Loving a Child Who Would Die, But First Would Continue to Live
How to live in the present while making peace with the future.
Today we all live in a state of continual anticipation of illness or death. We try to get through the daily act of living while fearing that one wrong step, into a grocery store or grandma’s house, could end up in a worst-case situation.
It all feels too familiar to me because my family spent a year existing in a space between living and dying. My youngest daughter, Talia, was diagnosed with Tay-Sachs disease shortly before her first birthday. It meant she would never reach the milestones that she hadn’t yet hit, like rolling over or sitting up. It meant her brain would be overwhelmed with a build-up of lipids that were supposed to be slowed by a key enzyme she was lacking.
Like a baby with Alzheimer’s, she would lose all of her remaining abilities — the power to move, to smile, to eat — until, one day, her body would no longer be able to function. Regardless of my parental or medical decisions, the outcome would be the same.
Talia was a living child with a terminal diagnosis for whom death was certain, but the timing was not.
My family lived the unique experience of anticipatory grieving, separated from those joyously living in the present. While Talia was alive, I tried to write about the lessons I was learning and reflect on the hidden blessings of our terrible knowledge. I could never complete this piece because I feared that anything I had learned would be immediately invalidated once Talia actually passed away. Only now, three years after her death, can I look back and know that the time I had to prepare for her passing provided an invaluable cushion for my fall.
I didn’t love her extra because her life would be short, I loved her extra because she was my child, and because loving her felt natural.
To the outside world, Talia appeared to be a calm, content, sleepy child with a wild mane of hair. She was all of this to me as well. Yet I carried the hidden burden of knowledge that each smile could be her last and that her “sleepiness” was due to her inability to hold her eyelids fully open. It was a challenge for me to reconcile Talia’s happy, calm outward appearance with the truth of her condition. Those around me struggled as well.
In the days after her diagnosis, I grieved deeply. I grieved for the impending loss of Talia, but more so I grieved the loss of the family I had worked so hard to create. I grieved for the loss of innocence of my two other young children and I grieved for my own loss of innocence.
As I grieved, I was also staring at Talia, who didn’t know the world she had lost. She still wanted to be held by me, to nurse from me, to receive love from me. How could I do it, I wondered? How could I pour my love into someone who would leave me so soon?
The love I feel for her and the connections that my children formed with her have made us all deeper and truer human beings.
For a time, I detached from Talia as though she were simply a ghost living beside me. I spent a few weeks following her diagnosis trying not to see the adorable baby in her. I tried to see her as nothing, to avoid making any new memories with her. I wanted to keep her siblings away so that their bond wouldn’t grow stronger. I believed that any time spent loving her would only make her absence harder down the road.
But in preemptively grieving Talia, I dehumanized her and therefore dehumanized myself. The love I feel for her and the connections that my children formed with her have made us all deeper and truer human beings. It showed my children that love is not predicated on a guarantee of the future and that openness is the best way to handle any difficult emotion.
I no longer have to imagine the hardest thing a mother can do. I’ve lived them all.
After finding the strength to focus on building experiences with Talia and our family, I tried to live each day as if it were our last — focusing only on today without fear of tomorrow. I tried my best to block out my fears and enjoy each happy smile and well-earned laugh in an isolation chamber in my mind separated completely from the other dark corners.
This strategy also didn’t work. It felt false like I was living in a state of denial. If I ignored what I knew to be true, then the fall after she was gone would be as hard as if I never knew anything was wrong.
The method that finally worked for my family was to look reality hard in the face, accept it, and then move forward with the present and the future fully in focus. I loved Talia fully while knowing that our time was limited. I didn’t love her extra because her life would be short, I loved her extra because she was my child, and because loving her felt natural.
I made sure to capture every laugh and smile I could on camera, knowing it may be her last. I allowed myself days where we were purely happy and her disease was far from my mind, and also days where the pain was so much that I took breaks from caring for her to maintain my own well-being. I loved Talia each and every moment of her life, and I continue to love her each day after her physical life has ended.
Love is not predicated on a guarantee of the future … openness is the best way to handle any difficult emotion.
Grieving Talia’s absence is a lifelong condition. My girl would have attended kindergarten this year, which would have been on Zoom, and I can imagine the old me would have thought it was the hardest thing I would ever be asked to do.
I no longer have to imagine the hardest thing a mother can do. I’ve lived them all and the lessons my little girl taught me about how to accept life and love it anyway continue to serve me in these trying times. I cannot control what events or emotions come downstream, I can only try to manage the flow.
