By Cathy Casden – On October 9, 2011, my then 4 year old daughter, Olivia was diagnosed with Type 1 Diabetes. We spent the day before at her cousin’s soccer game and Olivia just didn’t seem herself. By the time we got home that evening, we were convinced that she’d come down with the stomach bug making the rounds on our street. We tried to get her to sleep early, hoping a good night’s rest would make her well. But, she couldn’t get to sleep. I “slept” on the floor next to her bed and tried to comfort her as she restlessly alternated between feverish spells and multiple trips to the bathroom (I lost count at eight).
At 5:00 in the morning, she started panting, just like a dog would. At the time, I had no idea she was in Diabetic Ketoacidosis (DKA) and this was her body’s way of trying to rid itself of the built up acid. We quickly dressed and headed to Desert Regional Hospital. I thought they’d give her some IV fluids and maybe keep us overnight. I had no idea what lay ahead.
Once we arrived at the ER, we were called back into the triage area. In an effort to satisfy a nagging feeling that tugged at me the previous week, I asked the nurses to check for diabetes. They eyed each other reluctantly and agreed to test her, clearly trying to appease the “crazy mother.” When the meter beeped and 371 came up, my suspicions were confirmed. Things moved quickly and before we knew it, Olivia was in a bed with an IV and the race was on to find a facility that could treat her. Desert Regional has no Pediatric ICU and the nearest one at Loma Linda was full, so we were sent via ambulance to Riverside County Hospital in Moreno Valley.
We spent a total of four days in the hospital. The first 24 hours, Olivia was in Pediatric ICU on a constant insulin drip. Then, the next three days she was treated on the regular Pediatrics floor and we were given a crash course in the day-to-day management of Type 1 Diabetes. Our daughter’s new normal would involve counting carbs and injecting insulin. Strangely enough I already had experience with injections, as we had not one, but two, diabetic dogs when I was growing up. Of course, I never imagined that injecting insulin into our family dogs would be a training ground for my own child.
Then we were sent home. To say we were nervous would be an understatement. But, at some point we needed to return home and leave the safe cocoon of medical staff that surrounded us at the hospital. Armed with the knowledge we’d gained over the previous three days and instructions to call her doctor if her blood sugar was over 400, we headed home.
Those first few days and weeks at home were rough. It was difficult remembering all the steps that needed to happen to keep our child healthy. It was about this time that Olivia began to realize that this wasn’t going away. And in turn, we made a promise to her that we would do EVERYTHING in our power to help find the Cure for Type 1 Diabetes. She compared finding the Cure to playing hide and go seek, as though the Cure is hanging out under a bush, just waiting for someone to find it.
As we tried to settle back into our daily lives, we realized how isolated and lost we felt. We knew no one with this disease and felt the need to connect with others who could relate to what we were going through. Thankfully, a client of ours connected us with a long-time volunteer for JDRF (Juvenile Diabetes Research Foundation) and she was our lifeline. She’d been going through all these same challenges for a long time.
Since we couldn’t find any other support in the desert, we were determined to build it ourselves. We began by starting a group on Facebook called Desert Diabetes Families. The need for connection among these families was apparent and we were able to share experiences with many more Type 1 Families in the desert.
I became active in JDRF and even spent a year working in Government Relations. While that was very empowering, meeting with Senate and Congressional leaders, I truly felt that my JDRF calling was on a more local level. The need for a support group in the desert was still desperate. I knew that every day families were receiving a new Type 1 Diabetes diagnosis and had no place to turn for answers, help, and support.
So, my focus now is to build a strong community of Type 1 Families locally, a place to find understanding and share knowledge. We developed a strategy to find Type 1 Families in our area: using our existing Facebook group, the JDRF Facebook page and sending letters to all of the school district nurses to get the word out. We’re off to a great start and held our first meet and greet for desert Type 1 families. We had about 25 people attend, which included 5 new families! One of the new JDRF families has volunteered to be our Support Group Chair and we are planning on our first official support group meeting for early 2015.
Today, Type 1 Diabetes is just another part of our lives. Olivia can eat, drink, and do anything. Sure, diabetes makes itself known from time to time (especially during the early morning hours) but it is no longer a constantly overwhelming, scary thing. We’re three years in and experience really is the best tool for managing this disease.
Olivia recently started competitive ice skating and I’m very proud to say that in her first two competitions she won first place three times and second place once. I am so proud of her because not only did she get out on that ice and perform her programs wonderfully, she did it while also managing her diabetes. On those days Olivia won, not Type 1 Diabetes.