Living with Cerebral Palsy 🍋🍋

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.....
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.


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


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


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:
 I would hate to lose contact with you all! Thanks for the continued and lovely support :-)

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