With Craig I saw his suffering and he told me at the end he was tired of going in and out of hospital. He told me he did not want to live and I said, “Craig, what do you mean?”
And he told me he would take his life. He told me. He didn’t want to talk to anyone in the beginning. He didn’t want to tell his granny.
But I said to myself I understand, it is because it is too much pain. We can’t feel the pain but he can. In the last days he was getting thinner and thinner, eating only soup, and he was always buying chocolate for me. He said, “Here is chocolate because one day I will not be here.”
I was on holiday when he did it. They phoned me and told me Craig had died. It was too difficult for me to come up for the funeral.
I did not get a chance to say goodbye but I see him here, every day in the photographs. I miss him very much. He used to talk to me and tease me every day.
I can see his mother is very, very sad and she misses him. His father too. We are all suffering but I do believe he is watching us.
They showed me the little box of ashes before they scattered him. I believe he is at peace now.
I believe it, I accept it. It is from God. What can I do?
17Surviving Craig
“It is a platitude that we live our whole lives in the shadow of death; it is also true that we die in the shadow of our whole lives.”
– Ronald Dworkin
Three years after Craig’s death, Patsy and Neville are still coming to terms with his life and how it ended.
Patsy carries in her purse a photograph of Craig as an adult that was taken during one of his many hospitalisations towards the end of his life. In the photograph Craig appears to be asleep with a feeding tube inserted into one of his nostrils. His expression betrays his pain and discomfort. Whenever his loss becomes too great or overwhelming, Patsy says she looks at the photograph to remind herself of her son’s suffering and the release that death brought.
Neville’s favourite photograph is one taken when Craig was about four or five, before his major surgeries in London. It shows a fresh-faced, happy toddler with a carefree expression unmarked by pain or disappointment. It is a portrait, says Neville, that reminds him of the period in his son’s life when he was unburdened by NF and the subsequent pain and numerous challenges he would face.
Patsy
I lost my mom in 1974 and my dad in 1996. I was close to both and grieved for them. I was extremely sad and missed them terribly but nothing could prepare me for dealing with the loss of Craig on 1 September 2009.
Although we had known that he wanted to end his life and we had received most useful grief therapy during that time, coping with Craig’s actual death was a shattering experience. It is something only a parent who has lost a child can understand.
I live daily with the pain and loss. Sometimes it feels as if a part of me has been amputated but I can still feel an ache in the missing limb. I have tried to find ways of coping; joining a group of mothers who have lost their children and consoling myself with the notion that this is what Craig wanted and that he is at peace.
But it has not been easy and I have often turned to this poem to find comfort and solace.
When I am gone, release me, let me go,
I have so many things to see and do
You mustn’t tie yourself down with tears,
Be thankful for our beautiful years.
I gave you my love, you can only guess
How much you gave to me in happiness.
I thank you for the love you each have shown
But now it is time I travelled alone.
So grieve for a while for me, if grieve you must,
Then let your grief be comforted in trust.
It is only for a time that we must part,
So, cherish the memories
locked within your heart.
I won’t be far away for life does go on,
So if you need me, call and I will come.
Though you can’t see or touch, I’ll be near
And if you listen with your heart, you’ll hear
All my love around soft and clear
And then when you
Must come this way alone
I’ll be waiting to greet you with a smile
and say “Welcome Home”.
(Source: Unknown)
Our loss has taught me a number of lessons that I would like (for those who might need it) to share. I hope that in some way my experiences and what I have learned might help others who might be depressed, despairing, grieving or dealing with loss.
If you are a parent, be thankful for the gift of a child, even more so if your child is healthy. I also believe that you can never love a child too much and that you should never be afraid to allow your child to experience the love that comes from within your deepest being.
I have learned to appreciate each new day as there will come a time when we must all take a detour along a painful path that will take us, remove us from everyday life and into the valley of desolation.
The choices we make in our lives are what ultimately define us. For me it has been important to understand that with each choice there are consequences.
When it comes to illness and disease, I have learned that the best way to empower yourself is to find out everything you can about it. This way you will be prepared and know what the future may or may not hold.
Craig was a unique individual
