>A final goodbye

>Dear Gran,

One of my carers suggested I do this. She suggested I write it in a card and place it with you as your body takes it’s last journey tomorrow… But I find it easier to type and I think the idea of this easier to deal with and more comforting than a card. I know that you will know this wherever you are… you probably already know what is in my Heart and what I’m going to say and I’ve yet to write it, I don’t really know what I’m going to say to you yet.

Tomorrow is your funeral. Oh how I wish it wasn’t!

I can still see you sat there in your chair in the lounge laughing at us and being happy that we were there. I would sit at a sort of right angle to you most of the time but I always tried to spend a few minutes perched on the edge of my chair holding your hand and cuddling you and chatting up close. How I wish my CP allowed me to do that more often and for longer. And how I regret that tomorrow I will not be able to stand up when the others do, kneel when they do and instead must remain in my chair.

I don’t often regret being disabled, believe it is right for me and that I have it because I am strong enough in my soul to cope with the trials it throws at me. But I won’t participate fully tomorrow because of it and I do hate it for that!

I know that you wouldn’t want me to feel like that and I’m trying not too. I know that you were proud of me for all that I am and for not letting me stop me. I will participate in everything and I know that you believe that not standing etc doesn’t affect that but I know that after your strokes you understood where I’m coming from – knowing that it’s ok that I can’t but still hurting all the same because I can’t.

Talking of being proud, did I ever tell you how proud I was of you… for everything you were and everything you taught me. And especially for how well you coped after your strokes and as you gradually became more and more disabled by them. Despite my disability being lifelong and your only becoming disabled in the last six, seven years or so I learnt a lot about how to cope with my disability from you – your courage and your smile and the way you kept fighting till the very end inspired me and taught me how important it is to say and to live as though I have a disability, it doesn’t have me. Because that’s how you lived. It is now how I live and how I will continue to live. To honour the woman that you were and the woman you helped me to become and continue to help me to grow into.

I can remember visits from the Pillow Fairy, Easter Egg Hunts, a Barbecue in the rain one day when Dad and Uncle A had to cook under an umbrella. I remember going to feed the chickens and so much more. Games of school where you would be a pupil either called Dim (because your initials were DJM) or Arabella because you liked the name.

You loved horses. I have many, many memories of going Horse Racing with you and Dad. Sitting on the grass making daisy chains between races and chosing horses to bet on because you liked the name or it was something Grandad or one of us liked. You would watch the racing on TV as well and your enjoyment was palpable. I also remember you coming to watch me in some of my Riding competitions. I was so proud to not just have my parents and brother and sister with me but my Gran too.

Just like when Grandad died we are having family flowers only and having a collection. We’re going to give the money to Riding for the Disabled in your memory – to the group that I was a part of and that gave me so much for 16 years. It was Auntie Sheila’s idea. I remember how proud of my riding you were. I remember how giving you were and how you would have done anything for anyone It seems really appropriate that we do this for you as a part of our final goodbye… our see you sometime. But oh how I cried when Dad told me that yesterday and how the tears fell even harder a few minutes ago when I printed off a notice about the donations.

I don’t want to finish writing this letter. I don’t want tomorrow to come and for it to be your funeral. I don’t want to face the truth that you really, truly are gone and not sat in your chair laughing and watching TV like usual. I feel like you should be. But I am also happy for you… happy that you are with Grandad again and the rest of your family and friends.

Do me a favour? Give Grandad a big hug and a kiss for me (Nanny and Grandad T too if you see them) and tell him I love him lots. Remember that I love you now and forever and that I am so so proud to be able to say that YOU are my Gran and am thankful that you helped me to become the person I am.

I miss you sooooooo much and hope I can do you proud with the rest of my life

Emma xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

>Spaghetti and Funerals

>It’s been one week since Gran died… a long week and one that, in many ways, feels a lot longer than it really is.  Her funeral (oh how typing those words hurt!) is on Tuesday and it is my intention to be away from t’internet for a few days and have some time for me.  I think I need it.  Sometime away form my mind numbing time fillers to do something constructive is probably going to be a very good thing for me at this point in time.  I last deliberately took time to myself in April and it was wonderful… time to do it again me thinks.

