On MY One Hand

This is a blog post about living life with one hand, only this one is a bit different to our others as it’s about me, Marla’s Mum, aka Joanne to some.

Ok so I have two hands, I was born that way, and I’ve gotten through most of my life using both of them.  In my mid-twenties I started having a problem with my left wrist.  I struggled for years with it being in pain, but after numerous visits to GP’s, a couple of xrays, referrals to physios who told me it would never be perfect and generally not being taken seriously or referred to anyone that could help me, I gave up asking for help.  I struggled with a lot of things and often wore a splint when it was really bad, I favoured my right hand for most things and bit by bit my wrist got weaker and weaker.

12 years later, I spoke to a friend who was a physio to see if I could get some help with exercises I could do to strengthen it. She had a good look at it and told me I needed to get a referral to a specialist as something was clearly not right with it and exercise was not the answer.  She recommended Mr Pailthorpe in Reading who specialises in wrist and hand orthopaedic surgery.  I went to my GP and told him I would pay privately to see him, 2 weeks later I had an appointment.  A week later I had an MRI and another week later I was back in Mr Pailthorpe’s office hearing the results that I had a Ganglion buried inside my wrist and the brilliant news that he could remove it, although he did warn me that it could form again (blah blah blah, yep, got it, just get it out, ok). 6 weeks later I had the surgery under local anaesthetic.  I had physio afterwards and a hydro-cortisone injection a couple of months later to help it heal up and gradually I managed to get back a lot of the mobility.  It wasn’t perfect, after 12 years of not using it properly I didn’t expect it would be, but it was as normal as I was going to get and I was so happy to be pain free and have 2 hands to use again.

When Marla was born 2 years later I had a bit of a reality check and I reflected a lot on my attitude back when I had been in pain with my wrist, and specifically after my surgery when I couldn’t use my hand at all for a few days.  I admit that I’d been a bit of a baby and using words like “I can’t do that, I’ve only got one hand” sprang to mind.  I had to laugh at it and imagine what I would have said had I gone through that AFTER having Marla, meeting all the amazing Reach kids and seeing what they can do.

However a few months ago I was playing on our bed with Marla’s little sister, Summer, who was kicking her legs around and managed to catch me on the wrist.  It was ok for a couple of days and then oh boy, the pain, and that same feeling I had when the ganglion was there – it’s all back.

I’ve managed to get a referral back to Mr Pailthorpe and he’s arranged for me to have an MRI next week, I will be stunned if there isn’t a ganglion in there again because it just feels exactly the same.  I’m back in my old splint again and favouring my right hand for everything, but hopefully I can have it sorted out before it causes any further weakness.

Marla is finding it amusing to teach me how to do things with one hand.  But the words “I’ve only got one hand” are not even considered this time round.  Whenever I think I can’t do something because it’s too painful to move my hand, I now wonder how Marla does it with one hand and have a go at it that way.  I do have a new appreciation for why Marla likes to sleep so much – it is extremely tiring doing everything with one hand, thankfully she doesn’t have to live with her little hand being in pain too, but I’m sure as she gets older she will find she has back, shoulder and neck problems from favouring one side all the time – mine is murder right now, and unfortunately I end up missing a lot of my pilates which would help, because of my wrist being in too much pain.

When Marla was born my partner and I were of the opinion that we didn’t want to get cosmetic prosthetics to hide her hand, but that if something could be used for a tool we would welcome it.  Now my opinion is very much veering towards encouraging her to use a functional prosthetic as much as possible – if nothing else to help balance out her posture and any stress on her back.  The thing that limits this currently is the cost of functional prosthetics, we just need the technology of all these new devices coming out (cheaper to produce and offering more and more functionality) to catch up with the small size of her so that she doesn’t have to wait until she’s an adult to start using them.  We have had a cast taken for a split hook to be made for her, it’s not going to be the prettiest of tools, I’ve seen some that look quite barbaric, but I hope she will take to it.  The problem is with her being 4 years old and pretty capable of doing most things, convincing her to wear a cumbersome and ugly thing on her little hand is going to be a challenge.  Thankfully the limb centre can make her split hook with a laminated cover over the socket, and it can be done in any colour or fabric that we can think of, they can even do carbon fibre which Daddy is keen on, but maybe something a bit more girlie?!  So while they are busy moulding and making it, we have 2 weeks to come up with the perfect look for it to make it cool enough to wear – all suggestions are welcome here!

 

Call The Midwife

Continuing the restoring of our old blogs, this was probably my favourite post that I have written to date…

Originally published on 18th January 2016.  Just as a side note – I’m now a massive fan of the show.


