By JACKIE GOLDSTON
It is the fear of the unknown that is the hardest.
The fear that drips into your soul when you don’t know if your child is still breathing during the night.
The fear of the reactions that people have when you test her blood or inject her in public.
The fear that someone will reject her or bully her because of her disease.
The fear that she will not be able to fulfil her dreams because of judgement or intolerance or discrimination.
Of course these are many of these fears that most parents have at some time. But for the parents of children and babies with type 1 diabetes, they are fears that are lived out every day.
My daughter Freya is nearly 6. She was diagnosed with type 1 diabetes when she was 11 months old.
Our lives changed forever the day that she was diagnosed; however I will be forever grateful that she is still alive and able to live a life where most people will never be able to tell she is any different to them. That’s because while it can be deadly, type 1 diabetes is a hidden illness.
Unfortunately Freya is different to her friends. She loves school, dancing and swimming. She is already a champion rock climber.Jackie and Freya.
But every single day Freya has at least 5 injections of insulin, balanced to her blood glucose level at the time, the amount of carbs/ fibre/ fat she has eaten or is about to eat and the amount of exercise she has done or is about to do.
Yes – this is complicated and is very, very important. If we get it wrong and her levels go too low, Freya could die. If we get it wrong and her levels go too high, too often, over time she could lose her eyesight, her limbs and the ability of her internal organs to function correctly.
When I test Freya during the night, I always listen out for her breathing. If she is being too quiet, that sick, deep sense of panic sets in until I can put my hand on her and feel her, touch her and know she is still with us.Freya on a holiday in Italy.
During the night it is possible for a person with type 1 diabetes to have their levels drop fast and cause their body to shut down, causing loss of brain function, a heart attack and sometimes death.
As parents this is something we don’t like to acknowledge out loud – but is a truth that we must live with.
The only solution is a cure.
Today is World Diabetes Day (14 November). To learn more about type 1 diabetes, click here.