The funeral is going to be a very very long day both literally and figuratively but we will make the best of it as we must.  For Gran deserves nothing more than a send off that sums up “her” so much and does her justice.  I’m going to do all I can to give her a final goodbye in the honour and style she lived her life.

Tomorrow morning I’m going to my parents house and I’m going to write a card to go with the flowers.  I’ve been racking my brains for the past couple of days for something appropriate and meaningful yet not cliche and trite to put.  I think I have it but that’s private and I don’t want to share… I’m still trying to decide for sure and hoping that some guidance will come which shows me the correct words.  Of course whatever I write will be right and correct and really I shouldn’t worry too much.  It’s just one of the very last things I will ever do for her and I feel I have go to do my all to do very best.

So, yeah… the funeral and some downtime.

I’ve used this metaphor before but it’s the one that works best for me right now… I feel like a packet of tesco value 14p dried spaghetti.  Brittle and hard and easily shattered before it’s been cooked and then after limp and sticky and sloppy and you can’t do anything with it, all it does it slide all over the place.  I’m wavering between both of those states right now – just like Spaghetti.

It is not, however, anything that Gran would want me to be.  And so my downtime.  Hopefully I can come back a bit more like Emma and less like spaghetti.


>Two poems that I wanted to share… they have been bringing me some comfort this week.

God’s Garden

God looked around His garden
And found an empty place
He then looked down upon the earth
And saw your tired face

He put His arms around you
And lifted you to rest
God’s garden must be beautiful,
He always takes the best

He knew that you were suffering
He knew you were in pain,
He knew that you would never
Get well on earth again.

He saw the road was getting rough
And the hills were hard to climb
So He closed your weary eyelids,
And whispered “Peace Be Thine.”

It breaks our hearts to lose you
But you didn’t go alone.
For part of us went with you,
The day God called you home.

~Author Unknown~

That one is something that helps me to remember that whilst her death hurt us, for Gran it was something of a blessing. And also that she remains with us as long as we remember.

I’m Free

Don’t grieve for me, for now I’m free
I’m following the path God has laid you see.
I took His hand when I heard him call
I turned my back and left it all.

I could not stay another day
To laugh, to love, to work, to play.
Tasks left undone must stay that way
I found that peace at the close of day.

If my parting has left a void
Then fill it with remembered joy.
A friendship shared, a laugh, a kiss
Oh yes, these things I too will miss.

Be not burdened with times of sorrow
I wish you the sunshine of tomorrow.
My life’s been full, I savored much
Good friends, good times, a loved one’s touch.

Perhaps my time seemed all too brief
Don’t lengthen it now with undue grief.
Lift up your hearts and peace to thee
God wanted me now; He set me free.

~Author Unknown~

This one is one that I was introduced to last year at Nanny’s funeral. My cousin, Helen, read it and I can’t remember her exact words in introduction to it but it was something along the lines of her thinking it was somethiing Nanny would have wanted to say to us had she been able too. I believe that to be true both for Nanny and also for Gran… and I believe that Gran being Gran she would be really touched by the crying and the feelings but would also want us to remember the good times and to honour her memory by having more good times, happy times, fun times… make more memories to share and talk and laugh about in the future. She would tell us what the poem tells us. She’d probably also say “have some chocolate” and get the cream out to go with it but that’s another story!


Gran was the last of my Grandparents to die. As well as my Grandparents I have also lost two very good friends of mine to Cystic Fibrosis (in 2000 and 2003 respectively). Just after Christmas I wrote a poem which summed up my feelings about all of the loved ones who have gone on before me and whilst it isn’t quite appropriate for my feelings about the loss of Gran as her passing is still so recent… I wanted to share it here again as it says what I want to as best as I am able at present.

As the clock rolls on

Time flies
The years roll by
It’s so long
Since I saw you last

I wish you were here with me
But I know that cannot be
In body you must remain in my past
But In spirit and in love you you remain in my heart

One day we’ll be together again, they say
I know that’s true
If only it didn’t have to be this way.

