It has taken me a full week of being home and reflecting upon what I experienced as part of Children with Diabetes Friends for Life Orlando 2017 to be able to share with you about it. Everything about the experience pulls at the fiber of your being to weave yourself into the fabric of this organization and all that it accomplishes in connecting families and individuals living with type 1 diabetes.
I knew that my journey had come full circle (and that the time had come to share here) when, at Disneyland a week after arriving home, I was tapped on the shoulder by a father whose young daughter had recently been diagnosed with T1D. He saw the telltale pod on my arm, and as we spoke, I could see from afar his 8 year old daughter with her Dexcom arm site and blue flower Grif Grip. Hailing from the Bay Area, the family had a great deal of familiarity with the diabetes tech work being done by companies like Tidepool and Bigfoot Biomedical. Our families spoke for a few minutes outside of the Tiki Room, and I pointed to the green band still on my wrist as I told them about a vital organization they were not yet familiar with, Children with Diabetes. I strongly encouraged them to look into attending Friends for Life Orlando 2018, as well as coming to Anaheim in the Spring. What I hoped to impart is this: the devices that we wear (insulin pumps, continuous glucose monitoring systems) are a game-changer for managing diabetes in our bodies and the unique psychosocial support that comes from CWD programming is a game-changer for managing diabetes in our hearts and minds. Medicine, technology, and support together address type 1 diabetes in the whole person, which is why CWD and Friends for Life are so important.
Before I attended my first Children with Diabetes conference, a regional weekend-long event in Anaheim, California in 2014, living well and thriving with type 1 diabetes was somewhat of an abstract concept. Having been recently diagnosed a few months prior, I knew that living well and thriving with type 1 diabetes was what I wanted to do, but I did not know how to do it. At times, I sincerely wondered if it was possible. After attending the CWD Focus on Technology conference, it became clear that this was a massive piece of the puzzle: to live and thrive with diabetes, we must be in community with others, constantly learning, reaching out, and supporting each other.
Fast forward to 2017. I now have several Anaheim conferences under my belt. Each was wonderful and unique unto itself, but none of them are quite like what I just experienced in Florida last week. I had the incredible opportunity to participate with and support the grandparents program faculty during Children with Diabetes Friends for Life Orlando 2017. Working with precious grandparents and caregivers to build their confidence in providing love, care, and safe, “normal” life experiences to their little ones with T1D was a gift. Because of the structure of the program, we were able to provide important T1D fundamentals at a pace that was comfortable for all participants. From sitting one on one with them for individual instruction, to sitting on the “Ask the Experts” panel amongst faculty members whose work I greatly respect, I was grateful for the opportunity to meet such strong, passionate family members and have an influence on their journey as a confident T1D caregiver. My hope is that more families will bring their extended members to be a part of the incredible grandparents programming that is available for this purpose. The more, the merrier!
To be honest, I had high expectations going in, but nothing could have prepared me for the magnitude of what I experienced in Orlando. The magic of being at Disney’s Coronado Springs Resort helped to underscore the sweet mix of new knowledge, friendship, and connection to a community that is greater than one could imagine.There are highs and lows in life with T1D, and I don’t just mean the blood glucose numbers. The challenges are physical, emotional/mental, financial, and psychosocial. We deal with these “lows”, when they occur, with all of the grace and strength we can muster, doing what has to be done in order to move past. There are “highs” too; moments of joy that uplift the soul in direct opposition of diabetes-related negativity. Friends for Life is a week-long high for which no correction is needed (diabetes humor!). From the moment I registered and received my green bracelet, I knew immediately I was amongst my people. You see, there’s this simple wristband system that is loaded with meaning once you have worn one yourself. Upon checking in for the conference, you receive a wristband. If you have type 1 diabetes, your wristband is green. If you love someone with type 1 diabetes, your wristband is orange. If you have Celiac disease, you also get a yellow wristband to be worn in conjunction with your green or orange band. These wristbands grant admission to the week’s session tracks, social events, the amazing exhibition hall, and delicious meals amongst friends. They also exist as a physical manifestation of what we know about ourselves and each other, that we live with T1D, or we provide care for a loved one with T1D, and we crave peer connection--and now we can see those among us whose story is the same as ours. This may be the most powerful influence the paper wristband has ever had upon a group of people, but its command upon the soul is strong and deep.
The thing is, after (now more than) a week of wear, showers, pool trips, outdoor treks, dance parties, and spontaneous FFL gatherings, my wristband is fading and tattered...but every time I have gone to yank it off of my wrist, I think of a reason that I want to leave it on. I’m not sure that I’ve been ready to close the door on what I just experienced and removing the band would do just that. People like to ask what it is, so it is also a conversation starter. Just like the insulin pump and CGM I proudly sport on whichever spot is next in the site rotation, I want to keep wearing the wristband so that somebody will ask me why, and I can link them to this magical world of people just like me. Today is the day; I’ll finally remove my wristband, knowing that I’ve made the most of wearing it this year. Being a “green band” is on the inside (figuratively and literally; comes with the territory of the non-functioning vital organ), and I’ll carry that spirit with me until I’m back with the FFL gang again in 2018. I hope you will consider joining me there!
Disclosure: I am incredibly proud to be a part of such an incredible organization and appreciative of the opportunity to have served at CWD FFL 2017 as a staff member. As such, my travel and lodging were provided by the organization. However, the heartfelt opinions expressed here are my own.
Please let me know if there are any questions I may be able to answer for you about Children with Diabetes and/or Friends for Life. I am also happy to point you in the direction of the individuals whose dedication and hard work make Children with Diabetes programming possible. This includes their foundation board, conference staff and volunteers, and founder Jeff Hitchcock. The personal motivation that comes from wanting to make a place for your child who lives with type 1 diabetes is a gift that keeps on giving, not just to your immediate family, but to the family that we all belong to in our T1D world. A huge thanks to the Hitchcock family for the myriad ways that their actions, influence, and involvement continue to move us forward, as well as Laura Billetdeaux, whose organization in planning and executing the programming for FFL is vital in its operation.
If you are inspired to make a financial contribution to help support the important work of CWD, please visit childrenwithdiabetes.com/donate. Thank you!