One of the last vibrantly-colored days of fall. We’re sinking into more muted tones now, which are also lovely, but of a different kind. 🍁
Law of the Harvest
November 🌾 Every year around this time I start reviewing the last year & goal setting for the next year. I like to do it before the holidays so I can hit January/the new year with a sense of purpose—especially since the dead of winter otherwise fills me with dread 😆 This year didn’t look like I planned, & yet I’m proud of the uncomfortable mountains that were confronted & the growth I experienced. Your late 30s really do seem to be about coming to terms with the naked truth of things. And as always, I feel excitement for a new start, a fresh set of projects, a new perspective, and new milestones to reach.✨
"How Was Your Day?"
Wagging ponytail
Her white socks on the hard floor
Sprinkled with wood chips
A mother’s haiku meditation on clues left by her nonverbal child. 💛
Need
We climbed back in the car recently after a family outing outside, and I was completely ebullient. Deeply exhaled joy over the saturated colors of mid fall and crisp air and wide open space to breathe and move and see and feel. Nothing incredible. Just beauty. Just my people. Just… space. Being. Peace. AIR.
“It’s like MEDICINE to you.” Dan expressed emphatically. “I don’t think you know how good it’s going to be for you until you get back.”
“It IS,” I acknowledged, camera around my neck for the first time in a month, pondering on the fading light of golden hour and how very much I need to see it. Need to notice. Need to unplug. Need to create. Need to catalog the beauty, the light, the shadows. Not just mentally but physically. Artistically. Habitually.
“It really is.”
Surgery 2023
Lydia had surgery yesterday—it went well. We’d planned 3 surgical procedures & two tests—a full schedule. Anytime Lydia has any procedure done that requires anesthesia it’s a big deal. Her low tone puts her airway at risk, & her pacemaker requires additional modifications & precautions. The entire surgical team makes adjustments, bringing in extra staff members & using special meds to ensure her safety. Part of the reason we piggyback as many items as possible when she is sedated is because it’s such big deal—we like to do it as LITTLE as possible. Her doctors are wise & carefully evaluate benefits v. risks. Yesterday her ENT pivoted in the moment & decided the riskiest procedure was unnecessary, & though that was a significant change in plan, we trust his judgment.
Being a medical mama is difficult. I have been through many surgeries & it’s strange knowing that we will inevitably go through many more. It’s even STRANGER having a relatively specific date for some of them—we’ve had a ⏰ ticking since the day Lydia’s pacemaker was implanted. I walk into the surgery waiting room, stare at the benches & chairs, & think, “Ah yes. You, again.”
It is not an easy thing to send your child off behind heavy hospital doors knowing you can’t follow, no matter how capable the arms of those that carry her. That distance is so far. That pull is so agonizing. That wait is so restlessly long.
And the hospital, I have learned—speaking of the healthcare experience generally—is never easy. Never smooth. Never without heartache or trauma. No matter how simple the procedure or how short the stay, this is a place of pain first, then healing.
Five minutes after they took Lydia back, a code blue went out over the intercom. It broke me. There are unspeakable things… things you see, things you experience, things you feel. And we have. That moment hit them all. Like so many, I have a hospital past that lives in me—trauma—& while my mind knew my baby was probably ok, my body didn’t. My memories didn’t. We found a room & I collapsed. Cried. Put myself back together, while somewhere someone else worked on my daughter. And somewhere else, another team rushed to save another life.
This is the hospital. These were some of the thousand thoughts that flooded my mind in that moment. In addition to how when you’re in a hospital all that’s outside the walls fades away & you don’t care about sides you just care about LIFE & your loves & why is this the one place we can actually SEE?
Today we are home and I sat on my bed and combed Lydia’s hair while she sang to Taylor Swift. I gently pulled her strawberry strands back and noted her ears full of blood from yesterday’s surgery. My own body has been sick from the stress, but we are home and happy. We were discharged with a list of aftercare instructions, some prescriptions, some emotional bruises, and a reaffirmation of the quintessential hospital lesson: We are the lucky ones because we have each other. A little bit of pain, a lot of healing.
Impromptu Fall Photoshoot
Lydie 💛 Daddy 🩵 Fall 🧡
The Birth
Of all the parts of that day, what stands out to me most—what comes echoing down the halls of time thundering through my soul too threatening to be ignored—is the silence.
She was born into silence.
There were no cooing and chatty nurses, like those who had wrapped and cuddled my earlier babies. There was no smiling, laughing doctor greeting her with open arms.
