The pot bubbled and steamed, red hot like lava; I’m mesmerized and enchanted. The smell filled my soul and I was suddenly small, tiptoed and peeking over my nose for a glance at the mysterious brew. I am filled with love and warmth, earth and roots, history and spirit; I am filled with the touch of every loved one who passed along the wisdom of life and recipe.
The volcanic like lava of the deep red sauce bubbled up and spit singeing my arm and I returned to my adult form–all other senses came back online. She yelled at me shrill and panicked, “Mommy!! It smells disgusting in here!!”
The hairs on every inch of my being stood up. Hypervigilence kicked over into active mode and my internal monlogue activated: Is this an aura? Sh**! is this an aura? Last time she had a status seizure it started by her saying something smelled disgusting. Look at the time. You will have to time it. 11:43 AM. It’s 11:43 AM. Where’s your phone? Calm down, Rebecca, you have all her meds. You know how to handle this. Determine if this is a real smell and move on.
“What smells disgusting baby girl?”
“That! Are you cooking? Can you move it? Throw it out!!”
Phew!! It’s a real smell. But, damn it, autism! FU TSC and epilepsy. My culture, my heritge, my freaking pot of sauce on the stove is disturbing to my child. I’m a mutt–a product of Ellis Island America; I have very little culture and heritage to speak of and you pervert even that. You take everything. You, the dragon, who lie in wait and snarl your teeth at the most unsuspecting moment.
Tuberous Sclerosis Complex (TSC), TSC-Associated Neuropsychiatric Disorder (TAND) and associated autism, and epilepsy have pervaded every moment of our lives. TAND is a complex beast–a dragon who has wrapped herself around our baby girl and woven herself into the fabric of our family. Dragons are both beautiful and fearsome. Autism is a main feature of TAND and perhaps one of the most tragically glorious and horrific of the dragons.
Our girl is like Daenerys from Game of Thrones with her dragons. Her dragons are both part of her and threatening to consume her. The dragon is rigid, she has sensory issues, sleep issues, impaired communication and social interaction, impulsivity, food aversions, and more. The dragon steals from us because it does not live like us; it does not derive joy from the same things. There is still great beauty and joy in this dragon, but make no mistake, it is a thief of our family’s joy and peace nonetheless. It is not easy to learn to live with a dragon; and, it is certainly not easy to learn to cook for one.
As I looked between the stove and my daughter, contemplating my next actions, for a horrifying moment, my memory flashed to an article I read on the shooter (who shall remain nameless) at Sandy Hook who was also autistic. In it was described some of his difficulties including: “He was upset [by]…the smell of her cooking, which he mostly did not eat because of its texture.” I thought of his mother, who he slaughtered, and his demons and the unspeakable horror that he unleashed on this planet. Whether autism was a factor in that or not I do not know, but it is certain that when his mother was living she was controlled by it.
I came back to my senses from the vastness of worst case senario. If I were to wax poetic about the enormity of the dragon, for dragons by nature are large creatures, this would no longer be a blog post, but rather a dissertation or novel of some sort. The hole is deep and bottomless and today is not the day to fall down it. Instead, let’s get back to the sauce.
My heart was in my throat but it was also on that stove. How to tame the dragon? I was not throwing out my grandmother’s sauce and much of that had nothing to do with the sauce–it was about so much more. It was about taming the dragon and about me. I rarely cooked like that anymore. It takes time, which I don’t have, and humans who want to consume it, which I also lack, (our brand of dragon doesn’t dig Italian–she only digs hot dogs, chicken nuggets and chips…it’s a short list), and it takes a dedication to myself, which I am severely lacking. The thing about dragons is they take up a lot of room. There isn’t much space for anyone else to exist in their presence. I spend much of my time taming the dragons and soothing those around her and within her. That isn’t going to change, so I returned to the taming and soothing.
“Baby girl, Mama can’t throw everyone else’s dinner out. It’s just a pot of sauce cooking. I know it smells bad to you. I’m sorry about that. How can we make this work for both of us? How about we close the playroom door and you hang out in there until the smell gets a little bit better for you?”
She happily took her Christmas hoard into the playroom and holed herself up in there. I returned to the bubbling pot of lava, stirred it, and reduced the heat; and, my heart broke a little bit more. I never think it possible, but somehow it always is–for my heart to break more than it already has in life.
It was the reality of what the dragons have taken. That of what I will never be able to pass on to her. The love, the tradition, the heritage, the history in that pot. I thought of my grandmother, a huge influence in my life, and how my kids have met her but once. Now 95 years-old and her mind fading, they are unlikely to see her again. I thought how there are so many loved ones that I met but a few times and how cooking this recipe brings them back, and how she won’t even have that. How different her life is from mine; how different her life will be from mine. How different my life is from what it was–hijacked by dragons.
As I stirred the pot I thought, how different my life is from my Grandmother’s. How remarkable, really. I remembered her words from our calls when the kids were little.
“Becky, how do you do it?! Two little ones–so close in age. How do you have so much energy to take care of them?”
“Grandma, how did you do it?!? I don’t know how you did it! All your kids were twins! You always had 2 littles ones!! 3 sets. You had 2 babies with 2 toddlers running around! How did you do it?”
Her answer was always: I don’t know. Then she would weave some beautiful story about the past. How things were different–lines of stroller parking outside the grocery store where you could leave your babies while you shopped, friends to help with your kids, etc.
And my answer to her always: I don’t know. I still don’t. I don’t know how I find the strength everyday. I don’t know how I found the strength 5 minutes ago to face down a smoking dragon and spitting, aromatic pot of sauce. I don’t know how I’ve raised a child with a rare genetic disorder to the fine age of 9 and a brother with multiple differences by her side. Because, the beauty and the mystery of life is no one knows the how along the way and when we get there the how matters little anymore.
We get there bit by bit. Ingredient by ingredient–like making the perfect sauce. And, the recipe changes over time. I am certain my grandmother, a widowed mother of four children (two sets of twins) felt as though she would never make it to the next day until she did; and, she did not know how she would survive more twins when she re-married and had another set until she did.
Some pots of sauce are delicious, and some pots of sauce you end up tossing; they are all merely moments. Moments we must thread one to the next. And that, that I can teach to my beautiful little dragon child.
In the meantime, I need to remember to invest in more of the moments that replenish that which the dragons have taken away–like making a steaming hot pot of sauce.