Part 4 - How Do I Tell Henry?

Henry with his younger siblings,
Edward and Saskia

At this point, Henry did not know that he had been diagnosed with Friedreich’s Ataxia. Wondering whether to tell him became a daily struggle for me. On one hand I felt it was his life and he deserved to know but on the other hand I wanted to try and protect him from the truth and everything else that came with knowing. All the professionals, in particular the Community Nurse, told me I had to be honest with Henry and kept pushing me to tell him. I kept looking at him, through the eyes of a mother, and thinking, when I sit you down and tell you this news, your life as you know it is going to end and with it, all your hopes and dreams. They are going to fade away and die, just like mine did. He was ten years old. I felt like someone had put a loaded gun in my hand and told me to shoot my son, dead.

Henry started reading at a very young age

Eventually, I felt pushed into letting Henry know the truth. The Community Nurse thought it would be best if the Nursing Team sat down with Henry and told him. They were trained to deal with these situations and would be able to guide Henry through the process. They told me children are very perceptive and deal with situations like this the way they would dip their toes into water; slowly and cautiously. Only asking the questions and looking for the answers that they can process and deal with.
I wasn’t the least bit surprised when they told me that Henry had looked at them straight in the eye, and said, is it going to kill me? Henry is one of the most intelligent, astute, straightforward, logical people I know. There was no doubt in my mind that he would have gone straight to the point, straight for the kill! They were shocked, I wasn’t!

Meeting Santa Claus
(A family friend called Dick!)

Now Henry knew and the truth was out. I was no longer living a double life. I was now living with it staring me straight in the face every day. I wanted to keep Henry’s spirits up and encourage him to be optimistic about the future. I wanted him to look forward to all his achievements in life, his next party, his next trip to the cinema, his next holiday, his next bike ride, his next merit, his next trip to the park. I didn’t want him lose hope and give up. I wanted him to get up every day and enjoy life. I wanted him to go to school, learn, socialise, take exams, laugh and be a part of life. So, I told him, I would do the worrying and he would do the living. And that’s what happened. I would find myself repeating this mantra many times over the years.