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  We went to all his birthday parties and Patsy really used to go to town with special birthday cakes baked in the shape of whatever was fashionable at the time.

  But I would always notice at the parties that all the other kids are playing rough, they are kicking balls and running around and things but Craig really couldn’t do that. His brain was completely fine, he was a highly intelligent child, but he just didn’t have the coordination.

  I would always take him to the school bus just a few streets away from the house. Patsy was teaching and I took him up. This was for preschool. I remember sometimes he used to come back and tell me he had these terrible headaches.

  One day Craig and Patsy came to visit my husband and me here in Humansdorp. He would say, “Shhh, you two are making too much noise. My head is very sore.”

  And then Patsy and I would wink at each other. We used to think it was just for attention. Then I’d take him to the room to lie down a bit. Then he lies for quite a while. Then he comes again and says his head is so sore.

  We didn’t realise that it could be something. It was a brain tumour causing this dreadful pain.

  Then one day they discovered he was crying in class. He had this terrible headache. They sent for Patsy. She and Neville took him straight to the doctor.

  There was no time whatsoever to waste. The doctor said they had to get on the plane that evening with the child and get to Cape Town to the Red Cross Hospital.

  They were there for a long time. I flew up for the day before they did the operation. We were all just praying.

  And then the day they came back they stopped in here at my house. And I watched as this little cocoon got out of the car. I can only describe him as a cocoon because he was so bandaged up to the top.

  He was the first to get out of the car and he said, “Nana, I never want to go back to that terrible place.” And I said to him, “You won’t have to, it’s all over now.”

  He got so many toys then. I got all these toys, some of them on appro, for him to choose. And then he went home, but things didn’t go well for Patsy. She was very fragile.

  My husband and I would go there for weekends. I had a wonderful husband but a husband who could not find the bread tin in the house. He didn’t want to stay over in PE and wanted to come home so I had this tug of war.

  I told him that I wasn’t going to leave Craig now and that Neville had to go to work and that Patsy was battling very badly. She went into a very deep depression. “I need to keep things going for them,” I said. She just went to her bedroom and stayed there.

  I can remember a minister who I knew from Humansdorp came to see her. She was upstairs in her room and she used to trust me with everything. She used to tell me, “Mom, I don’t want people up here, only you.”

  I had to deal with her medication. I made a chart. She had to take 15 tablets in the morning and mark this all off and be responsible and make sure it was all correct.

  And while the minister was present, I was sitting on the one side of the bed and she was lying in it. He looked at her and she looked at him. And then he asked her, “So, how are you? Are you the hell in with God?”

  And she just looked at him.

  And he told her she had every right to be the hell in with God and that she should give Him a good telling-off. He said she could use any language she liked with Him, tell Him He was unfair and just let it all run out. That was such an eye-opener to me. I used to do some counselling and later I used the same method.

  And then he got onto talking to her and said, “But now you tell God you are sorry for what you said but will God please explain to you why you needed to have a child that was so sick.”

  And then he spoke nicely to her and told her to calm down and then he would leave. The next time he would come with something else and I thought that was so good to let her get rid of that anger. A lot of what we were doing was trial and error. I also didn’t always know how to handle the situation.

  Sometimes we would have this perfect weather and I would go up to the room and Patsy would be in the double bed. I would take her morning tea and her medication up to her. The curtains would be drawn and it would be pitch dark.

  I’d pull open the curtains trying to get it open and light. That was when Craig and Neville were in London while he was there for his kidney ops.

  I would go in and I would say, “I have brought you your juice.” I would know what kind of a night she had had as I am up a hundred times in the night to use the loo and I heard her walking in the passage.

  Then one night she stood in front of my door and she said, “Mom, I see lights out there.”

  And I got up and went to look and you know, I saw that light. And we never saw that light again. To this day I believe it was God’s light and that he showed us “Don’t worry, Craig will get through this op okay.” It was God’s light because when we looked again, that light was gone. And there was no place where this light could have come from.

  Every day I would try. I would go into the room and open the curtains and say, “It’s a beautiful day out, come stand here at the window with me.” Later I learned after talking to the psychologist that I must not do that. That I should not fight with her and try to make it light. Because she was all dark. She was pitch dark inside and it made it worse for her because why must I see the light and she can’t?

  After that I didn’t do that any more. I waited until she was in the bath, more tactfully, just gradually opened the curtains a little bit. Because when I came in again she was back in bed, blanket over the head, sheet over the head.

  And I thought of Neville at the other end and what hell he was going through. He had to look after Craig. He cooked for him, did his own laundry, and had to be with him in the shower.

  But thank God we had my husband’s brother overseas and his grown-up children and they used to go and relieve him and one of them or two of them would take Neville off to a restaurant. Go and let him eat and just breathe a bit while the other would sit with Craig.

  I wrote these stories for Neville to read to Craig every day. Neville said he was not good at telling stories so I wrote them.

