Living with Cerebral Palsy 🍋🍋

Monday, 17 April 2017

Music for the soul.

On Sunday we went out for Easter lunch. Nothing fancy, just a nice old fashioned pub meal (with nice old fashioned prices, which kept Paul happy haha). The place was pretty empty, as we were eating quite early, but there was a man playing the piano really beautifully for our entertainment. An old fashioned gesture for this old fashioned place. I knew immediately that Elin would enjoy it so we sat down and watched her listening carefully.
It could not have escaped the pianists attention, how we took a while to unstrap and lift Elin onto the seats by the table, with her splints and boots getting caught on everything as we looked for a space to park her wheelchair.  It could not have escaped his attention how we watched her listening, how her eyes darted around, trying to anchor herself as to where she was and where the music was coming from. How we did not order food or dink for her and the Creme Egg brought by the staff for her was left untouched. It could not have escaped his attention that this big girl before him sitting slightly awkwardly by the table stayed silent and was not always able to look in his direction.
It did not escape his attention.
So he had a choice to make.
In light of my previous posts you will know we have not come to expect people to always engage with Elin where they may usually engage with 'ordinary' children. This guy was busy, he was working, he did not need to move from his piano chair. He had the perfect excuse not to. Yet- he made his choice and just like that, I realised for every person out there who may feel uncomfortable engaging with Elin, there's one who is happy to. More than happy to. 
He chose to come over to us and ask us what Elin would like to listen to. He chose to smile at her and talk to us about her and actually tailored his music for her. When I told him she liked Disney, he said he would like to play 'Frozen' for her. It was so thoughtful and kind of him, just a truly lovely gesture. Up to this point Elin had been largely indifferent to the music, although you could tell she was straining to concentrate on it and listening really well. What happened next was truly magical and I will forever kick myself that I did not video it.
Elin's reaction to what we have always thought to be one of her favourite songs was incredible. She literally stilled. Her eyes widened and her whole face was locked into thinking. As the familiar 'Let It Go' riff was played (how much do we all wish we'd written that song?!? There can't be a child or parent under the age of 12 who doesn't know every bar of it inside out!!), she broke into THE biggest grin you have ever seen. This was followed by peals and peals of laughter. There was absolutely no question of it being a coincidence. She recognised the song. Considering we haven't listened to it in quite a while this was even more incredible to us. How clever is Elin? It really made me quite teary and very, very proud.
I love how Elin responds to music. It's like it touches her soul. It gets to her in a way that nothing else quite can. I suppose music is universal in it's ability to move, regardless of understanding, language, age and any other barriers that dictate our abilities to enjoy other forms of entertainment. It speaks to her, she understands something in music that she cannot necessarily understand in words. Its an emotional understanding rather than an intellectual one. It's the same reason why a few bars of a certain song can reduce you to tears (I'm looking at you Bright Eyes by Art Garfunkel) yet images of atrocities on the news for example each day may not. You cannot become desensitised to music. I love that about music and I love that Elin gets to experience that and share it too.
The piano man (George) was visibly delighted by Elin's responses and played more Disney songs for her.  He had such a kindness in his eyes, he really made a difference to our experience that day. I've since looked him up and he is a highly trained musician from the Musical Academy in Bucharest. If you ever want a player for a function or family event I would highly recommend him (link below).
So it turns out for every family at the zoo, there is a George the piano man playing a different tune.
Happy Easter folks.
Hope you found the music, and the sunshine, in yours.

xxxxxxx
Mummy Times Two
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Sunday, 9 April 2017

