Mum Making Lemonade

Living with Cerebral Palsy 🍋🍋

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
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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 then 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. Watch a bit of Netflix. 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
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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