Friday, June 22, 2018

Remembering all the children

Last night I attended a ceremony called "A Time of Remembrance" at UCSF Benioff Children's Hospital. This is an annual ceremony the hospital does to honor the children who have passed away. It is a lovely tribute to the children, many just tiny babies, whose lives were far too short. Maggie was one of them.

The families are invited to participate if they want to, and while many do not find comfort in this type of ceremony, many others do. The ceremony included a slideshow featuring photos of all the children being remembered, which is particularly moving. Then everyone who so chooses placed a rose in one of several vases creating the most beautiful bouquet. That was lovely.

There was music and poetry and speeches by doctors, chaplains and a parent who shares their particular story. That parent was me. 

I gave a speech telling Maggie's story and the story of how losing her affected me, I was honored to do it, but it wasn't easy.  My voice shook and cracked because remembering that makes me sad; and knowing I was in a room full of people who intimately understand that feeling made it even sadder.  But there was a cathartic element to it as well.

I am sharing the speech below for those of you who are interested.

A Time of Remembrance
UCSF June 21, 1918

I am very honored to be able to speak at this Time of Remembrance. Each of our children remembered here today was a life force and remembering them is easy because each and every one of them was  unforgettable.

Some of you may recognize me from Cookies and Conversation, the meeting of parents that takes place every Thursday afternoon. I am the moderator of that group, but not because I am a trained social worker or counselor of any kind, but because I am a parent who knows what it is like to spend time in the hospital with a child and what it’s like to lose that child.

My daughter Maggie was born in 1994 with something called VATER syndrome. She had parts of her body connected that weren’t supposed to be and parts unconnected that should have been attached. She also had hydrocephalus and cerebral palsy which caused profound disabilities. She never walked or even sat up on her own. She ate through a tube and required constant medical interventions because of her tracheotomy, feeding tube, catheters and other issues. Maggie had over 80 surgeries in her lifetime, and despite all of this, she was just about the most joyous person you would ever meet.

Maggie could not talk, but she could communicate quite well. Eventually she used a speaking device, like Stephen Hawking used, but mostly she communicated with smiles and laughter – and, if she wasn’t getting what she wanted, with frowns and anger. You knew where you stood with her at all times.  She required constant care and it was often very scary, but the joy she gave us was immeasurable.  I am forever grateful to UCSF for providing such excellent care that allowed her to live as long as she did.

Maggie lived her life on the edge of the cliff. Any of her many conditions could have killed her at almost anytime. Despite that and despite the frequent hospitalizations here at UCSF, Maggie thrived. She bossed around her two brothers, had her father wrapped around her little finger, and entertained everyone with her giant personality. She had many friends, went to her prom every year, graduated from high school and lived as normal a life as possible given her circumstances. Maggie was my confidante, she was my best friend.

She fought so hard and so successfully for so long, that we stopped being afraid. We were just along for the ride, her supporting cast. It was Maggie’s World and we were just living in it.

Then early on Valentine’s morning in 2014 without warning and for reasons we will never understand,  something happened and she stopped breathing and her heart stopped.  The paramedics came and eventually got her heart going again,  but Maggie died the next day in the PICU on Parnassus. She was two weeks shy of her 20th birthday.  Valentines Day means something different in our house than it does elsewhere.

Suddenly the center of our family was gone and it seemed like she took all of the light and joy with her. We were bereft – we will always be bereft.

Unless one has experienced this – as everyone in this room has – one cannot possibly understand what this experience is like. And while I can share my story, I know that my experience is likely very different than yours. Grief is an individual thing, effecting everyone in different ways. 

I can only relay how I felt and how I feel and understand everyone handles this differently. There are overlaps for all of us, but parts of this are so intensely personal, they are unique to each of us.

It is difficult for me to listen to people -- who have nothing but good intentions -- tell me that time heals all wounds and that I will go through the stages of grief and feel better. None of that is true.

First of all the stages of grief can happen in any order and at any time. I might go through five of them in an hour or one might last weeks. There is no resolution. She is still gone. I suppose the pain has dulled over the past four years,  but I don’t “feel better”. There is no time limit on this and there is no order to any of it. 

I think at first it’s all jumbled together, the loss, the grief, the sadness, the memories. As time goes by those things start to separate a bit. I will always feel that loss and the grief remains a part of that, but I treasure the memories of Maggie. There did come a day when remembering Maggie brought a smile instead of a tear, and that was a good day indeed.

That doesn’t mean the tears stopped forever, but remembering was allowed to be happy. That seems more appropriate for my Maggie because smiling was her very favorite thing. 

Now that I am on the other side of the fear, I realize that I could never really prepare myself for losing her. Often times in Maggie’s life there would be a medical crises I thought the end was near.  I always pictured a cliff and there was nothing but darkness beyond. I was so afraid of being plunged into that darkness. But, of course, we cannot truly imagine how we will feel when the time comes. When Maggie died, I  didn’t feel the darkness at all. I felt just the opposite, like I was in a spotlight. I was acutely aware of everything. I remember the faces of the people we passed in the hospital hallway on the way out that night, knowing they didn’t know what we were experiencing and realizing I didn’t know what they were going through. I felt small, and powerless and very exposed.

I had a feeling of being swept down a river. I was not in control, grief was controlling me.  I seemed to be in a canoe with no paddle and just had to let the grief take me where it would. I didn’t know if I would land safely on a sandy shore or go over the waterfall, but I knew I was helpless to control it. This was not a sobbing kind of lack of control -- though there was certainly a lot of that -- this was a sort of peaceful acceptance that I just had to let this happen and not worry about what I was supposed to feel  - or say -  or think - or how I was supposed to act.
       As time went by I felt less and less out of control. I was still on that river, but now I had a paddle. There were difficult parts to navigate, but on the calm parts, I was going to be ok.  I had to adjust to a life without Maggie.

I learned -- and I bet all of you have learned – that eventually people don’t want to hear about the child you lost. They tell you it must be a relief, they tell you it as for the best or that you will have another baby, they tell you silently but clearly that you have grieved long enough.

They are wrong, everyone of them. We all have to grieve and remember and do whatever we need to do to go on, regardless of what others say or think or imply.

The analogy that works best for me was articulated by Rose Kennedy who outlived at least 4 of her children. That compares ongoing grief to a deep wound.  It starts out raw and angry, but eventually starts to heal.

The wound closes up, but the scar remains a part of you. You carry that scar around always. Sometimes it’s visible and sometimes its covered. But it is always there.

And now that I have been carrying it around for over 4 years,  it is no longer a burden, but a privilege. This is hard to convey, but the depth of experience that comes from losing a child is profound and, while I wouldn’t wish it on anyone, it is my honor to carry Maggie around with me.

I was lucky. I got to have my daughter for 19 years. Many of you likely did not get that long of a time with your child. But it doesn’t matter if it was 19 months, 19 days, 19 minutes or less than that. These amazing children were ours for however long they were here and they made their mark on their parents and the world. The loss of each of them is deeply felt by us as parents and by their siblings and other family members and friends. They were innocent and all of them lived far too short of a time, but they live on in our memories and in our hearts. We will never forget them.    

When Maggie was born my life changed. When Maggie died, my life changed again – but it did not change back. She changed me completely. I learned everything from her and I miss her every moment of every day. 

I remember and honor her and all of our children today and everyday.