Archive | March, 2013


16 Mar

It was Thursday morning when it happened, the strangest thing ever. It was like I was stood in the darkest coldest shadow when the brightest ray of sunshine found me. It warmed me from the inside out giving me a glow, making me laugh and smile. It made me run round the house with Stephen, made me smile for no reason in the car, it changed the whole look of my face. It is so long since I felt it that it took me ages to work out what it was, it was happiness!

Happiness happiness the greatest gift that we possess….

This week I met with a friend I lost touch with some years ago. She had moved away but some how had heard about Toby and got in touch. We were pregnant together and we reminisced about our babies. It is a gift to bring back forgotten memories, they are so very precious now, and I am so glad that we did. I am starting to fall back in love with my dogs. They are such faithful things and have had to put up with so much neglect since Toby died. They have never given up on me though and kept on as if all is normal, waiting for me I suppose. They all got a cut and wash this week and I enjoyed it like I use to. It was not the chore that it has been. Last night Graham and I went out for a meal, lovely it was too, I can not remember the last time when we did that.

I am under no illusion about maintaining it but the very fact that I can still feel happy and contented just fills me with hope. Once I had accepted Toby’s death and that there was no hope of a miracle resurrection it was almost as if all hope for everything died alongside him. I could not see how it could ever come back. It filled me with a dread for the future. That dread has now gone as I can still feel that warmth I felt on Thursday morning and I am not going to let myself forget just how good it felt.

So this blog is just especially for two vey patient boys – the thing is to remember what you still have and get pleasure from that.



The darkness

8 Mar

Sometimes I think I can not hear the beat any more and it makes me really distressed, I worry that Toby’s heart has failed, I worry that I am stopping remembering things. It can not relax me if I can not hear that slow rhythmical sound that lets me know my boy is safe.

I have not wanted to write for a little while, its not that I have nothing to say, its just that it is all darkness at the moment. I feel like I am stuck in a cold, damp, dark cave on that beach. I can hear the storm outside, it is raging but I am stuck, I can not move, I do not want to move, I just want to stay in the dark however unpleasant it may be. The storm is angry with me, it is full of my feelings of sorrow, regret and failure. All those little things that I did as a parent that made me human, now come back haunt me, to make me question my worth as a parent, to show up how I failed. The times that I shouted, the times that I said no. In my head I know that all the things I did as a parent are the things that helped to make Toby the lovely boy that he was, but as we all know the head does not always rule the heart.

It is sorrow, regret and failure not just for the things that happened, but also for the things that never will. Toby never got that jet ski trip, he never got his car or learnt to drive. I see all his friends now doing the things that Toby should be doing, I love that they include me and have welcomed me into their world, I would have it no other way but with it comes some very mixed feelings. It serves to remind me of what never can be.

I want to climb to the top of the highest mountain and shout I am sorry Toby, sorry for everything but most of all sorry for letting you die. I wish I had a belief system that allowed me to think he would hear but I do not. What I do have is a strong belief in him. When I see Toby in my head he is either on that cliff smiling and waving at me, or he is in the kitchen chatting and laughing or coming into my bedroom when he has come in from work, full of the latest news and gossip. Never once do I see him as any thing other than happy and smiling. So you see in my heart of hearts I do know that Toby has forgiven me, even if there was nothing to be actually forgive for.

Holls and other 2006105

Is it a bird, is it a plane….

6 Mar

By now I hope you have seen that we hope to raise awareness of organ donation and funds for the cf trust by throwing lots of people out of an airplane, with the help of the Red Devils no less so here is who and why .

Graham – most important of all Toby’s dad! I think he is mad and there is no way I am doing it. I guarantee he will throw up never mind throw people out!

Cole – Toby’s friend who has CF. He meant a lot to Toby and he means a lot to us, not enough however to stop us chucking him out!

Lee – another of Toby’s friends, that will teach him!

Andy Burnham MP – not only is he our MP, he is the shadow minister for health, he knows about organ donation, he knows about the CF trust and he knows about Tobysgift and what we are trying to do. Over the years politicians of all varieties have driven me to distraction so I have to confess (and nothing personal Andy) it is with great relish that we chuck him out!

Chris from iliveigive. Chris was the transplant co-ordinator who supported us through that longest night with Toby, our last night and helped us make sure that Toby could give the gift of life to others. I am not sure I really want to throw him out but hey he offered so out he goes!

James – the reporter from our local paper who has single handedly restored our faith in journalists! Through the paper he has publicised Toby’s story and helped us to say publicly what a fantastic son Toby is. But when push comes to shove he is a journalist after all so he will get a big push out that door!

Ed Owen – the chief executive of the CF trust – in for a penny in for a pound – well lots of them we hope all for the CF trust – he is supporting Tobysgift in supporting the charity.

Peter Wyhinny – formally Brand Director SEAT UK, now Brand Director SEAT Italy – Graham works for SEAT UK. They have given us all so much support since Toby died, they have epitomised what a good employer should do and yes, we thank them by pushing Peter out too! SEAT UK also sponsor the Red Devils and have helped to make this jump possible.

So Kind readers this must be worth a donation? It for a good cause and we will get some great publicity for organ donation. You can give £5 by texting tobs95 to 70070 or if you are feeling really generous donate more via

Thank you!!!!