The longest night

7 Oct

Sssshhhhh can you hear it? Thats Toby’s heart beating. Its a good strong heart, its full of fun, its loving, caring and giving, its 21 years old. Toby’s not though, he died when he was just 16.

We were enjoying our first day on holiday in Cornwall, a beautiful place called Cadgewith Cove. Toby slipped whilst climbing on rocks, from what we have been told he would have have known nothing. He broke nothing which I still find unbelievable but the blow to his head was catastrophic. However, thanks to the quick thinking of three very dear people Toby was kept going long enough for the air sea rescue to get him to hospital and CT scans to establish brain death. Those first few hours are now a blur and I think I am probably glad they are. We were  prepared for the worse by the first consultant we saw who told us that it looked grim, when Toby went up to ICU were were told that he Toby was brain dead from the impact of the fall. It really matters that the consultant telling us cried as she did so. It left no doubt and gave us complete trust, we knew that they cared ad would have saved Toby is they could.

A couple of years ago Toby’s grandma died, her death prompted us to have discussions about what we would want when we died, of course I thought it was me telling Toby my wishes, I am glad I did not know then just how important that conversation was to be. I remember saying to the hospital staff, you are going to ask about organ donation aren’t you, the answer is yes. I remember how taken aback they were at how easy the decision was. But you see I remembered that conversation with Toby, we were sat in the kitchen and he said very clearly he would want his organs donated. This was therefore his final wish and the last one we could grant.

Toby was declared dead at 6.55pm, The transplant team did not come for his organs until 10am the following morning. That was my longest night. Do you know how rhythmical a life support machine is? All through that night I listened to it, I stroked Toby’s hands and face, I kissed him, I told him how much I loved him. We make painted hand prints, red for Liverpool.It was the hardest night ever, I never wanted it to end but I also needed it to end. I could actually feel my heart gradually breaking.We had to answer loads of questions, all so important in ensuring the best match, there were decisions we had to make that I never thought I would have to. The moral dilemmas you face, all with lots of support and all considering us as well as the potential recipients. Staff worked around us with such respect, keeping Toby’s body safe until the transplant team could get there. They gave us such support, it made us strong enough to get through that night and make Toby’s wishes come true.

Leaving Toby was the worst thing I have ever done in my life, I knew that I would never see him again warm and soft and kissable.

We had such a long drive home, but gosh did we smile when the transplant ambulance drove past us blues and twos going strong. That was my boy going to save the lives of others #tobysgift

Just before Toby’s funeral we had a letter to tell us the difference Toby had made, he had given his heart, his liver, both kidneys and his pancreas. Four families lives were turned around by Toby, they were given back life.

Two months on I still hear it you know, Toby’s heart, it has a soft gentle rhythm. Its a good heart, its strong and kind. I hope it gives a long and happy life to the recipient.

When your child dies so does a big part of you, if Toby had needed a transplant, I would have wanted some other parent or family to make the same decisions that we did. #organdonation #havethediscussion we did and it has given us some comfort and made us very proud.

 

 

July

17 Jul

The seasons are a body clock, through them your body ebbs and flows. For most the summer is about warm (well ish!) evenings and holidays in the sun. It’s about long days with windows opened wide. It’s about flowers coming into bloom and grass needing cutting it’s about being able to get out and about, do more, see more.

Not for me.

For me July is like a big huge juggernaut careering towards me. It is completely unstoppable and I hate it. Summer now has such sad memories associated with it, as do holidays. It starts somewhere deep down in the pit of my stomach, usually around the middle of June. I’m left with a continuous dull pain. The crescendo builds and builds. Memories return, not just of what happened to Toby but of the feelings that came with it. It is emotionally paralysing and at times debilitating. Just getting up some days is like swimming through mud.

I know some people think I should remember the lovely times that we had over the near 17 years but that is very hard. Memories are a very mixed blessing. They are a very treasured possession but also a heart stabbing curse. There is nothing worse than knowing you can never create new ones, all you can do is recreate past ones in your mind. 

I wish I could put the year on fast forward or pause it, about March time I think. Nothing happens then, it is a kind month  

Toby ready for his prom Summer 2011. Toby dressed as I last saw him. Always dressed to impress…. 

Celebrations 

20 May

Well there you go again, another night out more tears more guilt.

It’s soooooo hard you know, we go out to help celebrate but all we do is remind ourselves and others, it’s just not ok, none of it is ok, we can not take all our children, we can not take grandchildren, we take nothing but a reminder of what no one wants. It is sooooooo hard……. 

But we do have lovely friends, they know, they understand, we went and that is enough. it is just too hard.

To want and to never hold, it is the end of everything, it is nothing, it is the abyss.

To those who think it’s a journey, a place you get to, it’s not, it’s just a matter of keeping going.

We have some lovely friends, and to them, thank you, you make it ok 

5 May

Last night as I was going off to sleep I heard Toby’s voice. It was as clear as if he was in the room. as soon as I heard it though it was gone, I could not even remember what he had said. I then spent a very sleepless night trying to remember his voice, hear something he once said. It is just another layer of loss, something impossible to recapture but compelling to attempt. It breaks my heart.

