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 https://www.storyhouse.com.  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.

Elin's Diary #3

Newsflash! Christmas has come early at the cottage! For the first time in living memory Elin and I have managed to persuade Paul to allow the tree to go up before mid-December. Even Ebeneezer Drake himself was powerless to resist the charms of 'trimming up' to a Christmas song soundtrack as a snow blizzard raged outside. You'd have had to have been made of stone not to feel just a little Christmassy, so the tree is up, the lights are on, we've watched 'Elf' (note the matching T-Shirts- we're big 'Elf' fans here) and Elin is LOVING IT!! Oh- a point about our tree. It's not the most aesthetically pleasing I know. I would love to have a real one covered in only white berry lights and glass baubles. I realise ours looks like one of Santa's Reindeer's just vomited a load of Christmas decorations all over it.  But Paul has years worth of Christmas decorations that belonged to Elin's big brothers and sisters and they all have a story and HAVE to go on the tree. My own family adopted the tradition of buying Elin a new decoration each year and over the years I've had precious decs as gifts, too. So I have to concede it makes sense to have a tree of memories instead of a tree worthy of a Christmas advert, its not the most beautiful but you can definitely find something new each time you look at it! Anyway Elin approves :-)

Following the excitement of putting up the tree on Friday though, came a not-so-exciting Orthotics appointment. Luckily the Orthotist was visiting us at home and give him his due he battled through the snow storm to get here. I struggle with anything to do with Elin's feet. It just upsets me that they are so bent :-( Some of this stuff never gets any easier. It's a total catch 22 because the more you try to correct them, the more it hurts Elin and there is trauma to her skin on her feet and ankles. But if you don't try to correct them at all, then standing in her frame could start to become very uncomfortable for her and may even start to get impossible, as she continues to weight bear on the outside of her feet instead of the soles of her feet. Standing is so good for her that we want to avoid stopping her standing in the future. At the moment her AFO's and specialist shoes aren't really doing their job when she is in her frame. Hence the specialist Orthotist visit. He was very reassuring. NOT!!!! "Her feet are absolutely terrible aren't they!! Why have they been allowed to get like this?" etc etc until I wanted to cry or fling a few baubles off the tree at him before asking him if he was aware it once took us over 12 months to get one pair of boots via the NHS and even then they still don't fit (I'm not knocking the NHS, it's just an overstretched service in an horrendous period in history for anyone with any kind of specialist needs I realise, but it makes sorting these issues out nigh on impossible whilst all the time they get worse) . Anyway the point is, Mr Straight-Talk has a plan for a special pair of boots she will wear whilst in her standing frame that should help a lot with this issue given the fact that we really don't want to consider surgery. So we will forgive him his bedside manner and hope he can deliver what he promised. 

Another, rather more successful appointment this week was Elin's assessment at 'The movement Centre' in Gobowen Hospital. Anybody wanting to take a look, the link is here https://www.the-movement-centre.co.uk. We're not sure how Elin got to nine years old without us hearing about this place but anyway a visit is better late than never I guess! The centre aims to develop movement for disabled children in different ways depending on need/ability (in Elin's case it will be by trying to improve head control and core strength) . She went on Thursday for an extremely long assessment and it's fair to say we were both soooo proud of her. She tolerated all the manipulation/moving/positioning brilliantly by people she had never met before. She really was a superstar, especially since the whole thing had to be done sans clothing too!! Brrrrr!!!!!

The director at the centre decided that it was worth trying a programme with Elin for the next 12 months. This physio programme will run alongside all Elin's other physio programmes and will not interfere with any other work being done. She was measured for a specialist standing frame which we will keep at home which will support her from the chest downwards and gradually remove a head rest  allowing her to practise side-to-side head movement and trying to encourage her to keep her head up. We are not expecting miracles and neither are the centre but we think that it's worth a try. They will set a programme we carry out at home and then re-visit them every so often to measure progress. Should be interesting! I think Elin is certainly in a more settled place now than she's ever been to tolerate extra physio work. We'll see. The movement centre was a lovely place and the staff were amazing with Elin. We felt immediately comfortable there and she even met Santa and had a toy! This is another place largely funded by charity and run with the help of many volunteers. Once again I was left feeling incredibly grateful at the generosity of strangers and incredibly lucky to live in a country where this kind of intervention and support is available to Elin and families like ours.