Not a show I normally watch, my mum’s really into it and keeps saying I should watch it, and I likely will when I get some time, but after hearing so much about last night’s episode of Call the Midwife and the BBC’s handling of the subject of a thalidomide baby born in the 60’s I decided to download and watch it.

I’m so glad I did, although I spent most of the episode absolutely in pieces and was quite happy to hear Marla shouting from her cot for me so I could go up and give her a very tearful cuddle halfway through.

I won’t say any more about the episode, as I wouldn’t want to spoil it, but it was very respectfully done.  Hats off to the BBC for it.

On the one hand, it reminded me in so many ways of Marla’s birth and has made me reflect back on the day.  The looks around the theatre when she was delivered, I imagine were the same – although I wasn’t aware of them at the time, as I was lying on an operating table with my belly cut open, waiting for them to tell me everything was ok with the emergency c-section and that Marla was fine – Simon told me afterwards that everyone just looked around the room at each other like they didn’t know what to say and he knew there was a problem, he just didn’t know what.  Then she was whisked away before either of us could see her, while the paediatrician examined her to check her over – presumably looking for any other birth defects.  When he did finally bring her over to us his handling of the situation had room for improvement (to say the least), rather than telling us what the problem was, he had her wrapped up so we couldn’t see her hand and was really vague about giving us information – and to top it all off he actually asked me there and then (while I’m being sewn up) what medication I had taken while pregnant.  So of course the first thought I had was “this is my fault “.  The Midwife came over and gave me the biggest hug and looked really annoyed at him.  I will always appreciate her for that.

I spent the first night of Marla’s life, lying wide awake in the post-op ward, looking over at her in disbelief and thinking that it was all a mistake, that she can’t be mine, that I’d go to sleep and wake up still pregnant and none of it would have happened.  Finally it dawned on me that it was happening and all I could think of was all the things that she would never be able to do: tie shoelaces, ride a motorbike (although in hindsight this one is daft as we won’t ever let her near one – we are such hypocrites!), the list went on and on in my ignorance.  It was a very emotional time and I didn’t feel that “rush of love ” that people talk about (although after talking to many other new mums it seems it’s not that uncommon not to anyway, but the traumatic birth probably had a lot to do with it), I felt ashamed that I hadn’t bonded with her and embarrassed about the thoughts I’d had.

But then the next day I was moved into a private room to recover from my surgery for a few days and finally get some sleep, I remember looking over at her and BAM! It hit me just how beautiful she was.  I completely and utterly fell in love with her and realised that it didn’t matter about her hand, we would support her however she would need it all her life.  Since then, through meeting other kids like her through Reach and seeing her grow for the last 2.5 years, I realise just how ignorant my first thoughts were – there really is very little she won’t be able to do, so far there hasn’t really been anything, certainly not of any importance, she just does things a little differently sometimes but she continues to amaze us.  The only thing I would like to change now (realistically, as obviously I can’t grow her a new hand!) is other people’s attitudes to it.

On the other hand, the programme also reminded me how lucky I am for what Marla has, but also to be thankful for her being born in this decade.  With all the positive focus on people who live with differences and disabilities these days, she will get the same opportunities as anyone else rather than being told she can’t do something.

This is Marla on her 2nd day, not even 24 hours old and completely unaware of all the fuss she had already caused

My First Blog and On The One Hand’s Beginning

In an effort to reupload some of our old blog posts, I’ve started sifting through the data backup that I managed to get from the old site and came across this first blog I ever wrote – it seems fitting that it should be the first one I repost.

This was first posted on 16th January 2016.  Marla and Phoebe were around 2.5 at the time.


So this, as you might gather, is my first blog. No really, my first ever. I’m still finding my way around this wordpress milarky, but I thought as a first attempt I might give a little background into why Tash and I wanted to set this up.

A week ago we spent the day at Cobbs Playbarn near Hungerford (well recommended by the way for local mummies), so that Marla and Phoebe could spend a bit of time together.  Marla had been saying a few things lately about her little hand and starting to get a bit upset about it, so I figured it wouldn’t hurt for me to arrange a play date for them so she could see she wasn’t the only one with a little hand.

While we were there some boys, maybe 4 years old, saw Marla and mentioned her little hand. Tash was supervising the the girls around the barn at the time as I was feeding Summer, and she spoke to them, explaining that they were just born a little different, just like they were probably different in some ways too; the standard stuff we try to tell people that ask. Thankfully Phoebe was also nearby at the time and they could see that she wasn’t the only one – solidarity in numbers as she put it.

