How to describe myself? Before, I would have said I am a mother, wife, occupational therapist. But my only child died in May 2019, so I guess I am first and foremost a childless mother. My husband and I got married in September 2006, and just over a year later, in October 2007, our beautiful daughter Ariella was born. We felt that our family of three was complete and decided not to have more children. In February 2017 at the age of nine, Ariella was diagnosed with Ewing’s Sarcoma in her leg. Her prognosis was good, but she relapsed in June 2018, just five months after finishing treatment. Ariella had a bone marrow transplant in February 2019 and died in May 2019 at 11 years old after suffering multiple complications. While in treatment, Ariella started a foundation, Ari’s Bears to deliver bears to children in hospitals. To keep her legacy alive, my husband and I are continuing to run this foundation and have expanded to include awarding scholarships to childhood cancer survivors/fighters and providing grants for childhood cancer research. I began blogging as a way to release my feelings and not necessarily with the intent to share my writing, but realized that sharing the rawness of my truth may help others who have lost children feel less alone in their thoughts.
When a girl imagines being a mother most of her life, what happens when that dream is cruelly stolen from her? I always wanted to be a mom. I had other dreams of course; I imagined myself in different jobs and living in different places, but always with a family. As an only child myself, I always thought I would have at least two children. But Ariella completed our family. David and I never felt that we needed more children. Our family of three was perfect. How lucky we were! We had everything we wanted.
While I always wanted kids, I never pictured myself as a stay-at-home parent, and that was reinforced after Ariella was born. Being a mom was my most meaningful and most important role, but not my only one. I am a wife, a friend, a daughter. I have a career that I love, that is quite fulfilling. As much as I loved being a mom and always wanted to be a mom, I did not want that to be my only identity. There was so much more to me than being a parent.
So why do I now feel like my only identity is that of a bereaved mother? That my child is dead pervades all of my thoughts, no matter what it is that I am doing. My experiences now are all viewed through the lens of a bereaved parent. Things that used to bring me joy, no longer do. Why is that the only thing that seems to matter now when trying to find meaning in life? All those things that gave me purpose before just don’t seem to matter now. All that matters now is that I am no longer a mom to a living child. Any sense of meaning and purpose has left me. Everything feels so futile to me. Rationally I know this isn’t true. I work with children. What I do is important. But it no longer feels important to me. It doesn’t give me the same sense of meaning it used to. Because nothing is as important as the fact that Ariella is gone. What it comes down to is life versus death. None of this shit matters as long as you are alive. Again I know logically this isn’t true. It matters very much to those who haven’t experienced such loss. It used to matter to me. But now I just cannot bring myself to care. All my purpose is gone. My reason for being, my reason for living. I feel like I have nothing to live for. Each morning I get out of bed and go through the motions of the day, not out of any sense of purpose, but because I have no other choice. I need to eat, I need to pay bills. If I could curl up in bed all day under a mound of blankets, I would. But against my will my heart continues to beat and lungs continue to breathe and because of that I have to go through my daily routines, such that they are.
Each day feels like the movie Groundhog Day, especially during a pandemic. Wake up, work out (the only thing that keeps me sane), work from home (no commute to help kill time), count down the minutes until I can reasonably make dinner so I can get the evening going and over with, and watch TV with my husband while counting down the minutes until I can reasonably go to bed.
A year and a half later, I do not know how to fill those hours that used to be taken up by parenting. I miss those mundane chores such as packing Ariella’s lunches, driving her to school, chauffeuring her to dance, and helping her with her homework. And I miss those future milestones we will never get to have; her Bat Mitzvah, high school and college graduations, her wedding, being a grandmother to her children.
So then how does one find meaning when their only child dies? The answer is I just don’t know. I’m certainly doing things that would be considered to be meaningful. Keeping Ariella’s foundation going is a way to find purpose again. But I wonder sometimes if the pain of running the foundation without her is worth it? Because it is so very hard to watch it grow when Ariella never got to see it through. She never got to finish what she started. It doesn’t feel good doing it without her and yet I know that’s what she would want. It should feel good, knowing I’m keeping her legacy alive, but I’m not there yet. Maybe I never will be.
The truth is, finding meaning will never make her death okay. I had meaning, and it was stolen from me. I didn’t need to lose a child to find gratitude, to learn to appreciate life, or whatever other nonsense people spew that somehow should make it okay that your child died. There is nothing that will ever make it okay. Finding meaning just gives a reason for living. It makes life less miserable. I think someone who has experienced such loss does not find meaning until they do. As in, it just happens, when that person is ready for it to happen. I read David Kessler’s book titled “Finding Meaning: The Sixth Stage of Grief” and I found it unsatisfying. I’m not sure why. I think it’s because he implies that healing and finding meaning are choices. I don’t disagree that there is some choice involved in living, in more than going through the motions. I can choose to see friends, exercise, get out of the house, or I can choose to completely disengage. However, I cannot choose for those activities to be meaningful or bring me joy. They lessen my suffering but don’t lessen my pain. They serve as a distraction, a way to fill my time, and that is why I do them. But happiness, purpose, that’s not the reason. I’m still too raw, too new to this pain and loss to experience the happiness those activities used to bring me. And to imply I have a choice in the matter upsets me. I feel what I feel and maybe one day I will find the meaning and happiness, but that day has not yet come. But even though I don’t particularly want to, I am choosing to live, choosing to engage, in the hopes that one day I will find moments of purpose and joy and peace. Because this existence I am living is miserable. I cannot fathom decades of feeling this way.
I can’t pretend to know what it’s like for bereaved parents who have living children. Not only are they grieving, but they have to be present for their grieving children. Does caring for their living children make things a little easier? Not their loss, nothing can make that loss any easier. But do they still have their sense of purpose? Do they have an easier time getting out of bed, going about their day? Or do they also feel lost and unmoored? I’ve heard from bereaved parents with living children that they feel pulled between two worlds. They want so much to be with their child that died, but they don’t want to leave their living children behind. How can you be fully present when you are straddling those two worlds? I’m not sure how they reconcile those feelings but I am jealous that they have other children they can nurture and watch grow, and parent daily. I miss that life with all my being and the only thing I wish for as much as I wish to have Ariella back is to be a parent again. Because I think parenting is the only thing that will bring me that same joy and purpose. Everything else just feels hollow. If only it were that simple.