So finally Elin has rounded off another great week with lots of fun in the snow!! It really has been a lovely weekend. I can't remember the last time we had snow in December but I don't think there's anything nicer than snuggling by the coal fire as the snow falls down outside! We even managed to get a little ride in the sledge today- hurrah!! 

That was Paul's cardio workout done for a week!! 

 I think we need to look into getting a specialist sledge, apparently available for £358 https://www.amazon.co.uk/Cerebra-Sledge-Ideal-Disabled-Child/dp/B00B4WZ66Q Hmmmm!!! (Paul has already uttered the immortal words 'I think I could build one of those!!!!' Oh god)

This one did the job for today though. 

Have a wonderful, cosy, Christmassy, snuggly, happy week folks!! I'll report back next week on Elin's further adventures.

Thank you for taking an interest in our girl :-)

Ruth xxx

Elin’s Diary #2

Wow. Just look at this year’s School photograph! It arrived yesterday and looks even better than the proof they sent home for ordering, which is a good job since I ordered enough to keep the photography company in business for another twelve months! We both actually had a little cry when we opened the package that came home with her on Friday and saw what a truly beautiful photo it is. She looks so grown up and the way the light in her eyes is shining is just so perfect. I think it really captures Elin’s cheeky spirit. A massive shout-out has to go to the School staff here -the eagle eyed among you might notice that there is a person holding Elin draped in black cloth (genius solution to the dystonia/seating issue which can hamper school photo day and has done in the past). This person is Elin’s ever amazing key worker and I know her class teacher and possibly others would have been there too working hard to orchestrate a good shot. It can be so difficult and we so appreciate the outcome. It’s the best one we’ve had for years I think Elin looks like a movie star! So any family reading this you WILL be getting a copy of this and any non-family members who fancy a wallet sized snap or bookmark give me a shout.

It’s been another good week in the land of Elin. To my knowledge there has been no more sleeping/snoring during lesson time and Elin has started rehearsing her school Christmas play! Exciting! Perhaps the best news from school this week though came from the vision people who visited and gave Elin her annual eye test. Her vision has improved again since last time they tested her. This is fantastic news obviously and we are so proud of her. One of the most difficult things for me to grasp over all these years has been Elin’s reduced vision. I think it’s so cruel that the one thing that could greatly aid her understanding of the world around her also eludes her. Sight. But we have always known she does see, albeit in a very different way to us, so it’s been a constant attempt on our behalf and her school’s behalf to try and improve what she does have in order to keep maximising her quality of life and opportunities to communicate. It’s so wonderful and gratifying to discover that this hard work has not been in vain as she begins to track, briefly focus and follow images on a screen. Once again the kudos has to go to the experts she works with at school on a daily basis, who we use also as our guides in vision development. Once again Elin has proved the doctors wrong, since I distinctly remember being told when we were discharged from Alder Hey aged five that her vision development would probably plateau between the ages of 5-8. Go Elin!! 

This weekend will be a quiet one for Elin really as we have nothing big planned! She really enjoyed opening her advent calendar on Friday (I think it’s the sound of the foil) and even enjoyed a few licks/tastes of chocolate number one!

 

 

Safe to say I think she enjoyed it!

Finally we managed to get out for a nice walk today and Elin was largely good in her chair, hurrah! One of the things I absolutely love about where we live is the range of walks close by. Only last week we discovered a new one which looked like something out of a fairytale as you weaved through the trees on a blanket of autumn leaves without seeing a single soul. I can’t wait for it to snow because it will look exactly like Narnia there! Not all of these walls are suitable for Elin sadly, but lots of them are and we don’t even have to get in the car first. We are very lucky. I’ll leave you with two beautiful photos I got today of Elin as we were out trying to get our daily step count to 10,000 (well that’s just me in an attempt to combat the muffin top or should I say mince pie top?) Hope you have the best week, I can’t believe it’s December again already. Fun times ahead! 

