This week Hero, and her team of spokesparents, was invited to the Cardiff headquarters and studio of Capital FM to talk about one of our favourite charities, Reach. Breakfast show presenter Polly and producer Andy welcomed our little Nemo as well as our friends and fellow Reach family into the studio as part of Global’s Make Some Noise charity day on Friday 6th October, of which Reach is a very grateful beneficiary.

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In the Capital FM studio with breakfast show presenter, Polly
Make Some Noise aims to raise awareness and much needed funds for smaller and less represented charities and, let’s face it, Reach isn’t exactly a household name. Why would it be, when only one in 32,000 babies are born with Hero’s condition? I certainly had never heard of it, or even knew that it was needed, before Hero burst into our lives. Yet need it we have, and it took an unexpected radio interview to make me stop and appreciate exactly what charities and non profits, like Reach and the USA’s Lucky Fin Project, have done for us over the past two years.

During the interview we were asked where we would be now if we didn’t have Reach and I had to pause and think for a moment. The impact Reach has had on our lives is subtle, almost like a soundtrack playing in the background, but it’s no less profound for that. Reach doesn’t jump and shout and make itself known, its just there and its presence is almost taken for granted, like a beloved family member.

Reassurance:

We discovered Reach, through the power of Google, on the very day we found out about Hero’s limb difference. In our welcome pack we received a book full of personal accounts of every stage of parenting a limb-different baby, from birth through to adulthood. This booklet, before I’d even met any other members or communicated above and beyond a simple application form, was my first little bit of validation. It was a written reassurance that it was ok to feel worried about our baby’s future but that, despite these worries, she would be absolutely fine. More than that; she would thrive!

Normality

Before our 20-week scan I had never come across anybody with a limb difference. My great grandfather lost his hand in a nasty farming accident, but sadly I never got to hear the tale in person. I’m a teacher and have met hundreds of different children over the five years I’ve been in education, and yet I’d never seen a child with a limb difference. Even now I’m aware of it, I’ve still not come across anyone outside of Reach or the Lucky Fin Project with a similar difference. I don’t want Hero growing up with a sense of isolation or of not fitting in, with the sense of being the only one. Thanks to these charities she can be totally and utterly normal, she’s one of a select club. Don’t get me wrong; to me she’ll always be unique and all the more amazing for it. But for her, when she wants to fit in and when she doesn’t want to stand out anymore, she doesn’t have to. Which, if Reach offered us nothing else, would still be enough.

A map book for the future

Reach, its website and its community, offers new parents of limb-different kids something of a road map. A heads up on what to expect and what really isn’t worth worrying about. One of the highlights in September was seeing parents sharing photos of Reach kids on their first day at school. To see those beaming faces, heading off to school with nothing but excitement (and maybe a few nerves) was wonderful for us who have all that to come and for whom school still seems like a big and a terrifying milestone. If we have any questions about hobbies, activities or even about driving (as far away as it is, the idea of Hero as a grown up is currently a banned subject in our household), Reach offers a wealth of experience and information on almost anything that might affect our children’s lives.

Adaptations

When we found out about Hero’s hand my husband was particularly upset, for many of the reasons I’ve blogged about before, but also because he’d always dreamed of sharing his hobbies of hockey and violin playing with his children. Now I know that kids don’t always do what we might like them to and even with two hands, Hero might have scoffed at the idea of trying either of those things. But to feel like he didn’t even have the opportunity to try was pretty hard. Enter Reach and all the Reach kids who have come before us and who have played their way to success both in the music room and on the sports field. Reach has shown us that anything Hero wants to do is possible. It might not look the same as when a two handed person does it, but it’s still a possibility. Assuming that’s what she’d like to do of course. If she’s anything like her mother she’ll prefer digging about in the dirt and wading in rivers to actually improving any skills she might have!

Community

For me, and I think for Hero too in the future, the Reach community is worth its weight in gold. We meet up with other local families two or three times a year and regularly keep in touch online. For the parents it’s an opportunity to touch base with others, to field any questions or concerns to a group of people who totally and utterly get it. Even if they don’t feel the same way you do, they understand it. You won’t find anyone else who gets it quite like your Reach friends do. They’ll reassure you when you need a lift, they’ll commiserate when you’ve had a knock and they’ll tell you gently that you’re overreacting when the tiny little things make you snap. And for Hero, they’re a group of people around whom she’s no longer the odd one out. Around whom she won’t ever feel the need to hide. These will be kids who she’ll grow up alongside will be her allies, her friends and her role models. She’ll be able to rant with them and compare stories and, like their parents, they will just get it.

I distinctly remember a moment of despair, not long after we’d found out about Hero’s hand, at the idea that our lives would be intrinsically tied with this charity forever. What an idiot I was. We probably will be involved with Reach for the rest of our lives, but that is going to be no hardship at all. That worry, along with all the others about Hero’s ability and wellbeing, has been trashed over the last year. I am incredibly lucky and proud to be a part of the Reach family and only wish everyone had a community like this with whom they could completely and utterly fit in and belong.

So I wanted to say a big thank you to Capital FM, not only for showing us around a radio studio for the first time, but also for making some noise about the little charities like ours. For raising awareness, among the general public but also in myself, of the subtle but dramatic job that Reach (and charities like Reach) do and the huge but often-overlooked impact they have in families’ lives.

Make Some Noise

You can hear snippets of our interview and learn more about Reach and Make Some Noise by tuning it to Capital FM South Wales 97.4 – 103.2 fm or visiting www.capitalfm.com/southwales/radio/ for the breakfast show tomorrow (Friday, 6th October 2017) between 6am and 10am GMT.

Make Some Noise in the comments section below: How have little charities impacted on your lives?

NemoBaby
#Itsabilitynotdisabilitythatmatters #LuckyFinsRock #Tenfingersareoverrated

 

One thought on “Making Some Noise about the big things the little charities do

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