2020, the year of the COVID-19 pandemic, has felt hard. I’m certain most of us have felt varying levels of anxiety and fear, have struggled with the unpredictability of it all or battled with impatience. Humans are creatures of routine, and I think it is safe to say for a long time we all hung on to the idea of returning to “normal” before we started envisioning what a “new normal” could look like, for our families, our communities and the whole world, really.
While, as a collective, we all have to face up to the pandemic, each one of us still travels on their own journey, facing the obstacles that life, that beautifully capricious adventure, throws at us.
In my own microcosmos I was recently meeting my limit, that infinite place of surrender, when my 3-year-old son Winter was diagnosed with a rare genetic disorder called ADNP-syndrome. He had always met the societally determined “milestones” late but was otherwise a mellow, albeit quirky, happy little fellow. It wasn’t until he didn’t start speaking at all that we sensed something more serious might be at hand. When our neurologist called us (because COVID) to give us the news that will forever change our life, I cried silent tears of despair.
Children with a mutation in their ADNP gene face intellectual delays, are largely non-verbal or have very limited speech. More than 90 percent develop mild to severe autism, some have seizures, at least half face developmental regression and a lot of these kids have structural heart problems and brain abnormalities.
I can only describe the initial days after finding out in the words of French writer Jean-Baptiste Alphonse Karr: “plus ça change, plus c’est la même chose;” the more things change, the more they remain the same.
Our daily life was hardly impacted in its structures. Diaper changes, nourishing meals, playing, laughter, homeschooling my older daughter, household chores, etc. Yet we were facing the reality that our son’s life, our lives, was forever altered, while simultaneously trying to process all the new information flooding our brains and dealing with the bureaucratic nightmare of setting up doctor appointments and therapies during a pandemic.
This past month I have been feeling it all. Determination. Hope. Confidence. Trust. Doubt. Anger. So much anger. Fear. A lot of fear. A healthy dose of self-pity. But most of all, I feel love. After all, infinity IS the amount a mother can love her own child.
The emotions would come up with a force unknown to me. I chose to sit in them. To feel them deeply. To make peace with who I am now, a special needs mom, and to meet myself where I am. Grieving the dream of a future that never will be. Knowing that new dreams will surely form over time.
Reminding myself of the one thing I know to be true: all we have is NOW.
All my fears and worries and dreams about Winter’s future are just thoughts. Made-up stories of the human mind. I have as little influence on tomorrow as I have on changing the past. All I ever have is the present moment. With every breath, I can choose to do the things that will make life joyous and peaceful for me and my loves today. I simply do not know what man Winter will grow up to be and whether or not he will be able to talk or work or find romantic love or live independently. However, just for today, I can make him laugh, make him feel loved and show him how to live fiercely by his strengths rather than focus on his limitations.
I’m not always succeeding, of course. It is a practice. What helps me is to create mindful moments wherever I can. To really see the flowers blooming all over the city, to really smell the scent of the freshly roasted coffee beans, to really feel the damp morning grass underneath my feet. To engage every sense.
To cope, I anchor down in rhythms and focus on the things that bring me joy. I make time for mediation, yoga, a glass of wine with a friend (6 feet apart!), a calm conversation with my partner. I’m finding that the peaches at the farmer’s market at Scissortail Park don’t care about ADNP — they taste as sweet as can be. I’m finding that an early morning swim and picnic at Lake Arcadia is just what we needed. I’m finding that the cortado at Elemental Coffee is still the perfect balance of bitter and milky, no matter if my son is disabled or not.
For a little while, I am withdrawing from social media and cutting back on screens. I’m doing whatever my intuition tells me will help me accept the beautiful impermanence of life. I focus on me, then my family. The problems at large will have to wait for a moment. At this point in time, I can only heal myself and then create positive ripples from the inside out.
I’m practicing not resisting when the sadness comes, or the pity or the anger or the despair. But surrendering to them. And when the resistance comes, as it regularly does, not to try to avoid it, but sit in the fire. Trusting that these emotions, like everything in life, are impermanent as well.
So if you are meeting your limits right now as well I urge you: Be kind to yourself. Go easy now.
All we ever have is today.
Eva-Maria Smith, a South-Germany native, has lived with her American husband Truman, her daughter Smilla and her son Winter in The Plaza District since early 2019 and has come to cherish OKC. The published writer and photographer still loves to shoot a motherhood session here and there, but is focused on writing her first book this year. Part memoir, part prose, part photographic journal, her heart-work focuses on well-being in motherhood. Follow the slow-living aficionado, coffee-lover and mindful mama on Instagram @eva.maria.smith or www.evamariasmith.com.