Sebastian asks how long I’ll live for. Here is what I told him, and Valentina, recently. I am sharing this, because I would like you to understand what goes on in a family dealing with MND.
Daddy has Motor Neurone Disease, as you know. I am going to tell you about the disease first. It stops the muscles in my body from working. First, most people lose use of legs, arms and hands, then the voice goes, followed by swallowing. I’ve lost all this, as you know. Lastly, people lose the ability to breathe and this is when they die.
There is no cure. I will never get better. There will be no miracle, even if we want one. Most people live two to three years, and I’m already beating that. The care home has people who are at different stages of their illness. A few have died while I have lived here. You can’t catch the diseases people have here, and many people are just old. Many people with my disease still live at home. I don’t because we couldn’t rebuild the inside of the house and because I am well looked after in the care home.
So, what can I do? We know that I can live as long as possible if I do the right things. Sleeping well, getting enough food and water, keeping at the right temperature, being well looked after. I have the breathing machine twice a day, to push air into my lungs and give my breathing muscles a rest. I can’t take deep breaths, but my normal breathing is still ok. I am determined to do whatever it takes to stay alive as long as possible. The staff here help Daddy all the time.
I love you, Valentina and mummy, and I love life too much to let it go.
The people who are really brave are you, Valentina and mummy. You carry on, but know that your dad has a serious illness. The kids you know are not in the same situation. So, when you answer questions at school, tee off or ride your bike on a trail, then you are being brave. More brave than you can imagine.
He interjected once to say ‘There might be (a miracle)’. I said no. Well, I suppose it is right that there might be a miracle, because miracles are miraculous.
He asked if I will live one more year, and I said it’s quite likely. ‘Five years?’ Very unlikely but maybe. ‘Ten years?’ No. Each time, his expression longs for a positive answer.