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“I can’t control what comes downstream, I can only try to manage the flow.”

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By Carla Steckman

My family spent this past year and a half existing in a space between living and dying. My youngest daughter, Talia, was diagnosed with Tay Sachs 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. She would lose all of her remaining abilities—the power to move, to smile, to eat—until her body one day 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.

We 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, two months 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.

It was a challenge for me to reconcile Talia’s happy, healthy outward appearance with the truth of her condition.

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, healthy outward appearance with the truth of her condition. Those around me struggled as well.

In the immediate aftermath of the 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. 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 something that 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 now would only make her loss 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.

After finding the strength to focus on building experiences with Talia and our family, I tried to live only for 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 and me 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 each and every moment of her life, and 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 forced those around me to take a similar approach. I didn’t let anyone around me get away with magical thinking, miracle wishing, or rewriting of the past. I reached out to and accepted the support of a host of wonderful people from family to neighbors and great friends, insisting that they not sugarcoat our situation or indulge in false hope. I also made a point of refusing to be deified, knowing that the title of “hero mom” wasn’t one I wished to embody.

A large part of the reason I managed those around me in this hyper-realistic manner was because I was consciously training us all for the inevitable fact that this period of my life as the parent of a dying child, was going to end at some point. I knew that I needed to protect myself and my family from the shift from caregivers to grievers, and that maintaining normalcy in the face of the abnormal was the best way to do so.

Protecting my two healthy kids was also of paramount importance for me. I’m grateful to have had the time of anticipatory grief to help them understand death proactively rather than having to teach them that painful lesson in the immediate aftermath of loss. There are some parts of Talia’s illness that they understood with minimal questions, like the fact that she wouldn’t develop and would stay a “baby” forever. Explaining death was more abstract and only truly made sense to them after she was gone. I likened it to discussing pregnancy with a young child. Despite the mother’s growing belly, it’s only after the baby is born that the child understands the true impact of the change. Similarly, even as my children saw Talia become more still and more silent each month, it wasn’t until she had died and was no longer in our home that they really understood her absence to be a permanent one. The time we spent talking with them helped ease the transition immensely, as did the fact that we did everything in our power to continue hiking, playing board games, and laughing rather than focusing on death. The more attention poured into them while we were “whole,” the more, I believed, we would survive as a family after a part of us was missing.

Thinking about these questions didn’t stop the pain, but with practice they became easier to answer.

I also used the time I had left with Talia to prepare for life after she was gone. How would I respond when people asked how many children I had? How would we fill out family-tree assignments at school? Thinking about these questions didn’t stop the pain, but with practice they became easier to answer.

I engaged in a delicate balancing act of living for today, but not forgetting about tomorrow. If you knew your loved one would die in a year, you’d want to live each day like it’s your last. I found that this requires an emotional and physical energy that is impossible to maintain. I prefer to live as much in the moment as possible, but remember that the good and bad times alike exist for only fleeting moments, then morph into something new. The hell of sleep training a baby, for example, is a blip in the timeline of life, yet an excruciatingly long blip to live through.

I learned to live simultaneous truths. My child is going to die/My child isn’t dead yet. My children are all forming a wonderful bond/That bond may make the pain of loss harder to overcome. It was very important for me to not allow myself to forget the reality of Talia’s situation, but also to not let myself get dragged down by it. I feel deep sadness, but try not to allow that sadness to keep me from being present. My emotions rise, fall, and transform. I acknowledge them, feel them, and let them flow through me, knowing that something new will take their place. I can’t control what comes downstream, I can only try to manage the flow.

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Carla Steckman lives with her family in Upstate New York. She blogged about raising Talia at www.thewarmweightoflove.wordpress.com and is currently writing her memoir on parenting through the abyss.

Grief & Loss Children Loss of child
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