Jordan Bennett Weiss slipped away from this world peacefully and quietly as he slept, in the early morning of January 19, 2003, from complications related to undiagnosed diabetes. Since then, our lives have been rocked in a way that only those who have experienced the loss of a child can comprehend. It is often said that the passage of time heals. As true as this adage may be for some, we are not able to see that it applies to our family. Parents are not supposed to outlive their children and the realization of having to suffer this devastation for the rest of one’s days makes for a long and difficult journey. We are living in the shadow of grief and struggle to find meaning in this profound loss. When we ask ourselves "why?" there are no answers for us. As surreal as the idea remains that Jordan is gone from us, we continually attempt to live our lives the best we can to honor his precious memory.

Through the JBW Fund, we have been able to distribute information about the warning signs of diabetes. The following stories are tributes to Jordan’s legacy that show how he has touched the lives of other children.

1. A five-year-old boy named Jared lives in Chicago and is the nephew of a friend of Sara’s sister. This friend received the warning signs of diabetes brochure and after talking on the phone with the boy’s mother immediately realized that her nephew had diabetes. He was taken to the hospital where he was diagnosed and treated for diabetes.
   

2. Margaret is a student at Mason-Rice, the school Jordan attended. A few years ago, the brochure went home to all families as it does annually. Her mother was able to recognize the symptoms in her daughter and took her to the doctor. The child was subsequently hospitalized and treated for diabetes.
   

3. Daniel, a ten-year-old boy living in Boston, was not feeling well for a number of weeks. His mother, a school nurse in Boston, attributed his symptoms to the flu. While discussing Daniel’s illness with the neighbor next door, she was alerted to the possibility that Daniel could have diabetes. Their next door neighbor had the JBW Fund’s brochure because they were fellow members of The Compassionate Friends, the bereavement support group for parents, where they had received a copy of the warning signs. Daniel was rushed to Children’s Hospital and spent five days in intensive care, where he was diagnosed and successfully treated for diabetes. His mother was told that one more day without medical intervention could have perhaps been too late for Daniel. We always look at his photo inscribed by his mother, “Someone saved my life today.”
   

4. A ten-year-old boy in Newton had been bedwetting for weeks during the late fall/early winter of 2002 at the same time that Jordan and two other fourth grade boys at Mason-Rice were having the same problem. This boy was seen by his pediatrician. The doctor never mentioned diabetes and the bedwetting continued. In similar fashion, pediatricians of the Mason-Rice boys didn’t test for diabetes when they were each seen. After Jordan died, the Newton TAB ran an article about him. The parents of the boy were stunned to read about the bedwetting information. As a result of the article, they took their son to the hospital where he was admitted, diagnosed and treated for diabetes. They too realize how unbelievably lucky they were and attribute the article to saving their son’s life.
   

Sadly, there are tragic stories of other families who were not aware of the warning signs of diabetes and suffered the loss of their child. In the greater Boston area, we know of three other children who died from undiagnosed diabetes in the past number of years. As recently as six weeks ago, an eleven year-old boy named Kyle died from complications pertaining to undiagnosed diabetes in upstate New York. We have heard of many other stories throughout the U.S. with shattering outcomes. Yet, there are hundreds more out there. We hope that our message of outreach multiplies so that the tragic lesson we learned will continually save the lives of other children.

Although we have yet to view a video of Jordan (it’s still too painful), we are able to look at photos of him that capture his nine and one-half years. We relive those moments that have become so precious: a picture of Jordan playing baseball or basketball, a photo of Jordan being held in his parents’ arms on the day he was born, or one of Jordan standing next to his adored older brother with their arms around each other. We also hold close to our hearts stories we remember about Jordan or that others have shared with us. When we hear a story that we never knew, it expands our memory bank and makes Jordan’s presence in our lives all the more real.

On the occasion of the 5th anniversary of Jordan’s passing, we are collecting memories – stories and photos or even video clips – that capture Jordan in action. We will compile everything into a tribute to Jordan on the JBW Fund’s web site (www.JBWfund.org) over the next months and then invite everyone to view it. Even if you have a small story (it doesn’t have to be funny), we would be grateful to have you share it with us via email: sara.weiss@jbwfund.org. If you have photos or videos from birthday parties or sporting events that included Jordan, we would be most grateful for a copy.

Mike Costello, Jordan’s beloved fourth grade teacher, wrote the following words as part of a poem for the dedication of a tree planted in Jordan’s memory at Mason-Rice. This tree is… “A place where we can go to gaze into the soul of a child who touched a community… We will remember the unfinished dreams… I’m certain that Jordan would have wanted us to rejoice each spring as its blossoms bloom, and to see each seed it generates as a symbol of the seeds of hope and joy he planted in each of us. We carry these seeds of memory within us, but it is up to each of us to nurture them, to help Jordan’s memory branch out from this spot, to teach the world about this one child’s noble life.”

We invite you to light a candle on Saturday, January 19th so that Jordan’s light may always shine, so that his memory may be illuminated and his life always be remembered by those whose lives he touched and by those who touched his precious life. The measure of a person’s life, especially one taken from us far too soon, is not counted in years, but by the lives affected because he lived.

Thank you for your support, love and concern. It means more to us than you can ever imagine. Thanks for taking the time to reflect on Jordan’s sweet life and to once again feel his presence shine in the darkness.

Sara, Mark and Jared

The Weiss Family – 20 Greenlawn Avenue, Newton Centre MA 02459

Jordan Bennett Weiss Fund – PO Box 590223, Newton Centre MA 02459