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The people who we see out in the world who also have one arm. They are strangers to us. However, there is often recognition, identification, wonder and curiosity. Sammy Mermaid is now an elderly dog. He is grey bearded, slow like molasses on walks and loves to lay in the grass in the backyard. He doesn't love stairs. He is reminding me that aging is part of the process for humans and animals alike. Roasted tomato soup + coconut milk + fresh basil. The gluten eaters make grilled cheese on crusty sourdough bread to dip into the soup. Trusting intuition. When your kid sees approximately 13 specialists at "the best" Children's Hospital in the world, you may make the assumption that a dental specialist from that hospital will also be the best fit. When it's not and the appointment is twilight-zone strange, trust your gut. Get that second opinion. Make a new plan. Abstaining. Watching old videos of the kids with the kids. What I'm noticing about my 44 year old body. Flip flops hurt my feet, if I wear them for more than a few hours. My body aches, unless I consciously move it every day. I need more rest, more vegetables and fruits, more dense nutrition.
Pema before bed under the covers. The ancient air purifier is on high and serves as a white noise maker so I don't hear the rest of the awake family. Walking on the beach this morning and it feels like summer is over. The dogs are back and the out of towners are gone. Sniffles and sinus infections. He is teaching a friend how to drive a standard. Even though he just learned how to do it himself. I cannot believe that senior year is about to begin. Starting to read the book about College "Success" for people with Physical Disabilities. Wondering why a resource like this doesn't exist for people with chronic illness. The realization that I detest the word success.
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In the summer months, people tell me that my skin look pinks. I am actually aware of this. It's my summer glow. Straddling the line between sharing and oversharing - Choosing to not answer questions when I don't want to. The joy and surprise of finding internet friends who walk a similar path. Corn on the cob cooked on the grill. Chardonnay in a stemless glass. Buying two bunches of flowers from the farmer's market. Face coasters with friends. The people you want to spend more time with. Late night phone calls with tears and laughter. Finding a new favorite flower (again). Language. Always language. For example, when someone compares my child to someone who is 'healthy'. What is healthy anyways? Who gets to decide?? New provider appointment this week. Back to school staffing. Writing about the wrench. The rain comes down on Texas. So much water with no place to go. A so called 'natural' disaster. It's cooler these past few days. A few leaves are on the ground. Fall is coming. I am not ready. Yellow finches in the garden. Chipmunk song. Woodpecker eating suet. She is rereading Harry Potter [again]. I'm not sure how many times she has read this series. Senior pictures at the Monastery this week. Sometimes cellular memories come fully into focus when you run across old photos. The photos hold the parts of this life that I have buried, forgotten and pushed away. Like when she asks to see a photo of herself in the halo. And you find the picture and the halo is bedazzled with bling and rhinestones and twisty pipe cleaners. Because somehow in your parental fatigue and just-getting-thru, and surgery after surgery, you believed that the bedazzling and the jewels will make the large metal contraption on the head of a four year old better? And then you see the lambskin fuzzy inside of the chest piece of the halo, and remember how there was no way to clean it, during the summer (one of the hottest summers on record) So the fuzzy lambskin of the inside of the plastic takes on a brownish tinge because of the sweating and playing in sand and the just being an almost five year old. And lastly, there is the metal wrench. The wrench that is taped onto the plastic chest piece of the halo, on the almost five year old. The wrench is for the parents, "in case of emergency". The wrench will remove the screws and the metal parts and take the halo off the child, in case of a car accident or a problem or in case we couldn't get to a doctor, to remove it "in case of emergency." But isn't this an emergency? The almost five year old, in the summer, wearing the device on her head that is attached by frankenstein looking metal to hold the neck that now contains more rods and screws? And would we be able to use the wrench, in a pinch, if we needed to? The wrench that I had completely forgotten about until I dug out the picture of the almost five year old in the halo.  The way that the sky turns pink on summer nights at the beach. Solar eclipse during therapy and EMDR = some major releasing. When I figured out that I can pause Instagram stories by pressing the screen. Brilliant. Adaptive driving assessment. Redefining disability. Challenging assumptions, labels & beliefs. Planning to roast a million summer tomatoes for soup. The discovery that potato peeler finger injuries are real and painful. Mine took 20 days to heal fully. Late night talks about poetry, death & dreams. About showing up. About presence and avoidance.
Nachos and guacamole from Las Olas. The joy of a new-to-us car for the manchild. The muscle memory of driving a standard. Windows down, sunroof open, music blaring. The sweet vanilla scent of the previous owner's cigar. Smiling while driving. Waiting to hear about the insurance complaints. Entertaining out of towners who flock to Maine in August. Planning for some solo time next week. A dip in the ocean is [almost always] an attitude changer. Playing wits and wagers with the whole crew in the sunshine. Watching the hummingbirds stop to watch us watching them. Esquites and watermelon at the beach. White sheets, window fan, scent trails of fading catmint. Adventuring to a craggy seaside walk. Shortening our plans when legs get tired. Managing expectations. Dahlias, sunflowers, lavender. I am not that jazzed up about the solar eclipse. Honestly, I am not prepared for the viewing.
