1. When art imitates life. And vice versa.
2. Looking for the light. In all the ways. And all the places.
3. Writing letters and speaking out. Encouraging others to do so as well. Reading the text of a friend who grew up in this town. Standing up for what is right. And remembering the option to opt out, if need be.
4. Trips to the ocean, even when it's 11 degrees. Living in wool socks.
5. Reading The Hate U Give. This quote “That’s the problem. We let people say stuff, and they say it so much that it becomes okay to them and normal for us. What’s the point of having a voice if you’re gonna be silent in those moments you shouldn’t be?” - Angie Thomas
6. Knowing that the quote above is not that simple.
7. Bourbon soaked chocolate cherries.
8. Remembering. Remembering. Remembering that we are not all having the same experience.
"We are not all having the same experience. Let's begin there.
Your experience is your own. As is mine. And though we can sometimes connect and find commonality, knowing great meaning in the presence of experiences intertwining, we do a violence to others and ourselves by holding and naming our own experience as universal truth. When we do so particularly around the landscape of affirmations and seeking silver linings, we ignore or deny the aspects of power, privilege and oppression present in the experiences being lived out in these very real human bodies.
I refuse to be silent while people, under the guise of spiritual consciousness and enlightenment, continue to perpetuate the idea that we, and we alone, are responsible for the unfolding of our lives. It is a polite and violent way of victim-shaming. You are allowed to be affected and impacted by the things that have happened to you, to your body. By violence and silencing. By the very real systems of oppression that many live under. By patriarchy and misogyny. By white supremacy and the criminalization of the poor.
We are not all having the same experience.
You are allowed to be affected. Without judgment or shaming.
And whatever you have experienced and known in all its terrifyingly painful and beautifully intimate particulars, I believe you." - Isabel Abbott
9. When a dream becomes a reality and moves into an action plan. First CLOVES Family Camp coming this summer.
10. Planning for extended family Disney trip.
1. The annual assessment that proves that she is still "disabled" and can qualify for secondary insurance. There is the pulling together of documentation, medical records, provider notes and school paperwork. There are yes and no questions that are not actually not that clear cut. There are boxes to check off and ratings to score.
2. One second everyday. I downloaded it, then got frustrated and deleted it, because I didn't upload any videos. Fast forward a few weeks, and I re-downloaded it and got a tutorial from a friend. Now I love it. Sometimes I need a hands-on training for new techie things.
3. Hugs that last just the right amount of time.
4. The 47 degree days in January that feel like an actual miracle.
5. His debate team has an undefeated season. And they win the State Championship title. This is a first for our high school.
6. Prosecco and Chambord. Roasted veggie salad + arugula + goat cheese. The best gluten free pizza that I cannot stop thinking about. Crispy thin crust with mushrooms, arugula, parmesan + truffle oil.
7. Fingers crossed that we just had our last trip to Boston till the Spring, when flu and norovirus season takes a downturn. Fingers crossed that we didn't pick any new germs up while we were there.
8. Ladies weekend in Ogunquit.
9. Not apologizing for needing movement & silence.
10. How "and" or "both" are my favorite choices.
1. After needing insulation and a new roof for several years, this home improvement project is finally done. What a huge relief. And a very boring, but necessary way, to spend money.
2. Saying to a friend "add this to the list of the things we didn’t know, until we had to know them."
3. The return of Tiny William Shakespeare.
4. Memories of the college food cart where I worked in Madison, Wisconsin. Where I learned to make Spanish TortilIa from scratch. I find the not-often-used mandolin to thinly and symmetrically slice potatoes and onions. I sauté them in olive oil till they are almost translucent. I beat the eggs and add it to the dish cooking it stovetop and then in the oven. I haven't made this dish for 20 years, and in a flash of memory , it returns to me.
5. The joy of homemade Ramen night. So many dishes to do, but oh so good.
6. The organization makes another $10,000 research donation. And plans are coming together for a long held, and never spoken, wish for a family summer camp. Dreaming and scheming. And following the magical thread.