Reflections on a crazy week

Firstly, just a little thank you to all visitors to this blog who read, shared, commented on and sent me private messages about my last blog post https://mummakinglemonade.blogspot.co.uk/2017/03/to-family-who-ignored-us-at-zoo.html.
I have never experienced such a response to anything I have written before and I have been bowled over  by how it seemed to strike a chord with people. It has had way more hits than anything I have written in the past eight years and after being featured by Huff Post Parents was chosen as a featured post on the front page of  Huffington Post UK, which was awesome.
As with almost every post I write, I hesitated before hitting 'publish' on this one. Writing this blog can sometimes feel quite exposing- I am sometimes after all writing down my innermost thoughts and feelings for anyone to read. If I over-think it I can start to feel really scared that people will judge me and criticise my choice to share my views. However, usually I know deep down whether a post might just reach someone (even if it's just one person) interested in understanding life with Cerebral Palsy and that is ultimately what causes me to hit the 'publish' button.
The response to this post in particular ultimately showed me my decision was the right one, but it was a bumpy ride to this realisation. Perhaps because it has reached an audience that ordinarily my posts might not, I also experienced my first negative comments from readers, too. I'm not going to say that didn't sting a bit because it did. I'm just not used to it and incredibly stupidly, after having opened up my private thoughts for the world to read since Elin was a baby,  I wasn't really prepared for it. On refection though, it's pretty naive to think that a post can be read by so many people in this crazy world of the internet and not receive any negativity at all and I have definitely learned something with this one, which is why I'm doubly glad I hit that button.
I have mainly learned to try and stop with all the self-doubt that public blogging and sharing can bring. It's not going to get me anywhere. Why does it hurt that some random person told me to basically suck it up before likening life raising a disabled child to being Vegan? (Yes, really!!) Why do I give a rats ass that another randomer thinks that I must be a very 'lonely attention-seeking' Mum who is 'clearly bitter and jealous of other normal families' ? Ouch. I needed the red wine after that one (it wasn't even the worst but I won't give credence to the other comments by repeating them). I think I care because I've always cared too much about what people think, it's one of my weakest points. I think I care because I'm opening up my heart on here about something so insanely personal- my daughter. I think I care because it's hard to separate someone trolling a post from a personal attack on us and more importantly, Elin.  It's beyond my understanding that anyone could misinterpret what I write about Elin and turn it into something ugly, particularly when I strive to stay positive and show the wonderful side of raising a child like her. But then a lot about the internet is beyond my understanding and so I have to be honest with myself. If I'm going to put a public profile out there and publish my thoughts on this blog I can't then get upset when people disagree with what I say, however frustrating that may be. Basically, I have to grow a thicker skin.
 It's not that I feel answerable to anyone for what I write on this blog because I can't control how people choose to interpret my words. It's just so annoying and let's be honest, hurtful, when people read your post but not your words. When they choose to ignore the message at the heart of a post and instead pick apart your choice of expression of that message. My post was just written because I wanted to inspire a little confidence in other families when faced with interacting with families like ours. Nothing more. If the post finds even just one person amongst the thousands of readers who might think twice about how they interact with children like Elin when they are out and about then I'd be well chuffed with that and THAT'S what I have to hang onto and what I do hang onto.
All that said, I was genuinely moved by the amount of positive messages and comments I had about this particular post ( the support this blog gets in general is amazing and totally humbling to me). I was especially moved by the messages I had from many families like ours who said my post resonated so much with them and  made them feel they are not alone. That is one of the reasons I started my blog in the first place - connecting with others in our situation and maybe even offering some comfort to those at the start of their journey. So to those who commented with such kindness and empathy directly on the blog or via private message, or to all those who shared via Facebook and Twitter, you really helped me to remember why I open my heart about being a Mummy to Elin so publicly when I needed it most and I'm truly grateful to you. If you need me I'll just be off growing my thicker skin....(you can from now on refer to me as 'The Rhino' 😂)
Have a fabulous week, everyone! Elin's got off to a cracking start :-)
xxxx

"The worst enemy to creativity is self-doubt"
-Sylvia Plath


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Friday, 31 March 2017

To the family who ignored us at the zoo.....

This isn't meant, in any way, to be some sort of internet-shaming rant against the family who ignored us at the Zoo. I'm sure they are lovely, their children were adorable and they spoke to them with patience and a clear amount of love during the boat ride we all shared. They were interested in what their children had to say, they listened to them and answered their questions. They were, to be honest,  the kind of parents I like to imagine we would had been, if we had made it through those sliding doors on the day Elin was born. They chatted about the animals, encouraged their imaginations, didn't raise their voices when the toddler kept climbing on the boat seats- you could tell (as far as anybody ever can) that they were just a really nice family.
So why did they avoid all eye contact with us and Elin as we sat behind them on the boat ride? Why did they not return our smiles and our attempts to engage with their children?
I'm really not trying to hold them up as pariahs of society because they chose to ignore us that day, but I have to get it off my chest. This particular family, of course, may just be the kind that don't talk to those around them anyway. We've all been there, at the park, the swimming baths..avoiding eye contact because you can't really be bothered to exchange niceties with someone you'll never see again. I get it. But something felt a little different in this situation.  It was Mother's Day, the sun was out..the atmosphere at the zoo was great. Sharing a tiny boat with someone you're not even going to glance at can start to feel a little awkward.  I want to be clear, I don't think this was due to any kind of mean spirited feelings on their behalf. I think they were scared.
That's what has upset me.
They were scared of how to react or what they should and shouldn't say to us in our isolating, unfamiliar situation. Maybe they just figured it's just easier to say nothing at all. Well here is my open letter to them about what would have been a more preferable response to us and why, perhaps by sharing this I can help other's to feel more confident about interacting with families like ours.

