Story Teller

By Lisa Buell

Day of the Dead is suddenly in the forefront of my mind. I never thought it would even be part of my consciousness since it wasn’t part of my culture, and yet there I stood in my daughter’s second grade class looking at the altar that had been set up by the children. “I miss my sister, mama”, my daughter says speaking of the sister she has never met but her heart knows all too well. “I do too, sweat pea”. I wonder if I should offer, if I am actually ready to go there. It’s only been a few months at Children’s Hospice and Palliative Care Coalition working as a writer and parent advocate; it’s been over ten years since my daughter died. And still I stand there in front of the altar wondering if, if I can work up enough courage to tell Madison’s story, which is now the story of our family.

It wasn’t too long ago when my daughter Delaney (then four) would make her grand entrance into the park, introducing herself to a group of mothers by telling them her sister died. I would be a few steps behind her wanting just to turn and run or maybe pretend that she wasn’t my daughter, that this wasn’t part of my life. Imagining that I could simply sit down with the mothers feeling sorry for that little girl, exchange sympathetic if somewhat uncomfortable looks and get back to talking about important matters like nutrition and where to shop for the best nursing bra. Instead I would walk by, casually nodding a hello and following my daughter to the swings where we could get back into the rhythm of our life.

Our daughter Delaney was born a year and a half after Maddy died of cancer at two and a half years of age. Madison was and still is very much a part of our family. We speak of her often, have pictures all around the house and many of her clothes, books and toys were played with and worn by her sister and brother.

The loss of a child is devastating- living with that loss is where the courage comes. The mindfulness of deciding to have more children and how that will all play out is a stretch to the spirit, to say the least. As our children have grown older and have surpassed their sister in years, there isn’t the comparing or holding of breath that we once felt. Delaney and Hayden have gotten sick and then better, and we in turn are no longer on fight or flight and are able to really enjoy the ride.

So now, ten years later, our family has a history that we aren’t necessarily living. I don’t feel compelled to say I have three children– one would have been X years old and the other two are X. Something has shifted in me just recently that makes it okay for me to say I have two children and not feel guilty that I didn’t mention my third. I am more selective to whom I “come out”; I don’t feel like I have to educate the world at my own expense. I get to decide now and that feels amazing.

So that day in the classroom I made a choice. I decided to ask the teacher if she would like me to talk about our daughter/Delaney’s sister for the Day of the Dead. The teacher had just lost her own sister within the last year and was very motivated to talk about when people we love die and how to keep their memories.

The night before the talk with the children I went to bed with a lesson plan spinning in my head. I wanted to encourage conversation, tell our family’s story, give Delaney
an opportunity to share and be in the limelight and above all create a safe space for the children and respect their individual cultures. The last part was the wild card. The right answer for the most obvious question continued to elude me through my restless sleep- where do people go when they die? In the morning, I awoke with an epiphany: there was no right answer; there was only what I believed (or was still sorting out for myself). Each family has their own idea about where people go when they die and the beautiful thing is that we all get to decide for ourselves.

At the school, parking was a challenge. It took me five minutes to find a spot, so of course I took that as a sign- the universe was telling me it was too soon and this was my chance to reconsider. I shook off the superstition, the little voice of “protection,” and decided I would have to park off campus and make a run for it to the classroom. So x minutes later, breathless and sweaty, I walked into the room full of second graders, who were seated in a semi circle, with my daughter standing in the middle talking about her sister (limelight- check). Of course Delaney should be the one to introduce her sister–this was her class, her friends, her experience. Delaney had been holding Madison’s framed picture and somehow it came undone, exposing the pictures behind it. It was a perfect introduction into our family and the rituals we have: “when we put a new picture in the frame we keep the old one’s behind it so we can remember our history.” There was a picture of Maddy holding hands with her Aunties, a large group all wearing shirts with the kissing picture of Nancy and me, Mad in the middle. The t-shirts were our Team Maddy shirts, which we wore throughout our trip to Disneyland.

