Living with Cerebral Palsy 🍋🍋

Thursday, 22 September 2016

A ghost of a dress..

Today I said goodbye to my wedding dress.
I didn't, as I perhaps liked to imagine on the day that I wore it, give it to my daughter. I haven't kept it for her to play dress-up with, or try on, or laugh at, or use the material for christening gowns of her own years away from now. Because I can't. My wedding dress hangs like a ghost in my wardrobe haunting me with the conversations I would never have with Elin about it and with images of her dancing around in it,  that I would never see.
 I'll never know what I would have done with it, if things had been different. If Elin had been different. But what I do know is what I will definitely never be able to do with it, which is share it with my daughter, on any level. So there it has hung, for the past 11 years silently mocking my idle daydreams from the corner of my cupboard. I've never even put it back on myself, not since Elin was born anyway. I harboured an in-built fear that it might hang there forever until I was old and demented and would be tempted to dress in it once more, gliding around a cobwebbed home like Miss Havisham. Yikes.
So, what do you do with a wedding dress you don't think you want anymore?
Well, in my case you send it to an absolutely heartbreakingly amazing charity, which I heard of a few months ago. The more I read up on their work, the more it touched my heart. I emailed them so long ago I'd almost forgotten about it and recently received an email back, saying they could finally accept my dress (this length of response time is a good thing, it happily means they have lots of donations) The charity I sent my wedding dress to is called Cherished Gowns UK.
They take wedding dresses and using a family of volunteer dressmakers from across the UK they turn the dresses into miniature gowns for stillborn or premature babies to be buried in.
The testimonials are amazing.
But how I wish nobody ever needed one of these little gowns.
I know I have never experienced this. I cannot really imagine the pain- I'm not pretending I can. But someone close to me has and so I do feel I have some of an insight, however fleeting. I will also remember the moment the midwives delivered Elin and the cry that never came for the rest of my life. It's etched on my heart. A life changing silence. But, how lucky we were. The silence was not finite. It so easily could have been and it is for so many Mummies (far too many, still, in this day and age). And I imagine those Mummies, and their dreams and their hopes and how they can drain away, along with the colour from you face and the blood from your heart and the map of your future, just as quickly as a blue line can pop up on a pregnancy test. And I think, if I was them I wouldn't want to think of anything. I definitely wouldn't want to try and find something appropriate for my sleeping baby to wear. But I would have to.. and I wouldn't want dolls clothes, or clothes I might spot another baby wearing at the supermarket. I would want something special. Perhaps it would bring me some small comfort that someone far away had donated their most treasured dress for this purpose. Perhaps the fact that they understood and cared, even from an almighty distance would help me feel I wasn't alone in my torture. I think that would mean a lot.
So, I donated my dress and packed it up yesterday and I wasn't even sad. I have no right to be sad about losing a dress when so many have lost so much more, so much that we were so close to losing, too.
It's just a dress. It's what it represents that's important and you can't give a promise away to charity. A promise lives in your heart, not your wardrobe.
Sharing it with Elin is not, in the great scheme of things, important. All that is important is that she is here with us, sharing our own special moments everyday. That is worth a thousand material possessions and more and we never, ever take it for granted.

EDIT: Since originally writing this post, one of the talented seamstress's at Cherished Gowns was kind enough to send me photographs of the tiny outfits she created form my dress. They were absolutely stunning and really brought it home to me what the charity does. If there was an ounce of uncertainty in me about what I had done, it was completely eradicated as soon as I saw the photographs. Amazing.


Mummy Times Two

Thursday, 8 September 2016

I'm gonna live forever...

