My Week

24 Sep

On Saturday I helped out at Miniatura at the NEC. Before knitting I was into all things miniature, I’m still the proud owner of three dolls houses but they have been sadly neglected over recent years. My hobby first started when Toby was about two. I went on a course run by Pat Cutforth and I was hooked. She taught me ‘why buy when you can make’ and that has lived with me since. I love wood, I love the grain and the feel, it has an endless quality which improves with age. Pat lives on a lovely farm in Wiltshire and I have been on many courses there, occasionally combining it with a holiday with Graham and Toby. Pat makes the best brownies ever and I always had to make sure I brought some back with me for Toby. Any way over the years Pat has raised huge sums for Cancer Research UK, she is a real inspiration. Twice a year she has a charity stall at the NEC, the stock all donated and with my mum we help out manning the stall. It’s a great feel good day but is hard work. Sometimes though I think some of our ‘customers’ forget we are all volunteers and raising money for a good cause! In this day and age none of us are untouched by cancer. It is a good cause and Pat does a fantastic job with it. As long as she wants to do it I will help out, even if my love of miniatures never returns.

On Monday I received a very special delivery, in fact so special it reduced me to tears. It is a teddy made out of Toby’s shirt. It was the shirt all Toby’s Topman colleagues wore to his funeral. The Teddy was made for me by Carries’s Threadbears @thread_bears on Twitter. I love to hold my teddy and smell him, although Toby’s smell is long gone I can still imagine it is there, it brings a mix of sadness and comfort at the same time, hence the tears.

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I have progressed with my brothers jumper, it now has a side as well as a back, I am beginning to have to concede that with only two weeks left the chances of me finishing before his birthday are nil!

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Tuesday was Yarn in the Barn at Black Sheep Wools. My goodness there was a lot of yarning going on this week, very little of it of the woolly variety! It is essential to choose a project to do at the group with care. It needs to be simple and easy to undo as the amount of talking makes concentrating on knitting or crocheting difficult at times! At the moment I am knitting Stephen a jumper. It is in husky by sirdar, a jumper Stephen chose the other week when we went to an open day at the barn. I love that they make Stephen as welcome there as they do me.

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It’s no good, it’s official, I’m addicted to sock yarn! Self patterning yarn is one of the best inventions ever, it amazes me every time as I watch the pattern emerge! My addiction, alongside my discovery of yarn on eBay is a fatal combination, but at least they look good!

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I have some items for sale in aide of #tobysgift. Now it is getting colder I’m sure you all need a nice warm snugly cowl. I am asking a minimum of £10 donation, all of which will go to the charity. I will pay the postage. Message me directly if there is anything you fancy .

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#tobysgift is a branch of the Cystic Fibrosis Trust

Knitting and me

18 Sep

I first started knitting when I left university and was waiting to begin my first job, over the years with work and children my pass time gradually dwindled. In 2011 I was lucky enough to be allowed a career break, to take some time out from the pressure of caring for a child who has additional needs alongside a full time career. During that time I decided to take up crochet and took some classes. Little did I know quite what a life saver that decision would turn out to be!

In 2012 when Toby died I could not concentrate on anything, a very normal reaction, but equally I found the not being able to absorb myself in anything horrendous. I became quite desperate for a release from the pressure of grieving and it is then that I turned to crochet, I’ve literally not stopped since!

My concentration is still rubbish but now it does not worry me, nobody really cares that I forget names or can’t tell what book I’m reading or the name of my yarn. I can not just sit and do nothing, it is too great a pressure, it fills me with panic, my stomach turns and I get the desire to run. I drive Graham nuts in the car but not if I crochet and joy of joys I can do that whilst on a journey.

Sometimes I knit or crochet to forget, sometimes I do it just to keep the demons at bay, to stop the darkness covering me, sometimes it just helps me order my thoughts and make sense of my world.

I was very blessed that about eight months after Toby died my local yarn shop started a knit and natter group. I found it very hard to mix with people then but I could manage the group as I did not need to participate, I could just knit or crochet but be surrounded by others. I wander if they all know how much healing has happened in that room. I now consider my fellow yarn in the barners as some of my best friends. They allow me to be me, I am not the mother of a dead child, the mother of a child with additional needs, I am just a fellow lover of yarn.

