When fog settles deep
With gloom it’s best companion
Forget not your light
When fog settles deep
With gloom it’s best companion
Forget not your light
I gazed up at the blue skies mottled by billowing white; bright reds and golds jutted upward cutting through the azure plain. My soul was weary. There was a distinct chill in the air and a cold breeze blew that rustled the leaves casting them down to their final resting place. My thoughts danced around the archetypal shadow of loss and death.
The weather fit nicely like a warm, woolen, worn boot; it was like the Octobers of my childhood. I took solace in the familiarity. It was not like the Octobers of late with their warm breezes and their confusing temperatures—the harbingers of climate change. I watched the wind whip a pile of dried leaves into a small cyclone. It mimicked my thoughts and the churning within.
We received the diagnosis of Tuberous Sclerosis Complex (TSC) for our sweet baby girl in October. Every year when the leaves die so does another piece of my heart. Like every October, it is a bit different and there is great beauty, loss and grief.
Til the day I die, I will carry the extraordinary burden of grief that was bestowed upon me in October.
I always wanted a girl. I was ecstatic when I found out I was carrying a girl. I never dreamed of doing her hair or of princess dresses, but rather of bestowing upon her the secrets and great gifts that have been accumulated over generations of womanhood. It was my greatest desire to share with her the power of being female. Like every mother, I rubbed my belly and infused the baby growing in my womb with my hopes and dreams. Some basic—to be provided for; health; and survival—and some more grandiose—to be a force with which to be reckoned; to know her power and own it; to love and appreciate art, music, literature, and culture; to be kind, ambitious, fair, loving, philanthropic, an activist, and, yes, a feminist.
All these hopes and dreams came crashing down like a poorly constructed house of cards when met with the diagnosis of TSC and the hope was replaced with a single hope: let her live.
Please, to all the powers that be, let my baby live.
And, so began my journey into grief.
I skipped right over denial and anger—there was no denying the images of her tiny body floating in my womb and her heart riddled with tumors. I was too shocked to be be angry. I moved right on to bargaining.
Please, I will do anything; I will give anything; I will be anything; just let my baby live.
And, she did.
She came screaming into this world a couple months later, pink and lovely as could be, and still there was no denying that she had TSC. Yet, the only thing predictable about TSC is the unpredictability. Our sweet girl could be very mildly affected—lead a completely normal life with monitoring and the help of medication. My hopes and dreams blew back in like a gust of autumnal wind and filled my soul.
There was a bottomless pit of grief, that I could not identify and yet felt so intimately, and I was at the bottom. But now, there was a ladder of hope on which I began to climb out of that pit. Nevertheless, grief never leaves. It marks you like a scar on your soul. While there was hope, my grief merely shifted.
Please, I will do anything; I will give anything; I will be anything; just let my baby remain seizure free, let her avoid heart complications, let her avoid a life-threatening tumor in the middle of her brain, let her avoid autism, let her live.
My pleadings became ever more complex like chantings to the gods. Under all the bargaining was intense and immeasurable sadness—nameless grief. I did not comprehend that I could be grieving because I had this beautiful, tiny, amazing human in my arms who smelled ever so sweet and made tiny squeaks and coos. There is no grief when your child lives.
Then came heart failure—heart functioning “incompatible with life.” She was four months old. Let her live became an ever present chant in my head. I heard it constantly. Soon to follow were seizures then catastrophic epilepsy in the form of infantile spasms then confirmation of a SEGA.
Let her live. Let her live. Let her live.
I was too busy caring for her to feel—to notice the grief I was dragging along with me like a monstrous ball and chain. Until the quiet hours of the night when the mantra would cease and the only sound would be her tiny sleep sounds and the enormity of it all would settle on my chest like the weight of the world.
This can’t be real. This can’t be her life. This cant be our life: Denial.
Why? I hate this! I can’t do this anymore!! I did everything right. I listened to the doctors. I took all the vitamins. I hate the world. F*ck this. F*ck TSC: Anger.
