … (Boring. Try again.)
2. “Raising Rhia” shows the challenges of raising a child with disabilities in the United States and how the power of love helps a child thrive. (Ugh! Sounds like a Hallmark Channel movie!)
3. A memoir about raising my child with severe disabilities in America, from birth to high school graduation. As I navigate the overwhelming demands of her care, I lose my sense of self and I struggle to see her as more than her diagnosis. But over time, I rediscover her, not just as a child with disabilities, but as a whole person. In this process, I also reclaim my own true self. (Too Long!)
4. My book tells the story of how my daughter and I learn to hold both joy and grief at the same time as we navigate the challenges of her multiple disabilities. (Hmmm… that’s the theme I think, but it leaves out the actual story)
The cover design questionnaire is finished except for this one question and I’m obsessed trying to find the answer. Writing what my book is about feels like writing another chapter of the book!
Revision, revision, revision…
Keep trying, Terena.
December 26, 2024
My Christmas without Rhia: Friendship and Kindness
Christmas has always been challenging for me, probably because we’re all supposed to be so happy! The holiday spirit is about joy and child-like wonder and no one is allowed to be sad. Sadness equals “Bah Humbug.” So here I was, facing Christmas without Rhia’s magic permeating every decoration and baked good for the first time in her life. My tendency toward melancholy filtered in, no matter what I did to hold it back. I spent too many nights crying on the couch, feeling lonely and lost. F*c*ing Christmas!
As so often happens in my life, friendship helped.
I wasn’t blessed with a big, supportive family; my family is complicated, far flung, and dramatic. And then when Rhia was born, family holidays became even more complicated. Rhia couldn’t participate in most of the events and traditions our family planned and just having a conversation at the dinner table was challenging. Often, she and I sat behind while everyone else went on a Christmas adventure.
Lonliness tripled.
Rhia loved Christmas no matter what, so she and I created our own traditions and kept celebrating like we were children. It’s easy to believe in Santa when Rhia is near. When she left, I was suddenly faced with a Christmas by myself.
However… Solstice came.
On the longest night I was surrounded by friends sharing food, drink, laughter and hope. We gathered around a large flame and burned pieces of paper where we’d written all of our fears. I wrote “Shame. Guilt. Worry. Weight.” I need to let go of the burden of fear I carry when I decided to move Rhia into a group home. Then we all created our own essential oil blends to help us remember what we hoped for as the days grew longer. I breathed in the scent of Pine, Cedarwood, Bergamot and Frankincense that I blended together and then thought “More Joy. More Love” as I dropped an amber bead inside the glass bottle.
On Christmas Eve my friend invited me to their family’s celebration. The house was warm and packed with a boisterous, big-hearted, joyful family that welcomed me with open arms. There was so much love in that house I was astounded! It was all music and mayhem and I loved every single minute of that celebration.
My friend stayed with me on Christmas Morning. We sat in front of the fire and listened to music after we opened gifts. The evening ended with movies and popcorn. Simple. Quiet. Lovely.
Christmas is over. The weight of feeling like I need to be jolly is finally gone. In its place is gratitude. I have been enveloped in love and care from so many people this season. Maybe that’s what Christmas magic actually is. If we force ourselves to be joyful on the holidays when we’re actually grieving, it creates a kind of loneliness that lingers long past the New Year. But if we say out loud what is real, actually say “I am in pain,” it opens our hearts to the possibility of joy. From holding hands with friends around a single flame on a long winter’s night to sitting quietly with a loved one while recovering from a large party with too much food, we can be healed by the people who truly see us.
December 18, 2024
Christmas without Rhia
This is the first Holiday Season Rhia and I have spent apart since she was born. She and I have decorated 28 Christmas trees together. The tree is up but her ornaments are still in the box. I hung my David Bowie ornament and a few others but haven’t added a single Disney or Charlie Brown ornament. Those are Rhia’s and it feels wrong to hang them without her. It’s the same artificial tree Rhia and I picked out at “Big Lots” twelve years ago.
This is the first year she and I haven’t decorated the house with lights or watched Santa Clause is Coming to Town and Rudolph the Red Nosed Reindeer together. We won’t be baking cookies together either. She lives in her own house now with a tree she decorated with her caregivers and housemates.
I miss her so much I ache. And I can’t bring her back to the house because it’s too confusing right now. This is the house she and I have shared since we moved to the Bay Area six years ago and every time I see her, she asks when she can come home with me. It breaks my heart.
A few days ago she asked for her Christmas Village. I’ll bring it to her tomorrow and help her set it up in her new bedroom. Maybe we can curl up on her bed and watch a holiday movie together like we did last year.