  And you know how I wrote them?

  Under the blankets with a torch because my husband and I were in the same room, in two single beds, and he used to moan if I had the light on. So that is how I wrote all those stories.

  We didn’t go over to London. My duties were with Patsy. But my husband couldn’t handle it; he just wanted to go home. He couldn’t even make food. But I told him, “You have to stay with me. I need you here.” Eventually he stayed.

  Then Neville came home with Craig and I remember us going to the airport to meet him. Neville’s bosses sent the most wonderful things. There was this massive teddy bear waiting. And there were Neville and Craig lugging these things along.

  Patsy was very excited about their return and before they arrived she said that we had to prepare a feast. But it was not a good thing we had done because Craig was on a diet. But we didn’t know.

  He was never a good eater. We always battled to get him to eat. I spent my life telling stories to get him to eat – “down came the bird” or “open the garage”. He wasn’t a robust child, not a fat little boy.

  But we were so looking forward to having him home. He had these huge, terrible scars all over his body. Down the front a big cut and all around the side to the kidney. Oh Lord, what that child went through. And he just took it in his stride.

  But Patsy couldn’t take it. She didn’t want to see those scars. It was agony for her. I could see it when she saw him undress. And she couldn’t touch him. And the psychiatrist said to me that Patsy must bath him and not me.

  But she couldn’t. It just got worse and worse. She eventually wasn’t eating at all. She would not come down from the room. Craig used to ask where his mom was and I would say that she is sleeping. He would go up to the room to see her and she would try to play and do little things with him but she would soon be exhausted.

/>   I was hurting so much. I couldn’t force her to do those things when I knew how it must feel for her. So then the psychiatrist and Neville and Patsy spoke openly and they all agreed that she needed to be admitted. There was no facility in PE, so she went to Cape Town.

  Now Neville is alone with the child and I am here in Humansdorp with my husband. There was no real decision to make; we had to go and stay with the two of them.

  And he asks, “Where is Mommy?”

  We had to say, “Mommy is sick and Mommy is going to get better and she will come home soon.” Fortunately a child doesn’t realise how long it is. And we stayed, my husband and I. And every few days he’d say he wants to go home.

  I felt so sorry for Patsy and for Neville. Patsy had become part of me. She has never been a daughter-in-law to me. She is so good to me and I adore her. I tell you that time was hard but it made me strong. God made me strong and I could pick up again.

  So, here we had this little mite in the house. And then while Patsy was away at the hospital, family from my husband’s side came out to visit us and I thought, This is now not a good time to have people, but it turned out fine.

  It was his brother Mervin and wife Mary and her sister and husband. Neville and Patsy lived in a big house. They both like space.

  So, we had these visitors in the house. And for me it was hard. We stayed for a long time and Patsy would ring in between and say she wanted to come home.

  I told her to hang on just a bit longer. I used the excuse that there were people in the house and that it was full, but I knew she had to stay for longer.

  Neville and Craig went to visit her in Cape Town once for a weekend. I made a little bed in the back of the car for Craig and off they went. I think Neville also went on his own on a few occasions.

  Craig used to keep me very busy. We would make those little calendars, like the ones you use for Christmas, where you would open each day and there would be little presents. We were counting down the days to the time his mom would come home. Every morning he would be so excited to open it and sometimes he would get a chocolate and sometimes a coin.

  But in the meantime things had to get back to normal. Neville would go to work in the day and Sarah and I would be with Craig. I think we ended up staying a large part of the year.

  Craig had to go back to school. At the time skateboarding was a big thing. And all the boys had skateboards and they asked him if he had one. Now part of his head had no bone in it. And it was treacherous for him. What if he falls?

  Then Neville said we can’t wrap him in cotton wool, what are we going to do? We got him a skateboard and a helmet and all these things and we took him to this place where all the boys were skateboarding. But his balance and coordination were poor and he never managed to skate. He’d watch with envy, I think.

  Craig had this bed in his bedroom with this drawer that you could push in underneath.

  It was a big, long drawer. In the end it became for me the place where all the hopes Craig cherished were hidden. Things like the tennis racquet and takkies he got when he wanted to play tennis. Craig had very bad coordination and he’d go for one or two lessons until the coach would tell Neville that he can’t do it.

  And Craig begins to feel inadequate and so into the drawer the racquet goes.

  Then the rugby ball and the sports clothes. All of these things he tried to master. Craig desperately wanted to succeed and he never gave up. That drawer just filled up with all of these useless things.

  And then the golf thing started. He was very good at that and it was such a good thing for him and for us. Neville and Craig could play golf together and this gave them time to bond.

  Craig was an incredibly generous child. You know, when he was little, I would pack his lunch boxes for school and he had to have a fruit and a couple of biscuits, one sweet and his sarmie. And then he would always take an extra sweet for another child. He was always, always concerned about anyone who was left out or the poor and the have-nots. Anybody who came to the door had to be given something.

