"She taught me so much, and not in that stupid, goofy way that people like to say. She really did help me learn about life. For one thing, she brought me to this great profession that I love. I get to meet so many awesome people because of her."

After Elizabeth's Passing

BY ANNETTE HINES

My daughter Elizabeth was the love of my life.

I know most people say their husband or their wife is the love of their life. But for me, I know it was her. Elizabeth just totally got me, and I got her. We spent a lot of time alone together, she and I. She was a good daughter. Even though she was so disabled, she was incredibly powerful in her way, and so good to me—and good for me.

She taught me so much, and not in that stupid, goofy way that people like to say. She really did help me learn about life. For one thing, she brought me to this great profession that I love. I get to meet so many awesome people because of her.

After Elizabeth passed, after the parade of people in our house, suddenly everybody was gone. The house was empty. A crew came and took away all her medical equipment. They removed her hospital bed, her medicines, everything. It was weird. Then I had to go to the funeral home and pick out a casket. I couldn't even think. I don't really remember much about it. It felt so surreal: what am I doing here, picking out a coffin, what am I even supposed to be asking for? All in all, it felt like the longest week of my life. We buried her on Friday, four days after she passed. It was raining outside, and I remember waking up that morning and thinking that I just wanted it to rain forever. I never wanted the sun to shine again. It felt right somehow, appropriate, that it was so cold out. It was the kind of November cold that just sits in your bones and makes you hurt, you know? When we buried her, I thought I was ready. 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.

In the months after Elizabeth died, in fact for a whole year after, 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, took up the slack in terms of keeping the household running, getting Caroline, my other daughter, back and forth from school, calling in laundry service, having meals delivered. He was amazing. Me, I just couldn't get up. It was like my arms and legs and head were all so heavy, weighing me down. It took so much energy just to lift myself up out of bed, get my clothes on, and get out the door.

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.

Grief comes like the ocean: it crashes over you like waves, then retreats for a little while, then comes back again. In the same way that the waves reshape the shoreline, my grief would slowly reshape my life. It's a very gradual transition, just like with the seascape, but very powerful. It is the process of becoming something else.

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At some point, almost a year after Elizabeth's death, I was able to get my footing again. The sand had come back and the tide had gone out. The waves weren't as strong. Whereas earlier, I felt like I was drowning, now the ocean was calm 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 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?

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PRECIOUS MOMENTS: Sister Caroline with Elizabeth. "If I wasn't Elizabeth's mom anymore, who was I? The relationship had defined me for so long, almost my entire life. My whole identity as an adult was being Elizabeth's mother. Without it, I was lost."

I was also a wife. Did I want to stay married to Mark? I loved him, but part of me wanted to just sell everything, shed all the trapping of my previous life, and move away with Caroline. I know how harsh that sounds, and I'm certainly glad I didn't do that, didn't act on those impulses. But at the time, I just didn't have anything left. As devoted as Mark had been to me, I didn't think I had it in me to love him the way he loved me. I was struggling just to love Caroline. It's awful, but it's the truth. I was struggling to feel anything at that time.

My family—my mom, my sister—were there for me during this time, but they also kept a distance. Everyone did. I get it now: it's just too painful. As much as people say they want to help, the reality of losing a child is just so devastating and traumatic that it's too much to engage with. It's a psychological hurdle and most people can't make that leap. Unless they've been there themselves. I had known several people in my life who'd lost their children before me. I had been to their funerals.

The beautiful thing is that every single one of those moms came to Elizabeth's wake and funeral. They all showed up for me, because they knew. They'd been through it too. But they were the exception. The natural instinct is to turn away, and that's what a lot of people did.

I was surprised at the number of friends, or people I had considered friends, who didn't reach out after Elizabeth passed. They were there for me during her active dying phase. And then right after, people came for a while to pay their respects. But then 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.

When we had a luncheon at a local restaurant on the Friday morning after she died, the place was packed with friends. But strangely, I don't remember who exactly was there. Many of them didn't stay in my world for long after that. There were lots of cards and gifts. People sent these strange things to put out in my yard, ornaments to hang on the trees, little poems and angels and wind chimes.