Thanks for reading,

Ruth x

 

My girl:Rainbow chaser 😊🌈

Xx

Mother of all Lists

Today a post I wrote for Clemmie Telford AKA 'Mother Of All Lists', went live on her blog. Clemmie's blog is, in case you haven't guessed by the title, a collection of lists covering pretty much any subject you can think of. Clemmie writes candidly about all aspects of parenthood and beyond and also accepts 'Guest Lists' from other people, covering subjects as wide ranging from dealing with a breast cancer diagnosis or the death of a loved one to tips of planning a great children's birthday party. I am delighted to say my list about living with Cerebral Palsy has now been added to this catalogue of posts. I actually found it quite challenging to write in a 'list' format and struggled with what to include. I think my original 'list' was about three times as long, so editing down to a size people might actually want to read was hard, too! If you'd like to take a read you can find it here:

https://motherofalllists.com/2017/11/10/guest-list-my-daughter-cerebral-palsy/

Happy Friday, folks! x

It's ok not to be ready..

On this parenting journey through Quadriplegic Cerebral Palsy, there are  a lot of things we have to face that we're not ready to. This started of course at Elin's birth with accepting the diagnosis, which we didn't want to.  It continued through accepting tube feeding as a permanent,  a kitchen full of medication and a spare room full of equipment. Accepting a different community, a different set of priorities. Accepting a set of four wheels where her Clarks 'First Steps' should have been. More recently accepting a hoist just to get her into a bath. Accepting that dystonia will regularly render us housebound. We've had to accept a future we really weren't willing to approach and lets face it, a different life entirely. We had no control over any of these things- for a committed control freak that's pretty hard going!!
But, there are one or two things we have been able to delay facing. Leaving our beautiful little cottage for one (we successfully argued the case against the council to have adaptions done here, buying us a few crucial more years). Sending Elin to respite (respite facilities near here are AMAZING but thanks to help from family this is something we've not yet had to consider in terms of her care) and moving her into her own room. Yep, that's right, Elin hasn't really slept in her own room for the past nine years. I have no strange earth-Mum organic childhood development philosophy about this, I'm far from a co-sleeping parent advocate,  in general terms I'm far more practical than I am molly-coddler (when I was pregnant I had grand plans of the baby being in their own room by six months at the latest and Elin's Daddy agreed), I love my sleep and my privacy. Yet somehow, here we were. Nine long years and no movement.
Believe me I know how ridiculous this sounds and in truth I'm a bit (quite a lot actually) embarrassed about it. If you're a friend or a member of my family THANK YOU for biting your tongue on this as you undoubtedly have done. I wasn't ready to hear whatever you might have said before this year. If you're a professional involved in Elins life and you're reading this, Im sorry!! I lied because I couldn't bare to admit that we had a downstairs room kitted out for her with a hoist, moveable bed etc and we were still carrying her upstairs to sleep in our room every night. But I wasn't ready and I'm not sorry for that part. Everything else in Elin's life has had to happen whether I like it or not from day one. Decisions about her health, future and provision are rarely my own as her Mum. This was my decision and for a long time I was happy with it.
I am up often several times a night. Elin regularly chokes in her sleep. She often needs middle of the night nappy changes due to being pump fed overnight and the sheer amount of liquid she is taking in. She almost always needs medicating halfway throughout the night too, since her brain doesn't naturally produce the sleep-aid Melatonin. I just didn't see the point in racing up and down stairs all through the night to do all this. Especially when I was teaching as well as being Elin's Mummy. I was just too exhausted to want to think about it. Then my friends son who also had Quad C.P passed away in his sleep and through our heartbreak we became even more jittery. I think it would have been weird if we hadn't. So just like that, twelve months turned into two years, then four, then six and suddenly we had a nine year old sleeping in our bedroom and I was unable to carry her downstairs in the morning anymore, relying on Paul do do the lifting.
Around this time I stopped being unable to face the prospect of Elin sleeping downstairs and us sleeping upstairs. I started to wonder if it was time, the set up seemed vaguely ridiculous. She had done so much growing between he ages of 8-9. Not only that but her health has been so brilliant, no seizures or hospital admissions for almost two years. Her 9th birthday really helped me focus on all of this. She's just growing up.  I ordered a video monitor system (fantastic- 'Hello baby' from Amazon) and took a deep breath.
Last night was the first night we put 'operation big-girl sleeps' into motion. It went brilliantly. Elin only got me up once. I'm not naive enough to think that this will be the case every night and I'll probably curse my decision one night in the not too distant future on my sixth descent down the stairs, but the fact is I felt ready. We both finally felt ready as parents and I think Elin is too (it's only the past two or three moths that she's stopped choking in the night for example, something we couldn't have coped with if she was out of our sight I don't think).
I'm not writing this post to justify the past nine years, because I don't think I need to-at the end of the day that's just how it had to be for us and its surprising what you get used to. I'm writing this post because I want to share its ok not to be ready sometimes.
That goes for all aspects of Motherhood I think though, special needs or not. It comes back to trusting your gut, not pressurising yourself into things that aren't right for you and not caring what everyone else thinks (ahhhh! the true holy grail of parenthood right there!!)
Paul and I did feel a little weird this morning, this definitely marks a new era for us and we can't deny that Elin is growing up in her own special little Elin way. But mostly we felt pretty happy and totally confident that we couldn't put off this change any longer. It felt right, so it was.
And I think that's probably a pretty good rule of thumb for most of my parenting decisions, which I shall remind myself about next time I'm beating myself up over some small decision or other. Honestly I will, I promise :-)

