After my daughter Elizabeth passed away from mitochondrial disease in November of 2013, I had a full-on identity crisis. Elizabeth was 17 when she died and from the moment she burst into the world as a two pound, 29 week preemie, she had consumed me. She was profoundly intellectually disabled, physically challenged and blind, and she needed me to be her caregiver and decision-maker until the day she passed.
Where do I belong? I am a mom without a country!
When Elizabeth was born, I had finished law school but had not yet taken the bar exam to begin practicing law. I had always wanted to be a civil rights attorney and handle big courtroom cases. You know, the ones where the entire trial is splashed all over the news and I am asked to come on Court TV and CNN to explain my brilliant legal strategy. My career shifted, but not by much, and I was able to practice civil rights law. But my passion was now for the disabled, the special needs individual and the medically fragile. Having Elizabeth was life changing.
I did go on to have a second child, Caroline, who also brought great joy to my life. She had her own challenges, much of which stemmed from being Elizabeth’s sister and the trauma of our lifestyle. But in most ways Caroline was a typically developing kiddo. But Caroline and I didn’t really fit into the typical family world. Our world was special needs through and through.
As Elizabeth grew so did my practice and my life, all of which focused on special needs. Our friends were families with special needs loved ones, or professionals in the field who were part of our circle of care for Elizabeth. My work was 100% disability law focused, and being Elizabeth’s mother was all-consuming. As the years rolled on, I did find my place in this world. Although life was very hard sometimes, I found great joy in pursuing my passion for work while raising my special family.
After Elizabeth passed, after the parade of people in our house for many years, suddenly everybody was gone. The house was empty. A crew came and took away all her medical equipment. They removed her hospital bed, her medicine, everything. It was weird. And very, very quiet.
When we buried her, I thought I was ready for it. I was so full of myself, thinking about how smart I was that I had made all these preparations and how I was going to be ready when the time came. I wasn’t ready. I’m still not ready.
For a whole year after Elizabeth died, I was like a dead person, just walking around like a zombie. I still did my job; I connected with people, but it was all a charade. I struggled every morning just to get out of bed and go to work. I remember spending a lot of time that winter lying on my bed, doing nothing, just staring at the ceiling. Mark, my husband, picked up the slack in terms of keeping the household running. Getting Caroline back and forth from school, calling in laundry service, having meals delivered. He was amazing. But me, I just couldn’t get up. It was like my arms and legs and head were all so heavy, weighing me down.
People had stopped visiting. For them, it was all over. For me, it was still such a difficult time. I couldn’t think. Grief is funny that way, how it hits you. It’s not always about the crying. It’s not like you’re in the same excruciating pain and agony that you were. But the grief is still there, it’s deep, and it impacts you in other ways. It interferes with your memory, your ability to think and process information.
At some point, almost a year after Elizabeth’s death, I was able to get my footing again. The waves of grief weren’t as strong. Whereas earlier, I felt like I was drowning. Now the ocean was calmer, and I could catch my breath. I started to think clearly again, and to try to rediscover who I was in life and why I was doing what I was doing.
But then I started to question everything about myself. If I wasn’t Elizabeth’s mom anymore, who was I? The relationship had defined me for so long, almost my entire adult life. I had her right after I graduated from law school. It had been school, school, school, school, school, married, baby. My whole identity as an adult was being Elizabeth’s mother. Without it, I was lost. I started to perform a kind of inventory of self. Yes I was an attorney, but did I still want to do that kind of work? Did I want to get another job instead? Did I want to shut my practice down?
It seemed to me that it was all over so quickly. Everybody just went on with their lives. I couldn’t understand it. Was I also supposed to move on so quickly? How do people do that? I couldn’t wrap my head around living without Elizabeth in my world.
It wasn’t until the spring of 2015, the second spring after Elizabeth passed, that I started to come alive again. What changed? The turning point was when I attended a grief group—put on by Boston Children’s Hospital—for parents who had lost their children through illness. The team at Children’s had been trying to check in with me, calling and emailing, for a full year. But I just wasn’t ready to talk or engage. I never answered, but to their credit, they kept trying. Then, one day, they sent me a note about the grief group.
Something about this invite struck a chord with me. The fact that other parents had experienced the same kind of loss as me made a big difference. Most of them had to make very difficult care decisions for their children, and this made it easier to talk about the decisions I had made and the guilt and questions I still had. Those parents really touched me. Not only that, but I got to reunite with some of the amazing hospital personnel who I had lost touch with: my social worker and my nurse practitioner. It felt good. Everyone else who had been part of my world—the network who used to help me take care of Elizabeth—was now gone, all the teachers, all the nurses.
But now I had this group that I could really relate to, this tragic club of parents who had lost their children to disease. What an odd kind of community: it’s a group you never expect to be a part of, and you certainly never want to join—but there it is. Thank God that they were there for me, that they understood and wanted to listen. I didn’t have that anywhere else. Healing doesn’t come in a linear fashion. Rather, it shows up in patches, like puffs of smoke. You catch a piece of it and start to feel whole again, but then it evaporates. It marked the beginning of true healing for me.
But I still struggle to this day with my identity. When I go out to speak to parent groups about special needs issues, I will inevitably get a question from someone asking if I am a special needs parent or if I have a child like theirs? It happened to me just last night as I was presenting to a wonderful group of parents raising young adults with disabilities.
Because Elizabeth has been gone six years now, most people I meet never knew about her. Not everybody knows my story, especially when I am invited to speak professionally. It’s hard to answer the question without going on and on about my story of life, love and loss with Elizabeth.
I’ve never quite fit into the typical parent world, and my special needs parenting is over.
But I will always be a special needs mom. I will always be Elizabeth’s mom.
I was discussing this issue with another special needs mom who is an author and a podcaster like me. I mentioned that I really wanted to attend an event she was having for special needs moms, but I wasn’t sure if I would fit in. She encouraged me to come and that I do fit in. This is still my world.
In the end I didn’t sign up for the event. I guess I’m still not 100% comfortable with my place in this world. I’m still a mom without a country! But I’m hoping to connect with other parents who feel the same way so that we can form our own circles of support. If you have an experience you’d like to share and are feeling unsure about where you fit in, I’d love to hear from you!