I smiled and thanked everyone who gave me those gifts, but I didn't want them. I put them all in a box, and they're still sitting in that box. I haven't opened it since, but maybe one day, it will be time for me to pull them out. Back then, I wasn't ready. I did what I had to do to put up a brave face and keep up with appearances. But it would still be many years until true healing came.

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 Children's Hospital and the Dana Farber Cancer Institute—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. I had almost tried something similar in the past, a group that the hospice had sent me to. But when I had gotten there, I couldn't do it. I had stopped and turned around—partly because I was terrified, but also because I realized I didn't want to hear about kids who had died from suicides and car accidents and the like. Those are terrible tragedies, of course, and I feel for the families, but I don't totally relate. They are a different kind of loss. It took me a while to figure this out: all loss is not the same. 

Also, at that point I was still just pissed off. Back then, the hospice group had given me a little pamphlet to read, and it was just crap. I wasn't in the right state of mind to hear that kind of stuff. And there was a certain value in my feeling pissed-off. It made me happy in a way. It was a step in the right direction. At least when I was pissed off, I wasn't numb. But when the invitation to the new grief group arrived, it was the right circumstances and the right time. Don't get me wrong: I was still pissed, and I was definitely the angriest person in the group. I had the roughest edges. But the fact that the other parents had experienced the same kind of loss as me made a big difference. 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. I had no more Perkins people, no more healthcare people. Everything was just over. Done. So to see the social worker and nurse practitioner felt like a glass of water in the desert. They were almost the only ones left who were still part of my connection with Elizabeth.

But of course, there was also Mark. He came with me to the grief group and was able to listen, but it was also the first time he was able to talk and be heard. Because he was the newcomer to our situation and the Best Supporting Actor, he never felt like he was able to claim the tragedy for himself. Finally, he was about to talk about it in that group, a full year and a half after Elizabeth died.

I never knew how he felt. Shame on me: I never asked him how he was doing. And even in that group, he talked maybe 20% of the time that I talked. But I got to have a little window into how he felt, and particularly how hard it had been for him to see me so hurt and crushed by life. That group was so good for him; he got so much out of it. They were able to tell him things that I hadn't been able to say, like just what a wonderful person he was.

The grief group changed me too. It was amazing in so many 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. There are starts and stops. ways. We had different readings every week, and not all of them were slam-dunks but they were always thought provoking. We also each got a little bottle, and would add a new layer of colored sand each week, whatever color we chose. We did that for three months, and at the end we all had these beautiful bottles: a collage of colorful sand in different layers and different colors.

The layers were not all the same depth and they were a little intermingled. But the whole project connected with me, like I was developing my own new shoreline. As art, it was imperfect, and always changing. Some weeks the sand would be black, some weeks pink or gray or brown or white. But I always felt like it represented what I was going through during this process of creating my new seascape.

It wasn't just about survival. It was a process of transformation. Through it all, I became something different and awesome. I still have the bottle to this day. It sits on top of my piano. Mark did one, too, and his sits next to mine.

It may have taken me a while to get in the groove of the grief group, but once I did, it was just what I needed, to let it all go and talk freely. It couldn't have happened earlier, until all the right pieces were in place. 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. There are starts and stops. But like the ocean, eventually the angry waves subside.

It marked the beginning of true healing for me. Finally, it was my time. I was ready for it, and I came out of the experience that spring with a renewed passion for my life.•

[Excerpt contributed by the author.]

ABOUT THE AUTHOR:

Annette Hines, Esq. is the author of Butterflies and Second Chances: A Mom's Memoir of Love and Loss. She is a powerhouse advocate for the special needs community. Not only has she founded the Special Needs Law Group of Massachusetts, PC, specializing in special needs estate panning, where special needs families compromise 80 percent of the firm's clients, Hines brings personal experience with special needs to her practice, as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep understanding of special needs fuels her passion for quality special needs planning and drives her dedication to the practice. For more information, please visit, specialneedscompanies.com and connect with her on Facebook, @SpecialNeedsLawGroup.