The first anniversary – Cara Dobson
I’m fortunate not to have suffered any major trauma in my life. That is, until a year ago when, at only 14 months old, my daughter was diagnosed with Type 1 diabetes, food aversion, Situs Inversus Totalis (where her heart and other organs are on the opposite side of her body), and Primary Ciliary Dyskinesia (a rare genetic lung condition where the little hairs in her lungs, nose and ears don’t work properly to clear infection).
I remember the day clearly and all the events leading up to the diagnosis. I was thrown into a role of carer at a time when I was still getting used to being a first time mum. Not being able to fix these conditions is a daily struggle for me as a parent. The unpredictability of Type 1 diabetes in particular keeps it at a constant focus throughout the 24 hour day.
I’ve heard people say that ‘the first year is the worst’ and ‘once you get through that first year it will be easier’.
I remember people saying a similar thing to me about her not weaning onto solids, ‘it’s ok, it’s fun before one!’ That first birthday loomed too, as a day by which she ‘should’ be eating. She didn’t eat, chew or swallow anything other than breast milk, which was later diagnosed as food aversion. This has added to the difficulties in managing Type 1 diabetes, which in turn, has added to the difficulties in getting her to eat.
The initial unknown, defiant, adrenaline fuelled few months have got us as parents through the toughest time in our lives. Meanwhile, our daughter is taking it in her stride and is starting to manage her conditions herself. At only 20 months old, she asked me to weigh her food, and now carefully puts all her leftover food onto her plate at the end of a meal to “weigh it mama”.
She asks me to do a “test test” (finger prick test) before meals and bedtime, as well as asking her dad to do her “nose please daddy”. This refers to the saline nose rinse she has at least twice daily to help flush out infection, because the hairs in her nose, ears and lungs don’t move properly.
When the alarm goes off on her insulin pump, she runs over and backs up into me so I can see her pump and before a cannula change she reassures me saying it “doesn’t hurt”, as well as pulling a funny face which helps lighten the situation.
Though huge and daunting to us, our daughter is taking all of these things on as easily as learning to put her shoes and coat on before going outside or cleaning her teeth before bed.
We’re hugely proud of her.
This is her life.
She amazes us everyday and we will continue to support, protect and enable her to live a happy and fulfilling life. It will get easier and it has got easier. I know that there will be bad days, but the best days in our daughter’s life are still to come.