There was silence. There was dismissiveness. There was a curt, “The baby is in distress.” There were hushed whispers and turned shoulders. Closed circles. Averted eyes.
There was immediate recognition and desperate glances. Gripping fear and searching faces. Words—a diagnosis that I KNEW was ours, but I COULD NOT SAY out loud. For days. Because neither could they.
They taught me fear and shame in a matter of seconds. Instants that burn in me still. Both in pain… and in purpose.
Because as surely as I knew what “it” was, then, I know who SHE is, now. And I wouldn’t trade her for the world.
I wish I could go back. To that mother that was me being born by fire in that delivery room. I wish I could hold her hand like she deserved and look her in the eyes and labor with her through that transition into Holy Advocacy…
I wish I could be the Voice in the room that cleft the Silence.
A voice to leave it bruised and bloody on the floor, powerless to wield its painful lies, again.
A voice of truth, and encouragement, and hope, and promise.
A disabled child’s mother’s first cry.
Seasonal Shift
Simultaneously bidding farewell to the golden days of September & welcoming the days of #lovelydeadcrap autumn (IYKYK).🍂
✨Expect Miracles✨
I remember when my oldest son was born. The moment they placed that baby in my arms and I went from being a woman to being a mother. The transcendent, irrevocable transition into responsibility for another human being. The weight and wonder of motherhood is profound.
Being the mother of a child with a disability is that responsibility, tripled. And I admit, sometimes it overwhelms me. There have been mornings when the sun breaks through my window and I have greeted it with the thought: This is too much. There are too many things to learn, to overcome and fight through—on every front. The battles are many; the allies are few. How will we ever do it? How can I do this day?
In my church we sing a song: “Heavenly Father, are You really there? Do You hear and answer every child’s prayer?”
This weekend at church was something we call the Primary Program—it’s a meeting in which the kids give the sermon—they sing songs and each child recites a line for the congregation. Our Primary is fully inclusive, and Lydia had a line in the program. But Lydia is largely non-verbal, so her line was one word long: “Friends.” She also hates to perform, and refuses to do ANYTHING on command, so the challenge was getting her to say the word on cue—at a mic—in front of hundreds of people. It was MONUMENTAL.
We practiced for weeks and it did not go well. She did not like the mic. She would lick it or make funny noises in it. We bought a fake mic to practice. She did not like being forced to wait in line and climb steps on cue and would cry out. She certainly wouldn’t speak on cue. It looked like we were headed for disaster.
On the Saturday rehearsal before the program, I took five minutes to teach the Primary about Down Syndrome. We discussed the opportunity to cheer each other on in this scary public speaking venture, and to never laugh at anyone when they make mistakes. I explained that Lydia, especially, needed our full support, and that we were all there to be each other’s cheerleaders and friends.
And then it was Sunday. Lydie still had not had a really successful run at the program, and I was full of dread. I SO wanted our congregation to see her succeed and to see her as capable. But regardless they were going to see us try. I rolled over in bed with a giant prayer in my heart, and God whispered back these surprising words:
EXPECT MIRACLES.
He reminded me of this girl of miracles and the many battles we have been through with her—how she always seems to draw the short straw; and yet He helps us come through, anyway. So I took a deep breath, and said, “Okay.”
You can only understand the chaos of the Primary Program if you’ve seen one. Or maybe if you’ve read the Best Christmas Pageant Ever by Barbara Robinson. Lydie is in the youngest class, and when they lined up to say their parts at the mic, she was whining. I took her by the shoulders and pointed to the kids in her class and narrated: “Lydie: walk walk, step step step, ‘Friends.’” – Outlining the procedure. It CLICKED. She started saying “friends” immediately. I prayed that line to move as fast as it could so we wouldn’t lose the moment, and wouldn’t you know, she climbed those steps, grabbed that mic, and said her “Friends” right on cue. My eyes swam with tears. And behind us, the Primary kids, who had been on pins and needles and literally on the edges of their seats peering to see if Lydia would pull through—cheered to each other over her accomplishment.
It was inclusion, it was practice made accomplishment, it was literally unprecedented for that little girl.
“Heavenly Father, are you really there?”
“Expect Miracles.”
Frolic
Do you just need to go pick wildflowers, frolic, and feel joy? Same. But sometimes I forget? And that’s why God made people like Lydie. 🌻🥰
Meditation
“And into the woods I go, to lose my mind and find my soul.” -John Muir
I am such a mind-heavy person. Even as a child I lived in my head. More so than other children. Chasing stories. Chasing fears. Observing, logging, sponging, analyzing.