To the family at the zoo,
                  We were the family sitting behind you last week on the boat at the zoo. You seemed like a really lovely family and your boys were super cute. I don't want to make you feel bad. I understand why you didn't look at us or talk to us today, I truly do. It's a minefield of political correctness out there and I think you were scared to say something to us in case maybe it was wrong somehow. Perhaps, in another lifetime, I would have done the same.
                 However I want to tell you that when you see families like ours, saying nothing at all is the very worst thing you can do. Way beyond any worries you may have (in the split second you decide not to talk to us) about causing offence by saying the wrong thing. Believe me, you can't say the wrong thing- we've heard it all before and more. Our interactions with strangers about Elin are so well practised we could hold a conversation in our sleep about her with smiles on our faces. I very much doubt there is anything you could do, say, or ask that could cause us even the smallest amount of offence.
                 Please, just smile at us or better yet -say something. Ask what my daughter's name is, or how old she is. Ask us if we've been to the zoo before. Talk about the weather.  Anything you would say to an ordinary family. Ask if Elin likes the animals. (I will tell you she struggles to see very well but the noise of the flamingoes make her laugh and if she gets close enough to the penguins she loves watching their bodies glide through the water). I don't want to swap phone numbers with you and be your best friend honestly,  just please don't ignore us. It breaks my heart a little bit.
                Your boys would have benefitted so much from what you could have taught them by talking to us. That disabled children don't need to be ignored, they are children just the same. That it's nice to find out a little bit about something new. That there is no need to look away, or be worried about a small figure like them with wheels where their feet should be.  Maybe they would have asked you a few questions about Elin after we parted ways, which would have been another wonderful opportunity for you to educate your children on the positivity of differences between us all. You wasted that today and I am sorry, not for us but for you.
              I truly believe Elin is here for many different reasons. One of them is providing this opportunity for us all to learn a little bit more about the world and to appreciate it's beauty in all of the different forms, whether that be alike or very different to what we are used to. Don't waste that opportunity. Do just a little bit to change our world and you might find your own changed just a little bit, too.
Just smile. Say hello. See where the conversation takes you.
You never know what you might learn. There is absolutely nothing to fear when you see a family like ours I promise. We are really just like you, we're just sailing on a different boat down a different river, that's all.
Kind regards
The family at the zoo.
xxxx


"Education is the most powerful weapon which you can use to change the world"
-Nelson Mandella.
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Wednesday, 22 March 2017

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
Mummy Times Two
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Friday, 10 March 2017

Surviving a sleepless life...

