When platitudes of perseverance fill me with seething rage instead of the urge to sew a throw pillow I know I need to take a walk. I bristle at the slightest whisper of empathy lately, when what I really want is to feel it, to let it slide through my psyche, balm-like on my internal aching. I wish I knew what was wrong with me. Twinkle is sick, but surgery, solitude and six months of treatment should stultify her symptoms. That may be all it takes to make her well again.
There is no room, no reason in our situation for my anger, for my fits of rage that come out against an innocent pan that doesn’t slide correctly into its place in the cabinet. There is only room for smiles, for hugs and for reassurances that everything is going to be fine. Why, then, do I constantly catch myself telling inanimate objects to just bend, already, just give a little? Can’t the unbend-able bend just this once, break the laws of the universe and show me that I do have power here?
Everything will be fine. In truth, it will be – which is why I feel so guilt for being so upset. Our version of “fine” might change, but doesn’t reality always shape our definitions? When I watched my son today, turning flips off the couch while speaking the dialect of the electric Pokémon brethren he loves the most, I see a completely different version of perfection than I could have imagined before I met him. It’s magical, really, how much better real-life is than fantasy.
When we finish wading through this new diagnosis and treatment plan Twinkle may get a new definition of fine. From this side of the starting line we cannot see the miracle of the finish line, the place where her care team promises she will reach a new level of wellness previously unexperienced. Instead we see obstacles that refuse to break the laws of physics just because that would give us our power back.
I love Yeah Write, a community that makes me try harder to write better. Do you have something you are proud of that you want to submit to the grid this week, receiving comments and encouragement for doing so? I cannot recommend putting yourself out there with this community enough.
Less than one week from now I will be an outwardly stoic, internally crumbling mass of human existence, waiting from Twinkle to emerge from Surgery. Then comes the days of keeping her spirits soaring in the hospital beds, then the days of solitude at home. Then six months of treatment. Then? Then peace watching our healthy child play or knowing we did every damn thing we could, and will continue to do every damn thing we can to make it so.
Help me, please. My daughter has above average intelligence, extreme mindfulness and a soul that gives me chills. I can usually find ways to keep her happy and fulfilled, but the prospect of weeks without friends or school has me grasping for ideas. What can stimulate her enough to make her time not seem so long and lonely? We have a Leapster and a few games, coloring books and crayons. I am loading my kindle with new beginner chapter books from the library. What else, though?
Deep insight and higher meaning are lacking in this post, and in my life, right now. I could really use some insightful phrases that belong embroidered on a pillow, or perhaps a full night of sleep where I don’t wake up in a panic that I forgot to do something very important.
The four of us were sitting down to dinner together, a rare treat since Davey started working two jobs a month ago. We went around the table verbalizing our gratitude – everyone was grateful to be together. Next comes sharing our high and low moments; it is a wonderful way to learn about their days without using the dreaded “so how was your day?” line of questioning.
Ninja was boiling over to start the sharing, surprising as it is usually Dave or I who gets the ball rolling. He was really quiet for a second, waiting for all of us to pay attention. He looked across the table at his sister and said, “I am so happy, and my high today is that soon [Twinkle] will get her surgery and she will finally get to feel all better again. And I have no lows because that makes me so happy.”
I didn’t know what to say. My beautiful boy, my four-year-old son who had a day full of happy moments spent adventuring with friends, could think of nothing better about his day than to celebrate that his sister would soon be well. His heart is made of gold; his soul profoundly beautiful. Most children cannot put other people ahead of themselves at that age – some people are still learning to do it at my age.
To honor her privacy I haven’t spoken directly about Twinkle’s health issues on my blog. I plan to continue speaking only generically about her issues, but she gave me permission to share this story. Dave working two jobs, the extra stress I have alluded to in several posts, my long absences from this space, are all related. She has surgery April 14 as the next step towards total wellness.
As Ninja said, our high, all of ours, is that she will finally feel all better soon.
When the World (or One Guy) Agrees
I’ve called my husband brilliant from the moment I met him. His soul screams in pictures, projecting visions and creating images through theatre that challenge and entice. This play, written by his beautiful, soulful friend, challenged him to forge new ground. He brought her work to life onstage — they worked together to build something so beautiful.
I am so lucky he is mine.
Click the link to read the first review, it is lovely.
Davey Also Creates the Art, Does the Publicity, Builds the Sets, Runs the Lights and Sound and Smiles like an 80′s Dream Boat
Dave’s play open’s tonight, Small Hours Serenade, making this our 3rd main stage show since moving to Detroit and starting a new theatre company. I love this play. It is a new work that reminds me of a dragonfly, lightly making contact with reality before skittering away into the consciousness of its main character. We watch the relativity of reality, the power of perception and the graceful acceptance of fate through four newly minted adults wading through chaos. So beautiful.