Please, just let her live. Please, please, please: Bargaining.
She grew and we welcomed her brother and another October came and went and an immense sadness haunted me like a ghost. The specter of the loss of the life I thought she would have, the mother I thought I would be, the family I thought we would be, the life I thought we would lead haunted me. Fear crept in: Depression.
And, she lived. She has lived. She continues to live and thrive with Tuberous Sclerosis Complex: Acceptance.
It was not until I settled into the sadness and the loss that I was able to identify the reality of my grief—the both-ness of it. The death of a dream and the birth of what is and who she is exist hand in hand. There is a deep and ever evolving grief in that. My dreams have shifted as has my grief.
October to October I have seen many of the dreams I had for my girl fade from verdant hopeful green to blazing bargaining red then wither and fall to earth in grief filled loss; and, I have learned that they will be replaced with new dreams that bud and bloom in the full glory and newness of green hope. My grief is part of me—as natural and integral as the tree’s life cycle.
As the Octobers pass my mantra has changed. Now it is:
I fear her loss because of my love. Let my love surround her. Let our love sustain.
It was as if my life began the moment she gasped her first breath and it was not; it was the moment my life began anew—my life as a mother. This new life was supposed to be my smooth paved roadway fresh and free from debris—the one I merged back onto after the bumpy detours and construction of the past. But, fate and the universe have plans of their own. Instead, as our family drew our first breaths of air together our caravan careened off-road and entered an equally bumpy, detour filled journey with no maps, no GPS, and no intention of ever returning to the well-traveled, smooth-paved roadway the typical travelers sojourn.
My tumultuous past is visibly mapped out in faint white juts that jaunt across the olive skin of my arms and traverse into deep sinewy canyons; they are detours that innocent little fingers have always known and lovingly traced as they soothed themselves to sleep. Disconnected from and ashamed of such a burdensome history and its physical manifestations, I hoped to leave it all behind when those innocent beings entered my world.
The canyons healed long before we drew those breaths together and the map of my past rarely crossed the junket of my mind until the hot rays of the summer sun shed the layers of concealing sleeve above and revealed the delineations below, and deepened the hue of the surrounding skin and divulged my Mediterranean descent.
Recently the topography was more present; my map was mentioned and questioned by those not as kind and innocent as my tribe. I felt thrown asunder. How many noticed and what did they think about it? Did they think it undermined my ability to navigate the rocky roads of our current journey? Because, I certainly started to fear that myself.
I began to have a deep desire to erase the pox-marked skin of my arms, to eradicate the troublesome nature of my past, and pretend that my life began somewhere on my more recent track; but, I could do that no more than I could miraculously heal my daughter’s rare disease, right our off-road travels, and soften our bumpy trail. Confidence eroded from under me like soil washed from a mud packed path under the stress of a traversing vehicle.
In the growing shadows of the late evening my son ran his fingers across the deep crevasse vertically demarcated in my inner elbow and my mind traced back into the shadows of my past. He lovingly soothed himself as he always had on “Mommy’s tickling spot,” and gently stroked as he let the bumps and bruises gained during the travels of his day melt away in my loving embrace. I held the juxtaposition of past and present. How very similar and very different the constant crisis, arduous and pain-filled days. In that moment, as our breathing slowed and synced I also held the resilience, the great love, and the courage.
I realized all the light to match the dark—the yin to the yang—that helped me survive the hard course of my past—all that I learned—prepared me for riding through the chaos of the present. I breathed with him bolstered by a new confidence. It mattered not the thoughts of others but the knowledge of my soul.
The factors of my resilience pulled me from the precipice and aided me along my way in the past, and, because, I exercised them, out of necessity, I know them intimately and impart them intuitively to my children. I emanate them as our breathing syncs and they trace the pathways of my love; they take from it all the deep devotion, boundless resilience, passion, advocacy, respect, and kindness they need along the way.