Living with Cerebral Palsy 🍋🍋

Friday, 26 January 2018

Special Delivery

Christmas came today! Either a little late or super early, depending how you look at it! Exactly one month to the day that I should have been opening my Drake-family Secret Santa present, it arrived in the post. It was worth the wait!! Let me explain.
Some time ago, around about the time that certain gorgeous Drake babies began arriving and turning what was already a rather large family into something about as epic as the Lannisters, we decided Christmas was getting a little much in terms of present swapping. So we thought it'd be easier of all the adults in the family only had to buy one gift for one other adult in the family. That way everyone could save their reserves of money and energy for spoiling the children :-) We have a 'Secret Santa App' (how very 21st Century!) which each year emails you to tell you who you have to buy a present for. Then, we exchange these gifts when we all manage to get together (usually Boxing Day). It's great and works really well.
This year mine wasn't quite ready on Boxing Day and today, it arrived. Of course by now I knew who it was from, by process of elimination. It was actually brilliant to get a belated present in miserable January. My Secret Santa, or Adam has he's known to us, smashed it out of the park.
By now you have probably guessed it had something to do with Elin or I probably wouldn't be sharing it here. Adam had spent hours formatting this entire blog and photographs into a book. A beautiful, stunningly made, hard-cover book. Featuring everything I have ever written about Elin starting in 2009.
Wow. Just wow.
"Mum Making Lemonade Collected Works 2009-2017"
I can't believe I get to read my whole blog from the start in print instead of on a screen. The way Blogger works makes it quite difficult to read the blog in order, it's something I've never done (and never had the time to do). I'm so excited to read things I had completely forgotten about. I know there will be little achievements of Elin's, things she has overcome, hard times and amazing times that I have not thought about in years. It's literally Elin's whole life in a book, a record of every significant event this far.
This is one of the many reasons I started the blog when she was 12 months old.  I didn't want to forget anything that happened, bad or good. I treated it and still do of course as a diary, which I guess is all a Blog is really. To now have the first 9 years of Elin's life in print sitting on my coffee table is a dream and something I absolutely never would have got around to doing myself. I know it must have taken so much time and thought to create. Predictably I did A LOT of ugly crying when I opened it and will probably do a little more as I make my way through it. 
It has really also helped to remind me why writing is so important to me. With this book I know I'll be able to see the incredible arc of what we have been through with Elin over the past few years, from the immeasurably difficult to the breathtakingly wonderful. It's really, really, helpful to remember that sometimes. Now I have the first 9 years of Elin's life chronicled to treasure forever. No computer crashes or inability to use a laptop in my old age will stop me being able to reminisce about the incredible life of our miracle girl. That is priceless.
I hope Adam is ready to create Volume 2 for me in another 9 years time! 
I'm a lucky girl and an even luckier Mummy. I think it's one of the most thoughtful gifts I have ever received.
Thanks, Adam. 
Merry Christmas  :-)



Monday, 22 January 2018

Elin's Diary #6

I have just realised in my last blog post that I forgot to mention something else that can help beat the January blues- making plans. I made a conscious effort last week to try and pull myself together a bit and this largely involved making plans (and drinking wine whilst making plans). I'm feeling extremely lucky to have so many lovely people in our lives that we can do fun stuff with. As we approach February I'm definitely feeling brighter and able to focus on the positive again. Perhaps if the sun would just come out and the snow would leave for good we could pretend January never actually happened at all!?
Elin's been doing really well. She's basically had no issues at all health wise. Even the dreaded dystonia issue backed into the shadows a bit last week and I actually got out to a  couple of appointments with a lovely relaxed Elin in the back of the car . Here she is enjoying the thought of going to her Cranial Osteopathy
Of course being Elin this wasn't fool proof and we still had some pretty 'stiff' times this week too. But school report better sitting and standing so maybe things are on the turn. There was a strange episode on Friday night where Elin got really, really dystonic right before bed. Paul was in London for the weekend and for the first time since I remember I got a little bit anxious about what was happening with her and at what point I would have to call someone. She literally went like a plank and got pretty 'locked in', straining against herself, really awful to see but not entirely uncommon, except this time it lasted way longer than I've ever seen it happen. You can usually break this kind of stiffness with positioning. This time nothing was working so I reached for the final weapon in my armoury- Calpol. I wondered if something somewhere was giving her pain. Anyway the magic calpol kicked in and her body relaxed and I breathed a sigh of relief as she was finally able to sleep. I still slept on the futon on her bedroom floor though. It's strange the sense of overwhelming responsibility that comes when you're by yourself and Elin has a weird episode and you can't bounce thoughts of what to do off someone else. You start to doubt yourself and lack confidence. Once again I'm left in total awe of single parents, especially of children with any kind of medical condition, they are total heroes. I know I sometimes take the constant support I have from Paul for granted and perhaps vice versa. We are very lucky. 
Apart from Cranial Osteopathy, Elin had Hippotherapy again this week and loved it just as much as last time! She even did a bit of tummy riding in a sort of Annie Oakley stunt position which was pretty funny to watch and even funnier for Elin. So glad she has the opportunity to experience this, I'm hoping one day she might progress to a real horse but I guess we'll have to see. 

