The county in which we live is not home to a lot of support for the families of Type 1 Diabetics. There just are not a lot of resources established for these families, of which we are one.
I remember my daughter's diagnosis four years ago. Our pediatrician's office was able to make the diagnosis, but there were no pediatric endocrinologists in our county so we were told to pack our bags for 3 days and head to the next county over to a larger hospital that specialized in this sort of thing. And that is just what we did. Our whole lives changed in those 3 days. We had to learn to care for our daughter - how to count carbs, how to give shots (YIKES, right?!)- 4 per day, how to properly dose the insulin (two different kinds) and not screw ANY of this up or it could be bad... very, vary bad. And all of this on top of dealing with the mental and family issues that come along with this diagnosis. We had our three days and then were kicked out the door to face the world as a T1D family. Now, certainly we had plenty of follow up appointments and educational classes but there wasn't ANY SUPPORT for the soul if you get what I mean. Our family was there for us but they were in shock as much as we were and they didn't know how to cope or what to say.
There is a reason support groups are set up in every community for every possible reason. Because they WORK! Over time I have made some friends in the "D-community," both here locally and online. So, finally after four years of living with this lifestyle and wondering WHY exactly we had nothing in our community we decided to take a leap forward and try to set up a support group.
Let me first say, this is when you find out who your friends are! And WOW do we have some AMAZING friends that helped to make this happen for us so I hope they read this and know I am thanking them all!
We started making some calls and sending out emails to find out how we would even go about setting up a support group. We wanted to host it at our local hospital because we felt it was a good central, neutral, and safe location for everyone. There was a surprising amount of hoops we needed to jump through to get clearance but we managed to meet all of the requirements and BOOM! We had our support group!
We designed the group to have a separate space for the kids to meet and the adults to meet so that kids could get together with other T1D kids and T1D siblings and see that they are not alone. And the parents could speak freely without the younger kids listening in and perhaps overhearing something and misunderstanding and misinterpreting.
The first two meetings were a little light on attendance but we had people (and that second one barely counted - we had some crazy late season snow storm that absolutely interfered!) Then WOW on our third meeting we filled the room! I couldn't have been happier!
We have lined up speakers to come in and have plans for the upcoming months. And we are excited to see our group of AWESOME T1D families grow and benefit from each other :-)
And have decided that we can absolutely do MORE for the T1D families in our county! So we have decided to form a non-profit organization geared toward helping these families connect. Berks T1D Connection is the community-based organization dedicated to improving the lives of all those affected by type 1 diabetes through support, education, advocacy, and awareness. Please visit our Facebook page and give us a LIKE: BERKS T1D CONNECTION
It feels good to take action. To get out there and do something about it.
I am excited to be a part of helping the T1D families in our community come together and assist each other in the daily struggles and triumphs of living with Type 1 Diabetes. TOGETHER we will make a difference!