A little later I overheard them saying “there’s that scary girl again with the little hand “, I’m ashamed to say I didn’t say anything. I got upset. They were on the other side of a partition which would have made it difficult, but that’s not why I didn’t. I just felt so sad for her and upset that she is going to have kids saying these things to her all her life that I was just stunned into silence. In hindsight I thought of many things I’d liked to have said, but in the moment I was just stunned.

Tash and I spoke about it at the time, but this evening we chatted by text about it, this was the gist of our conversation:

We had a girl (maybe 8yo) very politely ask what happened to Marlas hand today, she was very sweet and accepted our explanation with no worries, just made a sad face, then Marla decided to climb up the chains to get to a slide, demonstrating that it wasn’t an issue. That I can deal with so much better than horrible little boys calling her scary.

Yeah, it always hit’s me like a brick when they are rude. 

I lose count of how many times I wish Marla had two hands, my heart breaks for her for all the times she’s going to have to deal with people being mean or stupid about it. I can see why people would want to hide it, but I’d rather she was confident about it.

Yeah i agree, I hated being bullied in school and never wanted that for my child but I know it’s going to happen 🙁

Simon keeps saying that people who are confident and laugh things off tend to be bullied less than those who are insecure and respond negatively to it, I guess it’s that thing of people get bored when they don’t get a reaction. I wish I knew how to react to things like those boys to give Marla the confidence and ammo she will need later when she has to deal with it herself, but it always just floors me when I encounter it.

Maybe we should set up a support group for parents of bullied kids to help come up with ideas of how to deal with it. 

(The next day)

I’ve just given myself a bit of a telling off and resolved myself to stop getting upset about this. If I get upset about it (even inwardly) Marla is going to pick up on that and she will get upset about it. Thats hardly going to inspire confidence in herself if I don’t show it myself.
So. I need to suck it up, come up with some witty comebacks for people that say the wrong thing, and start leading by example.
I’m thinking I might start a blog about this, what do you think and how would you like to collaborate on it?

I also thought that maybe it might be nice to put photos of Marla on it, but without her hand in it – kind of a “here’s my funny, beautiful daughter, yeah she had a hand missing but you don’t need to see it and it doesn’t matter “. That way I can show her to the world the way I see her.

 

And that’s how it started.

15 Minutes of Fame

The last couple of weeks have been mad in the Taylor-Trigwell household, so mad I thought I’d write a post to try to get my head around it all and to let our readers know a little about what we’ve been through in all the excitement.

So as everyone already seems to know, Marla had a 3d printed hand made for her by Andrew Lindsay at Newbury Hackspace.  Around mid -December we were invited down to Hackspace for her to receive it.  Our friends Stuart and Jo were going to be there too as Stuart had made the introduction for it all to be possible and as her godparents they obviously wanted to be there to see her open it.

Smart phones at the ready… We all filmed Marla opening it and got lots of photos too.  We put a few photos onto our Facebook pages and Instagram accounts and they were met with some great responses.  Our Facebook page on average used to get around 100 people reached when posts were added, this photo reached approx 7,000 people in a few days.  We were over the moon.

Andrew fitting Marlas 3d printed hand

Then I decided to put this one on our Instagram account, and within minutes I had to turn off the notifications on my phone while I was bombarded with likes, follows and some really lovely comments.  We suddenly went from 30 odd followers to a couple of hundred and gained a few thousand likes.

Marla drawing on a whiteboard with her 3d printed hand

Ok, so not huge, but more than we were used to and it was enough to get the attention of a reporter from the Newbury Weekly News who contacted Stuart and myself the next day.  We had a telephone interview with him and the next day a reporter came out and met us at Hackspace to take some more photos.

We were told they were putting off releasing the article until the New Year so that they could reach more people with such a nice story, so in the meantime I started editing the video clips that we had taken and finally enlisted the help of my brother over in Vancouver to help with it – it pays to have an editor in the family.  He put together a great clip and added music to it, giving it a really light and cheeky feel – it became immediately popular on Facebook and Instagram, with posts reaching over 17,000 people with over 7,000 views and it’s been shared all over the place.

Then Thursday 12th January arrived and the article hit the paper.  They said they had wanted to wait until the right time, but what we didn’t realise was that it would be on the front page.  When we went into our local paper shop to buy our copies everyone in the shop recognised Marla and said how great it was.  She just looked a little confused bless her.

