Queen Teen vs. The Communion Wafer

While my daughter and I were visiting family in Louisiana, we went to church. My husband’s family is very religious. I have no problem with religion; my daughter is baptized in the United Church of Christ. However, I’m not a Christian. Jesus was an extraordinary teacher and philosopher, but I don’t believe he died for my sins.

Regardless, we went to church with the family.

My nephew was an acolyte and he was thrilled to show me his long white robe and how  he lit the candles on the altar. Bouncing with excitement, he asked, “Do you want the pastor to come to you, or do you want Rhia to walk to the altar for communion?”

Because of severe ataxia, Rhia uses a walker to get around. Whether or not she should walk or sit for communion wasn’t my biggest worry at that moment, though. Instead, my brain anxiously hummed with the word “communion.” Communion? Who said we were taking communion? Isn’t it a “sin” for us to take communion? I’m not a Christian and Rhia has never been confirmed. My nephew is only 9; he has no idea what he’s talking about.

But before I could argue with him, my mother-in-law said, “The pastor should come to you. That would be easier for Rhia.”

Surrounded by so many eager, loving family faces, I nodded. “Of course.”

Communion. Again I wondered if I should protest, but how could I without embarrassing my mother-in-law? The pastor began the sermon, which was all about sin and forgiveness, so I bit my lip and worried what Rhia would do.

At last it was time. The pastor solemnly walked to Rhia and I with the communion wafers and wine, my nephew trailing him as sedately as a hyperactive 9 year old boy could. The pastor blessed a wafer and handed it to me. I turned to Rhia and signed for her to open her mouth. With scrunched eyebrows and narrowed eyes she opened her mouth and I popped the thin, white wafer in.

“It tastes like paper!” she shouted loudly, and spat it out.

After catching the soggy wads of wafer in my hand, I had to turn back to the pastor for the wine. The man was a pro; his expression never changed as he calmly handed me the wine to give to Rhia. Rhia took a sip and announced, “Tastes like my medicine.”

Trying not to laugh while hoping my mother-in-law hadn’t seen her granddaughter spitting out the body of Christ, I received the wafer and wine with the pastor’s blessing. “Is this gluten free?” I wondered, but decided it was better to just take the wafer and bow my head. When the pastor walked away I shoved the remainder of Rhia’s wafer into my purse. It stuck to the sides of my bag like paste.

Everyone else in the church solemnly went to the altar for their blessing. If anyone noticed how Rhia reacted, they were too polite to show it.

On the drive back to my in-law’s house, I wondered about the body of Christ crumbs in my purse. Could I just throw them away? I didn’t dare ask my mother-in-law. Instead I quietly tossed them under a tree when I got out of the car. Perhaps some birds were blessed that day.

No father should have to change his daughter’s Maxi-Pad.

Rick

Happy Father’s Day to my fearless husband. The man who works every day to keep a roof over our head and food on our table (seriously, he works every frickin day). The man who chose to become to father of a severely disabled girl. He is not her biological father, but he is the one who has raised her and fought for her and has even changed her Maxi-Pad.

Yes, he has had to learn how to deal with a girl’s period and which Maxi Pad to use.

No father should have to do that. Ever.

Happy Father’s day, you wonderful man. And to all the father’s of children with disabilities: the ones who stay up all night with a sick kid; who work crazy jobs to buy their child a new walker; the fathers who sacrifice their leisure time to help their child put stickers on a drawing or play with dolls; thank you. You are the rock stars of medically fragile children everywhere.

Celebrate your day!

cancer 

My husband was diagnosed with cancer two months ago. From the moment he told me “I have cancer,” nothing that had happened before mattered. Not a single argument, moment of pain, or disappointment, had any power. All that mattered was that he get well.

And he did.

Last week he had surgery to remove the tumor. I sat beside his bed and held his hand, feeling how small and frightened he had become. My strong, Viking sized man held on to me as if his life depended on it. And I knew I would never let go. 

Love brings ammunition. We join together, set up our walls, dig our trenches, and then hurl bombs at each other without understanding what we’re doing. Everything we’ve been taught since childhood gets thrown on the battlefield; you have to watch for trip wires. The battle will continue until you learn that the person you love can never make you whole. Healing is your job.

My husband slowly heals. The cancer is gone, but his body is scarred. We are both holding our breath to see what happens now. 

The only thing I know is that I love him with all my heart. I will do my best for him, even if I don’t know what to do.  