I am luck that Blacksheep Wools also holds some great workshops. Over the last few weeks I have completed a professional finishing course with Jem Weston. Jem has a lovely non threatening teaching style, I recommend her courses to you. We made two delightful little more teddy tops

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Any lover of yarn will understand that it is essential to have a few projects on the go at any one time, plus of course a few other ones in the pipe line.

My sister in law asked me to make my brother a new aran to replace his much loved 30 year old one made by our nana, apparently it is starting to show signs of age! I have finished the back and this week started on the front and mastered my first pocket!

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I am also crocheting a shawl and knitting socks, these are to take to Majorca with me next month but I just could not stop myself!

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I would like to say this is all I’m making but it would be a big wooly lie!

Until the next time ……..

Toby Thomas

19 Jul

I saw a pretty butterfly and it made me smile,
it was my lovely Toby Thomas coming say hello for a while
I love it when he does that, it gives a warming glow
I just really wish that he didn’t have to go

I look for him in rainbows,
I see him in the clouds,
I hear him in the wave beats and
I smile up at him in the stars

He is the first thing that I think of in the morning light
The last thing that I think of as I say goodnight
he is the beginning middle and ending of every story told
he’s my very special angel who will never grow old

Two years without you gorgeous, not a day goes by when I don’t just wish you could come back, forever is just too long

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Tuesdays

11 Dec

It is no secret that Tuesdays are my favourite day, I thought I would tell you why.

Every Tuesday after I have dropped Stephen at school I go and see Toby. I like to know that he looks nice and to chat to him. I like to play him some music and bore him with my singing. He is all decorated now for Christmas.

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I am finding Christmas hard again this year. Everywhere I go I see things I would like to buy for Toby and the realisation that I will never be able to buy them for him is heart breaking. It has made what was once a pleasure a bit of a challenge this year as wandering around the shops just seems to make me cry. I have settled for the tree and a card that I know he will never see or read but it brings me some comfort to know that he looks festive. Some people talk about the concept of moving on following a death. I have no idea what that is meant to mean. Does it mean forgetting Toby, not missing him any more? Is it about going back to how things were? I think not. I am trying very hard to want things and look forward to things. I have booked tickets to go see Gary Barlow, the last time I saw him was when he was with Take That and Toby was at my side, this time it will be Graham. I am off to ogle at Paul Hollywood, I will be elbowing my friend Debbie out of the way. Linda and I are going to see Mama Mia. I know that I will enjoy all these events and I am looking forward to them very much. But I still just wish that I could have Toby back. The feeling that would give me would just be… well it would just be. Anything else just can not compete and never will. It is what makes wanting anything so hard. I love going to see him on a Tuesday. It is a lovely start to a lovely day.

After visiting Toby I go to Yarn in the Barn at Black Sheep Wools. This group started earlier this year and it has been an absolute saviour to me. I love the eclectic mix of people, I love the ebb and flow of the conversation. There are no expectations on any one there, the only essential is that you love to knit and crochet. Its a lovely supportive group. They have done some fund raising for Tobysgift which means a lot to me. It is an acknowledgement of my boy and of me. It gives me permission to talk about him or not as I wish and just be myself. Next week we are going to be knitting and crocheting squares to make into a blanket to auction off. It will be made with love and in my eyes that makes it priceless.

One day I shall write a book, it will be called the Therapy of Knitting and Crocheting because for me that is just what they are. They are the only thing that I can concentrate on (well most of the time) and they allow the cartwheels in my brain to rest. I could not imagine being able to just sit and watch TV now, my mind would wander if my fingers weren’t busy. This year Graham requested a Christmas jumper and here he is modelling it. I have taken note that he has not yet worn it in public!

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Once Stephen saw his dad’s jumper he requested one too, so his wish is my command

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After Toby’s inquest I found a little yarn shop in Truro and bought myself some wool to make a gilet. It is soft and cosy and makes me feel warm in every way

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I will always remember that day when I wear it but it will also remind me of a lovely few days that Graham and I had in Cadgwith Cove.

After Yarn in the Barn I come home to my lovely dogs and chickens. Cute but complete pests and I love them to bits.