Aside from this it's been a fairly quiet week for Elin, other than the excitement last Monday of taking delivery of a brand new bed! Apparently Elin should have had a profiling bed some time ago so it was great that we were able to get one so quickly after raising our concerns about her lying on a flat mattress all the time (it's hard for her to manage her secretions and there's only so many pillows you can put under her head. Her bed was beginning to look like the one in the Princess and the Pea!) Anyway she loves it and so do we. It doesn't have the big built up sides that the last cot-bed had so she can see out of the window and the whole room looks lighter because the sides of the bed aren't blocking the light from the window. Result! Elin also loves going up and down on it of course! She's had lots of giggles making use of the mechanical back rest and foot rest in the last few days! I feel a lot better that her head and shoulders can now be properly raised whilst she sleeps and hangs out. 
So actually some really nice things have happened this week. Although the snow was very unwelcome this weekend, as being home alone I felt a little trapped with Elin being unwilling to take her out either for a walk or in the car, especially given the dystonia on Friday night. But we did our best to amuse ourselves and had some lovely visitors. It all helps. I also managed to get out for an hour to help celebrate little Ellie Wheeler's birthday. As some of you know Ellie was Elin's friend and she passed away in September. I wrote a blog post about her at the time, she had such an impact on our lives along with her family, she was amazing. Well her incredible Mum, Annie, had a tea party in her honour this weekend. There was a beautiful lit-up tree with some photo's of Ellie dangling from the branches and guests were encouraged to write messages on labels and tied them to the tree for the family to keep.  I thought it was a beautiful idea and I was stunned at the bravery and dignity of Annie in managing to organise such a touching, appropriate tribute to Ellie on her birthday weekend. 
Of course it gave me a lot of perspective, too. How easy it is to forget sometimes what we have to be thankful for. This is what I thought as I played with my girl this weekend. It is easy to forget, but we really mustn't. 
I can't wait for February to start. New month, new outlook. Happy New Year (February is the new January!)
Thanks for reading,
Ruth xxx


