Monday, 30 November 2015

First gig

So last night Emily went to her very first music gig.

First one eh? So who would you take your young one to for their first gig? Take That? One Direction? Lil Mix? Adele?

Well I dare say Emily wouldn’t have turned her nose up at any of those. Especially Take That – you want to hear the story about where she wants “Take That” and “Gary Barlow” tattooing…

Perhaps not!!

Yes, this is life with a 23 year old with Down’s syndrome. It’s not dull and it’s never boring!
Now Emily loves music. That’s loves with a capital LOVES LOVES LOVES. She listens to music all the time. She sings Christmas carols in July and rocks out to anything from Pink Floyd to Rihanna, from Billy Joel to Katy Perry. She sings Yellow Submarine with as much gusto as those four lads from Liverpool.

So we were well overdue taking her to see a live music concert. We didn’t plan it out, it just kind of happened. I was looking through something on social media and you know what it’s like when you follow a link to a link and pretty soon you’re nowhere near the place you started. That happened and I happened to see a concert at Sheffield University. Now Emily has talked of going to uni many times and it’s a bit heartbreaking to know that it’s another dream she’s unlikely to realise. So this gave us a chance to take her to university, even for one night, and get her to see some live music at the same time.

So who did we see?

Dillon.

Dylan? Bob Dylan? Wow - amazing!

No. Dillon. 

Cara Dillon.

Who?

Cara Dillon. She’s an Irish folk singer with an awesome band. I’ve got to say that we chose the very best gig to take Emily to. My first gig was Genesis in Roundhay Park Leeds back in ‘87. Since then I’ve been blessed to see some pretty awesome acts including Springsteen. Earlier this year I fulfilled a lifetime desire to see Fleetwood Mac. These were awesome, awesome concerts and will live long in the memory.

But Cara Dillon completely blew me away. Blew us away. The best bit was we weren’t sat in row ZZ893 along with 80,000 strangers, we were on the third row from the stage with about 200 others in an intimate and beautiful venue.

From the very first song we were transfixed. Part way through Cara mentioned that she’d seen earlier in the evening that a young woman called Emily was going to be here and asked if she was. (At this stage I confess I did happen to post a picture of Emily eating in a restaurant pre-concert and tag Cara Dillon in to the tweet stating that it was Emily’s first gig.) Following our customary hands up and pointing down to Emily, Cara dedicated the next song to Emily. That was so lovely. What Cara didn’t know was that this song was THE song – the one and only song – that I had played for Emily in advance so she knew who we were going to see!

I thought that was amazing!

Cara Dillon was quite simply stunning. I have not heard a voice as pure as hers. Ever. The musicianship was exemplary. The songs and the arrangements were off the scale. This was music to warm your heart, to soothe your anxious soul, to snuggle up to in front of a cosy fire on a cold winter’s night in the arms of the one you love and know that all is well in the world.

Every song a new favourite. We were captivated. Spellbound. Speechless. Tears often seeking solace further down our faces.

Now before you start thinking that this is a music review, it's not - though I could be convinced to turn it into one – but I do think it’s important that I tell you about the lessons I’m learning in life.

Life with a child with Down’s syndrome, or other learning disabilities for that matter, is not always easy. Yeah, yeah, you’d worked that one out for yourself I know! But it’s important to make sure you do something for you every now and again to help you stay sane. This is not always easy but it is vital. Go book yourself some tickets to a concert, go to a spa, go do your thing, whatever that may be. But do something to help you feel alive.

You are alive.

It's easy to let the months and years slip by without going off to have some fun. We're fortunate that we can take Emily now and know that she's not just putting up with it, she's actually enjoying it. But it wasn't always like that and it may not be for you. So take up those offers of help (if you get them) and don't feel bad about living.

I've read something recently about our desire in life to be to live, to love, to learn and to leave a legacy. I think it's true. But we can't leave that legacy unless we choose to live. Now when I refer to legacy I'm not talking about money we leave when we die, I'm talking about the difference we make in life and what we choose to pass on to others. Our legacy may be simply bringing up our children the best we can, instilling confidence, teaching them to be kind, showing them how to love others who are not so fortunate.

And I watched Emily last night and I learned from her again the power of appreciation. We met Cara after the show and Emily just told her how amazing she was. We so often hold back from encouraging others but I love how there's no pretense with Emily, what you see is what you get and it's always life affirming.

Live. Love. Learn. Leave a legacy.

Oh…and if you ever get the chance to see Cara Dillon, take it and remember it was me that told you!





Em waiting for the start of the show





Emily with Cara Dillon


Thursday, 12 November 2015

It’s the small steps that take us on the journey

Are you in a rush? No I don’t mean about getting your Christmas shopping done. Are you striving to get to the next milestone? Are you desperate to get to where you see other people shouting about where they are? “Hey, look over here! We made it here and it’s great – why are you still over there? Seriously you should try a bit harder; you clearly don’t want it enough!” How we behave on social media is often an extension of who we are at home, only on a much bigger scale.

Now, don’t get me wrong, there are so many people who are achieving great things – Emily included, and I want to celebrate with those who are celebrating. In the world of disability and Down’s syndrome in particularly there is much to celebrate and to be thankful for. People with Down’s syndrome have far more opportunities than at any time in human history.

And with the right kind of support and with encouragement, they’re making something of their lives and it’s wonderful to see and long may it continue. And long may we see the photos and read the articles and rejoice.

But sometimes is it possible that we lose track of what’s real when we see what others are doing. Do you feel under pressure to achieve because that’s all you’re seeing on Facebook and Twitter and Instagram and who knows what else these days? So we take pictures of everything and put a positive spin on it to show we’ve not been left behind. And we kid everyone that we’re doing fine, that everything’s ok, yet inside we’re dying. Inside we’re screaming and hurting and silently we’re crying. (But you don’t get many Facebook Likes when you show a picture like that!)

In feeling that pressure to “keep up”, to reach that milestone, we can miss the most precious moments…

You know some journeys are meant to be taken at a slower pace, with smaller steps. We’ve just come back from the Highlands of Scotland. As we drove those narrow, winding, single-track roads we had no option but to take it slowly. We had to regularly stop so others could pass and they did the same for us. But as we did so we were able to look and to see and to absorb the awesome breath-taking scenery; the glint of light upon the loch, the grandeur of each mountain, the trees dressed regally in hues of autumn.  

So many times we gasped in awe.

We stopped.

Got out of the car.

And looked.

And smiled.

And breathed.

And enjoyed living in that moment.

You can’t do that when you’re living on the motorway doing 80mph all the time. All you’re doing is waiting for the crash.

So friends, you who are parents especially, can I encourage you today to take some time to stop racing to the next milestone. Slow down. Enjoy your children. Enjoy your family. Enjoy the opportunities that come your way and don’t beat yourself up for the things you can’t do, the appointments you’re late for, the meals you burn. Stop apologising for the articles you can’t write, the parties you can’t attend and for the kitchen that looks like a bomb site.

Stop.

Pause.

Look.

Smile.

Breathe.

Enjoy being alive in this moment.

Enjoy being you.

Celebrate you.

Celebrate those around you.


It’s the small steps that take us on the journey.