What does TP have to do with diabetes support?
Whenever I meet someone for the first time, who is either newly diagnosed with diabetes, (1 or 2) or has a close family member who is, my response is always, “Make sure you get support!”
Easier said than done, if you don’t know where to turn. I am including a list of useful links to sites and organizations that may be helpful at the bottom of this article.
Each case is different and each patient and family has different needs. I cannot emphasize this enough – find someone who has a similar situation to you and connect. I guarantee you this connection will be your life raft in a sea of the unknown.
As some of you may know, I own Out of Sight Cases, and I attend many diabetes events. Whenever I attend a diabetes function with someone who is not affected by diabetes, I give them a little heads up as we are walking in. I explain than this event will be different than others they may have attended outside of the diabetes world. Whether it is the DYF Gala in San Francisco, the Diabetes Summit at UCSF or a Lobster Feed in Half Moon Bay. All of the attendees either have diabetes or know someone who does, so any exchanges begin on the same page, which can be refreshing, yet heartbreaking. I say this, as no matter how often I go to these things and how hard I try, I inevitably end up in tears. However, they are different tears from the kind I shed in the outside world. These come from a place inside I rarely get to express. They are tears of understanding, sad reminders and pain. You see in the real world I cannot unleash this part of me. I must conform, lest I have to explain why I am crying. In the safety of this supportive environment, we can be free for a while. We are all on the same team and are happy to be with each other. This is a place where it is OK to cry when a child gets on stage to speak about his day, when it is OK to check your blood, give shots and corrections. No prying eyes or questions. We are one.
The first time I felt this kind of love and support was approximately 11 months after Emily’s diagnosis, way back in 2003. Emily had just turned 10. We signed up for the Diabetes Youth Families (DYF) summer camp program. Bearskin Meadow Camp is located in Kings Canyon, 255 miles southeast of our home. Neither of us were campers and had no idea what to expect. As Em and I walked on to the site, an incredible feeling of relief washed over me. And then something strange happened. A woman who I had met casually at a friends annual 4th of July parties appeared. Her son had been diagnosed when he was 2 and he was now a couple of years older than Em. What I found most surprising was that we both came from the same small town in the East Bay and had travelled independently to find solace among the trees. Valerie took me under her wing and showed me the ropes. The preceding nightmarish year faded, when I realized this community of people were my peeps.
The first morning is etched in my memory forever and I am grateful to the DYF for this experience. All of the parents were gathered and seated in a circle and one was handed a roll of toilet paper. What??? The stories and tears flowed as the toilet paper unravelled and made its way around the room. Each caregiver unleashed a year of pent up sadness, frustration, and/or joy. The TP was welcome and mopped up our wet faces. Burly dads, young moms, newcomers and old timers all shared their journeys. As we disbanded for lunch the relief was palpable. We were united in our pain yet strengthened by our shared experiences. We were no longer alone in this.
Please reach out to someone. If you are ever stuck my email address is: firstname.lastname@example.org and my phone number is (707) 299-8363. I would be more than happy to chat anytime. I have been there and know how difficult it is to navigate this new foreign way of being. I check my phone and email constantly, ever alert, in case of an emergency. I would be delighted to help.
The following links are great resources to get started.
The mission of the DYF is to improve the quality of life for children, teens and families affected by diabetes. The organization provides education and recreation within a supportive community, encouraging personal growth, knowledge and independence.
Diabetes Daily is one of the largest diabetes forums, boasting millions of visitors every year. This lively diabetes community also offers informative, relevant newletters, blogs and recipes.
Brave Buddies is an on-line support group for parents of kids with diabetes, primarily in the San Francisco Bay Area (including South Bay, East Bay, North Bay/Marin, East Bay/Sacramento, and Santa Cruz and environs). Brave Buddies is a service of Carb DM (www.carbdm.org).
Carb DM’s mission is to build a supportive community that improves the quality of life of and health of all those affected by type 1 diabetes (T1D).
The Carb DM community fosters connections among people with diabetes, their loved ones, and medical professionals, promotes learning, and develops strategies for thriving with type 1 diabetes.
Lilly is an expert in type 1 diabetes, and no one knows families like Disney. Now, these two companies have come together to create special resources for families like yours.
This is an online community for kids, families and adults with diabetes. Visit their website to read digital versions of select Disney and Lilly books, watch videos, and find info on more helpful resources by Disney and Lilly Diabetes.
Children with Diabetes is an online community for kids, families and adults with diabetes