I have been trying to write this post for a while but...I've been too tired!! One of the things we have to deal with on a regular basis as Elin's parents, yet never really take the time to stop and consider, is prolonged sleep deprivation. Apparently, sleep deprivation is extremely common in children with profound and multiple disabilities. There has been a report by Family Fund, a charity for families of disabled children, which states that 93% of parents of disabled children are up in the night with their child. 49% of parents experience health problems due to lack of sleep. 22% experience tiredness at work and 11% of parents have relationship problems. None of these statistics surprise me. Something that completely blindsided me as a Mum of a severely disabled child was the sleep deprivation. This is because it was largely unexpected, unspoken and there is not a lot of information about it. We were told many depressing facts about what life would be like with Elin following her birth,  but one thing nobody told us  was that she WOULDN'T BLOODY WELL SLEEP. Yet, of all the parents I have come into contact with of children with a wide range of special needs, sleep deprivation seems to be top of the list of common denominators for ongoing issues year after year. It's one of the issues with which parents gets the least support, either because it isn't out there or they feel ridiculous mentioning it amongst the list of 'serious' things they are dealing with (like me).
Sleep deprivation is torturous, fact. The longer it goes on the worse it gets in terms of the generalised day-to-day exhaustion you feel (although weirdly, the longer it goes on the more used to dealing with it you get) In the dead of night, because you don't think you're feeling quite miserable enough, you silently tick off the years you have barely achieved a single night's sleep and try to ignore the silent nagging that you may never have a full night sleep again. The whole depraved sleep pattern can feel like you are in the realms of newborn again. Except that maternity leave finished seven years ago and life has to go on, for us and for Elin. As a result I can sometimes behave in a way I'm not proud of (i.e. be a bit of a tit) or appear to be a shadow of my former self and when I say shadow I mean a great big blimp, blobby shadow because to add to my list of woes I'm eating crap food and snacking all day for energy kicks. 
So what can I do about this?
Nothing (Once all medical advice and avenues have been explored of course)
But there are some things I have done over the years that do help, tried and tested. Now, lucky blog reader, you are going to benefit from my incredible wisdom on the subject. Here are my top tips:
A brief guide to surviving a sleepless life
  • Get yourself some proper coffee. I used to think instant was ok. I was so very wrong. It's proper coffee or nothing. Proper coffee is life.
  • Eat breakfast, even if it's late. Proper breakfast type materials, not three ginger biscuits and a bag of cheesy wotsits you started yesterday (I just plucked that example out of thin air, I swear)
  • Get outside. Don't give into the temptation of staying indoors like the miserable sloth/zombie you feel you truly are. Fresh air changes everything.
  • Get dressed, properly dressed. I am bad for not doing this. Slopping around in holey leggins and a hoody doesn't help you, it justifies your feelings and enables you to give way to slouching around on the sofa ( I'm not judging here btw, I am an expert in this field, I've done extensive research. However tempting, step away from the hoody and claw back a bit of pride in yourself. Honestly it will help)
  • Exercise. HA!!! I know!!! I hate exercise!! But even I can't deny the endorphin-induced benefits of hoofing around a kettle bell every morning and following Davina McCall's 'fit in fifteen' DVD. Proof positive is half term where I did nothing and felt like a slovenly hippo all week. There are billions of amazingly effective exercise DVD's out there meaning you don't even have to leave the house now so really there's no excuse, especially as Davina's in particular takes only fifteen minutes. That's gotta be better than nothing, right?? (Also, tip: It helps to scream loud expletives at Davina and her disgustingly perfect six pack while you work out)
  • Stop drinking in the week (double HA!) I hate myself for even suggesting this one but I did dry January (it was as horrendous as it sounds) and I've got to be honest with myself and say I don't think the nightly 'medicinal' red wines were helping much the following morning after regular nights of roughly three hours sleep. Go figure. 
  • Cry. Stop bottling it up, it's taking too much energy. Properly cry. Do a massive ugly cry, with snot and everything. You deserve it! This is crap!!! Cry, dammit!! (It works, I promise).
  • Accept help. If there is anyone offering you support, a bit of free childcare, a lasagne, a hug.. take it. Nobody will think you're a bad Mum. Nobody will think you're not coping (maybe you aren't, I know there are times when I'm certainly not- all the more reason to take it) People will only offer if they mean it. Seriously, Accept help.
  • Don't be scared to tell people. Tell them you are so tired you are hallucinating and you feel like you're living your life underwater, or in slow motion and you feel you may also murder someone at any given time. Tell them how bad it is. I am still struggling with this- nobody wants to whinge. You are not whinging, you're explaining.  
  • Get some sleep-deprivation diversion tactics on the go. Read a good book. Take your mind off it. Become engrossed in a box set/series. My go-to choices right now are 'Modern Family' for mindless warm and fuzzy 20 minute episodes of bitesize escapism, or Lena Dunham's 'Girls' if I'm in a slightly darker mood (I frequently am, hence whole reason for writing this post.) 
  • Listen to spotify, if Elin can benefit from music-therapy then surely so can her parents? No annoying adverts, D.J's or songs you can't bare. Listening to music has proven psychological benefits and soothing a sleep deprived mind is no exception.
  • IGNORE the housework/chores! Nobody cares if the washing basket is full, it can wait until such a time as you can see straight again! Look after yourself, not your house.
  • Don't feel bad about having a sneaky nap. In the evening after your tea, in the morning if your child is at school, when you get in from work, whenever your partner/mum/friend/pet can take over childcare, when you're supposed to be washing/ironing/cooking, whilst you're on the toilet- just NAP. You are NOT a slummy Mummy. You're slowly going mental from not sleeping. You are no good to anyone collapsed in a heap on the floor. TAKE A NAP.
I can totally see how the stats at the start of the blog have come about. Support and understanding, not only from each other but also friends, family and work colleagues is paramount in retaining your health, sanity and relationship. Don't underestimate people, most folk have experienced a sleepless night and will know exactly how you feel if you're dealing with it on such a regular basis.
As a final thought, I want to acknowledge something I realised last night. After yet another few hours of Elin playing her favourite game of 'dodge the sleep' I predictably relented and let her come into our bed. She, equally predictably, falls into a deeper sleep than Princess Aurora the moment her head hits our pillows (though sadly even that failsafe comfort doesn't seem to even be working lately). As I've outlined, it's beyond tiring (and not to mention tight for space- sardines in a tin, anyone?) but the truth is, sometimes its hard to feel needed by Elin as a Mummy, in the traditional sense. So if I guess if I have to wait until 2am for her to really need me and only me then I'll be there every time and despite absolutely everything, I'll be smiling for her. I know how lucky I am to even have the option of having her close and safe each night. As I eventually, inevitably, watch her nod off, I wonder what she dreams about. Is she as happy in her dreams as she is when she wakes me, smiling as she always is? I hope so. I hope, in her dreams, she is free.
Have a wonderful, sleep-filled weekend, folks.
xxxxx

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Friday, 24 February 2017

Tale as old as time...