P.s Thanks for the messages about the blog (or lack thereof). I've lost my blogging mojo a bit lately (and also my wifi connection which doesn't help but that's another story) I hope my 'Bitesize blogs' on Instagram have made up a little for this and enabled you to follow Elin's Summer adventures (link on right hand sidebar)

xxxxxx

Nine things I would tell myself on the day Elin was born.

Happy 9th Birthday to Elin!!
 Needless to say it's going to be an emotional weekend. I've been thinking about how utterly terrified I was on the day Elin was born in 2008 and in the days/weeks/months that followed. How nothing seemed like it would ever be the same again. I really, really wish I could hop into the Tardis and go back and give my 26 year-old self some advice. So that's what this post is, nine things on Elin's ninth birthday that I would tell myself as I sat by her cot in Special Care.
Nine practical things I wish I'd known, that may have helped, just a little.

Everything will be ok.

What happened to Elin during her birth was completely and utterly, categorically100% not your fault.

When you get home things will not magically become ok. Getting Elin home from Special Care is not the end, it's only the beginning. It will take months before you even start feeling anywhere close to 'normal' again. Don't pressurise yourself to bounce back. Don't pressurise yourself to do anything. 

Don’t feel obliged to see your Mum friends and their babies. They will be incredibly kind but cannot possibly understand what you are going through in their warm and fuzzy glow. The milestones their babies are hitting are too painful to watch as Elin lies like a beautiful and precious china doll in your arms.  Instead get in touch with another Mummy in your position. There will be nothing more invaluable to you than another Mum who understands your emotions-all seven hundred of them- without you having to say a word. Anybody else will still be there when you are ready.

Ask for help. Ask for people to bring you cooked meals, let your mum do your washing when she offers. Stop trying to be brave. Nobody expects it. Cry as often as you like. Get counselling, its not shameful or weak, its there to help. 

Don’t be sorry when you see that older child with severe disabilities. Don’t be heartbroken and terrified that the girl with the floppy body, flailing limbs and adult bib will one day be Elin. Because when one day that IS Elin, that is not what you will see when you pass another child like this. You will see her amazing sunny smile, it will make you smile, too. You'll see  the laughter at her Mum’s voice and the unmistakable bond between them as she sings her a favourite song. You will be thrilled with how strong she looks and how well she seems. You will exchange a knowing glance of solidarity with the Mum pushing the chair looking back at you.  There will be a world of pain and exhaustion but mostly immense joy and gratitude in that one glance. You are united in a special club, the secret club only a handful of parents will ever understand, of what it’s like to raise your amazing, wonderful, loving, incredible severely disabled children. Pity will not even enter your head.