We received quite a few messages from friends in the area who suddenly saw Marla in the paper, but I also received a message on Facebook from a BBC producer.  She said they wanted to do a story on South Today and arranged for a reporter to visit us at home the following Tuesday – my first thought was, oh [crikey] the house is a mess, and spent the next few days panic doing all those jobs that have put off for too long.  Monday was spent on some last minute cleaning (meanwhile I’m feeling most impressed that it hasn’t returned to it’s normal state already) and a panic clothes shop with my friend Maja who reminded me that I have nothing to wear.  3 hours of searching for the right clothing that wasn’t trying to dress up too much but also trying not to look too much like a stay at home mum with the usual dubious stains that go with it, and we were ready.  We had a call from the BBC on Monday evening to confirm details and also to invite us onto BBC Radio Berkshire on Wednesday morning for a live interview.  That one got me panicking a bit – Summer, and Marla, live, on air, early in the morning, what could go wrong?  Everything.

On Tuesday at 9:30am Little Daddad turned up at the house and took baby Summer out for us, then at 10:30 James Ingham arrived from the BBC and after some quick introductions he got stuck into filming Marla playing with and without her prosthetic on.  He interviewed me on the sofa and copied the files we had from Marla receiving her hand, then we drove round to meet Andrew at Hackspace to do some further filming in there.  By this time Marla was getting pretty tired and grumpy so it was time to call it a day.  Later in the evening we realised James had edited Marla’s video that my brother had made and uploaded it to the South Today website, and it was already getting a lot of views, we wondered what the next day was going to have in store for us.

On the Wednesday morning we were all up at 6am, loaded the kids into the car and set off into rush hour for Reading and into the BBC monitoring station in Caversham.  On the way we listened to Radio Berkshire and heard a the buildup for Marla coming in, then we heard the news come on and my voice came out of nowhere – they had used some of the interview that was filmed at home the day before, I just cringed – I guess no one likes the sound of their own voice.  Marla looked pretty bemused by it all, but clearly couldn’t understand what on earth was going on.  I went to the bbc.co.uk page to check the links and saw Marla’s video on the main page!  I really wish I’d taken a screenshot of it because that’s probably a once in a life-time thing.

At just after 9am all 4 of us piled into the room to talk to Andrew Peach.  I was asked to talk about Marla’s birth and her limb difference, Simon managed to talk a bit about the support we have had from Reach, but shortly after that while I was being asked about her prosthetics Summer started having a massive meltdown and screaming her lungs out.  She didn’t calm down despite both Simon and I trying desperately to pacify her, so he ended up taking her out into the next room, leaving me and Marla.  I got a chance to talk about the misconception around the 3d printed hands, hopefully getting the message out there that while they are brilliant, and a great psychological boost to her confidence to get a great first impression from people, they aren’t a replacement hand.  And I also got to mention our blog too, so I was pretty happy with how it all went.  Marla was really good throughout it, with the exception of whispering “mummy, mummy, I want chocolate” in the background, dropping her Dory toy and annoyingly correcting Andrew Peach that Dory is a girl, but they all added to her charm.  She got to do a high-five with him before we left and they took a photo for the website.

Later that day we watched the South Today episode and saw the 2 minutes of footage that made it through to the final edit – there was a fair bit cut out, but what was left was done well, so we were happy with it.  Marla again watched herself with bemusement – I think she’s just so used to seeing herself on iphone videos that we take that seeing herself on the telly wasn’t really registering as anything unusual.  Still we have recorded the episode to keep for her 18th birthday or possible future blackmail with her teenage self.

This morning the local freebie paper landed on our doorstep with the NWN article and photos on the front page, Marla is getting quite blaise about it now, I think she thinks it’s normal to see your face in the newspaper each week. She’ll probably be quite disappointed next week when it’s all blown over.

It’s not all over yet though.  Marla’s video on the South Today website is still meeting with huge positive response.  It’s been shared everywhere and I’m frequently getting messages from friends or being tagged in random posts.  My brothers YouTube video is suddenly getting a lot more views.  A few more articles have appeared mentioning it too and NADHack are getting a lot of great coverage, so we’re really pleased about that.  Andrew said he’d like to make more hands for other kids like Marla too, I think he’ll probably get to do it too.

Final thoughts on the whole experience – it’s been fun, I hope we’ve managed to get a positive message across that although Marla loves her new 3d printed hand, gets that great psychological boost of confidence from it and I’m sure will enjoy using it and impressing people with it for many years to come, hopefully people will realise that there are kids out there like Marla and that they aren’t to be pitied or prayed for, they are just as capable as everyone else. As Reach says “It’s ability not disability that matters”.  There have however been a few things left out of what we’ve had to say to the media, and hopefully nothing came across as negative, particularly on the NHS ability to provide prosthetics like this – we have a great relationship with our limb centre and prosthetician and have received many useful tools and prosthetics from them and can’t fault what they have provided for Marla.  Something I’d like to go into more detail in on another post one day.