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.
