It always takes me by surprise, being recognized. I know that with every audience I speak to, the chances increase that some time in the future one of those people and I will run into each other. But still, it surprises me when it happens.
I was sitting looking at veggie deli slices trying to pick out which one I wanted for sandwiches. A routine, comforting, thing to do. A woman approached me, I only noticed her because she'd been glancing at me as I made my way through the store. I'm not naturally paranoid, so I didn't think she was following me. She was. I'd make an easy victim.
"Are you Dave Hingsburger," she asks. I find this a funny question. At my weight and as a guy lumbering around in a wheelchair, there are few other people I could be. As this was running through my mind, I said, "Yes."
"I heard you speak in Vancouver and the World Down Syndrome Congress," she began. I immediately remembered the experience. I was terrified. I'm a nervous speaker to begin with but this was a huge lecture. There were people from around the world. I was on an enormous stage. There were two speakers before me, I had to wait my turn - my anxiety growing by the second. If I were to fail, this was a spectacular place to fail. I remember looking out over the audience, it was dark in the room and bright on the stage so I saw little. I could see the translation booths at the back of the room. My heart went to my throat ... and I began.
"That was an amazing experience," I said. She looked at me and nodded indicating that it had been an amazing experience for her as well. "I remember the whole thing vividly," I continued as she seemed a bit lost for words, "it was an honour to speak in front of so many parents, the love that you all have for your children could actually be felt up on stage."
Her eyes teared up and I asked her if she was OK.
"My little girl just ..." now she was openly crying and I knew the rest of what she was going to say. This was tragedy and loss, that was all. I never know what to say in these circumstances, there are no words in the English language that adequately deal with grief. There are no words that convey comfort well enough. None. I said, simply, "I'm sorry."
"May I tell you a bit about her?" she said. I said, "Of course."
"No one wants me to talk about her, I'm supposed to forget her. Move on. Even my husband ..." her voice trailed off. I simply waited. Joe came round the corner, I could see on his face that he had been wondering why I was taking so long deciding over faux luncheon meat. He saw her, noticed her tears, saw that we were talking and simple backed a way with a nod of his head.
Then she talked, she described to me a wonderful little girl. A little girl who faced health issues from the beginning, who managed to find every spot of joy that she could, a girl not fazed by the medical appointments, a child who could comfort her mother when her mother should have been comforting her. A child deeply and sadly missed. "At first, I didn't even know if I wanted her, now I'm finding it difficult living without her."
This is the transformation, of course, what begins as a cold clinical diagnosis ends up being a warm loving child. Children with disabilities have the amazing capacity for morphing from 'other' into 'mine' ... they are shape shifters with the ability to fit into the crevaces of a broken heart making it whole again. I've seen it over and over again.
But this woman's heart was broken anew. Her child has died. Without knowing the child I am still mourning her loss. "She loved me, she loved her dad, and we loved her. It all turned out to be so simple. We thought it would be more complex, more, I don't know, difficult I guess."
We talked for awhile longer, we laughed at stories about impish behaviour and little jokes. She was no longer crying. "It felt good to tell someone about her. My friends didn't want to talk about her when she was borne, no one wants to talk about her now she's died. I just don't want her forgotten."
I asked if I could write about our meeting on my blog the next day. She smiled and said, "Of course, as long as you mention her name."
I said I would.
Last night before bed, I prayed. Asking God to make sure that a little girl knows that her mother loves her, that her parents miss her. I believe the message got through.
I believe that Amanda knows, full well, that she was, and continues to be, deeply loved.
11 comments:
This is moving and so beautiful. May Amanda's memory be a blessing for her family and her friends.
It continues to escape my level of understanding that so many people want to "erase" people with disabilities from the world...even in memory....
Not in my world....ever.
Amanda's mom needs to know that she is in company, on this planet, with people who are happy that her daughter was here...even though we did not know her.
thanks Dave....
God Bless Amanda and the wonderful difference she has made in this world in such a short time. One heart changed is a wonderous thing.
God bless Amanda's family as well.
My little Maddy, who had DS, also died..I hope she met Amanda at the gate.
Hugs,
Amy
So beautiful, Dave...thank you. I'm crying for so many reasons...for the loss of a beautiful child, for a mother's heartbreak, for the "shape shifting" that has transformed so many of us -- myself included, for understanding what it's like to go from "will I ever love him?" to "how can I live without him", for the difference our children make in the world not only to their families, but to so many along their path. May Amanda know peace, and how much she was loved and now missed.
Thanks again for a "good" cry.
Sandy
As the organizer of our local DS group (which is a big group, as aborting kids with DS just isn't done here...)I have the unenviable task every few years of going to visit houses of mouning, when a couple has lost a young, medically involved child with DS.
I always feel that these parents got a "double whammy". First they have to learn to accept the child, and often this is a child who needs around-the-clock intervention. And then once they get there, they loose the child, and everyone seems to think that they can just "forget".
You don't forget a baby that died.
My husband lost a baby to crib death. The child had been coughing the evening before. 30 years later, my husband can't sleep if a child has a cold and is coughing.You just don't forget.
I have a life long friend of my family who I consider a brother and who died a year and a half ago. He had learning disabilities and I have heard it said that he's "all better now" - if they mean from the illness that was the end of it all then fine. However I can't help feeling them mean from his disabilities. And those of us that love him and miss him, we don't care about that... he mattered and we love him exactly as he was. The biggest part of what makes me mad about that? The fact that people are saying this to me, people who know that I'm a CP-er wheelchair user and a huge advocate, outspoken disability rights activist. Makes me wonder, will people comfort my friends and family with those words, that meaning after my death "she's not disabled any more."?
People like Amanada (and like Stevie, my friend and "brother") matter a lot. I will remember the story of Amanda and think of her family at this time.
Dave, we were in Vancouver, too. All day I've been thinking about this mom and wondering if I saw her there, or met her there. Thanks for giving her a voice, and for keeping Amanda's memory alive.
The name Amanda means loveable or worthy of being loved. Much love to her and to her mother too.
Oh man, I'm a wreck.
Mothers of children with disabilities must be the only parents in the world who are expected to be relieved and grateful at the death of their child.
I agree with john r. "people who are happy that her daughter was here...even though we did not know her".
Pain from the loss of a child, disabled or not, never goes away. My sister died at age five, eleven months before I was born. My mother, who was only twenty-two at the time, grieved all of her life until her own death at age fifty-eight. Everytime my Mom talked about Glenna, my sister, she cried. I feel that loss too because I never had a sister in my life except for the ghost of Glenna. Because she died at such a young age she never disappointed my mother and that was all I could seem to do. Very complex issues came from having lost Glenna for everyone in our family. I miss her still. She would be fifty-eight years old.
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