This is the first time Dave has produced a new work, having the playwright and dramaturgic professional on-hand throughout the process, shaping the show rehearsal by rehearsal, his creative process becoming indelible ink stains on the script. This is also the first time I watched him sink into his role knowing from day one that he was the right man to produce this play. He sees himself as worthy of tough work, talented enough to create compelling art. He sees himself through the lens I have always seen him — It is so refreshing to know that we both see an incredibly talented artist, that his study and sacrifice, his life story replete with both triumph and tragedy, has created something magical that others want to experience.
I am overcome with emotion every time I see what he creates using his genius, a small amount of cash, and unending passion. Tonight, and for eleven additional nights. I will hear about other people experiencing his art and be reminded of why it is so important we live on love and art instead of taking an easier route.
I find melodramatic prose comforting right now.
Imagine a shipwreck in the fog, but everyone makes it safely to a large rock. I feel like that rock, my family is standing on my back, regaining their composure and feeling safe. But I’m not a rock, I am a giant blow fish, and I am quickly expelling air. My kids and husband are losing their footing, bumbling about, completely confused with their inability to find solid ground on my now permeable flesh. Sometimes I just have to let the air out.
Life continues, friends, be it ever messy and challenging. I did convince the kids that frozen bananas blended with a dollop of whipped cream tastes better than ice cream, so at least there was one win in my corner.
Posted in Family
The tops of 12 iris plants are poking around a snow drift today, begging for sunshine and light, freedom from the darkness of winter. This winter somehow sneaked up on us, as if every November wasn’t a fading swan song of warmth. Our gardens sit a disheveled mess of remains from last year’s attempts at cultivating beauty, with the hope of this year’s shoots forcing their way through the wreckage and into the air. Snow be damned, forgotten lily leaves curl away, these irises belong here, outside our kitchen window, bringing color into the grayness that has lasted too damn long.
Throw Back Thursday — the last day of my last pregnancy, nearly five years ago. I hated being pregnant, but the results were perfection.
I want to be known as the person who dances in Movie theaters. If someone says, “you know Sarah, right?” and the other person stares blankly I hope the next words uttered are, “you know, the mom who always dances in movie theaters with her kids?” If a blank stare lingers, please let the next phrase be, “you know, the woman whose laugh sounds like a broken bicycle horn, like a hyperventilating seal?”
Everyone has fantastic character-defining quirks. I wish to be known for always encouraging acting silly when your soul craves it, like doing the robot in movie theaters if the credit-rolling music calls for it. I wish to be known for laughing loud and often with a raucous laugh that makes others laugh with the absurdity of its sound.
My most favorite overheard answers to the question, “you know Sarah, right?” have been:
- At church: she’s the one whose kids are always polite but their clothes never match.
- At Twinkle’s school: she’s the one who always says “thank you for making good choices” out loud to her kids.
- At my work: you know, person in grants who is a lot more approachable than she looks.
It’s interesting which parts of yourself people notice, and assume other people do as well. Do you have any you wish to be known for most?
A room of adults sipping wine and drinking beer, laughing and enjoying adult conversation while snacking on delightful food not purchased with children in mind – throwing a party for adults is such a strange experience after years of musical chairs and caped crusader-based children’s events. Dave and I hosted a party on Saturday. I styled my hair, wore makeup and a dress – I even kept my shoes on. This was big time.
We had someone look after everyone’s children in our basement while the adults watched live theatre vignettes in our great room. Dave started off the night with kid-appropriate Shakespeare so the older kids could watch something before being banished to the basement. Our beautiful Twinkle started to beg to stay upstairs. As all parents know, vocal inflection and word choice in front of witnesses can be very different from our usual responses. I asked her politely to leave, she was equally polite in her decline. I stood taller, placed a hand on my hip and gave the look, the one all parents receive as their first gift/weapon from the universe when your child reaches the age of playful defiance. She stared for a moment, said FINE and walked down the stares.
The adults all burst into laughter at the power of my Mom stare, and I was able to continue on with the evening, fluttering about and socializing without making reference to Pixar characters or making good choices. After living as an almost vegetarian for a few weeks my alcohol tolerance resembled that of a thirteen-year-old sneaking a wine cooler, swallowing it in one gulp from fear, then forgetting how to find the floor whilst walking. One glass of wine to take the edge off before people showed up left me bubbly and talkative, completely without my usual social anxiety. The next day I realized that when social anxiety leaves it can be replaced with morning after rewinds, searching memories for evidence of doofus-like behaviors from the night before.
Our guests started to leave around 10pm, several of the children had fallen asleep, their tiny bodies transported carefully to cars warming in the driveway. We transported our own to their beds wordlessly, thankful that they played themselves into sound slumber.
A few people stayed late into the night, though, providing Dave and I the opportunity to pretend we can still hang with the young people of today, laughing and sharing stories until past 1 am. When we finally fell into bed that night, exhausted and happy, I felt accomplished. I Threw a party that grown people enjoyed and did so while wearing a dress and keeping my shoes on – it was a first on so many levels.