Today we remember Dylan James Manning (DJ) who died on this day three years ago from a rare genetic disorder called Tay-Sachs Disease. He was three months shy of his 5th birthday.
Each year we vow to remember Dylan’s life and continue his legacy by spreading the word—Andy by wearing the blue “Just Believe” bracelet he hasn’t removed in nearly five years--and by having our children participate in a balloon launch memorial in Dylan’s name.
This year the balloon launch was preceded by a large storm raging spanning nearly a 200 mile stretch. But miraculously, 15 minutes before we were to gather at the site where Dylan is buried, the clouds began to fade and the sun peeked out. Divine intervention! The kids each had a balloon to release to the heavens, and this year an added treat: butterflies! Each of the girls opened their own envelope to reveal a Painted Lady butterfly and made a wish. We place our butterflies on Dylan’s grave site bench, along with a kiss. (Photos to come.)
Sadly this was the first year that attended the memorial. Though I had been at the funeral services and have kept Dylan in my prayers, I have avoided facing the family more than I had to. And I realized why. I am afraid. Afraid to face the facts of life and death, particularly when it comes to children. But what I have realized is that it’s not about me. Not one bit. It’s about the parents and the support we can be to them.
As we drove up to Dylan’s grave and exited the car, I felt and overwhelming feeling of sadness that took my breath away, but as I glanced over at his parents and two younger brothers and other family rejoicing in his life I realized then that with tragedy comes purpose. And Dylan’s purpose is to educate people about how the disease can be prevented.
Tay-Sachs is a preventable but fatal disease, historically found mostly in Ashkenazi Jews, however research has categorized French Canadians, Louisiana Cajun, Pennsylvania Dutch as high risk, and preliminary data suggests persons of British Isle and Italian decent are to be considered high-risk.
A simple blood test can determine if you are a carrier of the gene –both parties must be carriers and you then have a one in four chance of having a child with the disease.
Although it’s increasing difficult to explain to my children as they’ve gotten older and more inquisitive just what happened to Dylan and where he is now; that he was the same age as my oldest when he left this Earth and joined God in Heaven, and to explain how he got there (Alexandra asked if Tinker Bell sprinkled pixie dust and he flew to heaven like Peter Pan. My answer was, yes.) I know it’s important for them to know and will become even more so when they are grown. My hope is that it will strengthen their character so that they will be compassionate toward others and not take the easy way out of difficult situations by making themselves unavailable, as I mistakenly have, but to extend their hand to those who need it. It’s also important for them to know that with sadness there is hope.
If only we all could learn as children.
For more information, please visit http://www.ntsad.org/. To learn about DJ and his life please see http://www.djsfoundation.org/ or http://www.caringbridge.org/cb/viewJournal.do?method=executeInit.
8 years ago
