Edgy Mama: Life of a child

Edie Burke loved music, her family and the big purple dinosaur. She was loved deeply in return by her family, friends and neighbors — by her community.

Edie died on May 2. She was three months shy of her 10th birthday.

Edie was born with a genetic disorder called Mucopolysaccharidoses (MPS-Type 1). When diagnosed at 13 months old, she was expected to live five to 10 years. Although she survived until the outer edge of her life expectancy, her final months, and her final few years, were not easy. MPS and related diseases are thought to occur in one out of 25,000 births.

Despite decreasing mobility, Edie never lost her ability to smile, to laugh and to communicate with her eyes. When she couldn’t lift her arms, she could still hug you with her smile.

Edie’s mom, dad, older brother and younger sister — along with a multitude of others — cared for her until the end. She died at home, and in the arms of her family.

Edie’s dad, Tom, once told me that he saw Edie as a life-changing gift to her siblings. Although Jack and Liza may have become remarkable people anyway, their experience in loving and caring for their chronically ill sister gave them deep wells of compassion and understanding rare in children. For example, 12-year-old Jack often organizes neighborhood games and always finds a way to include the younger kids, even those in the 4- to 6-year-old group, whose throwing and catching skills aren’t up to 11- and 12-year-old standards.

Edie was a gift, not just to her siblings, but to all of us who knew her.

The front porch and yard of the Burkes’ home has been a neighborhood hub for the seven years that my family has lived within hollering distance. The front porch was one of Edie’s “spots,” and no one, old or young, could easily pass by without saying hi or stopping for a visit with Edie.

After my friend James’ wife and the mother of their young sons died of cancer, he said: “Never forget that community trumps tragedy.”

He’s right, of course. We’ll never forget Edie, and we mourn her as a community. We’ve come together over the years to support her and her family, and now we’ll support them through their grief, which will fade, but never disappear.

Edie and my daughter were born less than a month apart. When Edie and my girl were in nursery school, Edie was still mobile, still talking. One of the evils of MPS-1 is that the child develops to the level of about an 18-month-old, and then regresses. The words Edie learned, including my daughter’s name, she lost, as she lost the ability to walk, feed herself, or even hold a loved toy.

Yet, just a couple months before she died, I watched her giggle uncontrollably as a neighbor’s son made funny faces at her.

This tableau played out at a party at Edie’s home, where 25-plus families gathered to honor Edie with a quilt. Each family made a quilt square, which then was stitched together by Rachel Paar, a family friend, former neighbor and remarkable quilt-maker. A onesie from Edie’s infancy is sewn into the quilt along with the words “Hope, Laugh, Joy, Love.” These words also form the four corner squares stitched by one neighbor.

“It will take us the rest of our lives to know the gifts Edie is granting us and our children — gifts of the heart like inclusivity and kindness; spiritual gifts like courage, patience, and gratitude,” wrote another neighbor when describing the genesis of Edie’s quilt.

After Edie died, she lay on her quilt in her room while many of us said goodbye to this remarkable child.

Edie’s family — Tom, Laura, Jack and Liza — have established a strong and loving support system, although how does any family put itself together again after the death of a child? Children die. It happens. But it shouldn’t. Even when you know the death is unpreventable and inevitable, it sucks. As my 6-year-old, who knew Edie all of his life, said when I told him she’d died: “You told me Edie wouldn’t be able to grow up. She didn’t have any choice. But I miss her.”

Never forget that community trumps tragedy. Thanks for giving me that mantra, James. It’s helped me through my sadness because it’s so true, particularly here, in this community, where none of us are related by blood, but we’re united because of one little girl. What matters, ultimately, is not what the community contributed to the Burkes or to Edie, but what she contributed to us—how she brought us together and gave us hope, joy, laughter and love.

Edie, I’m so grateful for the connections and the community that sprang to life around you and with you. We miss you, Edie. And we thank you.

Donations in memory of Edie Burke can be sent to the National MPS Society (www.mpssociety.org), c/o Donations, 4220 N.C. Highway 55, Suite 140, Durham, NC, 27713.

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6 thoughts on “Edgy Mama: Life of a child

  1. Becky

    That is a very touching story. I think our little neighbor, who died two years ago, had the same thing. His name was Tommy, after his Dad. He was okay until about that age, and then basically got worse and worse until he died. He has a little brother who is about my daughter’s age, and much as you describe Edie’s siblings, he is a very sensitive and caring little guy. To watch a child slowly getting sicker and sicker, over a decade of this, surely has to be one of the most challenging experiences there is. They were doing research on this at Duke, I think it was, and the family would travel there for treatments. But, sadly, they don’t seem to be ablt to do much about it yet.

  2. Restless

    EM – What a beautifully written tribute to Edie’s remarkable life. You are blessed to be in such a supportive community and indeed blessed to have known Edie. We all are.

  3. lampshade

    Alan, it says clearly for these forums that when posting, Please keep your comments relevant to blog entry.

    You need to be censored. You are a wacko who insists on ruining Community (with a capitol C) by your single-minded rants – and not just on the Mountain X forum but on the ACT (and probably others) as well. Please find another way.

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