Elin's Diary #8

Last week was pretty uneventful really, as weeks go. But we like uneventful sometimes, especially after a busy half term! Elin had her usual appointments, but swapped Hippotherapy for Orthotics which was necessary but nowhere near as much fun. Boo! I went to London for weekend to visit family. Unfortunately, we think visits to family will have to be done this way (i.e in relay) for the foreseeable future. The journey down with Elin at Christmas was a bit of a nightmare. When Dystonia makes it impossible for her to sit, a five hour car stint becomes pretty impossible. What happens is that she ends up working herself into such a state that you just can't bare to put her through it. Red face, lathered in sweat, breathing even becomes compromised for her. It's awful (and scary) to watch so goodness knows what it's like for Elin. The last time we attempted the train down instead was a nightmare too so for now it feels like there isn't an easy solution. This is obviously really upsetting since a large chunk of our family live in London. We are still waiting for a referral to Dr Lin, Dystonia expert at The Evalina Children's Hospital and it can't come quick enough. Elin's seating issues have affected her life experiences for way too long (meaning forever!) and now she is getting big the issues are amplified tenfold. Simple things like going away for a couple of days as a family can be traumatic for Elin. It's a part of her condition I find hardest to accept. She so loves company and different voices and new experiences but it feels impossible to expose her to these things when she can't sit in a chair or be in a vehicle. We just have to live for the times when she can manage it, and there are times, I just wish it wasn't so inconsistent for her.
Anyway as I enjoyed a lovely night in London (it still blows my mind that I can be in London in a couple of hours from Chester- it literally feels like you've landed on another planet when you get to Euston), Elin played her Daddy up something rotten and kept him up pretty much all night. Oh dear! Paul always says he can never sleep when I'm not here anyway, I think he feels the weight of responsibility of keeping one ear out for Elin waking up (usually my job) but I think it does him good to know what it's like to be 'on call' all night! In fairness he is as wonderful early morning as he is hopeless in the middle of the night so this division of labour means I get a lie in on a Saturday and Sunday and in school holidays which I'm happy to trade for a full night's sleep the rest of the time. I really, really don't like early mornings!
So I got back from London on Sunday and Elin slept really well (ha!) then it was back into the school routine again except this time with the unwelcome guest, the 'Beast from the East' !! Yep, this week we've had snow falling snow on snow, snooooowwww on snoooowwwww and it really feels (as if it didn't before) like a truly bleak mid-winter.

A Dystonia free happy journey in the car to the Cranial Osteopath this week, complete with home made, hand knitted Giraffe hat!! Erm...not by me obviously. I can't even hem my own trousers let alone knit, despite being quite adept when I was around nine years old thanks to my Nan. I think I even made a blanket once. I guess the novelty wore off! Anyway the visit to the Osteopath was a big success, Elin loved it and slept ALL NIGHT afterwards. Worth every penny. We've also noticed she's been breathing better since her visits started in December too. I always err on the side of caution/scepticism when it comes to alternative therapies but I'm open to try anything because I just don't think it can possibly harm. Cranial Osteopathy worked for sure when Elin was a tiny baby and I think it's working for her again, in a gentle and subtle way. Anything that makes her feel relaxed is a bonus in my eyes. I think she deserves a bit of a pamper now and then!
Following this, the weather sort of went off-the-scale crazy. We started to feel like we were in "Dr Zhivago" each time we went out of the door (minus the cossacks). This led to Elin having a self prescribed snow day today and it's not looking good for tomorrow either...

Elin kept toasty warm inside the cottage!! I hate her missing school but in temperatures of minus five and roads to us covered in snow and ice it's sort of inevitable. Sometimes you just have to give in to the elements.
Being off school gave us time to try our "World Book Day" costume on. Elin's school isn't doing it until next week but I thought we might as well have a practise run. I'm glad we did! Her costume looked GORGEOUS ...but it was too small! Arghhhhh!! Also when you have a child that lies/sits pretty much all day a giant stuffed hood maybe isn't a good idea. Neither is a onesie (that's too tight) when you factor in nappy changes. So it's back to the drawing board for me (fear not I have an idea- Don't panic Captain Manering!!) but of course I have to share the photo with you because it's just too cute not to. I think someone special to us who might be reading this would love this costume in particular, such a shame it wasn't to be. You have to imagine it, of course, with a lovely vintage suitcase and a plate of marmalade sandwiches....