The airing of the grievances. Last two weeks of summer countdown. Wow that went so fast. Seeing and hearing about the moms and dads dropping off kids at college. Knowing that in one short year, we will be doing that too. Nurturing roots & wings. Wondering if we are doing it right. Still. Re-reading Stephen King books that I have forgotten, due to my aging brain. Resisting therapy and EMDR right now. Feeling like I have done so much work already. Tired of delving deep into the past. Instead I am ready for now. Do I still have to do the work? I am tired of trying to heal. It is pouring buckets here today. We are almost in a drought again. I love the rain. The secret paths and twists and turns of the Franciscan Monastery. Visits with St. Francis of Assisi and Kateri Tekakwitha. Ducks who swim in the ocean and walk across the seaweed. Registration for the common application is complete. Work on college essays. Turning in summer homework. Remembering that he will have Senior privileges this year. And still having him hold my arm when we walk through the Port. The crowded bakery so early this morning. Humid. Yeast. Neighbors. Summer. A long and hot epsom salt bath. Don Julio over ice. Arnica cream on tight muscles. Saying no, when I mean no. And saying it again and again, when it's not heard. She loves her summer job. Working with little kids who love music and drama and theater as much as she does. "Mom, the little kids want to sit on my lap. Mom, I choreographed a song this week." This is her joy. Brooklyn Candle Company candles. Favorite scents are tobacco and firewood. Being reminded about who I am not, and who I do not want to be. The conversations with our favorite medical social worker, about how rare it is to be a female doctor who cuts through bones. A stop at the community pharmacy. A walk in the puddles to get ice cream on this cold and rainy night. The back to school email came yesterday. I will not read it for [at least] another week. Charlottesville, VA. I am not surprised or shocked by nazis and white supremacists. Because of our history. Because we elected one. And permission has been granted for the open rage of white men to continue. But I am saddened, angered and hurt again and again. He is dreaming of first class seats. I am dreaming of a new roof. Love and fury can exist concurrently. This I know. The taste of summer tomatoes. Add fresh mozzarella and basil + balsamic and olive oil. Almost perfect. Cats and books are keeping me sane right now. Talking to parents about how to talk about their child's physical differences. In a way that is truthful, supportive and that keeps the child involved. Including and encouraging the voice and wants of the person with said differences. College application spreadsheet. So many pieces, requirements & details. Vinho verde wine in the tall glass please. Reaching out to her. Touchpoints. Next week she travels to Maine. Wishing we were closer. Wishing I could make it better. Low gluten lemon poppyseed bread from Boulangerie. Taking steps to no longer admin a group of 900 people. Asking others to step up. I do not have enough bandwidth to continue giving so much of myself away. Dinner conversations about mass murderers, bombings, David Duke, white privilege and making change. Watching the bee balm die away. Wanting it to last all year. Emotional preparation for two new specialist visits during the first week of school. Filing a complaint with the State of Maine Bureau of Insurance. I'm a bit surprised that this is the first complaint like this I've filed.  Hearing the pitter patter of rain on the air conditioner all night long. He gets up for his long shift at work. Almost 18. Showers, makes breakfast, packs and lunch and drives himself there. Parenting teens is so strange and amazing. Walking the farmer's market. Hands on tomatoes, peaches and beets. Flowers even though my garden is full. The lingering scent of dill. Our chipmunks enjoyed our two tomato plants this summer. Maybe next year. Being dive-bombed by the hummingbird chase in the backyard. Monitoring the Facebook group of [now over 800 people] that I started in 2012, when I needed support about an experimental medication that we chose to pursue.
Responding to questions, false truths, worries. Wondering if I have bandwidth to keep giving away my time, knowledge and energy for free. Knowing the answer. Writing this post outside. The scent of phlox. The last day of Shakespeare in the Bunk for 2017. A part of her joy, her love, her people. A bittersweet day. Making peach cobbler. Eating it for lunch. Writing the email to the state to document how systems are failing my child. It has taken me two hours so far. Prepping for visitors next week. Texting her about my dreams that I rubbed her feet. And I don't even know if she likes foot rubs. I start my best writing while driving in the car. It's often quiet these days and gives me space to do some exploration and processing I will show you my scars if you show me yours. This is a two way street for me. I will never get used to the way things can change so quickly. How a person can be gone, how a body can stop working all of the sudden, how time goes way too fast. I wish I wasn't so put off by change. All I did today was email doctors. This is not an exaggeration. Learning to have boundaries is exquisite and difficult and critical. I keep relearning the same lessons over and over again. When I get a text or a call or a message out of 'nowhere' I am reminded to pay attention Sometimes I don't want to listen to my body. Sometimes I do. I accidentally called the cashier at the local health food store love muffin. He looked surprised & confused, but not entirely disappointed. In my past lives I was a midwife or a librarian or perhaps both. Why do some gas stations play music when I am pumping gas? It is way too much for my brain.
Baby birds are leaving the nest in my backyard, at the house where I housesit. Yes I see you baby birds and mama bird. Yes I feel the parallels. I wanted to roll in fields of lavender for my 44th birthday. It didn't happen this year (maybe next year?) but I did get an epic surprise birthday party with a pinata. I don't understand Snapchat. I am chronically sending people things I don't mean to send them. It feels not intuitive. I really just have it for the face filters. Beyond that, my brain does not understand. I'm wondering today if surrender is the same as giving up? I'm wondering how long a person can continue to fight? I'm wondering how to fight and to rest more too? This is a long road. I'm feeling depleted. Summer in Maine is a visceral reminder of how the sweetest bits disappear so fast. We are attempting to hold on to this last month of summer. xxoo Kristen |