Well it's been a dream of a half-term for Elin. Despite Storm Doris succeeding in ruining our fun to a degree (in the form of a cancelled hotel room-dammit!) we still had a wonderful week.
Keep it to yourselves, but Elin went on yet another Chester Zoo-date on Monday with Llew, her boyfriend from school. I coached her beforehand on 'treating them mean, keeping them keen' but it soon became apparent that Elin had decided playing it cool was just wasting time.....
DOH!!!
Also, there were hardly any animals out. They clearly enjoy half term as much as most parents.Thus, there are no more pictures from our trip, it was also pouring down (of course, it was the Zoo at half term after all!) and the busiest we have ever seen it there. But as always well worth a visit anyway- so flat for wheelchairs and an amazing fully-equipped disabled changing station- and Elin and Llew definitely appreciated their time together! I am absolutely convinced they recognise one another, tuning into one another's sounds like two baby dolphins. Who knows maybe they even have their own language- I'd like to think so :-) So cute :-)
On Tuesday we met a rather scary new orthotist and by scary I mean she was militarily-efficient and had eyes like a shark that penetrated my very soul with every piercing question she fired at me about the ineptitude of Elin's footwear and AFO's. She wasn't happy with things (neither have we been for a long time) and once she had the bull by the horns, the lady was NOT for turning. That said, I loved her. Give me someone Trunchbull-direct that finds out what she needs to know and creates a proper plan for Elin's feet over a soapy mum-pleaser any day. I don't want to be your friend, I want you to do your job really well and look after Elin's feet. And boy does it sound like the Anna Wintour of the orthotics department is going to do that (erm.....she's not going to read this, right?!?)
On Wednesday we were supposed to be going away and staying in a really nice hotel in Llandudno. Llandudno, like Chester Zoo and Norfolk, is flat as a pancake. So perfect for Elin's chair, which is why it remains one of our favourite destinations. It could do with a decent disabled changing station somewhere but it's not a place that exactly rolls with the times, so maybe in the future?! But then Doris happened. Nope, not some gangster granny that goes to bingo with your Nan, it was a storm (seriously they couldn't think of anything better than Doris?) We were a bit worried about driving back on Thursday down the devils highway that is known as the A55 in the midst of a red weather-warning so like the true Brits we are we didn't stay at home we just resolved to go for the day instead. Everyone knows the best time to go to the beach is when its so windy and wet that it feels like you're wading through a continual cold bath with an industrial fan in your face- because there's nobody else there! Hurrah!!
Everyone say "Private Beach'!!!

Rainy pier! 

But, oh..I do like to be beside the seaside....

Getting my 'Hygge' on back in the sanctuary of the St George's. Mmmmmm snuggly.

I fancy some of my Daddy's cuppa!

So we risked death-by-evil-seagull and had some chips for dinner followed by another stroll (roll?) and came home, which I think turned out to be the right decision. Thursday consisted of battening down the hatches and having lots of warm cuddles and clever playing with switch-toys...Go Elin!!!!!
Then what better way to round of half-term than a spot of shopping? Elin has been SUPERB in her chair and her dystonia has largely been kept at bay all week.  So she paid a traditional visit to the Disney Store and as usual absolutely lit-up with the fab music they play in there (I worked in the Disney Store in Edinburgh one Summer whilst I was at Uni and that music wasn't so fab then. The opening bars of 'Colours of the Wind' from Pocahontas still haunt my nightmares) . She also loves the bright colours all around and seemed particularly taken with the Beauty and Beast merchandise (the beautiful yellow dresses and the fluffy Beast toy, not the Emma Watson Belle dolly which is horrific- honestly, google it). This is especially poignant for me because it's one of my favourites and she has always loved the soundtrack. I saw the original when I was 11 and was captivated. The new live-action version is coming out in March and I think Elin's going to love it. I can't wait to take her. I might have to buy her the official jumper I saw in store today advertising the film. It said 'True beauty comes from within' across it. 
I'll second that.
Have a great weekend guys.
xxxxxx



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Sunday, 19 February 2017

Adopting a new attitude...

Now and then something stops you in your tracks as you trawl through the quagmire of internet news, mindlessly scrolling to while away the minutes before you (hopefully) peel your bum from the sofa and go and do something meaningful.
Last week, this story stopped me in my tracks. A young woman named Rebecca, whilst working as a missionary in Ghana, discovered severely disabled twins. Their mother had just passed away. I won't regurgitate the story, you can read it for yourselves here  in Rebecca's own words. Needless to say it's pretty incredible. To be Mummy to a disabled child is easily the hardest thing I've ever done and am ever likely to do. This blog charts that journey and regular readers will know it's had more ups and downs than Taylor Swift's love life. There were times, especially in the early days, when I didn't know if I could carry on. If I was equipped, emotionally and physically. I loved my daughter more than life itself but I didn't know if I had the strength to live that life and to be her Mummy. Sometimes, in the darkest of dark moments, when I was ready to throw in the towel (and/or throw a tantrum/throw a dish at the wall/ throw up/ throw myself under a duvet and never come out)  my sense of responsibility to man-up (woman-up?) because I WAS her mummy and I HAD to, was the only thing that kept me going. Which brings me to this extraordinary young woman. She had no such responsibility. She meets children in need of fostering and adoption almost every single day. To choose, then, to begin the arduous task of attempting to adopt disabled twin babies in a foreign country without the nearby support of her family and friends (back in America) absolutely blows my mind. What's more, I'm sure she probably isn't the only one embarking on this journey. I can barely comprehend the selflessness of what Rebecca has chosen to do and why. As a missionary she cites God as leading her way and is devoted to him and what she describes as her 'path'.  I find this part the most difficult to understand,because it is so far from what I believe but I am in complete awe of the strength of her faith. Her actions are simply incredibly noble and completely amazing.
It makes me feel like a bit of a lemon to be honest. It took me so long to be able to untangle my thoughts about what had happened to Elin, to start seeing the positives, to stop feeling sorry for all of us. Has my first-world narcissism created problems that should never have been there for me following Elin's birth? If Rebecca can actively choose to be a mummy to a child like her beautiful Ellie-Grace then what the hell have I been going on about for eight years? This serves me up a giant dollop of fresh mum-guilt (mum-guilt is something I EXCEL at. Seriously, I could get a Phd in it and I'm willing to bet I'm in the majority on this one- why do we punish ourselves so continuously?). But then it dawns on me that it doesn't matter how you got to be a Mummy to a child with disabilities in the first place, whether you actively chose it or did not. The fact is, you're doing it. By playing the cards you got dealt in the only way you know how. Your own way. Making mistakes, struggling, making it up as you go along. But still being that Mummy. Being there. At the end of the day that's all we can do, isn't it? Be there and do our best, in our own way...and stop negatively comparing ourselves to someone because they seem stronger than us, or braver, or smarter, or better, or we don't think we're good enough.
Because to the person who matters most, we almost certainly are.
Have lovely half term folks and please check out Rebecca's inspirational story if you can  xx