Rhia will be spending Christmas with her dad, which is good. She’ll go with him to her Aunt’s house and have a lovely dinner with family. I’m not sure what I’m doing yet. I might drink a bottle of champagne by myself and watch It’s a Wonderful Life for the hundredth time.
Again, I knew letting go of Rhia would be hard, but I had no idea just how hard it would be. Friends keep telling me this loneliness I feel is completely normal and is exactly how most parents feel when their child moves out. In time it will get easier.
In time, we’ll both figure out how to live our own lives. But right now, I just want to listen to Rhia sing Christmas songs loudly and off-key.
December 6, 2024
Changing from a Caregiver to an Advocate
I was revising my author bio when I suddenly stopped.
“Author, Teacher, Caregiver…”
Wait.
I’m not a caregiver anymore.
I have identified as my daughter’s caregiver for almost 30 years. But she moved out to live in a group home where other people care for her. She has new caregivers. Professional caregivers. Therefore, I am no longer a caregiver.
Do I still have an extra role in her life other than “Mom”?
If so, what?
I no longer care for Rhia’s daily needs. I don’t cook her meals anymore, or clean her room, brush her hair, help her dress and drive her places. She tells other people how to help her, finally gaining more indepence from me, her mom.
But I do more for her than other parents of young adults. I still coordinate her healthcare (with help from the group home’s nurse and social worker). I manage her Social Security benefits and any bills that may come. I buy her vitamins and replace her clothing when needed. I am still her ASL interpreter when she needs communication support. And I still fight for her rights whenever necessary.
Everything a parent should do, right?
Should I just write Mom in my bio. Super Mom?
No… Advocate.
I am Rhia’s mom, but I am also her Advocate. I work to ensure she gets absolutely everything she needs in order to thrive. No matter the need or how long it might take, I won’t give up. I know the laws and policies that protect her rights and I know who to call if I can’t find a solution.
After erasing “Caregiver” from my bio, I typed “Advocate.”
It feels right.
November 17, 2024
Keeping it Real
While writing my memoir I had to choose what to include and what to leave out. How much of my marriage would I reveal to readers? Should I write how I sometimes felt about my family? How many private details should I include when writing about my daughter?
There’s a trepidatious balance between showing the details of your life and oversharing what should stay quiet. I’m still not sure I’ve achieved the right balance, but I did my best. While writing, I focused on Rhia and our journey together. I also tried to stay kind to the other people in our world, even those who hurt us. And I tried to be brave when sharing my feelings about challenging events, including when I was angry or despondent. I am not a perfect mom and it was important that I show my mistakes as well as the joys in my book.
Critics of memoir writers say that we are self-indulgent; we write about ourselves because we think we’re important. Maybe they’re right, maybe I am self-centered. But I believe my story about raising Rhia is important, not because I’m the important one, but because my book might help other people managing a child’s illness. So I kept writing even as my inner critic shouted I was writing a useless book for my own self-interest.
A friend once told me she likes my writing because I “keep it real.” I love that feedback. It means what I write feels true and authentic. That’s what a memoir should be.
How do I keep it real? I ask myself some questions as I write .
Is what I am writing true for me?
Is what I am writing beneficial to others?
Can what I write harm anyone? If so, why am I writing it?
What is my motivation for sharing something so personal?
I try to answer these questions honestly, which also isn’t easy. Sometimes our motivations are hidden even from ourselves. But these questions have helped me decide what to include in my book and what events and people to leave out. And because I’m extremely hard on myself, I actively forgive myself for making mistakes when deciding what to write about.
It’s the only way I’ve found to shut down that inner critic (and external ones!) when it says “You’re so self-involved!”
November 4, 2024
Why I chose a Hybrid Press.
I used to be a book publisher.
From 2007 to 2012, I ran the micro press Medusa’s Muse from my kitchen table. I was the publisher, lead editor, business manager as well as the entire marketing department. With the help of my then husband Rick (book designer) and my good friend Jane (copy-editor), I published four books:
Traveling Blind: Life Lessons fro Unlikely Teachers, by Laura Fogg
Punk Rock Saved My Ass: an anthology of true punk rock stories
The Radical Housewife, by Shannon Drury
And a book I wrote about starting a small press called What You Need to Know to be a Pro (no longer in print).
Starting a small press allowed me to work with wonderful authors, create art, and learn about the book industry. So when my own book was completed, friends asked if I planned to self publish.
The answer was ABSOLUTELY NOT.
Publishing a book is extremely hard work, especially on your own. I wanted to work collaboratively with a team who would help make my manuscript a thriving work of art. But I was hesitant to submit to traditional publishers because I didn’t want to give up all control over my art. So I decided to investigate the hybrid model.