7. Asking for a sign and receiving one.
8. He qualifies to represent Maine in the National Speech and Debate championships.
9. I know that I will never stop hunting for moments.
10. The tumble that reminds me [always] of how things can and do change in an instant. How even though brains are protected by bones and layers, that they are fragile organs not to be jostled or bonked. How sad and angry it makes me that we can just roll with a concussion, because we have practice and experience with medical life. We are experts in how to navigate systems and communicate with providers clearly and how to get what we need. And so, we sit and wrestle with how to help her to rest her brain, while it does it's healing and encouraging stillness and quiet, in a girl that is so very full of life.
1. Forty degrees and torrential rain makes it feel like spring. We lose so much snow cover that I can see the grass again.
2. Knowing that not everything deserves my attention or a response. Trying to remember that in the moment.
3. The local lab that employs the phlebotomist that we have known for 6 years. Her skill, big heart, kindness and compassion makes blood draws so much easier for the girl.
4. Questions.......how do you make the magic real? Why do small towns often live up to the reputation of being small minded? Why do we need more providers? DO we need more providers? Why aren't there more options? Why do some of the options work for some, but not others? When will I write the book? How can I be available for caregiving needs and also bring in more income? Why won't the driver's education place call me back? Why, why, why?
5. Pinot Noir and a low gluten brownie from Boulangerie. Nighttime snack of champions.
6. The feeling of weight being lifted off of my shoulders and chest as I empty my email inbox, reorganize shelves, toss papers and put items where they belong. I know this is true. But the feeling of relief is visceral after I do it. Why can't I remember this?
7. Reading books authored by other medical mamas.
8. Smudge finally has his own Instagram account. This fact, and giving Smudge a voice, brings me immense joy.
9. Scars. Quotes & songs about scars. Wisdom of scars. Platitudes about scars and what they mean in terms of the people who have the scars. The healing of an open wound. Scars.
10. Plans for an overdue friend weekend are in full swing. T minus 12 days till we convene for shenanigans.
1. We celebrate the new year with a newly created tradition. Oysters at Eventide before noon, without the usual hour long wait, as the rest of Portland is still sleeping after New Years Eve.
2. It has been so cold for so long. We have used 20% more oil than we usually do, as we've had the thermostat turned up higher than our usual 68 degrees. We leave faucets running, so the pipes don't freeze. It's so cold that I am sick of hearing myself complain about how cold it is. I wake up in the middle of the night hearing strange sounds. The ocean freezes. What? The ocean can freeze?
3. Pink winter skies that take your breath away. The full wolf supermoon.
4. We concoct a drink out of freshly squeezed grapefruit juice, lime juice, tequila and St. Germaine. She names it "The Denial."
5. The last college applications are submitted. There were so many supplements to write. The practice for the winter musical begins. I might already know all the songs.
6. I don't choose a word of the year [again]. It doesn't feel right to me.
7. The blizzard that canceled the out of state Endocrinology appointment, during the back to school week, that did not have much back to school time. Learning the word bombogenesis.
8. Late night phone calls.
9. Arnica on sore muscles. Epsom salt tubs. Wishing my skin and hair had more moisture during this time of year, because I feel dry and creaky. Finding a hot oil treatment and massaging my own scalp and hair with coconut oil. I am now a greasy mess, so I sleep with a towel on my pillow. I wish I had a shower cap.
10. Majorly purging the kitchen, dining room and my office. Piles to keep, piles of garbage and piles for goodwill. Hello to 2018.
Wondering when I will write the next newsletter. Finding the "balance" between intuition, time and when people tell me that they miss the newsletter when I don't write it.
Gifts and surprises.
My wanderlust is on high.
Reading about the witches of Salem. I'm surprised I don't know more about this.