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Friday, 10 February 2017

Riding the tube..

So it's 'Tube Feeding Awareness' week apparently and in the malaise of awareness weeks that the double-edged sword of social media has brought to us, this is one I can most definitely get behind. When I was pregnant I thought the only feeding choices for my baby were breast or bottle. Quite a contentious debate amongst midwives and mum's, I figured I would breastfeed if I could but not beat myself up if I couldn't. Sorted. Turns out I never got the chance to do either, since Elin's brain damage at birth affected her suck and swallow reflex so profoundly that she became and remains a tube-fed little warrior. I hated this fact for so long, that the bonding of feeding was yet another thing that had been robbed from me as a first time Mum. I seriously couldn't even look at babies feeding via breast or bottle, I couldn't beat the jealousy, it killed me. Elin had a nasal tube until she was strong enough to have a gastrostomy tube (a feeding tube fitted directly into her stomach) and until that time she was weak, vomiting continually and suffering from dreadful acidic reflux. Her nasal tube popped out so often (as she vomited) that the home nursing team taught me to pass it myself instead of having to go to the hospital for it to be done. Not a nice task since if you get it wrong you could be pouring milk directly into her lungs and drowning her from the inside!!! Try adding THAT little gem to a list of new-mum anxieties. Out of necessity, I became a bit of a pro but would crumple in a heap, shaking and crying every single time it was done. I couldn't believe I had to do that just so I could feed my baby. I was distraught and there was zero advice in any baby book I could find about how to deal with the situation. No tube-feeding mum support groups in my area (or anywhere! ) and not a single poster or leaflet offering friendly tips on feeding your newborn could I find, unless of course you had the serenely magic breasts or the handy bottle. I was invisible to the new-mum system. But you know what? I came to love the tube, the way it saved my daughter and helped her thrive. I slowly realised in the face of all the continued arguments about breast vs bottle that people were missing the point, essentially. It's fed that is best. I was bonding with Elin in so many other ways, maybe the feeds weren't such a big deal after all. She got plumper by the week after her gastrostomy (g-tube) was fitted and her quality of life improved immensely. How could I hate something that had given her all that? We have no stress over how much she has been drinking, there is no chance of her medication not being digested and we can control exactly the amount of nutrients she receives daily. When she is poorly, we can keep her hydrated easily without having to frantically try and persuade her to drink and I never have to worry about choking. So, as 'tube feeding awareness week' draws to a close, all hail the tube I say. If you see a mum out and about using a tube, ask them about it. The science behind it is quite fascinating and you might just make them feel a little less invisible, don't snap your head away as though open heart surgery is being performed on the sofa in front of you at Starbucks. I know I would always be happy to fill curious people in. It's only a tube. It keeps my daughter alive each day, it's a godsend. As for Elin herself? Of course she couldn't care less :-) Happy weekend folks.
My baby bunny in 2008 :-)

Mummy Times Two
My Petit Canard
xxxxxx

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Tuesday, 7 February 2017

A blog by any other name...

