I imagine were not the only community to be duped. The write/writers of the blog professed to be teachers, having a child with down syndrome, one with T1D and if I remember correctly a set of triplets. That’s a lot of heart strings getting tugged.
Sadly it happens. We live in a fast-paced, media savvy culture, news travels fast, good or bad.
Mad? No. Frustrated? Maybe. Just wondering how we can protect ourselves in the future, so as a parent, a blogger and also as a community we don’t perpetuate the untrue and the drama. That we always honor the lives lost with truth and dignity, that we support families as they grieve and at the same time we continue to celebrate our strength, our successes and our commitment to a cure.
The truth is, duped or not, we still need a cure, I still have nights that I am worrisome about Logan’s numbers and I still get up and check him.
I won’t lie, the blog post in question got to me, I was feeling raw, tired and mad at T1D. I read that a child had died in their sleep from a low and I thought “Enough already!“.
At first I hesitated to post blue candles, or to even mention death but I did. I should have listened to my gut but my heart took over and that’s what they were counting on.
Early on I had decided not to share those stories, or the blue candles, not that they didn’t matter, of course they matter, but I struggled with it for different reasons. Even though I chose not to share the blue candles, when I saw them they were always a reminder of how strong this community is, how loving and supportive they are and how we grieve together and stay strong. Together.
The good news, yes, there is always good news, is that it has us talking. The T1D community is coming together, bringing their ideas and their thoughts to the table so something like this doesn’t happen again.
We are talking about how to find a way so that those who want to post blue candles can and do. We are talking about how we feel, where we need to make some changes and how we may need some type of protocol or etiquette as Moira McCarthy Stanford mentions in her most recent post.
So, duped? Yes. But you know what? We still need a cure. There will always be people out there that will thrive in the drama and who will try to get in the cracks of our armor, it happens but it doesn’t define us or our intentions. It doesn’t stop us.
I don’t like that it happens. It takes our breath away, we struggle, we squirm, we think “How could they? How could we?”, but we are all human, we trust, we love, we care, we believe…and we don’t want to lose another child to the complications of T1D.
Don’t be mad or sad, be empowered, be vigilant, be determined. Take pause, be cautious, but don’t stop. This is not a reflection of your judgement but of your heart, you trusted, you cared and now you move on.
And you know what else? I am relieved, relieved that the post in question was not true. That a T1D child did not die in their sleep. That above all else, is what matters.
So duped? Yes. But it doesn’t change the truth, my truth or Logan’s truth, that T1D is serious and that we need a cure.