Monday, 15 January 2018

Blue Monday

Apparently today is the most depressing day of the year. You won't get any arguments from me about this! It's miserable, everyone is overweight and skint (by everyone I mean me) and it's becoming more difficult to imagine what the sun even looks like or what it feels like to be truly warm. Illness is all around with a national flu pandemic and I know from first hand experience this Christmas the NHS is in complete crisis, despite our PM's protestations to the contrary. There is a total knuckle head in the White House tweeting outrageously every day as if to serve only to depress us all further, the daily news seems to carry only stories of evil and the future of the world seems as bleak as the weather. "Blue Monday" indeed.
At times like this, our situation with Elin can weigh more heavily than I would ever normally let it on my psyche. I'm angry. I'm like a little ball of anger. It's hardly surprising that when everything feels so insurmountable, the things I have trained myself not to dwell on re-surface like an indestructible villain coming back time and again at the climax of a horror movie. Don't get me wrong, Elin's been great (the one saving grace of a pretty stressful Christmas holiday this year) and for that I am forever grateful. But her dystonia hasn't been as good. Coupled with the terrible weather it's rendered us quite housebound, since taking her out whilst her muscles contort and spasm violently in her chair isn't really fun for anyone. At first you deal with it, as you always do. However week after week of it can start to grind you down. Family outings, or actually even just getting Elin to her necessary therapies and appointments, can be totally draining emotionally and physically. Elin is so big now (and heavy!!) and she turns 10 this year. When her dystonia is at it's worst, nothing seems easy. Because it isn't. Negotiating each day starts to feel like a big deal.
Last night Elin was up from 2am. Mental exhaustion is really starting to kick in when added to anxiety -two of my favourite bed fellows! So, what, I hear you cry, is the answer? I didn't come here just to moan (I don't think). I came here to write a list of things that help when this is what life is throwing your way.
1. Friends and understanding. Cliche's end up being cliche's because they are usually true.  Nothing will highlight your true friends like a little bad spell. I, of course, have learned this time and again over the years. Interestingly I have never once been surprised either by those that are always there for us. You just know who has your back and you know those who just don't really get it, or don't allow themselves to try. I am incredibly lucky to have accumulated some amazing groups of friends over the years. I simply don't know where I'd be without them (and without Whattssap group chat- thank you, internet!)
2. Books.  Books save my sanity time and again. I am deeply sorry for anyone who will never know the joy of getting totally lost in a good book. Total bliss.
3. Netflix or Iplayer or whatever you can get a good watch on. Pure escapism. "The Handmaids Tale", "Stranger Things" and "Big Little Lies" are my top 2017 water-cooler picks for box set brilliance. Over Christmas I managed to switch my brain off long enough to get immersed in "Little Women" (some lovely moments) and "Feud:Bette and Joan" (for a vintage hollywood history screen legend luvvie geek-girl like myself this was PURE JOY). Nothing beats curling up in front of the fire and getting lost in a creatively magical world of strong characters and good stories.
4. Conversation. The vicious circle of  depression dictates that the less you do the less you want to do and the less people you see the less you want to see. But there is no substitute for getting out and having a chat to lift the spirits. This is where Storyhouse, Chester, comes into it's own for me.Storyhouse is the new theatre in Chester (though it's so much more than that). I volunteer there and getting out to work some shifts around their Christmas show "The Secret Seven" and a couple of other touring show's they have hosted has probably single handedly boosted my mood more than anything else. Suffice to say taking the plunge and getting to know and work with complete strangers (often a completely different group of people each shift) has been more of a tonic than I could have imagined when I joined the team. Being an unashamed thespian I loved Storyhouse anyway, but now even more so. I was a bit scared to make the leap of joint their volunteers but I'm so glad I did. This will definitely be elaborated on in a blog post of the future, but if you've never heard of them check out their website  I'd been feeling a little lost recently since I gave up my permanent teaching job and exchanged it for the full time job of being Elin's Mummy (this is also another blog post in itself for the future !) I like getting out, meeting people using my brain a bit in whatever capacity I can. This has served to scratch that itch for me for the time being and I love that I've had that opportunity. Thank you Storyhouse.
5. Walking. Now Elin is back at school, the pressure of being confined to the house has lifted in that appointments and therapies and some other commitments  aside, we are able to get out sometimes for a massive walk. It really does clear the head. It definitely makes me less angry, too :-)
6. Elin's smile. Enough said.
7 . Counting your Chickens. We have so much to be thankful for, we know that, and Elin's good health has been a source of huge gratitude and pleasure these past few weeks in what is historically a difficult time of year for her.  Nothing like slapping yourself with a wet fish and telling yourself to get a grip, the British way.
I'm sorry of this has been a bit of a depressing post. I know it's not like me and it kind of goes against the theme of this blog but we all feel like this sometimes, right? I do wonder if sometimes remaining so positive has sort of created a not wholly accurate portrayal that this life has somehow magically become easy or at least that we don't still struggle daily with what happened to Elin, that we no longer worry, or cry, or feel helpless, or are knackered or in shock. We do and we are, it's just rarely a compelling enough feeling to discuss with anyone but each other. That too, though, is something to be thankful for because it means each other is more than enough for most of the time :-)
I think that's enough morbid introspection, because one thing the past ten years has most definitely taught me is that this too, as everything, will pass.
Oh, I forgot one more thing that helps me cope with these blue January days...
8. Blogging.
Thanks for reading, as always,
Ruth x
Storyhouse, Chester.

Blogger Template Created by pipdig