The eagle eyed among you will notice my little blog has had a bit of a face lift recently! Changing the template of my blog to something more aesthetically pleasing has been something I've wanted to do for the longest time, I just never got around to it. Also (and more truthfully) I had no clue how to!! It's not that I'm a technophobe by any means but if anything I want to do on the laptop takes longer than roughly 10 minutes then said laptop is in serious danger of being flung through a window. It's not so much the skills I'm lacking, as the patience.
So I'm really glad that I've finally managed to do it with the advice from a good friend whose own lovely blog is pretty much like a work of art (there are SO MANY amazing blogs out there but more on that another day) and I am now working on a template I am pleased with.
Following the new look of the blog I figured after 8 years it could do with a bit of a new identity, too. It's evolved quite a bit since those first posts and I think it deserves a full makeover. I've always known what I wanted to call my blog if I ever changed it, so coming up with the new name was easy because 'Making Lemonade' is basically what we do every day. Turn a bad situation good, turn your frown upside down, count your blessings, stay positive. When life gives you lemons, make lemonade (unless it's a really crappy day, in which case shout, rage, scream and cry to your hearts content until you are able to simply taste the tang and turn it sweet again) I have to concede that 'Making Lemonade' may not be the most original of choices, which is why, predictably, the blog name and URL has been taken, hence the addition of 'Mum' to the title. But I like it. It's what I am :-)
I'm also going to be changing the blog URL (address) soon to something that fits with the the new theme a little better than the ever-clunky sounding 'cerebralpalsyjourney'. Sadly, I haven't yet unearthed a way to do this that will re-direct all you lovely blog readers to the new URL once it's done. So you may discover one day that I've disappeared faster than Beckham's credibility. I'll still be here, but I will be under:
www.mummakinglemonade.blogspot.co.uk.
 I would hate to lose contact with you all! Thanks for the continued and lovely support :-)
xxxx




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Tuesday, 31 January 2017

Tearing down the wall...

It would appear with recent events that the world is about to get a whole lot more divided and segregated and that for the leader of the free world, hate really does trump love (pun entirely intended). The wall is going up, the borders are shutting down. Globally it's been a pretty thoroughly depressing January and I have no idea where it will end. Ignorance coupled with arrogance is such a deadly combination. But I won't start- I know nobody comes to this blog for political opinion! Luckily I experienced a little rainbow on another grisly day (both weather and news-wise) when I visited Elin's school today.  You see even Elin knows the best thing about barriers is when they come down :-) :-) If you'll pardon the extended metaphor, Elin has been knocking down a little wall lately and by doing so casually smashing her school targets -not to mention our expectations-yet again.
This video is so amazing I had to share it immediately. The game she is playing with her support worker is knocking down a tower of brightly coloured bricks (which have bells inside so she can also hear them) I know it might not seem like a lot. But it is pretty huge. The concentration Elin displays, along with the listening and looking skills are so clever! Then there is the fact that she is able to tie this all together and use her motor control skills to achieve her goal. She doesn't even stop there, she perseveres until she has demolished the very last brick and her expression clearly betrays her joy and that she is completely aware of her achievement. How I wish I could show video's like this to the Neurologist who told us when she was four months old that she'd 'never be a thinking person'.
I challenge you to watch this without smiling... :-)

Pretty good, no? Credit to her awesome Teachers and her Support Worker for their excellent planning, patience and tireless encouragement in extending Elin's abilities each and every day, which allow her to achieve in this way. As if that wasn't enough, after all that hard work today Elin continued to work on her targets by 'showing an interest in her own reflection'. Her focus is stimulated in the wonderful dark-room resource they have at her school, by using UV lights, brightly coloured wigs for her and in this case, flashing bunny ears. All of which make it easier for her to find her own reflection, which she clearly does on more than one occasion. No video this time but some pretty gorgeous photographs..



Here's looking at you, kid......
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Tuesday, 24 January 2017

Forget Me Not

Yesterday was six years since Elin lost one of her little friends and we lost any remaining belief we had at the time in life being fair.
Harvey was 12 months older than Elin. He was the first other child I met who had severe Cerebral Palsy following Elin's birth. The hospital's 'Home Advisory Service' put me us in touch with his family when Elin was tiny. They thought it would help.
At first, it didn't.
I was frightened. I was scared of what I saw when I first met Harvey. He was unlike any one year old I had ever seen, his limbs were awkward, he struggled to feed, he was silent. I had a glimpse of our future and I wasn't ready to accept that version of what was to come. It was very early on and maybe I wasn't ready. I can't believe it now, of course, but I cried when I got home. I'm ashamed of this fact, but it's true. I was terrified.
But his Mummy came to visit again. She talked so much sense and understood what I was going through in a way nobody else I'd met ever had. She put Harvey on my knee. Didn't ask, just put him there. I liked this. It hadn't occurred to her that I might not want to hold him , why would it? She was Harvey's champion, pure and simple. I noticed she talked to Harvey all the time. I noticed he was listening. I cuddled him tight.  He smiled at me.
Wow. Anyone who knew Harvey will never forget his mega-watt smile. It dazzled me. He laughed, I laughed too. Paul met him for the first time and  thought he was amazing. He couldn't understand what I had been scared of when I'd first met him. I couldn't really remember now either. I started to realise that there was so much more to this gorgeous little boy than I ever could have imagined the first time I saw him. How stupid was I, when I had a baby Elin in a car seat at my feet, to judge any child by a fleeting first impression. I would hate for anyone to do that Elin, yet there I had been. I guess emotions sometimes overrule the head. I was thoroughly ashamed and will always be, of how I felt that first day we met.
Harvey became the light in our darkness. He helped us to heal when we thought we were broken forever.
That smile helped us to make sense of our strange new world.
Then on the 23rd January 2011,  Elin was spending the afternoon at school - only her second week there. She was doing afternoon sessions to get used to it and would then swap to morning sessions whilst I was at work. (She would be picked up by the bus Harvey would be on, I was so glad she'd have a transport buddy. I made a book about her for her Teachers and in it I put a picture of her and Harvey and wrote "Harvey is my boyfriend") The phone rang. My heart plummeted in case it was school, what if something was wrong with Elin? It wasn't. It was far, far worse.
I still can't believe Harvey isn't with us. We keep his photograph in Elin's room and look at it every single day. Elin has lost other little friends since that day. It never gets any easier (and I'm glad it doesn't). But Harvey has to remain special to us, for being the reason I wasn't frightened anymore. For being the crack of light in the shadows we lived in during those early days.
On that day, when Elin lost her best friend, the Universe gained the brightest of stars.
Bless you Harvey, for all you were, are, and always will be to us, without ever even knowing it.
xxxxxxx





