The immediate aftermath of diagnosis after our little ‘holiday’ in hospital felt quite brutal. All our peers lives remained unchanged and after a couple of weeks, people stopped calling to inquire how we were doing. They stopped asking if it was all ok now and if we’d stabilized things (this may have had more to do with some of my acerbic responses rather than an actual lack of empathy!) and carried on with their lives and unfolding dramas accordingly. I knew this was as it should be. I knew I didn’t want my child to be defined as the sum total of one diagnosis. It wasn’t going to be all we were about as a family. We would absorb this intrusion into our lives and all would be well. And yet, I was at times consumed with fury at the cavelier approach friends had to their children’s health and wellbeing. During those first few months post diagnosis we saw our friendship group contract alarmingly. People whom we had considered close friends faded away. It added to my grief as I mourned the loss of the lives they were living. It didn’t help that I was constantly watching my baby. Waiting for the unseen liquid I had injected into her to become active with her very survival completely at the mercy of a baby’s whim as to whether or not she would eat. It was exhausting and I was weary and very, very angry about the whole business!
And then, by chance, I met the father of a child at preschool with my eldest. We were on a boat trip one evening
enduring enjoying a parent’s social. My toddler was at home with a sitter, but the baby, as ever, was my constent companion. When we started chatting I had no idea that this man would change our lives, for the better, forever. He had been diagnosed with T1 when he was a child and he started to tell me all about pump therapy. I hadn’t come across the treatment anywhere before – this was 9 years ago and I’m afraid I was very slow to join the ‘go to google’ generation! There was no Facebook (really!) and social media was but a twinkle in a geek’s eye! So here I found myself, incrediably fortunate, chatting to a man who had spent the past 18 months researching every aspect of pump therapy. We talked, non stop, for nearly two hours. By the time I disembarked, my plan was clear. At our next consultation, I would start lobbying my consultant for a pump.
Less than a fortnight later I was sat opposite our consultant laying out my plan! The huge grin that spread across her face told me that I may have just struck gold. I was leaning against an open door! The team at the hospital had recently inherited a pumper from the States and the results had convinced them that this was a therapy worth trying.
This was how we became one of the first patients at our hospital to be put onto an insulin pump. The change in my baby was incredible. The stats and volumes of information I’d read about pumping had convinced me this was the only way I could ensure my daughter recieved the tiny amounts of insulin she needed with the precision she required, but none of this literature told me of the transformation that would occur in my child once she was released from the tryonny of wildly fluctuating blood sugars, or perpetually high blood sugars. Within 24 hours of starting on a pump, we started to meet this funny little baby, who started to giggle again. I hadn’t realised she’d stopped, until she started again. She quickly regained her inquisitive personality and started to attack life again, demanding more from herself and her surroundings every day. She started to career through the developmental mile stones where before she had been faltering a little. In short, she’d got her mojo back, and though I hadn’t appreciated it had been absent, she was certainly making the most of this new full of life feeling she had!
And so we began our adventures with this new little Pumplett. It hasn’t all been plain sailing. We’ve been met with harsh criticism from some people who disagree with the choices we made on our daughter’s behalf. To them, I simply say that doing nothing and keepping the status quo wasn’t an option. As parents we needed to make difficult decisions which we believed to be in the best interests of our child. Faced with the information we had collated, doing nothing seemed to us a cop out. With hindsight, the only thing I would change were the months we spent on two injections a day, where we had absolutely no management over her blood sugars. The fact that, 9 years on, she still loves her pump, I feel vindicated in the decisions we made. They were right for her and right for our family.