Hi my name is Tina and I have been a Dmom for over 7 years. My last cry was Saturday.
Diabetes meet-ups are wonderful. While I have never been part of a 12 step program I have seen meetings in movies. I imagine those who attend such meetings feel a similar longing for understanding and acceptance and hopefully find a sense of calm in attending a meeting.
Monday evening I (along with some other fabulous parents of children with diabetes) arranged a meet-up for kids attending a diabetes camp this July. The turn out was good, about a dozen families came with their cwd and siblings. The kids played in the arcade as parents visited. It was great when the director of the camp and a counselor came to say hi and answer questions – totally unexpected as this was an unofficial meet-up and not camp sponsored. Having camp staff available to answer questions for first time parents was a real treat. The kids met other kids attending camp and that will hopefully make camp a little less intimidating day one.
A couple of hours after the meet-up I met up with two friends. One of whom also attended the camp meet-up. She isn’t as accustomed to diabetes meet-ups so when she said it kind of felt like going into a support group I could completely empathize. I remember all too well those first few diabetes meet-ups I attended and in truth they do often begin with what sounds like a support group introduction.
Name, age of cwd, and how long in the diabetes club.
It’s common for the nuts and bolts of diabetes to be discussed – what kind of insulin pump, CGMs, 504 accommodations, even the dreaded A1C (hopefully with no judgments from anyone at the meeting). Then if given the opportunity the conversations dip into the emotional side of diabetes; fears, perceived failures, difficult family and friends, hormonal teens, and the roller coaster crazy that is life with diabetes.
This last meet-up was short – two hours total. I don’t know that any of those in attendance got to the emotional side. It wasn’t really the right venue for the emotional stuff, it was loud and chaotic but hopefully also a little informative and really was for the kids more than the parents and I’m fairly certain connections were made. I know Sugarboy met another 5th grade boy who was painfully shy with adults but living it up with my boy and another 5th grade girl. They have hopes of being in the same cabin at camp.
Many families with diabetes never attend a diabetes camp, don’t attend conferences and don’t participate in organized activities. They get their diagnosis and continue on with life with diabetes riding in the side car. There is nothing wrong with this lifestyle. I have many adult friends with diabetes where this was the norm when they were diagnosed 20, 30, 40 years ago. I have these friends because at some point they found their way to the diabetes online community. They found other PWD online. They connected, and some, for the first time after 20 or more years with diabetes realized they really were not alone; there are others around that fight highs and lows, ignorance and even discrimination. As well as others that worry about complications or deal with complications. There is something so powerful in finding out you’re not alone. It is empowering. At the same time knowing you’re not alone doesn’t mean you have to be as involved in the diabetes world as others.
As a parent of three children with diabetes my hope for my kids is they find a place they are most comfortable. Maybe that place will be up front and center in the diabetes world. Maybe that place will be two different worlds – one with friends and co-workers with fully functional pancreases and another with other PWD. Or maybe that place will be one where diabetes rides in a side car and isn’t given any more attention than necessary to stay alive and thrive. Every PWD and CWD is different and just as insulin doses vary so does the desire for other people with diabetes in their lives.
My hope for all my diabetes family, which includes all people and kids with diabetes regardless of type of diabetes is that they find a sense of calm and belonging in their lives with as much or as little diabetes as they are comfortable with.
If you are not currently connected to a diabetes community but would like to connect in others IRL (in real life) or online I recommend the following:
- Contact your local JDRF office and ask if they are aware of any meet-ups or groups in the area
- Ask your child’s endo about local groups
- On Twitter search the hastags: #diabetes #DOC #DSMA
- Check out the Children With Diabetes forums – there are many different forums basically anything you can think of regarding all things diabetes has a forum
- Check out TuDiabetes – by the Diabetes Hands Foundation – again regardless of type there is something for everyone
- Consider attending conferences in your area or beyond. There are too many for me to list so I suggest doing a search for ‘diabetes conferences in (your area – list closest major cities)’ My favorite conference is in Orlando each July. It is the Children with Diabetes Friends for Life conference – although don’t let the name fool you – they have an adult with diabetes track as well
(Just a side note – while most everyone in the online community is there to support and be supported there are a few that trickle in that either don’t actually have diabetes or any connection to it that simply like to troll. Thus when entering the online community be weary and take the advice you give your kids when online – don’t share too much personal information like address, full names of family members, etc.)
‘Wherever you go, there you are.’ Is a quote and book by Jon Kabat-Zinn. Jon is a professor of medicine and teaches mindfulness, meditation and stress reduction.