How sad that Paddington Drake wasn't meant to be! Tune in next week to find out what the more sensible alternative is (disclaimer: it's not as good). Damn you Cerebral Palsy and your costume restrictive issues! Still, we'll alway have this amazing photo and I got to spend the afternoon cuddling a real life bear so it's not all bad.
Hope you all have a great week, stay safe in the snow if you've got what we have!
Thanks for reading as ever,
Ruth x

Elin’s Diary

Welcome to ‘Elin’s Diary’ which I’m hoping to update every Sunday reflecting on the past week of adventures! (Perhaps with the odd post in between, too). It’s been overall a good week for our little sunshine girl. She has been slightly off colour - something I’m putting down to the flu vaccine last weekend but is more likely just a little cold or virus with all the excessive secretions that have been plaguing her.  She even had a rather long nap at lunchtime in school more than once this week! Oh dear Elin how sad! She’s not done that since she was a tiddler.  Apparently she was snoring all over the classroom I’ve no idea where she gets those bad sinuses from! (Me) Although we don’t think she demonstrated appropriate remorse! I think detention is the only way forward.

On Friday I missed an apppintment in the athsma clinic for the THIRD time. I can only conclude that my sub conscious being really, really doesn’t want to go or that any *rare appointment that I have for myself with a healthcare professional just never quite arrives on my radar, even though it’s repeatedly written on my calendar! I’ve never once forgotten an appointment of Elin’s so why I can’t muster up the enthusiasm about my own health to remember a five minute check up is beyond me- maybe I’m scared somewhere in my psyche that I’ll be told red wine causes wheezing!! But I do think that the seemingly endless amount of appointments for Elin in the last six months or so has created a bit of a brain malfunction on my part. Perhaps you can carry around too much information in your head and you sort of short-circuit. I feel a bit like I’ve short-circuited! Yesterday for the first time ever we ran out of one of Elin’s medications. I had forgotten to pick up the new bottle from the Chemist. I rooted through the cupboards in disbelief of my own idiocy even though I knew they weren’t there. As I turned the bottle upside down and shook out every last drop, like in that Tomato Ketchup advert from the 80’s, I felt totally gutted. Elin is so vulnerable and reliant on us being on top of everything. Feeling that you let her down even in a tiny way is horrible. Yes we all make mistakes but being wrong is not one of my strongest points! Luckily for us we managed to elicit every last drop out of the bottom of this medicine bottle- taking us up to first thing on Monday morning where the new bottle will hopefully be waiting patiently for me in the Chemist. This barrage of appointments for Elin we seem to have been experiencing is not necessarily a bad thing though, I’m not complaining, she has an amazing team of professionals around her ensuring that she gets the very best care from all angles and for that we are forever grateful (I just wish my brain cells would stop feeling so frazzled and start working at full power again-if they ever have been)

For example, on Friday Elin got to start ‘Hippotherapy’ again. Sadly this is nothing to do with actual Hippo’s (shame!) and instead is a horse riding therapy for the disabled. Elin’s muscles, joints, spine, head control and pelvis are all given a good workout whilst on the back of a mechanical horse with a physiotherapist. One day she may migrate to real horses, but obviously there is a risk there now she is so big and a lot of responsibility for the back-riding physio to keep her safe. So a mechanical horse it is for now, which mimics the movements of a real horse. Elin loved it! It’s so wonderful just to get her doing something new that she enjoys and if there are physical benefits then all the better. 

 

The Clwyd Special Riding Centre is an amazing place which would never run without donations and volunteers. It blows my mind that this sort of opportunity is open to Elin because people are willing to give up their free time to make it happen. The generosity of the human spirit never cease to amaze me. We are very much hoping this is something Elin can continue to enjoy for some time to come.

Elin’s also had a really lovely weekend because it was her Great Aunty Brenda’s 90th Birthday Party! Wow! That’s quite an age and Elin was absolutely delighted to be out at night! In fact she was so good and so pleased we began to wonder if she thought the party was for her! It was a special treat that big sister and all round favourite person Caitlin travelled back from London for the weekend to sing at the party. She brought the house down as usual but what was lovely for me was to see how excited Elin got when Caitlin started singing. She just adored it. Usually I would shy away from taking Elin out at night because I don’t like to upset her routine (or things just aren’t suitable for her) but I’m so glad we did!!! I realised that I get used to going out in the evening without Elin and you always feel like you are missing a limb. It's a feeling you make yourself get used to for practical reasons but it never really goes away. So it was so good to see the extended family together and have Elin there alongside us. I’ll leave you with some pictures of Elin trying to steal Aunty Brenda’s thunder and wish you a really good week. Thanks for taking an interest in our miracle girl 😊
Ruth x

 

   

 

Xxxx

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