Disneyland is for Writers

My daughter is a Disney fanatic. We go every year, and tomorrow we’re going again. It is the one place on Earth my daughter is truly, 100%, over-the-top happy. It is also the perfect place for a person with disabilities. The staff are attentive and supportive and make her feel like she is part of the Disney World. I would take her every month if I could just so she could keep that wonderful smile on her face. And I would gather even more material for my books.

I am not a Disney fanatic. I enjoy it there, mostly because my daughter is so happy. But if she hadn’t fallen in love with Disney Princesses at age 6 I would never have gone. In fact, I was opposed to Disney and it’s money making machine of animation and theme parks. What kind of role model was Cinderella for my daughter? But Cinderella is who my child adored and so Cinderella we would find. At Disneyland.

We have been back every year.

I love the decorations, the characters, the scenery, and the shows. And I love people watching. If you need examples of every pure emotional state known to humans, go to Disneyland. You will see joy, romantic love, anger, frustration, fear and misery. Six year olds fall to the ground in utter despair while their overwhelmed parents plead, beg and finally yell. Adults squeal in delight when Mickey Mouse shakes their hand. Couples clutch each other in terror on the rides.

There is enough melodrama at Disneyland to fill five volumes of Bronte inspired literature.

When you pack for your trip to Disneyland, bring a note book and several pens. You’re going to need them to write down all the fantastic scenes a trip to Disneyland will inspire. Take note of how people physically behave when excited. How do adults behave when exhausted? What does a person look like when their expectations have been destroyed?

While your family is busy chasing Princess dreams, you can chase characters for your next book.

Summer, bored kid, publishing, and no time to write

My fingers feel tight as I stretch my hands outward, forcing the muscles to loosen. There is a large spot of something sticky on my computer screen; is it a mocha splash from last Spring? I blow dust off my keyboard and sneeze. How long has it been since I’ve written anything?

Every summer is the same: my daughter is out of school and bored. She and I try to find things to do in this small town. Because of her disability, going outside in 95 degree weather is impossible. While other kids swim, hike, go to camp, or ride bikes, my daughter hides from the heat and counts down the days until school starts. We do our best to have fun by doing crafts and escaping to the city as often as possible. At least in the city there’s an air conditioned shopping mall, aka Mecca for teenage girls.

At last, school started. My daughter is happier, and I can write again.

Ebook cover 978-0-9797152-2-8

Besides being a full time, busy mom all summer, I also launched a new book through my press, Medusa’s Muse. Publishing takes as much concentration and energy as writing, and this book seemed to take even more. All summer, I struggled with printing problems, last minute manuscript issues, legal questions, and budget constraints. Shannon Drury and I worked hard marketing her book, and then just when the book launched and all seemed smooth sailing, Shannon broke her wrist. Not a fun way celebrate the launch of a first book. But the book is alive and slowly gaining readers. I am so proud of Shannon’s book and my part in creating it. It was my most challenging book so far and I learned a lot, but I am so excited about this book I would do it all over again.

My daughter left for school on the bus this morning. I pour myself more coffee and return to this long ignored blog. Now, what shall I write about…?

My Muse on Perspective

My muse has been very quiet lately. No waking me up at 4 AM with another brilliant idea. No poetry interruptions at work or demands that I skip eating to start yet another book. Instead, she’s been watching my daughter.

“Is she feeling better?” she asks.

“Yes. She can go back to school now.”

“Did the doctor uncover the cause?”

“No, not really. Just a progression in her condition.”

My muse nods. “It is very difficult to sit and be unable to help.”

“Tell me about it.”

Reaching out to me, she pulls me closer, careful not to turn me to stone but still offering comfort, something my muse rarely does. “You’re a good mother. Remember that. You were born with a gift for knowing what to do and how to do it. I see it in your work with others, and in your own writing. And I see it now as you care for your daughter. You must not forget that.”

“Thank you,” I whisper.

My daughter has been very ill since March, but is thankfully improved and back in school. She has a mitochondrial disorder which can be scary and the future is unknown. Two months ago she had a serious set-back and had to be hospitalized. That stopped the presses around here; I just can’t get excited about writing when my child is sick.

“It reminds you of what matters most in life,” my muse says. “I’ve seen great artists come and go over the centuries, but nothing is more beautiful than the love between a parent and child. And nothing is more sacred.”

Then she smiles. “Now that your daughter is well again, shouldn’t you be getting back to work on your new play, and start that new book? And weren’t you going to create ebook versions?”

I laugh. Yes mistress muse.