The memory that returns from a few weeks ago. I was at Au bon pain at the hospital. The woman in the wheelchair without use of her arms and legs. The staff who carried her food, took her money out of her wallet and finished the transaction with her. It was kind, respectful and easy.
Walking the beach in the rain.
The coyote that howls right outside my bedroom window. I am completely awake now.
Asking her to create a necklace called Trust. I can't wait to see how it feels.
New provider. Conversations about square pegs in round holes and how they don't fit easily. Her words, "well at least she isn't letting us put her in the wrong hole."
Discussions about dreams. She asks, "Is it realistic?" In my head I'm thinking dreams are dreams. Are they supposed to be based in reality?
The hawk that is circling the backyard while I write this.
A small procedure.
I am in the corner, in the room, on the chair that is reserved for parents and loved ones.
I see the box that contains non- sterile, ambidextrous, non-latex gloves. The tools. The tiny headlamp that she wears. The sutures, to stitch and hold together flesh, that will heal and grow and become new.
Bodies and souls. Hearts and minds.
The way that the light finds it's way on to all of us.
Biscuits and gravy. The list he makes of his favorite foods that I cook for our family.
Remembering that my need to cocoon increases in fall and winter months.
The awareness that sometimes it's easier to like a victim, than someone who is vocal and standing in their truth.
The dream that I have cancer. Smudge cat wakes me up and saves me from the end of the dream with his meowing.
How it's okay if you aren't okay.
The restless sleep that happens when you know you have to catch a flight, dispense an overnight med or can feel the full harvest moon.
The man who is knitting a cable blanket at the bench at the beach.
Following the magical thread.
Solo piping plover and white crane.
Finally the milkweed puffs are ready. Picked up by the slightest breeze, they float all around the yard. I make wishes on them.
Anniversary dinner at Village Tavern. Watching the couple who is at the table next to us. Body language. On phones. Icy conversation. Silence. Working to avoid being that couple in another five, ten, twenty years.
Witnessing her six month mark. Nothing to do, but be present, listen and love her up from afar.
Dreams about driving the car into a frozen pond.
Apple pie, apple cake and apple crisp. So many apples.
Focused and clear communication. Expressing needs. This is a direct outcome of my work in EMDR.
Las Vegas. A white man with a semi-automatic rifle. An easy way to kill and hurt so many people. Paying attention to how people language this tragedy.
When the world doesn't make sense, going to the beach, laying on the stones and listening to the waves.
The knowledge that some people just don't get it.
The news that the hospital social worker, who has been a part of our lives for nine years, is moving on. Tears on the phone with her, she has one month left. Wondering who will take her place. Missing her support and kindness and compassion already.
We drive to Boston for a sleepover before appointments. The drive takes an hour longer than usual. It's 88 degrees and humid. We have queso and chips and tacos and tequila. The girl has her first mocktail.
Nerf wars in the morning, but we are unarmed.
Long appointment with some answers. I am grateful with grief and relief and sadness. My heart has been a bit contracted.
Right now, less is more.
Living the questions.
The way this song keeps following me around.
Protect yo heart.
Our 20th Anniversary is spent in separate zip codes. Hoping to celebrate this weekend.
We meet up with one of her besties who happens to be in the city for the day.
Shopping and eating and drinking water and coffee. The air is oppressive today and makes it hard to breathe. Finding books and not finding homecoming dresses. Riding the T. Harry Potter store and Indian food. Shenanigans. Boomerang videos. Hugs.
First time in a Lyft. Second time in a Lyft.
Overnight in the hospital. I am reminded that the staff she is assigned to can make or break our experience. We luck out with an amazing communicator who is kind, compassionate and loves her work. Saying thank you for Lauren and her gentle soul.
Lungs + the air that we breathe. Watching the monitors overnight, even though someone else is also watching. Visiting the patient nourishment center for the ice that is so crunchy. The push for help button is the last thing that I see before I fall asleep.
Remembering that the best way to get rid of the hospital stink is to crank the tunes, roll down the windows and drive fast.