Hybrid publishing is a newer model of book publishing that combines traditional and self publishing. The author pays for some of the costs of publishing while the publisher provides the rest. The author gets a higher percentage of royalties. She Writes Press has an excellent reputation of quality and are very selective about which books they will publish. They weren’t just going to take my money to stroke my ego. When they accepted Raising Rhia I knew my work was good, which felt very validating. And they give me the right combination of artistic control with publishing expertise. It feels collaborative, like working with my team at the kitchen table while publishing books with Medusa’s Muse.
Here is a TED Talk from Brooke Warner, publisher at She Writes Press explaining more about hybrid publishing and how it creates opportunities for authors.
Just like any publishing company, it will take more than a year for my book to launch. There’s a lot for me to do in the mean time, like creating a professional website and building my online presence. Being a published author isn’t just about the book. I also have to sell the book. It’s a job that takes focus and perseverance. I’m nervous but ready for the challenge. And She Writes Press feels like the best choice for me and my writing.
I’ll keep you updated on the publication process. I’d like to know what you think about hybrid publishing. Leave a comment and let me know.
October 19, 2024
My book, “Raising Rhia” accepted by She Writes Press
Terena smiling happily while holding a glass of champagne I submitted my book to She Writes Press and waited several weeks for the answer. And then I got the email…
Dear Terena,
Thank you so much for your submission and congratulations on passing through our two-tier submissions process with such flying colors. I’m attaching your assessment for Raising Rhia here.
I’m excited to be writing to let you know that we would love to offer you a contract to publish with She Writes Press.
Raising Rhia is finally ready to be read by others after more than ten years of writing multiple versions, including changing the title and format twice. I feel simultaneously terrified and ecstatic! “I will be a published author,” I say while spinning exuberantly in my living room. “I will be a published author,” I say while running to the bathroom, nauseous with anxiety.
The publication date isn’t until Spring, 2026, so I have time to get my nerves under control, if that’s even possible. In the mean time I’ll be working on a new website while building my community. Raising Rhia was written in hopes that it would bring support and comfort to other families raising a child with disabilities. I hope what I contribute online will bring a sense of community to others.
Community is one of the reasons I decided to publish with She Writes Press. I’ll write more about that next time.
Speaking of community, I’m sending deep gratitude to everyone who helped me finish my book. My writing community is wonderful!
OMG, I’m going to be a published author!!!!!!!!!!!!!
October 15, 2024
John Oliver on the dysfunction of the Social Security Disability Insurance Program.
picture of John Oliver from the Max Website
John Oliver discusses the Social Security Disability Insurance System in this video . He is 100% correct when he describes the system as dysfunctional. It is not just dysfunctional, it is overly complicated and difficult to even access.
Having advocated for my Disabled daughter to first receive and then keep SSI benefits for 29 years, I can add that the system is F**KED.
SSI/SSDI is set up to confuse, frustrate, demoralize and ultimately shut out people who need their help. The goal of SSI/SSDI doesn’t appear to be helping anyone, its to keep people with disabilities from gaining any help they might need. Therefore, it is vital that when you’re applying for SSI/SSDI for yourself or a loved one you don’t give up.
No matter how much red-tape, paperwork and delays they throw at you, do not back down. Fill out every damn form, in triplicate if required and stay on hold when you call them. Don’t hang up. Don’t go away.
Do not quit even when you are denied SSI/SSDI because they don’t believe you are disabled. I know too many people with disabling conditions who have been denied support. My own daughter was denied SSI twice, despite her vision impairment and documented cerebral palsy. The “doctor” contracted by Social Security didn’t believe she was blind.
I appealed again, filled out all of the forms again, and finally got her the financial and medical support she needed.
It took two years.
Watch John Oliver’s video, then help those people who need support getting disability benefits. My daughter had me to fight for her but not everyone has an advocate.
And talk to your congressperson about raising the resource limits to reflect the actual cost of living in this century. Maybe then people in love can get married without losing their medical care.
For more information about SSI/SSDI, go to The National Council on Aging for an explanation on program differences/requirement as well as advice on applying.
September 9, 2024
Rest is good for mental health. But first I had to admit I was tired.
Simone Biles is a badass, not just for her gymnastic abilities, but for her ability to ask for help. Her body and mind needed rest, so she rested. She didn’t fall into the trap of shame or feeling guilt about letting people down. She just said “I need to rest.” Then she did it.