How old was I before I learned how to breathe? Not just take in oxygen but BREATHE? My twenties? My thirties? No one taught us how to meditate when I was a child. This is new knowledge—a new process. To push out the noise and find stillness. To connect with my body. (I have a body??) To like my body. To welcome the quiet. In the space after trauma, quiet is threatening, and you have to learn to accept it and trust it. After a lifetime of internal trauma, quiet is foreign. I usually don’t even recognize it’s missing. Anxiety is my baseline. So I have to learn; I have to learn. I have to breathe. I have to… be.
And do you know who the best teacher is? Trees. Trees and light and water and hammocks and hiking. And if I’m indoors it’s poetry and piano and fresh fruit and yoga and showers and combing my hair and journaling and study and things that I have been drawn to all along and never knew why they were calling.
It was the calm. I’m listening now. I crave you, soul songs, lead on.
Heart Song
He was singing, and the word was “heart.” 💛
***
i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart
i carry your heart(i carry it in my heart)
- e e cummings
Golden
🎗️September is pediatric cancer awareness month. It’s a month we remember Tessa, and Leo, and Indy, and many many more sweet fighters and their families. You have our hearts this month and always. 💛🎗️💛
***
🎗️September is pediatric cancer awareness month.🎗️ Today, 43 children will be diagnosed with cancer and sadly 7 children will die from this disease.
💛 The causes of childhood cancer are unknown and can not be prevented.
💛Due to a lack of research, some pediatric cancers have a zero percent survival rate, either at diagnosis or recurrence.
💛All 16 different childhood cancers receive 4% of the national cancer institute's nearly $5 billion dollar budget while other cancers receive much more.
When a child is diagnosed with cancer, the whole family is affected and we want them to know they are not alone in this journey.
To show our love and support for the many families affected by childhood cancer we are turning the internet GOLD this September.
@TheGoldHopeProject is a nonprofit organization of photographers who aim to provide free portrait sessions to families battling pediatric cancer while funding innovative pediatric cancer research.
Join us by tagging your images #teamup4goldkids or to learn more please visit @thegoldhopeproject.
Soccer Sunset
I wanted to stop the game right then and have a team photoshoot, but Coach said no. ☹️
On the Sidelines
This is our lives, now. 🥅 ⚽️
A No-Brainer
“Mom, here’s the Riddle Of The Day we did today. A doctor and a kid went fishing. The kid was the doctor’s son, but the doctor was not the kid’s father. Who was the doctor?”
“I don’t know, who?”
“…His mother!! Mr R says that was made up in the 19(mumbles)…a long time ago, when not a lot of women were doctors, and no one got the riddle right back then.”
“Did anyone in your class get it right?”
Scoffs. “Yeah, ALL of us.”
The kids are alright.
New Perspective
Humans are critical thinkers and systemic beings; it’s how we survive and how we feel safe in the world. We create structures and boundaries to maintain and support order (at least for the dominant group). But there’s always outliers to the system, and people with disabilities are some of the most obvious outliers. As system-programmed participants, we generally respond to outliers in one of two ways: either with compassion and understanding, or more commonly, with fear and apprehension.
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People with disabilities used to scare me because I didn’t understand them. I lived too much within the system of rules and boundaries and expectations. But now I see differently and with a wider perspective. Take Lydia’s age, for example. When I drop her off at kindergarten, she is 5. But when she is at home, jabbering away in her own language or needing me to feed her, she seems much younger. Lydia lives outside of time in many ways—it’s fluid for her. And when you remove specific boundaries, all that is left is core principles: childhood and parenthood. Nurturing and love.
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Rules, systems, expectations—they keep society going, I get it. Milestone-making productivity is a great thing. But it’s not the only thing. And stripping away some of the “rules” has opened my mind to many of the core aspects of humanity in their purity: Joy. Pain. Connection. Wonder. Communication. Struggle. Determination. Triumph.
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Not only have I replaced fear/discomfort with compassion and understanding for the outliers, now; I CELEBRATE them, and thank my lucky stars I get to learn at their feet.
Fly High
Thought your feed could use some Lydie joy for the long weekend 😄
The Hero We Need
I hope this gives you motivation to finish the week strong 💪🏻 and I hope I’m not the only one who needs it 🥴😅
Illuminate
✨Wonder✨ The older I have become, the better I have gotten at recognizing people & environments that make my soul & mind expand instead of feeling small. How crucial that is for the human spirit.
#am_nationalparks #mangosdoyosemite