  And one day this old man came twice and I just felt he had been given what he wanted and why is he back and Craig says, “But he could be Jesus. You must not send him away. You must give to him.”

  Where does that come from?

  His mother was a Catholic and she has always been religious. Neville is the best child, cleanest living man, the kindest man, the giving-away man, but he jokingly says boarding school killed religion for him. He does not want to go to church. He goes on special occasions and I just leave it alone.

  When Craig was 18 he said he wanted to learn to drive. He wants a car. It was his great delight and he was very proud. I was very proud of him.

  And he would call and say, “Nana, I want to drive you somewhere.”

  He was the most precious child.

  5

  Who Am I?

  Craig kept his neatly handwritten thoughts in a large, blue, lever-arched file. He began writing at an early age and kept it up for many years. He did not share his writing with anyone and destroyed all of it before starting a new diary in 2003 when he was 23.

  Craig titled his diary, Life with NF and Everything Else and inscribed on the opening page: “Craig was born in 1980 and lives in Port Elizabeth, South Africa.”

  Like most young people, Craig loved music and had a vast collection on his iPod. The song “Volcano” was one of them.

  Below is a collection of some of his thoughts.

  ON BEING NORMAL

  Is to be normal to be happy? NF1 makes you consider this. In my short life of nearly 23 years, from what I can make out, it is not reasonably so! But I will always wonder what I would feel like had I not been born with NF.

  Things that are taken for granted by many people come with such great effort for me. The emotion becomes overwhelming when I think of how I will ever lead the life I wish to attain and the things I wish to acquire and achieve. Then again, everybody in life has issues or circumstances holding them back. But still, I wonder what “normal” would feel like.

  I am not afraid to die. Only afraid of how I die. I don’t want to be murdered or shot. That must be terrible. With NF though you never know when it will pull the trigger, just living in faith, wishing, dreaming to live a normal life.

  The dictionary says, “Normal” is “typical, regular”. I wonder if I could lead a regular life? Don’t really think so. This NF1 affects your thoughts and these affect your attitude, outlook, confidence and belief in yourself.

  It makes me sad to think back on some of the events of my childhood. It is said that these early years are the best of your life. You can be carefree. You can be a child in your mannerisms, actions and way of thinking. I think, or maybe rather, I know that NF robbed me of those years. NF made me unusually serious for my age, different, certainly no fun for the other children to be around.

  On Golf

  I am very thankful to the game of golf. When it comes to golf I am not average, I am above average. On the golf course, 80 per cent of the time I feel that at least one aspect of my life is not lacking.

  On Work

  Work. Work is a concern to me. How does a person with certain barriers survive in the workplace? I don’t want to climb the ladder or wish to acquire great wealth. I just want to be fairly happy and be competent in my work.

  To relax is not easy. Mental relaxation is difficult with all of these bad and uncomfortable worries in your head.

  I think even if you look normal to the eye (I am lucky, NF1 can be very visible) people can tell that you are different. Or then again, maybe it’s just the person that I am.

  On Relationships

  Is it possible to really have meaningful relationships? When you look at the world and all the hatred, violence and murder, lies and cheating and corruption, maybe it’s best to lead a quieter life out of the eyes of the world.

  Children can be so loving, caring and accepting but these same children can also be horribly cruel and savage. They can break
you with just one look, word or comment.

  On Freedom

  Freedom is not necessarily a thing that is given to you, as a parent gives freedom to his or her child, but I believe freedom is a feeling that you feel. There is nothing better for a young child to have the freedom to dream about what he will achieve and experience in his later years. The freedom to know that he will be okay.

  When a child is in his bed at night in a dark room, he may become afraid of monsters. Monsters are mean, too big to handle and make bedtime a misery. I suppose in a way NF was my childhood monster.

  Life ticks by. Every second is a gift given by God, a second that might not necessarily have been, had He not still wanted you on his earth.

  Why does God want me on this earth? What is His purpose for my life? Can I make a difference to this world? I believe God has put me here for a reason. I just haven’t found it yet.

  On the State of the World

  Why is there so much pain in the world? People have no respect for their fellow humans. Sickness, disability, disappointment. I suppose I am lucky.

  To find something that you love and can really do well. I just want to feel relatively in control. Will it be possible to find a job where I have that feeling?

  On Religion

  Religion means all sorts of things to different people. It gives them hope, something to live for and knowing there is a greater force that is in control of their lives. To me I suppose it is about knowing somebody accepts me as I am and loves me the way no person could.

  People are never satisfied with what they have. They always want more. More money, fame, material things, a better life. I’m left wanting. I must fight that feeling. I have so much to be grateful for.

  As a Christian, one of my beliefs is a life after death. When I was around 12, I didn’t want to die and go to heaven. There was still so much ahead of me. So much I wanted to see, do, feel and experience. But now, at times, I think it would be nice to go to be with the Lord now. Maybe there I will feel fulfilled, feel total peace.