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