Being a parent of a child with type 1 diabetes, I can assure you, it is not something that you really want to go through "alone." It is not easy. You live it 24/7/365. It affects not only the child with T1D, but their siblings as well. You learn to live without sleep. You fight high blood sugars. You fight low blood sugars. And the anxiety that goes along with them. You worry about the long-term complications of the disease. You hope for a cure. You try to ignore the public ignorance of the disease and the insensitive comments.
It would be nice to have at least some support, right? Have a conversation with someone who knows what it is like. Believe it or not, we also only have one pediatric endocrinologist in the county that comes from outside of the county to see patients I believe it is once a month. Which really isn't enough. So, the overwhelming majority of the T1D pediatric patients are going outside of the county every three months to be treated by an endocrinologist. That being said, in all fairness, I should also point out that there are plenty of endocrinologists to treat adults in the area. We have managed to find an AMAZING peds endo and we LOVE this office. It is an hour away. It would be nice if it were a bit closer but given how much we love them, I suppose we can overlook the travel time every three months.
BUT, that doesn't satisfy the need for local support. Knowing that you are not alone. Having someone to talk to when you are having a bad blood sugar day.
So, we decided to do something about it. We jumped through all of the hoops with the encouragement of our friends and started building our own support group. I was part of an online discussion a few weeks ago discussing "support groups" and someone had indicated that the word "support" indicated a fundamental weakness and people would shy away but I disagree. A support group implies a collective strength from which we can all draw our motivation.
We started as an online group and will always continue this forum. The online group is FANTASTIC for that day-to-day interaction of sharing, asking questions, etc. We also now meet once a month at our local hospital, where they have graciously allowed us use of their conference rooms. We went from just a few families at our first meeting to at our third meeting just this week a FULL ROOM, which was most exciting! We had some GREAT conversation and everyone left that room at the end of the night wishing we had more time!
The bottom line is it is AMAZING to spend time with people who "get it." And I am thankful to be a part of both an online AND offline local community, as well as the extended "diabetes online community" (DOC) for support. Because life is so full when we surround ourselves with people who give us strength and we have the opportunity to do the same for them.