When our youngest was diagnosed at age three in 2006, it was still at the height of airport terrorism and I remember thinking about how living with Type 1 Diabetes was like living in the government's Terror Level Orange - except unlike the government chart that moved to yellow or green, we lived under orange all of the time. Having so much stress on your shoulders can mess with your mojo to the point that you completely feel isolated and alone. I remember living life in two hour blocks, afraid to leave the house and never once stepping away from my daughters. Two hours was all that I could muster as it was just enough time to get to the next blood sugar check and to know that my baby was still ok.
Some friendships faded too and I think back to that time and know that I was partly to blame. Listening to other parents dicussing issues with lack of sleep or children not eating a balanced diet was so incomparable to our world of life and death. Food was a life source but only with insulin and not too much. Sleep was scary (and sometimes still is!) and I remember sleeping in short blocks for fear of my child never waking up again. It literally felt like death hovered at every wrong parenting turn.
It was physically exhausting but even more so, emotionally exhausting. I lost a lot of joy. This was probably my lowest of low. In fact, there was even one rocky moment while sitting in a Costco parking lot in which I could not even begin to control the flow of tears. I sat for over an hour trapped by exhaustion, grief and despair of T1d. Goodness knows what the cart return kids thought of me!
Clearly this time in our life was difficult and what made it worse was not having an expert to turn to. Our diganosis was a first for our family. There was no one to step in to help us find our way back. In our little family of four, we had only each other to share the ins and outs of T1d world.
Truly it was an oasis when we found our first support group, people who were bonafide experts. Experts because they were also living with T1d and experienced the same rollercoaster of emotions. Although that group ended up not being the best fit, just knowing that there were other families also living in Terror Level Orange was enough. Like floating on a life raft, we knew that we would be able to find our way back to a new normal, eventually.
It also helped to be able to start blogging with the Diabetes Online Community (DOC). Even if you feel like your words would not be heard, just the act of taking time to release your feelings through pen and paper is often simple enough. Blogging led to finding other online support groups and even more, real life groups. All people after diagnosis of T1d, looking for experts and creating a new normal for their own families.
Over time and through being open about our world, we have been able to collect an entire community of friends that share our journey and support our family. Some of our family have even stepped forward to offer their kindness and compassion too.
Occassionally it still happens where we land on Terror Level Orange. Mostly at night and when we are at our most fragile from lack of sleep. By having such a broad range of friends through the DOC, I know that someone is awake and waiting for me on their life raft.
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