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I can have a nice lazy afternoon as Stephen goes to the respite unit for tea every Tuesday and I do not pick him up until bedtime. It means I get a quiet tea, possibly a little more knitting, and I do not have to think about how I how I am going to keep my little whirlwind occupied until bedtime. Stephen loves going to the home and looks forward to it greatly, some of his friends from school live there so for Stephen it is like going to a friends house for tea. As he enjoys it so much, we in turn can enjoy the time he spends there without having to worry. Gold-dust

So there you have it, let hear it for Tuesdays, my favourite day of the week!

#Tobysgift update
Since we started #Tobysgift in Septemeber 2013 we have raised over £10,600, and when I say ‘we’ I mean all of you and everyone that has supported the events we have done. Keeping Toby’s memory alive is great and if we can do that supporting good causes then that is even better. In February 2014 I have very foolishly agreed to go on a trek to Petra in Jordan in support of #Tobysgift and the CFTrust. Foolish because I hate hot, hate sand and hate excersie, Oh and there are NO toilets!! If you would like to sponsor me you can do so through the following link http://www.doitforcharity.com/SallyHart you can read more about the trek on http://www.cysticfibrosis.org.uk To sign up to the organ donation register and save lives just like Toby did and is still doing visit http://www.organdonation.nhs.uk

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The final chapter

27 Sep

The players are all ready and the scene is set, it is time to play the final act and then close the curtains.

We are going to Cadgwith Cove again on Sunday. I am going to stay in my favourite pub, drink a little too much cider and sit on my favourite bench.

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I will be able to listen to the waves and hear the beat, that slow rhythmical beat that lets me know that Toby is still out there and always will be. It will calm my soul and still my mind.

Think of us on Monday as we have to relive Toby’s final moments. It is his inquest you see. I really really do not want it to happen. It is an act of finality, it means that Toby will be officially dead. It means that I will have to listen to people talking about his final moments. Waiting for the accusing fingers to point at the bad mother that let her child die, listen to what happened, what was done to try and save him. Knowing that none of it could.

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Do you know what it is like to not to be able to do anything to save your child, to not even be able to put up a fight for him? It is cruel. I do not want to hear any of this but I will because Toby deserves his mum to be with him right to the very end. I have been for every important moment in is life and so I will be in his death. I have found waiting for his inquest hard, as much as I do not want it to happen, I need it to happen to stop the waiting. Honestly though what do you wear to your child’s inquest? The funeral was easy, I knew what would be right but his inquest, it is so formal and so not Toby, so not me, in previous lives yes, but not now. All I own now are Doc Martens and jumpers, gone are all the suits. I wander if the coroner is the same wandering about what to wear, thinking about Toby’s inquest, will it be hard for her too or just another day in the office, another rubber stamp, another number.

So it has been a very difficult week and then I get a letter, it is a lovely letter, it is one I have been patiently waiting for. It is from the recipient of Toby’s liver. The letter lets me know the very real difference that Toby made in his final gift. He really did save lives, he meant that children did not loose their mother, other parents did not loose their children. It made me cry and cry and cry but gosh I felt better for it. It makes me so very proud to know that people are out there living good lives because of the decisions that my boy made. #tobysgift its still beating IMG_0673

The sands of time

1 Sep

So we visited Cadgwith Cove again this week. For me it is not just the place that Toby died, it is the place that I have my last treasured moments of being with him.
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All I have now are my memories, and very precious they are too. Every now and then a memory long forgotten resurfaces. It is like the beautiful sea glass I was introduced to at Cadgwith.

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The beach looks full of pebbles but if you patiently scratch the surface and concentrate really hard these little jewels show themselves to you. They may just be old bits of glass smoothed by the sea but to me they represent every little scrap of memory I am still to rediscover, They are what will keep me going now no new ones can be made.

Toby’s bench looks splendid, it has been well used during the summer, as it was when we were there.

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It was lovely to be given the space to just still there on our own pondering our thoughts and dreams. It is still hard to look in the direction of his fall, the rocks looked even bigger this time, even the small ones. Stephen asked me why I brought him to Cadgwith when I knew it would upset him and the answer is simple, it is because a part of Toby will forever be there, a little bit of his essence bringing a warmth to my heart.