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Thursday, 19 January 2017

Post envy

I stumbled across another Mummy's blog today. One of her posts has been fairly widely shared on social media and it's not difficult to see why. I just had to share it on my blog. I desperately wish I had written it and even for a moment considered stealing the premise and re-hashing it in my own words. However, I could never have written such an eloquent and articulate post on this emotionally complex subject and I think you should read the original in it's full simple, honest, concise glory. Not only is it a very moving and engaging article but it's astonishingly accurate. At least in my view.
If I had a pound for each time I have thought this..
"Please don't praise me for loving my child with a disability"
Enjoy..

http://www.ellenstumbo.com/dont-praise-me-for-loving-my-child-disability/


xxxxxxxxx
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Saturday, 7 January 2017

Don't look back in anger...

I love old photographs. I realise this is hardly revolutionary, most people love old photographs. Nothing can quite give you the warm, fuzzy feeling that an old photograph can. It can remind you of a great time you once had, or of someone you loved that is no longer here. It can present you with moments you don't remember as a child, or moments you do. Places you lived in, people you knew. It's hardly surprising that when faced with a question of what objects they would run to save if their house was on fire, most people say photo albums. Photographs record the big moments forever..birthdays, christmas, holidays. We want to treasure them and keep them to took at when we are old. They also record the small moments. The forgotten and seemingly mundane. But not always the insignificant....
Yesterday I saw an old photograph that did not give me a warm fuzzy feeling, it made me sad. I should point out I do not remember being sad when it was taken, aside from the general sadness that coated absolutely everything at that time of our lives in a permanent thin film of disbelief and horror. I was enjoying time with friends and family, I remember it clearly. I know Elin had not slept again the night before, but that she was beginning to improve following her giant operation at Alder Hey. So when the photograph was taken things were, by enlarge, probably looking up for us at the time. I think I was  feeling more hopeful and positive than I had been in a while.
But when I look at the photograph I still see sadness and desperation in my eyes. It surprises me that I look really young. I suppose I was young, I was 25 when I had her. I didn't feel young at the time. I'm
pretty skinny (by my standards at least) from what must be the effects of constant worry (every cloud!!!) Worse, I see Elin. She looks sad too. She was- she cried a lot that day, I remember. She cried a lot every day at that age. She looks so stiff from the yet undiagnosed dystonia and the uncontrolled seizures we were still grappling with. I was so proud of her and I look back and she just looks so poorly and upset. I have to face up to the fact that she was. The first six months of her life were pretty miserable. For all of us. Many of my friends have had babies since I had Elin. I watch the purely magical world they arrive in following the birth and that magic is as foreign to me as it is to a childless person. We lived in permanent shock. It was like living in a horror story, where you just have to get up each day and keep living life as if everything is ok. The photo unwittingly takes me back to that time. I cry when I see it, for everything we went through and everything we lost and were grieving for. Mostly I cry for Elin. Where was our magic??
But then, looking back is ultimately empowering. How can you ever know how far you have come, if you never look back? Boy, have we come a long way with our amazing girl. This time is alien to us now. Sometimes I cry for what is past, sometimes  I cry for the future, but never for our present. The baby in the picture, stiff, unhappy, confused by the world, regularly in pain and simply unable to smile (it was ten months agonising months before she did) is in that foreign land of times gone by. How different she is now.  So I will always steal myself and be brave and stare these photo's in the face. They can't hurt me. She is the happiest girl in the world. She smiles and laughs constantly and brings so much joy to the lives of everyone who knows her.
It's a miracle and so is she.

It turns out our magical moments just arrived a little late :-) 
never stop believing, folks. Happy weekend xxxx

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