I miss you so
But I realise you had to go
It was best for you
You needed the rest

You’re passing caused me strife
Yet I am glad you were in my life.
Knowing you helping to shape me.
I felt like your death would break me

Yes you are gone
While I remember you still live on.

It doesn’t feel like it’s been this long.
Thinking of all the years and months
Is completely wrong.

Time markers are so, so hard
Grief slips back in
When I drop my guard.

I wish you hadn’t had to go
I miss you so
I wish it didn’t have to be like this
I wish I didn’t have you who I miss.

You are still with me
This I know
I remember everyday
Try and let your spirit show
As I honour you in my own special way.

Emma ~ 9th January 2006


>Good: Definitely going on the JST trip in September
Bad: Dependant on medical clearance – shouldn’t be a problem BUT…
Good: Easily getting a medical urgent doctors appointment – and one with MY gp
Bad: I have an ear infection
Good: Meds/cream combination is kicking ear infection ass
Bad: Second ear infection this year.
Good: Alice checked all my training stuff I did for her and was pleased despite a few mistakes
Bad: Finding work stressy and hard to concentrate on
Good: lovely colleagues who realise I struggle to get myself a drink at work and bring me a glass of water AND a full jug so I don’t have to keep asking.
Bad: Working in a bureau thats like a sauna
Good: carers who get it
Bad: Most carers don’t get it

Good: Realise that how I feel is not a depression flare/worsening/relapse thing but completely to be expected and although I hate the word – normal
Bad: completely losing the plot and breaking down this afternoon
Good: having Sam here at the time to remind me that it’s ok to cry, encourage me to let go, hug me and hold me tight telling me she wasn’t going to let go whilst I sobbed.
Bad: Gran died at the weekend necessitating all crying, breakdown horribleness
Good: Carers, work colleagues and friends who lend me books
Bad: I have too many books waiting to be read
Good: I’ve lost so much weight I had to drastically tighten the drawstring on my skirt today.
Bad: I didn’t realise until after my skirt had seriously slipped down and my client pretty much must have seen my knickers.
Good: I’m going to buy new, smaller, clothes on Saturday.
Bad: clothes to wear on Tuesday to the funeral that is

>”Emma Jane is going to Spain”

>When I was 13 I went on a trip to Spain for a week (or maybe it was five days) with my school. It was in May but we found out that I would be going on the trip around Easter time.

Just before then I wrote a poem for my Gran, I think it was about chocolate but I’m not 100% sure. My Gran used to write me letters and they would be addressed to “Dearest Emma” or “Darling Emma”.

The day we broke up for the Easter Holidays I got one of those letters from my Gran. Just a brief note…. but with it came a card with a flowery design on the front. In which there was a poem that she had written for me as a thank you for the one I wrote for her.

The poem was about my upcoming trip and was called “Emma Jane is going to Spain” I loved that poem so much and I took it to school with me to show everyone because I was so proud of it and of Gran. I kept getting it out to read again and again and dropped it outside of my form room. I was absolutely gutted when I realised I had lost it and then relieved beyond words when I returned to my form room at the end of the day and I found it on the floor with a footprint on the back but relatively unharmed.

I can remember two of the verses of the poem but no more… since Saturday I’ve been hoping against hope with all I am that one day I will finish unpacking my boxes from before I went to uni and find that wonderful card with that oh so special poem handwritten inside.

The Verses:

Emma Jane
Is going to Spain
They say it won’t rain
(Except on the plain)

Through the coach door
Stream the girls of form four
using words on the tour
like ole and senor.

>Remembering The Pillow Fairy With Lots of Love

>I have so much I want to write tonight but I am upset and I know I can’t do it justice.

In a way my Gran has been gone a long time as the strokes meant that for the last year or so at least she wasn’t who she was if you know what I mean. But she was there, physically, and we could still see her personality inside the body that no longer cooperated with her. And every so often we would get a glimpse of the real Gran and that would be amazing. So there was still the part that could delude myself into thinking that one day, maybe, the figure of my childhood, the person I have so many wonderful memories of and spent so much happy time with would be with us once again.

But then came that fateful phone call on Saturday morning with the words that echo over and over in my head like a sick mantra that hurts all the time.