You will experience more compassion, kindness, love and understanding from your family, your friends, work colleagues, acquaintances and even complete strangers than you ever thought possible. You will realise the world is not always a bad place. You will see the goodness in people’s hearts in how they respond to Elin and you will count your lucky stars every day for those that surround you. These people will save your life without ever even knowing it.

 One day, when the pain has ebbed away, when the memories and trauma of this day have faded, when your tears have dried up, when Elin has settled into a life, when there are fewer hospital appointments, when has been seizure free for eighteen months, when she goes to a school she loves and is happy every single day, when smiling is the very first thing she does after opening her eyes, you will be lighting a number ‘9’  candle on her birthday cake, incredulous that you got this far and you will feel like the luckiest Mummy on earth. I promise.

 Everything will be ok. There's nothing to be scared of. Actually, everything will be more than ok.

It will be kind of wonderful.

      Happy Birthday Elin 

     xxxxxxxxx

The Mother of all fears..

How funny that 'Cerebral Palsy Awareness Day' this year should fall on the same weekend as Mothers Day, since really the two are interchangeable for me. I would like to say that Cerebral Palsy hasn't defined my experiences of Motherhood but of course that would be a lie. It has infiltrated every part of my life as a Mum from the very moment Elin didn't take that first breath. I have sometimes felt that Cerebral Palsy has stolen from me all that being a Mum should be: that sometimes, I feel more like a Nurse; that in the darker times of the past eight years I have wondered, in the absence of easy communication, if Elin even truly knows exactly who I am. Would she mind if I wasn't around? Are we bonded 'properly' like other Mummies and their daughters? My biggest fear is that anybody offering a cuddle and being a diligent carer for her would elicit the same responses from her that she greets me with. 

Deep down though, when I'm not feeling so irrational,  I know the truth is that the bond I've been so fearful about kicked in as soon as the second line popped up on my pregnancy test. That the first time I saw her, despite the tubes and the wires and the grim predictions hanging over us in the silent intensive care unit, I felt it like a wrecking ball smashing through my heart and the feeling has never left, regardless of what I thought we were missing out on together. To torture myself with thoughts of what motherhood should have been is to betray what I do share with Elin. To grieve for what never was and what can never be is not only doing nobody any good, but it demeans my relationship with her and suggests the absence of a strong bond which is very definitely there. It's true I don't enjoy the same relationship with Elin that most of my friends do with their children. I don't know the joy of first words, or first steps or anything that comes with the more 'ordinary' experience. The young children of my friends and family will, when they see me, run up and throw their arms around me. It's a lovely feeling to know someone is pleased to see you and to feel this little chubby fingers dig into your neck. But the irony is not lost on me that I have never shared such a greeting with my own daughter. Such realisations still sting, but with time I have learned to accept my own experience of being a Mum for what it is. 

It's different.
But not less. 

Not ordinary, but extra-ordinary. Because when you strip motherhood right down, what else does it mean other than pure and unconditional love, more powerful than you could ever have imagined? I feel a bit lost when Elin isn't with me, like an actual physical ache. The only thing that makes the nagging anxiety in my stomach disappear during these times is Elin's smile. As soon as I see her face, it's like a weight is lifted and I can relax again. In turn Elin will swivel her head for my voice and break out into a huge grin as soon as she hears me. It feels a little like we are two halves of a whole. Like one of those necklaces from Tammy Girl everyone in school used to have- the heart broken in two with 'Best' on one side and 'Friend' on the other. Just not really whole until they are placed together again. Yin and Yang. Elin is the best to my friend and always will be. I need to stop torturing myself because I know she thinks the same. Not because she can say it, or show it, or make me a card or run at me and throw her arms around my neck after school. 

Because I feel it. 

Have a happy Mother's Day, folks xxx