Why I’m Marking This Unorthodox Anniversary With Cupcakes and Wine
Three. Six. Five.
365 days of knowing. 12 months, one trip around the sun, four seasons (technically two where I live – Summer and Not Summer). My life is entirely different than it was 366 days ago. Is this an anniversary? A day to be celebrated? I’m not certain if I should dive headlong into a box of cupcakes or a case of wine. Both seem like viable options for this day. February 12, the day we knew.
I remember how my then 3-year-old daughter was dressed when we went to speech therapy that day — a cute turquoise and purple dress that really made her blue eyes seem bluer. Her blonde hair was up in pigtails and the cascading curls formed ringlets I could just twirl in my fingers for hours. I remember what I was wearing — blingy jeans and a white top with flip-flops and recently pedicured toes (hot pink with 13.1 on my big toe in celebration of my recent half-marathon). I had time and desire to put myself together before speech therapy 366 days ago. Now it’s pretty much yoga pants, a messy bun and a hoodie that may or may not be clean, and I think I had a pedicure a few months ago.
I remember the call I stepped out to take during her therapy session. The words that began to fall through the phone and wash over me cannot be unheard now. “There is something wrong with her brain. She has a rare condition. Her brain wasn’t formed correctly. There is nothing you did. She was born this way.”
I’m sure there were words in between those statements, but those are the ones I remember now. I stood in the sunny hallway trying to absorb what the doctor was saying, but the words were coming too fast and I couldn’t catch them all as they fell down around me like icy rain, soaking me to my core in disbelief and shock. I walked back into the therapy session where my daughter and her therapist were happily blowing bubbles in effort to get her to sign and say the word “more.” I remember the bubble container was green and the stick was yellow. I remember how the bubbles seemed so happy and out of place for the news I was trying to understand, how they floated through the air whimsically as my heart sank to the floor. I remember how caring and patient and loving her therapist was that day.
This is a day for reflection and probably binge-eating cupcakes because that’s just how I roll. It feels like a birthday or a death day of sorts. Maybe it’s both. Today is the day my old life ended and my new life began. It’s amazing how the knowledge of something that was always present, just lurking underneath, can end one reality and begin another. Nothing changed except my understanding of my daughter. On this day, the me who was mother of four, photographer, business owner, runner, queen of having-it-all-together was irreversibly changed, ended, morphed into an infant me who had no idea how to function. I left therapy that day a colicky newborn with unrelenting tears and exhausted from the trauma of being born into knowledge and the awareness that my knowing was only just beginning.
In the last year, we’ve both learned to speak. She went from a vocabulary of less than 150 words to regularly using sentences. In the beginning, we celebrated her saying the word “more,” but now she says “I want more, please,” and we can finally communicate without tears and meltdowns. I’ve learned an entire language I had no need for before. Words and phrases like pachygyria, clonazepam, hypotonia, apraxia, cortical malformation, crossing the midline, low tone, toe-walking, W-sitting, genetic abnormality, sensory processing disorder, and IEP addendum are now a part of my vocabulary, though communicating about these things do cause tears and occasional meltdowns. She learned how to pedal a bike, an achievement that didn’t seem possible a year ago, given her brain structure. I learned to crawl through the hard days, eventually pulling myself up to standing often to fall again. Some days I can even walk upright without support, and I’ve learned to enjoy those days, though I still unexpectedly smash my face on the jagged coffee-table edge of depression, anxiety and the sadness that accompanies the death of the old me. I’m a bit bruised and battered, but I’m still walking. She trips and falls often in transitions between carpet and tile floors. I trip and fall in transitions between everything, so we kiss each other’s ouches and lie down on the floor together. She finally started sleeping through the night. I fell into a nap time schedule and have accepted that I have to rest my broken heart and full head to survive. She learned how to use a fork and drink from an open cup. I learned to eat the solid foods of her diagnosis, tasting for the first time sensory processing disorder, genetics, neurology, seizures, therapies, special needs, self-care and grief. I’m digesting it all as fast as I can so I can take in and take on more, though I’d really rather eat cupcakes.
I have to celebrate our successes this year because there have been so many; they seem immeasurable for both of us. We went from shock of trying to make sense of a new reality to crawling towards the goal of getting everything in place for her – services, insurance, therapists and the never-ending stream of specialists. We learned to run, limping at times, through the hard days and the good days and everything in between. I fall down often, but I now know how to stand again and carry on. I look at her differently now, as though I can see through her skin and skull into the malformed brain that changed our lives. I simultaneously see the little girl I used to know before the diagnosis and the one that pulled me upside down and backwards into this new life. Together I see her flawed genetic makeup we inadvertently passed on to her, as well as her perfection. I see her joy. I see her smile. I hear her laughter. I hear her say new words and phrases and my heart sings with her when she achieves new things. I labor to focus on those joyful moments, as though my senses have only just now begun to work after 365 days of trying to understand the words that fell through my phone into my infant ears. My eyes are open to see the accomplishments behind us and the hope in front of us.
Her development is ahead of mine now. I’m still a toddler, throwing myself down in an explosive tantrum about the unfairness of it all. I don’t wanna go to another doctor. I don’t wanna read another evaluation. I don’t wanna be confronted again with the differences between my daughter and everyone else. I don’t wanna. I’m emotionally fragile and have been handled with great care from my dearest loved ones, tucking me in when I need it, holding my hand when I’m afraid of the dark, kissing my forehead when I’ve fallen. They scoop me up in their loving arms and tell me it’s going to be OK. I’m so thankful to have such love around me because I know how much I need it at this formative stage of this new life.
My birthday may be in August, but February 12th is a day worth celebrating and maybe mourning. It’s the day I began to live an entirely different life than the one I had 33 years prior. It’s the day I can’t undo, the day everything changed. The day of knowing and choosing to run headfirst into unknown and unpredictable territory. Today I am one. Happy birthday to me. Now pass the cupcakes. And the wine.
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