When Grief Becomes a Constant as the Parent of a Medically Complex Child

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.

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. I wished for her to be kind, ambitious, fair, loving, philanthropic, an activist, and yes, a feminist.

We discovered during a routine ultrasound that the baby girl growing my womb had a heart riddled with tumors. She would be born with a rare genetic disorder, tuberous sclerosis complex (TSC). It would cause benign tumors to grow in her vital organs, epilepsy, autism, and an endless list of other medical complications that could occur across her lifetime. I sobbed and sobbed and sobbed until I had no breath left in me. It was October 15th and snow fell from the sky. Snow in early October – of course.

All my hopes and dreams came crashing down like a poorly constructed house of cards and the hope was replaced with a single hope: let her live.

Survival. 

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. 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 live.

My pleadings became ever more complex like a chanting 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 4 months old. Let her live became an ever present chant in my head. I heard it constantly.

Soon to follow were seizures then epilepsy in the form of infantile spasms (IS). IS—an innocent looking seizure—mimics the Moro or startle reflex of an infant and has devastating effects on the brain’s development. Every seizure is like a bomb blast blowing future neuronal pathways to bits. We then received the confirmation of a SEGA, a benign tumor in growing in the center of her brain, which threatened to block the flow of the cerebrospinal fluid (CSF). CSF cradles, bathes, and cushions the brain. It is vital to life. A blockage would send her into a life-threatening emergency.

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 can’t be our life: Denial.

Why? I can’t do this anymore! I did everything right. I listened to the doctors. I took all the vitamins. I hate the world: Anger.

Please, just let her live.  Please, please, please: Bargaining.

She grew 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 exists 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.