Over the past twelve months I have begun to learn to deal with the reality that is Type 1 Diabetes. Anyone that has ever read my fledgling blog will know that my little boy, Frank, was diagnosed last October and that it has been a difficult year since.
A week ago I was feeling like I had made such good progress and then something happened that threw it all into question again.
I know Frank has a chronic condition. I know he would die without insulin and that it is my job to administer it.
Managing Frank's T1D is an art, not a science.
His blood sugar can alter in a moment, despite careful planning. Excitement, tiredness, growth spurts and exercise can all affect his sugar levels. He in not keen on having his blood sugar tested as it involves pricking his finger and getting a good sized drop of blood out of it. Afterwards he holds his hand under his arm like an animal with a wounded paw. I cry but try not to let him see. However, children pick up vibes from their parents. He knows I struggle with it.
So, anyway, this Wednesday he was at 22.6 at 8pm. Way too high considering we should all aim for between 4 and 7. We gave him only one unit to bring his levels down but also some milk as he said he was hungry. Andrew had work to do and was in the dining room so I decided to plan my lesson for the following evening. I was tired but felt I wanted to test his blood sugar again before going to sleep. So, I planned and waited and something in me didn't want to sleep.
Then at midnight the lights went off. I could hear drilling in the street and saw that there was a group of workers fixing a problem up the road. All the lights were off, even the street lamps. Andrew had to abandon his work. I did too as my computer has no battery power beyond twenty minutes. We went into Frank to test his blood sugar, having to do it by torch light, to find him sleeping fine but shockingly at 2.6. Far, far too low. Full hypo. Freakishly low considering his high only a couple of hours earlier. We then had to wake him and make him drink juice and have one of his purees to bring his levels up again. All by torch light.
My intuition had told me not to sleep but to check him again. My intuition that I have learned to tune into more and more over the past year. If I had just gone to bed he might have been in a coma by the morning. He might have died.
The two days since this have been exhausting. How could I have got it so wrong? Everything else fades into the background. Work? Phone messages? Politics? The environment? World peace? None of it exists for me during such days.
And I still hate the injustice of it. I did it all right. I breast fed. I cooked good food. No sugar. No juice, just water. Healthy, wholefood Mama. It was no talisman against anything. But in my positive days I know I did right by him then and continue to do so now.
I struggle to explain the weight of this in my life to my friends and family. How can such a complicated thing be summarised in a sentence when some kind soul asks "How's Frank?".
Parenting is hard. Parenting a diabetic child is on a whole other scale. But this much I know for sure:
Trust your gut.
As a parent just listen to the voice inside.
No one knows your child like you do.
Trust your gut.
Allow yourself to parent with conviction.
You owe yourself this much.
Your child needs this from you.
Trust your gut.
Julie, there's a lump in my throat: how I feel for you. It is so hard. So hard at the best of times, and yes - you did, you do, everything right and yet you get this dreadful burden hammered onto you. Bless you for sharing it. The world needs to know because ... really, "There doesn't look as if there's anything wrong with him." Nobody knows, but you mustn't try to take all the weight on yourself.ReplyDelete