I sat at my kitchen table completely overwhelmed and surrounded by life-saving supplies piled high. I had been saving up my tears for this moment. I was finally alone. There was no one around that needed me to be strong so I buried my head in my hands and cried like a baby. I managed to hold it together earlier in the doctor’s office as I watched big tears roll down Jake, my sweet 8-year-old son’s face, not because he gave himself his first insulin shot, but because he was now disqualified from his dream of joining the military and following in the footsteps of his Marine grandpa and Paratrooper dad. At that moment, I knew this was not the diabetes I was used to hearing about on TV and in the media. Type 1 diabetes seemed more sinister — one that not only tried to kill my child but also stole his dreams.
That evening sitting alone at my kitchen table completely overwhelmed and feeling alone, all I wanted to do was meet someone face to face who was already living it. I needed a tangible hug and to hear the words, “I know exactly what you are feeling right now. You are not alone.” So over the next year, I bookmarked those feelings until empathy became a catalyst for me. With the help of friends and family, we established a mission to provide immediate and consistent local support to those newly diagnosed with Type 1 diabetes in our hometown of Tyler, TX. We put a board in place, incorporated with the state of Texas and Tyler Type One Diabetes Foundation was born.
Little did we know that we would hit the ground running a few weeks later with our first family to support — a 9-month-old baby girl named Faith, diagnosed with Type 1 diabetes only hours from death. Susie and her son Jeremy thought they were going to just another quarterly endocrinologist appointment, something they had been doing for over 17 years since Jeremy’s diagnosis at 16-months-old. When the appointment was over, Dr. Casas, our beloved local pediatric endocrinologist at the time, turned to them and said, “Well, you have been talking about reaching out to those who are newly diagnosed, and today, I have someone that wants to meet you if you are willing and have the time.”
Susie, was the President of the board for our newly formed local non-profit. She was also a pastor’s wife and loving people through hard times was second nature to her and Dr. Casas knew it. He also knew that Jeremy was a healthy, articulate, kind-hearted young man who would embrace the opportunity to share his story. As a matter of fact, they were not even originally scheduled to come in that day for an appointment, their normal appointment had to be rescheduled and they just happened to be there that day … the day 9-month-old Faith Wilson, the youngest child to ever be diagnosed with Type 1 diabetes in Tyler was recovering in the Children’s Miracle wing of the hospital. The timing could not have been more perfect for visiting Faith’s family who were still in shock and overcome with fear.
When they walked in, Sarah, Faith’s mom, said, “It was like hope walked in the room.” Susie and Jeremy passed around plenty of hugs and hope that day in the hospital room — face-to-face, hand-to-hand, shoulder-to-shoulder — tangible hope. This is an example of what I call the “cycle of support.” Sharing our experience and knowledge that have come out of difficult circumstances with those that desperately need it not only helps them but it also helps us find deeper meaning and purpose.
Everyone in that hospital room that day experienced a level of support and comfort that can only be found in the cycle of support. We watched it unfold in our local community in the coming weeks, months and years. Working hand in hand with Dr. Casas and his staff, we developed a formal system of visiting newly diagnosed families within 24 hours of diagnosis. We created a “gift basket” filled with snacks for treating lows that other Type 1 families had recommended. We wanted our support to be practical and immediately helpful.
Delivering the baskets was bittersweet. It never grew old walking in that door with a basket. Parents would have tears streaming down their sweet faces yet the child’s face would light up knowing that the gift basket was just for them. Hugs came natural and so did the words, “You aren’t alone.” Meeting people face-to-face in one of their darkest hours was a privilege and we never took it for granted. We were careful to simply love them and surround them with the support they needed in that moment. We also took the opportunity to write down their name and invite them to our monthly support group.
Amazingly, after making a face-to-face connection, almost everyone we visited found their way to our monthly gatherings. We weren’t just a printed card given to them at the doctor’s office. We now had a face and a name. This turned out to be the key for building a thriving local support group. From the beginning we wanted our model to be duplicated or adapted as needed in various communities. We are happy to share what we have learned over the last seven years and offer a guide with our tips for building a successful local support system. Regardless of whether you simply want to meet once a month consistently with your Type 1 community or launch a local nonprofit, you can download our guide. We hope that you can glean the help you need to support your local Type 1 community. We all need someone who lives it to look us in the eye and say, “You are not alone.”