The amazing supporters cheering kids like Kitty on

Being surrounded by people with a limb difference isn’t something that happens every day. Before I met Kitty, it’s not something I’d ever encountered before, so standing in a hotel lobby in Leicester where probably a third of the people were like her was unusual to say the least.

This weekend we attended our first family weekend with the charity Reach, who support the families of kids with upper limb differences. I was a little apprehensive on the drive down, as it’s the first time we’ve done anything linked to her arm, but the second we walked through the door, that nervousness melted away.

Everyone was so welcoming, so friendly and so open. Within minutes, we’d been approached by the parents of a 21-year-old with an arm like Kitty’s to tell us how he’d driven them there in his adapted car. So many people came over just to say hello and coo over Kitty – and her arm. ‘It’s so cute – reminds me of my little boy,’ said one mum. And of course, Miss Kitty loved being the centre of attention.

We met families I’d had messages of support from on the Reach Facebook page when we first found out, and even a family who live less than a mile away from us. We learned about bionic arms, 3D printed limbs and heard some really inspiring stories from people who haven’t let their difference stop them from doing anything.

But I think the thing that affected me the most was seeing the kids – from toddlers to teenagers – just getting on with being kids. Running round messing about with their mates, getting dolled up for the gala dinner. All of them different but just the same, and all so confident.

By the time we checked out, I found I’d stopped looking to see if our fellow guests were Reach kids or not. And I’d forgotten that Kitty has something different about her too.

I feel so grateful to have found Reach and feel so positive about Kitty’s future after this weekend. These kids do things I would never dare attempt and with them (and us) cheering her on, there’ll be nothing our incredible Miss Kitty can’t do*.

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*Except sleep. After an exciting day making new friends that was one thing she wasn’t capable of. Someone pass the coffee…

Visit Reach at http://www.reach.org.uk – they’re a small charity that do amazing work, so need support. If you can donate or help out with fund-raising, you’ll make some incredible kids very happy.

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If I’d known then what I know now… a letter to the old me

Dear Past Me,

There have been lots of times when I wished I could have told you what was coming. Given you a heads up and told you ‘everything’s going to be OK’.

It was a year ago that we found out our baby was missing part of her left arm, and now, more than ever, I wish I had a time machine to go back and hand you this letter.

Right now, you feel like the world has ended. Like you’ll never be happy again. But just take a look at this:

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This time next year, you’ll be spending all your time having fun with this little dude. Playing and giggling together. Glowing with pride as she dives under the water at swimming and comes up smiling. Watching in amazement as she scoffs down Japanese food without batting an eyelid. Making an absolute idiot of yourself just to hear her laugh.

She’ll be your best friend, your greatest achievement and the love of your life, and what you feel like now will be nothing but a distant memory.

So please, 2014 me, don’t cry or mourn the life you thought you were going to have. Look forward, because everything’s going to be OK. Actually, it’s going to be brilliant.

Lots of love,

Present Me

P.S. Sleep now, while you can. Seriously. At every opportunity.

‘Just one of those things’… a strangely reassuring diagnosis

After losing a baby in January 2014, I was equally thrilled and terrified when I found out that I was expecting again that July.

To allay our fears, we paid out big money for the latest DNA testing to give us as much information about our child as possible and – after a normal 12-week scan – were over the moon when our test results came back as ‘low risk’.

Obviously, no test is infallible, but we were happy with our odds, so told our family and friends the good news.

But the sharp eyes and perseverance of a lovely sonographer* at the 20-week scan put an end to that unfettered excitement.  After much checking and double checking she was sure. Our baby was missing her lower left arm.

After I’d stopped crying, I started Googling, and found loads of sites and notice boards with posts from people just like us. It seemed this had happened to thousands of other families too. Of course, there were no definite answers and many horror stories (after all, who shares good news on the internet?), so we were still none the wiser, and now more worried than ever. Could her arm just be a sign of something much more sinister?

God bless the NHS, we were at the foetal medicine unit the very next day, for the most thorough scan and an ECG to check for the telltale signs of underlying conditions that may have caused our baby’s left arm to not develop. So far, so good.

The consultant ran through every possibility, including Edward’s syndrome, which could mean the baby wouldn’t make it to term, and if she did, she’d live a very short time with many health problems. Or it could be ‘just one of those things’. So the choice was amniocentesis or CVS with a 1 in 100 chance of miscarriage, or ‘wait and see’. With odds of 1 in 120,000 quoted on our DNA test results for Edward’s syndrome, we went with ‘wait and see’.

Over the next 14 weeks, I had several more ultrasounds where no other issues were apparent. But as a lifelong over-thinker, I spent many a sleepless night imagining the worst.

Our big breakthrough came with a visit to a clinical psychologist on the first day of my maternity leave. Within minutes of us arriving, she dismissed Edward’s syndrome (‘very unlikely’) and proceeded to tell us about all the kids she works with who lead incredible lives with a missing limb.

We talked through our concerns and how we planned to manage other people’s reactions, and as we shared our plan of action, I realised how well prepared and positive we were, and how excited we were to meet our little girl.

And as we got up to leave, the psychologist said the simplest, most reassuring thing we’d heard since the 20-week scan.

‘She’ll be just fine you know, and she’ll amaze you every day’.

Five weeks later, at just before 2am on Good Friday, the midwife plonked a chubby cheeked little baby on my chest after 10 hours of labour. I didn’t even notice her arm at first- just how steadily she held my gaze and how beautifully pink and pudgy she was.

And there and then, it was clear that the psychologist was right.

Day one and already amazing.

(*we later discovered that very few cases like Kitty’s are diagnosed antenatally, so we can’t thank that sonographer enough. Having five months to prepare made all the difference.)