Finding Beyond Type 1 — This Mother’s Journey
The week before Cody was diagnosed with Type 1 diabetes I had declared my life as officially full. ‘No vacancies!’ I remember saying to a friend, probably over a glass of wine. I was a solo mum with two rambunctious sons, 4 and 10 years old. I had a new business, a new relationship, a dog and a big home to maintain. There was nothing more I could fit into my life.
And then Cody turned 5, started school, got sick and was diagnosed.
Thirteen years later, certain memories from that hospital room can still bring me to tears. A wee boy kicking and screaming as he was held down for another jab, then changing tack and sweetly saying to the nurse that he felt completely fine now and was soon going home with his mamma and dad. His father’s liquid eyes. My own terror.
Do you get used to it? If I’m honest, not really. I’ve heard Type 1 described as a ‘frenemy’ and it’s true. I soon developed a mantra with Cody — You have a choice. You are the boss of your diabetes or it is the boss of you. That’s true too, but you can’t just sit it down once a year and let it know who’s in charge. Every three to four hours, every meal, everything out of the ordinary, and there’s my boy negotiating once again with the terrorist called Type 1.
But here’s the thing: the personal strength, tenacity and passion Cody has had to call on day in and day out to stay in charge of his body are transforming him into a remarkable young man. He’s already endured burnout and fury, crisis and discrimination. And he’s handled it, and he’s handling it and I have no doubt the life he will create for himself is going to be successful and significant because of all he’s already been through.
His journey has changed me too. I have had my own grief to deal with, losing the right to a healthy child. I’m softer in the heart, but harder in the head. I’ve become politicised. #diabetes on a picture of a cake isn’t funny and spotting a cookbook called Reverse Diabetes, like I did recently, makes me crazy. Our government in New Zealand bundles Type 1 and Type 2 into the same funding pool and in the last round, saved themselves a fortune by downgrading Cody’s funded meter options to just one. One of the pieces of advice I read recently on a forum was about how to make it work on a cold morning: Pop it under the arm for a bit. It’s not okay. It’s really not okay.
Beyond Type 1 suits Cody and me. I’ve been parenting him to live beyond Type 1 for thirteen years already and now we’ve joined a whole community who are doing that too — passionately, pragmatically and with great creativity and joy. We’re not two lone wolves anymore.