Today Paul took Caitlin to London. She is starting her three-year course at the drama school 'Italia Conti' in North Clapham. It is one of the oldest drama schools in the UK, we are still absolutely buzzing that she got in her first year of trying. Statistically, only one 1 in 5 of students who get into an accredited drama school in the UK are under 21 years of age (Caitlin is 18) . And only 20% of students auditioning get in at all. You do the maths (I can't). Basically, she's beaten some serious odds and everyone is very proud :-) :-) Having been to drama school myself (yes! That's right! I had talent once upon a time, apparently, and was lucky enough to score a place at Queen Margaret's drama school in Edinburgh) I know that she is going to have the best experience EVER. I also know she is going to be homesick, and scared, and intimidated at times. But she's got this. It's what she's always wanted, she's strong, she's massively talented (more so that I could ever have dreamed of being). She'll be ok. She has heaps of family down there. It's going to be amazing for her.
She's not coming home until Christmas.
Oh god.
We're going to miss her so much it's worrying.
I'm worried for Elin and how much she will miss her.
Yesterday when Caitlin came to say her final goodbye Elin had no clue. She had no clue her best friend in the world is leaving. Until Christmas. She won't see her for 12 weeks. It's enough to make me cry (disclaimer: I did cry, I have cried and I'm still crying). I absolutely hate that we can't explain to Elin what is happening. We can't help her to understand in any way what is going on, where Caitlin is going, why she is leaving, that she is even leaving at all, how long it will be before she sees her again and, put simply, why she can't hear her favourite person in the world around her anymore. She hasn't noticed today of course. she won't notice tomorrow. It may be a few days. But soon she will start looking around. If she hears her name she will strain and struggle. If she hears Adele on the radio she will start laughing (she will think it is Caitlin).
It's not fair.
It's another thing we just gotta suck up and deal with. In a different world Elin would be excited for Caitlin, speaking to her on the phone, even texting her maybe, pouring over her freshers photo's, asking what she's doing, visiting her. That's the other world of course, the parallel universe where Elin was born ok. I don't know how to make this ok for her. I make it ok for me by drinking red wine, but that's not going to work for Elin. We just have to wait and see and THANK GOD for face time and Skype so she can 'see' and 'speak to' Caitlin as regularly as she can. That's the only thing we can do. You know I hate change, blog readers, and this is a pretty big one. It highlights, as things do now and then, the life we are leading in comparison to the life we could have led. The thought of Elin missing Caitlin and not being able to articulate it , express it and act o it make me feel physically ill, so we have to be her thoughts and her voice. We have to make sure we keep the contact. Again, thank GOD for the internet which makes this entirely possible. And hey, whilst I'm worrying about Elin and how she will adjust I don't have to worry about me and how I will adjust.
Because I'm going to miss her.(I won't even start on Paul, he is beside himself at the thought of her leaving!!)  I'm SO excited for the life ahead of her and her talent and what she may achieve. I know that path, I've walked it. She is going to have the time of her life.
But I will miss her SO MUCH. And so will Elin. Hey that's life though eh. Christmas will be here before we know it, right????

Baby remember my name :-) 


Thursday, 1 September 2016

The Chronicles of Elin (Part Four)

Pinch and a punch, first of the month!! Rabbits, rabbits, rabbits...etc etc!! That's it!! School's went back today. Summer is officially over. It might be my imagination but there is a distinctly 'Autumnal' feel in the air today! I LOVE Autumn and never mourn the end of Summer, but if I was going grieve the end of the season then this would definitely be the year to do it.
Summer 2016, you've been AMAZING.
Elin has been amazing.
She has been so well and so regularly happy in her chair that we have had a wonderfully relaxing and fun six weeks. Hardly any dystonia has meant plenty of trips out. No visits to the doctors, or the hospital, or even any worries that she is a bit off colour. Thank you, universe, for fulfilling one of our little wishes. We really don't take it for granted. We couldn't be happier as our holiday ends, there's lots of changes coming up (more on that later) but we're ready for whatever you've got. Bring it on.
So here are my final photo's from the end of the holidays. Elin can't wait to get back to school and see her teacher and key worker as she has really missed them. Routine is good for her. But how nice it's been not to have one for a while. Really, really nice :-)
Thanks for taking an interest in the holidays of our girl xx

Visits from buddy Mollie (and her sister Rosie who didn't want her picture taken haha)
Yep- guess who we saw AGAIN last week? Gruff!! That cheeky monkey gets everywhere. Had him all to ourselves for the night whilst his Mummy and Daddy had a much deserved break. Elin, of course, loved it.

Hanging around in the garden :-) 

Ty Mawr and their fabulous inclusive park. We messaged inclusive play with this photo to say thank you and they used it on their website! How lovely. 
It's quite nice where we live really, isn't it :-) :-) 

We have made great use of our National Trust membership this holiday. Erddig, about six minutes drive from us is simply beautiful and we had a lovely time sitting in the gardens on such a sunny bank holiday Monday

Sunny selfie :-) 

Shhhh!! Don't tell anyone again but Elin had another date!! Things are getting serious. Not the zoo this time, or her birthday party, but just a nice relaxed third date in the garden. I am absolutely convinced that Elin knew it was Llew from his breathing as she started beaming as soon as she lay next to him! Adorable!!

Enjoying games with Daddy. Elin is definitely a fan of the beard. I think I am too, when controlled. Let it get to wild and it starts to look a bit 'Miracle on 34th Street'  :-) I love Christmas but it doesn't mean I want to be married to Santa. 

Speaking of hair, Elin has had a new haircut ready for school. The girls in Imagine Hair Design in Ruabon are so good with her but it helps that she absolutely loves getting her hair cut! I think its the water spray and the sound of the scissors. I think this photo is just beautiful.
This was taken on the last day of the holidays (well-for Paul anyway!!) An absolutely stunning day at one of our favourite places, Chirk Castle. Elin loved it as much as we did. We are feeling very lucky as the holidays draw to a close, hope you are too lovely reader. Until next time...

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