Back to Parent' Voices Phil Jacobs

Sugar and Spice and All Things Nice
That's What Little Girls are Made Of

Not enough blood... Not enough blood... Not enough blood...

The glucometer is a small device that looks like a communicator from star trek. We need it to read my daughter, Kitty's blood sugar level. I am surprised that the meter has lasted this long. The device has many a time been thrown across the room in frustration. Beam me up Scotty.

The worst time is in the morning when you are trying to get everyone to school. First the blood test. Is she high is she low? Then the insulin injection chasing a five year-old around with a needle in my hand trying to be as patient as possible but looking desperately at the clock and time ticking away. Injection, then twenty minutes until breakfast. Diabetes is a hidden disability everything is going on behind the scenes. We provide the insulin and the food to balance with it. With a toddler it can be very difficult to keep a stable blood sugar reading. When she is low she could have a hypo and this is when the body collapses due to too much insulin or not enough food. Also high sugar levels will make her feel nauseous. There is nothing Kitty cannot do; she just needs to be more aware than other children are.

Two years ago my hand shook and trembled when I had to give my daughter her first injection. She was two-and-a-half years old. How could I do this every day? She seemed so tiny. It just seemed impossible. Now it is very matter of fact. An irritation to her, but not that painful. The daily injection reminds me of her dependency on insulin.

Diabetes is an autoimmune disease. The body's immune system attacks itself and knocks out the insulin producing cells of the body. It has a very strong genetic line in my family. My brother is diabetic and so was my aunt. It seems to appear somewhere in each generation. Without insulin the blood sugar level rises and rises. This then becomes very dangerous. Luckily we can inject insulin, which keeps the blood sugar level low. Sometimes it brings the blood sugar level too low. Causing a Hypo. It is important to have regular meals, which are high in fibre and regular exercise.

Our family lives off porridge, very sustaining and high in fibre. Put me in a kilt and I'll soon be looking like the man on the box. It is very high in fibre and carbohydrate and sustains kitty through the morning. The schedule of blood tests is important and regular meals also. The difficult part being that Kitty, who is only four, doesn't understand the importance of her diet and why we eat porridge everyday. Soon she is going to find out about Cocoa Pops from a friend. Then we have had it. She was diagnosed at two and from then, her life changed dramatically. From then on it was a careful diet and two insulin injections a day with regular blood tests. It was such a dramatic thing to happen. One minute everything was fine and then bang, big change. But life's punches are often hard hitting. Why my child I thought? It felt cruel at the time. I felt it should have been me and not her. I desperately wanted to take it from her. As a parent I wanted to protect her but there was nothing I could do. The injustice of disability and the way it just turned up, an uninvited guest. And the shame of having a child who was different. There were a lot of mixed emotions and I grieved the loss of my healthy little girl. From this point forward she had a disability and it would be for life or until a cure is found. I had just started a new job as a teacher. The workload and the camping out at Treliske hospital took its toll on me. Something was going to give so I decided it would be my job and not me. I knew deep down that my priority was with my family.

I was reading of children in India who due to the costs of insulin and testing of the blood let their children die. Especially their girl children. The diabetes makes their children worthless. Kitty asked me if she was going to die. I told her that we have the medicine to look after her. Often she will cry and say that she hates her diabetes and wants it to go away but it won't. I have often wished it would, acceptance is hard at times. A cure is talked about, but it seems to always being talked about. It's a long way off although not necessarily impossible.

As a parent of a young child it is hard enough to let go of that child and let her make her mistakes. I have found it harder with a diabetic child. Especially going to full time school for the first time. Will she have a Hypo before lunch? I can easily get obsessed with the blood sugar results. How could I get them better? I often then do not see the child. I am learning as a parent to see the child first and the disability as separate. Often the first thing that people want to know about Kitty is her diabetes. It can often get in the way. It is Kitty that is important the diabetes is an element of her life, but not the entire focus. In a way I want people to acknowledge it and then accept it. Kitty is five now and at full time school now and doing fine. The School is very helpful and we often go in to do a blood test to see if everything is ok. There will be difficulties along the way but as long as we all take one step at a time. Each problem can be worked out.

Another issue, which is a difficult one, is how other siblings are affected in a family. Kitty has a younger brother and I am aware of how difficult it is to balance the attention given to both children. The British Diabetic Association is just beginning to address this issue, by researching families and the effects on the non-diabetic brother or sister. It is so easy to neglect this area, as much of our energy is focused on care for the child with diabetes. It is interesting to note that Kitty's brother often wants an injection or a blood test. Maybe he thinks that he is the different one, the child who does not need injections? As a family we have all had to change. Not only in what we eat, but how we think. I can begin to empathize with other parents who have disabled children or children with special needs.

I think that having a diabetic child has highlighted to me the massive marketing to children of junk sugared food, which has no dietary quality at all but is heavily pushed on children. Christmas, Easter, Birthdays. Maybe we have lost something spiritual in all this sugar coating, and junk food. Having a child who has a disability also has shown me how powerless I am to control my life and my children's. Life doesn't always go the way I want it. I wanted perfection but have learnt to see beauty in imperfection.

Phil Jacobs
Cornwall, UK

Published April 22, 2001

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