Sad and Disappointed

This has been a sad few weeks in the online Down syndrome community. Several young children have died, some unexpectedly and some after fighting long-term illness. To watch our community gather on message boards, facebook, and through email to support families and mourn these losses is a sight to behold. We are fiercely protective of our community – we feel these losses keenly, even if we have never met the little one in person.

But that protection, that bond took a hard left turn into a bad place this week.

A sweet little girl ran out of treatments and options; the family was told she had just days left to live. Somehow, conflicting information spread like wildfire across social media and a faction of our community came to believe that she was dying because she had been denied a heart transplant simply because she had Down syndrome. Really, this had nothing to do with a transplant at all – it was a tragic situation of there being nothing left to do for her.

So instead of sending just our prayers and our positive thoughts and our kind words to a family going through their worst nightmare, we debated. We tried to “fix” something that the family had not asked to be fixed. They had asked only for our prayers, and we came back with suggestions to send reporters to their house to bring light to this “injustice.” Some even suggested we involve Sarah Palin and Rick Santorum (and don’t even get me started on that). Instead of raising a bit of money for the family, who had been out of work to care for their sweet girl, we circulated a petition to the president of the United States to make it illegal to deny a transplant based on Ds alone. (A complete waste of time since the diagnosis already cannot be used as an automatic disqualifier, and also since the president is not exactly the authority we should appeal to on this issue.) Instead of merely mourning for this family, we made their grief our own outrage and misinformation spread and anger flared.

We took our collective bad experiences with the medical field and projected onto a family that simply needed our love, our gentleness. I get it, I do – even Rowenna has been on the receiving end of poor medical care because of her diagnosis. I understand the desire to believe that this girl wasted away simply because of an extra chromosome and the rampant prejudice that exists against those with cognitive disabilities because I’ve seen Rowenna’s symptoms completely dismissed because, well, “you know how those Downs kids act.”

I admire the tenacity of the Down syndrome community, and I often wish we could band together on a single issue because we would certainly be a force to be reckoned with. But today…today I am disappointed in us. I am disappointed in our unwillingness to stop and research. I am disappointed in our jumping to conclusions. I am disappointed in our taking a family’s grief and turning it into something big and ugly.

And, truth be told, I’m sad to think that all this anger and in-fighting and “I told you so” will result in absolutely nothing. No forward motion. While her specific situation was not the result of a transplant denied due to Ds, it did begin a dialogue in our community about the ethics of organ transplantation. The statistics do show that there is a clear bias against those with cognitive disabilities when it comes to receiving organs. There is a dialogue to be had here, and an avenue for advocacy should anyone choose to take up the mantel.

I understand the desire for action when you feel so helpless. I understand holding your own sweet baby and just raging that another momma can no longer hold her own. I challenge our community to create something beautiful from the chaos and confusion of the last week. I challenge our community to do something concrete: consider organ donation and consider advocating to change the bias against those with ID/CD who need organ transplants.

And I implore that when one of our own is in crisis or has left us, that we listen to the family. Follow their lead. Send the help for which they ask. Leave our anger at the door. And advocate when and where it is the time to do so, not while a family lives their worst hours.

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As for sweet Annie who lost her battle this morning, if you would like to help her family, there is a fund here. The family would also appreciate donations to Ronald McDonald House.

Another dear girl, Fiona, lost her fight last week, and her family has a non-profit that brings tote bags to families facing unexpected hospital stays. If you’d like more information about the project, or information about how to donate, please visit Fiona’s Hope Totes on facebook.

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