“I’ve got a bit of sad news” my mum said “It’s Gran; she’s died.”

And the world as I knew it, ended.

The fantasy and the reality shattered and fell apart… I will never hug my Gran again and tell her I love her lots or sit with her and chatter away to her as I did most saturdays since I left uni.

And I will never go to feed the chickens with her again and have her ask “oh is it AGONY?” when I got corn in my shoe.

There will be no more whole family Easter Egg hunts on Easter Morning with the eggs hidden in the “swimming pool” – a part of her Garden we used to pretend was a pool in our games. She would hide so many eggs each with our names on and then lots of mini eggs which were a free for all. We’d still be finding them come November.

There will be no more visits from the wonderful gift giving Pillow Fairy who always visited when we went to stay.

There never would have been but I could pretend and hope and dream… I can’t any longer.

Gran was the last of my Grandparents left alive and there is a strange sense of moving up in the family pecking order now… I don’t like it at all.

But all I can do is sit here… fondly remembering The Most Wonderful Pillow Fairy… remembering her with lots and love and the hope that if I ever have Grandchildren I will be as wonderful to them as Gran and the rest of my Grandparents were to me.

There’s lots else I could do; there’s lots else I would like to do. But I refuse to do that to them and their memories.


>May 2005. My darling Nanny died and then a week or so later a good friend of my Gran’s died. Nanny and Gran were always quite friendly and Nanny enjoyed going with us occasionally to visit Gran, she wasn’t well enough to go visit Nanny for a long time.

I remember being with Gran while my Dad, Uncle, his partner and my Great Aunt went to the friend’s funeral. We were talking and Gran made the comment that all or most of her friends were dead. It was pretty horrible because I just really didn’t know what to say, I don’t think any of us did.

June 2003. My Grandad died… he and my Gran had been married 58 years. I remember how upset she was, we all were. She said a few times that she was missing him. She had huge speech difficulties the last sort of 10 months or so and couldn’t really communicate too well but I know she still missed him greatly. I remember how obvious their love for each other always was.

A long, long time ago when I was a child. I played a game with my Gran… she and my Grandad had a huge box of toys for us at their house and one of them was a phone… I pretended it was ringing and told her it was for her, it was her mother I said. She chattered away pretending to speak to her keeping up the game for me (I was probably 8 or 9), asking her mother how Heaven was and telling her she missed her.

Today. I am hurting, and I wish she had woke up this morning. But… she was peaceful, she was blissfully unaware of what was happening, she was home and she was in her sleep… all that happened was she drifted away and didn’t wake up HERE.

She woke up somewhere else, with no pain and with her speech and other abilities the strokes took away restored to her. She is with her family who went on before her, the friends she missed so much and most of all, she is with my Grandad once again.

I’m trying to focus on that and not on the hurt.

I love you Gran. I miss you and I always will… but I hope you are enjoying your reunion.

>Wishing still for one more day…

>This is the hardest post I have ever had to write in this blog and I would give anything in the world to not be here writing it now.

Last time I had to write a post like this my good friend Sarah did it for me. I thought about asking her this time but I want to do this myself. I wish there hadn’t been a last time and I really really wish there wasn’t a “this time” but there is and beating around the bush isn’t helping.

It’s not easy and I can’t really bring myself to do it but I guess I just have to…

My Gran died in her sleep during the night.


>I am working on a longer piece about the “nitty gritty” of CP, getting into it deeper than I ever have in my blogs before. And I am also thinking about editing my “Medical FAQ” (linked on the sidebar). Then I got to thinking about my About Me page and whether I’m happy with that ~~ I am in a spring cleaning mood but I can’t be bothered to declutter my actual house so my virtual one gets a going over instead.

So I thought I’d do something a little different. I want everyone who reads this to leave me a comment asking me a question – the one thing you really want to know, about me, about my medical stuff, about my job, my childhood, anything.

I am post dating this post so it remains at the top over the weekend and then on Monday I will write up an entry answering questions!

And in the spirit of getting to know each other better – two questions for you to answer in the comments:

How did we meet/did you find my blog?
What do you like/dislike especially about my blog?