The conversation continued, with the children asking about how Maddy died, how long she was sick, how old she was. I prefaced it all by explaining how most kids get sick and get better and how sometimes kids that get super duper sick can get better too, and many of the students had been super duper sick and needed to share about that. I talked about cancer and many of the children seemed to know a person who had had it and died or got better. I briefly shared Mad’s medical history and they wanted to know how long we were in the hospital. “We were in and out of the hospital for at least a year,” I said, “We actually slept there.” “You spent the night”, Yep, lots and lots of nights”. I told them that it was scary and hard but that we learned a lot along the way and there were a lot of people who were very kind to us.

I told them about my job now at children’s hospice. When the kids asked how I helped people, I gave the analogy of doing a puzzle. “Would it be easier for a person to do a puzzle who had never done it before or for the person who had? ” I asked. It was unanimous; all of the kids voted in favor of the experienced Puzzlemaster. “What if you could talk with the people who made the puzzle?,” I asked. Again, they agreed. Well, I explained one of my jobs is get to let doctors know about the pieces of the puzzle that don’t fit very well and help to get them changed.

We then talked about how when Madison had cancer there wasn’t such a thing as Children’s Hospice and our friends and family were the ones who supported us. I shared the story about the first time we came back from the hospital and our friends and family had cleaned our house, done the laundry and filled our refrigerator with food. Our friends would arrange dinners and send us money so that we could be the best mommies possible. We talked about community and how important it is to help people who need it, and that sometimes community can be your family and friends or people who don’t even know you but just want to help out.

“I did an art show to help people who don’t have homes,” my daughter said. “My family gives to the animal shelter”, a very proud little boy announced. The teacher continued on with how, instead of giving each other presents for Christmas, her family gives to the Heifer Project, which helps sustain families around the world by actually giving them a cow so that the family can drink the milk for ten years or more.

“Story has always been important in our family,” I explain, showing them the beautiful little clay storyteller statue we found on our trip to New Mexico. “When Delaney and her bother Hayden were little they would pick it up, sit on our laps, and we would tell the story of their birth, how mommies met, what Maddy was like and how we came up with their names- “we looked into your beautiful blue eyes and said- we’ll call her Marshmallow.” I got to see the twinkle in each child’s eye as we passed the storyteller statue around the circle. “This is a book that was given to Madison by her Aunties Georgine and Ellen and it is inscribed,” showing them the date and year it had been given to my daughter– for Xmas in 1998. “This was one of Madison’s favorite books, and we read it to Delaney and Hayden and it is one of their favorites as well.” I read the book to the class; they all laughed and sang in the right places. It was beautiful.

Teacher Laurie had the children thank me for sharing my family’s story and said that some of the children had pictures or items to share that belonged to people or pets that had died. We went around the room: dogs, rats, neighbors, uncles and friends were among those represented. My heart stretched as each child spoke and as one of Delaney’s classmates shared about her Grandfather, “I don’t remember him very well because he died when I was five but my Dad said he held him in his arms when he died.” Teacher Laurie got straight to the feeling when she asked, “Why do you think it was important for your Dad to hold your grandfather, his father, when he died? How do you think he felt?” “He felt really sad” she said. “Of course he did, because he knew it was the last time he would be able to touch him or hug him”. And the tears that had been pooling in my eyes fell to the ground as I listened to her answer… remembering for myself.

Delaney gave her teacher a “DANCE” bracelet that children’s hospice sells in honor of her sister, and of course all the kids wanted one as well. It was fun handing out my CHPCC partnership for parents cards to a bunch of seven and eight year olds: “go on the website with your parents and you can get your own.” They were very interested in the small foldout brochure that comes with each bracelet. There is a picture of the child being honored and whatever saying goes with it and the kids were trying to figure out if Madison was the youngest child on the card and were very surprised to find out that all the children on the card had died. “She’s dead too, he is too…awww.”

“On Maddy’s birthday or the anniversary of her death we paint pots in her honor because when she was alive she loved doing that, so it has become one of our traditions. Would you like me to come back in April, bring a big pot and we can all paint it together and remember the people whose memories live in our hearts?” There were cheers all around and then they went outside to play… because they can.

Several weeks later I walked by a classroom table filled with brightly glazed storytellers the students had made. Some had big open mouths as if they had a lot to say, many were holding little babies swaddled in blankets. Clay children encircled the storytellers painted on dresses. The whisper of each student, family histories filling my ear, and my heart.