This is just one experience of our trip to Florida to be with our people. I’ll be writing about other experiences from Masterlab and FFL in coming posts.
Masterlab, organized by the Diabetes Hands Foundation (DHF), is a program filled with experts who are immersed, on various levels, in a life of diabetes advocacy. The audience were those of us who feel a call to be more involved, are already involved but need a refreshing nudge, or those who are in the thick of it and getting good stuff done. It is held the two days prior to the whirlwind that is Children with Diabetes – Friends for Life (CWDFFL).
This year I was fortunate to be at FFL early and could attend the sessions. Many people choose to not advocate for diabetes because it just isn’t their thing. It’s been in me to be a person who routinely speaks up about what I feel is important or helpful in life, which could involve the endorsement of a great product/company, bitchin’ doctor, or superb organization I appreciate beyond compare. Road ID and Zappos benefit from my pushing their product and customer service. For many years, our local clay community has benefited from my having been born a natural publicist/public speaker/event planner, now I’m putting those skills to good use as a high school band booster president. (Reminder to self: one year down, one to go.) Communication for me is at the very core of who I am (which drives my family completely bazonkers), so is justice, and what I refer to as the “Girl Scout” way. Be prepared. Be fair. Get involved. Stand up. DO something. Sometimes when I get too wound up I have to remind myself to stop, sit down and shut up.
Quoted at #Masterlab:
“Our lives begin to end the day we become silent about things that matter.”
Martin Luther King
That makes perfect sense in my world.
Since day one of my Pip’s diagnosis, I’ve not been silent. In the hospital, I started a care page to inform family and friends and bring awareness. I signed my kid up for diabetes camp, participated in walks, helped organize fundraisers at school, and joined a support group for families, But, I can do more and I want to do more. Over the last year I started this little blog (Free therapy!) and became more present in the diabetes online community (DOC) in reading and commenting on other people’s blogs, tweets and Facebook posts. I also make my way around organization’s websites and purchase t-shirts that speak for Me and She and many other dPeeps as I walk around the planet. This increase in connectedness has made me a better mom to my She. There are so many voices in the DOC that I had to search for and then settle on about a dozen or so that speak my language and turn my brain on. Or challenge me. I really love those.
One of the things I’ve noticed lacking in this community is a voice for those people who are trying to manage diabetes in two houses, and the massive amount of frustration that comes with the necessity of dealing with a person with which you found it impossible to live. And, there’s certainly no voice for people who are doing it WELL. My idea to be that voice in the DOC has been percolating for a while. It was at these sessions where I said it out loud and the observation of what’s lacking became the question, “Do I want to be that voice?” Others told me I was being called to action. Am I really? Are you sure about that? That sounds so “sticky”.
I’m still mulling it over. And with mulling it over, comes a myriad of questions. How? Divorces and breakups are messy; filled with anger, resentment and fear. Diabetes is messy and mostly filled with the same emotion. We loathe diabetes just as we can loathe an ex. We want to forget diabetes exist just as we’d like to forget an ex exists. I think about how difficult it is for me to now be in the presence of a person in pain from a breakup, because I naturally absorb some of that emotion and take it home with me. Do I really want to bring that kind of negativity into my happy life?
On the other hand, we can appreciate diabetes just as we can appreciate an ex. Maybe I’ll just start slow, with this blog, and spend more time concentrating on sharing what has worked well for us in future blogposts.
I wrote this note to myself sometime during a MasterLab presentation:
The first step in becoming an active advocate is believing enough in yourself to do it, and believing others will help you along the way.
Let’s get this thing rolling.