This trip it was lovely to meet more virtual friends, it is one of the most unexpected gifts to us from Toby, all the new and very supportive friendships that he has given us through his death. They have helped us in so many ways and I would not be without each and everyone of them.

I left Toby’s bench in the knowledge that it will be well looked after and used until we can visit again. I also left with another little bit of understanding of the journey I have been on. I know now just how physically and emotionally unwell I have been in the past year. How do I know this now? Well quite simply because of how much better I feel now. It is not that I necessarily feel any differently about Toby dying, I still just want him back, I still think it is unfair and dream of him coming back. Now however I am getting so much better at dealing with my feelings. I have grown better at anticipating them and better at knowing what to do to make it easier for myself to get through the more difficult moments. I have entered a period of calm, surf board at the ever ready for any unexpected waves them may come along. I know there is no going back to how we were, I know that the life we had with Toby will never come back. I know I will always feel sad when I see or hear of something that Toby should be doing; his 18th birthday was truly heartbreaking. I know I will have no new happy memories of Toby but I also know how much I will enjoy it every time I find a piece of sea glass.

The Butterfly

20 Jun

Its nearly 11 months now, it feels like a life time, 11 months without Toby, 11 months of his heart still beating, giving life to some one else. My life is so very different now. I have been blessed with many new and very kind friends since Toby died. Some of them are virtual, some of them have become real, all of them give me support that I would never of even dreamed of. 

The other day some one told me that they did not talk about their child who died on their Facebook page as their friends did not like her going on about it, another talked of being unfriended and blocked by others. I feel so very sorry that they do not feel as though they can talk about their children. I can not imagine what that must be like. When Toby died the person that I was died too. So many things changed as my world was rocked to its very core. Much of those early weeks and months I do not remember now, often I have to check if things really happened or who a person is and why I know them. I became a caterpillar, wrapped in a protective chrysalis, one day I do plan on coming out again, I am not sure when but lets hope I have become a beautiful butterfly! I have some very good friends who stay with me through thick and thin, they do not judge me or rush me, they just accept how I am, for that I am blessed. People talk about stages of grieving and yes I am on that roller coaster however, I am learning that there is not an end to the process, I am not trying to get to a particular place. There will be no closure and no moving on. That does not happen when you child dies. Toby is with me all the time, he is in my breath, my thoughts, he is in everything that I do. Sometimes he hinders me and overwhelms me, but we are gradually learning to have a comfy coexistence. If I were not able to talk about him I would be denying a big part of myself. I know that some people struggle to understand this or find it too difficult to watch. Some people who were very close now seem like strangers, they have not been here for the ups and downs, they have not watched to see how the caterpillar is developing or spent time seeing how and what it will become. I think they may be waiting for me to get better or something, or may be to get over it, I am not really sure and I do not know if I will ever really understand. 

The other day I was copied into a poem that I really like. I do not know who it is by so I can not credit it. 

I am wearing a pair of shoes.
They are ugly shoes. 
Uncomfortable shoes. 
I hate my shoes. 
Each day I wear them, and each day I wish I had another pair. 
Some days my shoes hurt so bad that I do not think I can take another step. 
Yet, I continue to wear them. 
I get funny looks wearing these shoes. 
They are looks of sympathy. 
I can tell in others eyes that they are glad they are my shoes and not theirs. 
They never talk about my shoes. 
To learn how awful my shoes are might make them uncomfortable. 
To truly understand these shoes you must walk in them. 
But, once you put them on, you can never take them off. 
I now realize that I am not the only one who wears these shoes. 
There are many pairs in this world. 
Some woman are like me and ache daily as they try and walk in them. 
Some have learned how to walk in them so they don’t hurt quite as much. 
Some have worn the shoes so long that days will go by before they think about how much they hurt. 
No woman deserves to wear these shoes. 
Yet, because of these shoes I am a stronger woman. 
These shoes have given me the strength to face anything. 
They have made me who I am. 
I will forever walk in the shoes of a woman who has lost a child

I love this poem because to me it says love me for what I have become, not what I have lost, if all you can see in me is my loss of Toby then you are missing everything that he has given me in life and death. You are denying me the freedom to be what I have become. I will be a beautiful butterfly and etched on both wings will be Toby. Image