It took me three years to recognize I was exhausted, admit I was exhausted, and then accept that I needed to rest. Three years of powering through each day like an over-caffeinated, limping Wonder Woman. Shame kept me trapped in a spiral of depression, numbness, disassociation and anxiety. I drank too much, ate too little and spent too much time crying in my car. Feeling weak, I became terrified that my world would end if I actually did collapse.
Then one day, I collapsed.
But my world didn’t end.
My daughter was fine.
The people in my community surrounded me with love and support.
No one shamed me.
Everyone encouraged me to rest.
Because my body forced me to stop I rested, rather doing everything I believed I needed to do.
I slept.
Daily, four-hour naps refueled my body like water resurrecting a half dead plant.
As my body regained strength, I gained clarity.
Pushing myself beyond my physical and emotional limits because I am ashamed to admit I need help is a trauma response I learned in childhood. The drive to do too much kept me safe when I was twelve, but now it creates chaos and harm. Unfortunately I needed to collapse before I could see the self-abuse I was trapped in.
Simone Biles recognized she had “the twisties” so she stopped competing before she got hurt. If she’d kept pushing herself to perform she could have injured herself badly enough to end her gymnastics career. Thousands of people watched, baffled, as she walked away. Some judged her, others supported her, but she did what she knew was right.
And now she’s back, winning gold in the Olympics again.
I’m feeling stronger now. I won’t win a gold medal for resting, but I just might win a happier life.
August 17, 2024
Just an Ordinary Mom
My daughter still complains about her new life in the group home every time I visit her.
“I don’t like that I have to wait when I have to go to the bathroom,” she says. “There’s too many pillows on my bed so there’s no room for me and my blankets keep falling down and they won’t let me play with my baby dolls and I can’t look at my books and the table’s too small when I want to color and this other person wants to use my crayons and I don’t like it…!”
The list is always long and her voice is always loud with frustration. No matter how much fun we have together out walking the dog or going to the library, she always remembers to tell me that she’s actually miserable.
Other people tell me she looks great at the group home. I hear about her singing to her new friends and laughing when her new aids do something “silly.”
She saves her anger and frustration for me, punching me in the heart so I understand how unhappy she is. When I leave her home I’m usually worn out, tearful and doubting that I made the right choice for her.
During this recent visit, we walked along the sidewalk near the ocean with our little dog trotting beside her wheelchair. Waves sent droplets of sea water onto our skin and pelicans flew in the air. I pointed up at a group of them flying above our heads and Rhia gasped. “Those are big birds!”
Then she began telling me everything she didn’t like about her new home. This time, I didn’t get upset. I took a deep breath and concentrated on staying in the moment. Hundreds of people gathered at the edge of the sea, some holding binoculars and cameras, watching for the whales traveling past, hidden under the water. I saw a whale spout and laughed, then I explained to Rhia why I was excited and what everyone was looking for. She grinned. “I like whales.”
When I dropped her off at her house later she was still smiling.
Maybe that’s the secret: take a deep breath, stay present, and redirect.
Later, I said to a dear friend, “Every time I see her she spends thirty minutes reminding me how unhappy she is and complains about everything. It’s exhausting!”
“You’re a safe person to vent to,” they said. “She trusts you the most.”
“I know. I get it. I’m mom so everything must be my fault.”
“Everyone blames their mom when things are bad,” they said.
“Mom’s get all the blame,” I said.
We laughed together, and then I said, “I wanted to just be Rhia’s mom and not her full-time caregiver. Now I am just mom, which includes having all of her anger hurled at me. Does this mean I got my wish?”
“Yeah, you did,” they said quietly.
“She’s mad at me and I feel guilty.” I sighed. “It’s hard, but this change in our lives is probably the most normal thing Rhia and I have ever experienced together.”
It’s been two months since Rhia moved into the group home. The guilt is slowly lessoning, but I suspect it will never completely go away. Mom-guilt arrives the moment your child is born and only grows as your child grows. But I no longer feel guilt like an open wound that leaves me weeping whenever I leave Rhia at her new home. I’m proud because she’s creating her own life. She is learning to make new friends and trust others to help her without my intervention. I am learning to let go and trust her to advocate for herself. We’re both evolving.
I still grieve that my little girl is all grown up and living away from me, just as the majority of “empty-nesters” do. Some days I feel depressed and untethered. Other days I’m ecstatic I can go out to dinner without struggling to find coverage for my daughter. This emotional rollercoaster is exhausting, but is also one of the most ordinary things I’ve ever experienced as a parent. I get to grieve and feel excited and worry and celebrate just like a typical mom when their kid leaves home. I also get to experience the stress when my child is furious with me and blames me for everything.
Just like an ordinary mom.
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