This morning I took Stephen to school, the sound of Toby’s voice still drawing me and then up in the sky above the M61 a big huge ‘t’ appeared 

at moments like that I can’t help but think some one is looking down on me. Bitter sweet tears.

I’ve had a number of conversations about belief and faith over the past few weeks. Every time I think I have it sorted in my head something happens which creates turmoil and makes me question everything. I guess whatever truth is your truth it just takes a leap of faith….. 

in my dreams ….

1 Apr

So I’m 50 and yes I’ve reached that age where I’m inclined to evaluate my life…….

I was going all the way, I had a well planned out career. It was only in my 40’s that I finally left education, I decided that 3 degrees really was enough. There comes a time when you finally realise that you are reaching for something you can not find. So I stopped.

Children, ah children. I nearly had no children, When we decided to have children it was after much thought. Toby was just meant to be. He met all my maternal needs and I never wanted another baby, and I mean never, even after he went, he still met every need.

  

Adoption is a whole other ball game, in fact it’s a marathon. It’s a total life changer. It teaches you more about yourself than life ever can. It takes you to the edge, the edge of forever and you never come back.

  
And then came death, the biggest life changer of all. In my dreams I had a plan …..

I look back….

A career gone , but not lost, who’d of ever thought I’d exchange career and money for happiness in a wool shop.

My children, my dearest children, mine I gave birth to who met every need, who gave his life to keep safe the one I chose. The one I chose oblivious to most of life, oblivious to what has been lost, what has been given up.

Some times I wander, how could all this chaos result in this. Life, love, death.

How can dreams be dreamt and never be meant.

In my dreams I had a plan, none of this was part of it.

Dreams, I don’t have dreams now, since the day Toby died. I stopped, in every sense of the word. I don’t have plans. I just have now.

And that is enough…..

  

Serenity

21 Nov

  
It took extremes of emotion to start me writing. It acted as a safety valve, as the emotion built up in my system the words formed in my head and spilt out on to the page. One day however the valve blew and the writing helped me no more. That was the time I decided I needed help and that’s what I got, I battoned down the hatches, reduced my world to create as little stress as possible and set about healing. There comes a point where you just need to give your brain a rest and that’s what I did, with a mix of medication and knitting I got my head around my new world. Without the emotional extremes and with the ability to rest my thought processes with concentration on knitting I was able to regain my sense of self .

Over the last few months I have reached that point in life of acceptance.

Serenity to accept the things I can not change – my lovely Stephen, 

  
He may be a challenge every waking moment but he is the shiniest light in my life.

My bueatiful Toby,   

gone but always with me in every breath.

Courage to change the things I can –  after a few false starts no more medication and my lovely little job, poles apart from the high flying career but gives me far more pleasure! 

Wisdom – still working on that! 

The other day a friend was talking about how depression is rarely mentioned and they are right. The same is true of child breavement. For people with children it is their worst fear. Here are my thoughts.

Talking about loss is to understate it. I did not loose Toby, even now I know exactly where he is. He died and that is the reality, softer words can not make it better.

Apparently bereavement is a journey, well it is not. A journey implies a beginning middle and end. That just is not the case. Grieving for you child is a life times commitment. I do not want to be cured, I do not want to move on, I just want to see Toby and be with him. This is not a lack of acceptance just the reality of living without your child. To imply that there is in some way something wrong with this and to want to change this is to deny me my reality.

Talking about Toby may make you feel uncomfortable but it does not make me feel this. There is nothing I like more than talking about him and keeping him alive in my mind. What makes me uncomfortable is people’s reaction to me bring him up in the conversation. They range from avoidance to panic to a patronising ‘isn’t it a shame look’. some people find it easy, and is them I seek out. It really isn’t hard you know

This morning Stephen asked me what I’d do if Toby came back as a ghost. I said I’d give him a big hug and ask what took him so long, Stephen burst out laughing ‘mum don’t you know you can’t hug ghosts, your hands go right through’. So you see now we can laugh about Toby and it makes it so much easier. He is not a forbidden subject or one to be avoided but one to enjoy! 

Holidays

1 Nov

Well I’ve been busy busy busy. We had a lovely if somewhat knackering week in Majorca. Holidays with Stephen are very hard work but we had some good lunches out which I always like! It is 18 months since we last went and we could really see some changes in Stephen which makes me very happy! He has really good on the journey and cope really well with all the hanging around that accompanies travelling. his high point was getting searched at the airport, he thinks he is a proper gangster now !
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As you see, this year I actually managed to get some crocheting in! I am calling it my Majorca scarf, I’m not quite finished yet but it’s getting there.

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I am not allowing myself to finish it until a certain aran is completed! It is a lace weight yarn which is quite fiddly to work with but very pretty and light.

I have found another hobby to add to my repertoire, 3D felting. I can not believe how simple it is but how dramatic the effect, I think I am going to become addicted again!

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Graham has bought me a great selection of raw materials so who knows who or what I’ll make next, maybe a miniature version of my new BFFL Frankie!

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He is a 10 month old Yorkshire terrier and comes ready trained, he is an absolute sweetheart and I can not believe how lucky I am. As mum said, he’s the first ‘normal’ dog I’ve had! let’s hope he stays that way!