Skipping for Starlight

All I ever wanted was to be a Mum and to have lots of children. So when the doctors broke the news to me that Morgan had cystic fibrosis and it was quite possible that Aiden and my unborn baby, Finley could have the same genetic disease I felt numb inside.

That wasn’t part of the life I had planned, nor was it the childhood I had planned for my children!

It instantly felt like a dark shadow was cast over our family. But somehow I had to find the strength to carry on, which of course I did.

But that when the what ifs… hit me, and just when I thought I was getting my head around it, they would bombard me, over and over again.

What if there are germs on that toy, What if someone passes on their cold to them, What if they get really sick, What if they never reach their next birthday, what if they die? Day in, day out, trying to rationalise things or get a balance between normal and neurotic became mentally draining and began to wear me down.

Spending time in and out of hospital, much time alone with only my thoughts, along with the reality of how my whole could change in a flash, makes you reevaluate your outlook on life.

So very quickly I knew I had to find a way to get a handle on my thinking.

I realised I had two choices.

I could live in fear of what might happen or I could enjoy the time I had with my babies, doing what I had always dreamed of, which was, to be a mum.

For me, It was a no brainer! Morgan was laying in a tiny cot with an oxygen tent over his head and I vowed, from that day, I would do the latter. The boys would live the most normal, full and fun life possible in whatever time they had.

When you live like there is no tomorrow the world is a care free place! You are grateful for everything, you prioritise everything, and you enjoy everything.

The Starlight Children’s Charity has an instrumental part to play in creating magical experiences for children who’s tomorrow isn’t promised.

We were so grateful to Starlight, who granted Aiden’s wish to watch the 2010 World Cup in South Africa.

The memories we made there will last forever. Aiden still talks about our trip now, some 11 years later. The sound of the vuvuzelas , the street dancers and the ridiculously cold swimming pool at the hotel are all up there as fabulous memories, along with the buffalo that charged at the truck while on a safari, the rhino that followed us and the elephants that had no tusks. Plus so much more.

Aiden is now 21 and Morgan is 18. They reached every single childhood milestone birthday. And they continue to live their best lives.

If I could take away their Cystic Fibrosis of course I would, but I am truly grateful for the Mum it made me, because without CF I wouldn’t be who I am today and my kids wouldn’t have have the childhood they had.

I am taking part in the 100 Skip’s a day challenge in August, to raise money for other families out there that are giving their kids their best, fun, full and most normal lives possible in whatever time they have.

Please sponsor me if you can. I know it’s not pretty watching me jump up and down with every part wobbling around, but it wouldn’t be a challenge if I was super slim and fit now would it!

Life is what you make it! You have a choice – choose your best life!

Click the link below to donate

Thank you

Cystic Fibrosis Awareness Day

For those who don’t know two of my boys, Aiden and Morgan have Cystic Fibrosis (CF). CF is the most common inherited genetic disease which affects mainly the lungs but also all other organs in the body.

There is currently no cure, but really recently new drugs have been unveiled and are working miracles on 1000’s of people with the condition.

Today of all days, ‘CF Awareness Day’, Morgan, became one of the lucky ones to be given this new drug!

Kaftrio was initially rolled out to those with the most common variant of CF, but has since been approved for those with one common and one rare gene – which Morgan has.

It’s not all straight forward due to other complications in Morgan’s CF profile, which will have an impact on the dosage and combination of drugs that can be prescribed, but none the less, this is such an exciting day and one which we have waited, quite literally, a lifetime for.

It’s such a significant breakthrough which fills us with joy and hope for the future, not just for Morgan but for all those living with this condition.

Aiden has yet to be offered it, but hopefully his time will come soon.

We had always lived in hope that this day would come. We were always told – work as hard as you can to keep the boy’s lungs in the best possible condition so that they will be in the best shape if a treatment becomes available. 18 years later – here we are!

On such an exciting day, with the England football team striving to do their country proud, Morgan is continuing to work on achieving his goal! To be the first person with CF to become a professional goalkeeper. You never know one day he could be striving to do his country proud!

Today he signed for a newly formed team with Truro City, training with the 1st team and having the opportunity to play pre season games with them, where he will to do his absolute best to learn, develop and prove his worth for the future.

Just as all those involved in creating this new drug did for the Cf community, Morgan understands the importance of never giving up. His determination to reach for the top drives him forward everyday.

Morgan, we are so proud of you! Your determination to stay fit, exercise intensely and follow your dream has got you to where you are now. Keep going and never give up.

World Autism Awareness Day

Today is Autism Awareness Day. Being Autistic is not something to fear, feel
ashamed of, or be devastated by! Being Autistic is simply another way of

Being Autistic is awesome but we need to share this knowledge the
world. Society must stop seeing Autism as a deficit model but instead a
different model – we are all human and everybody deserves to be respected
for who they are.

There is so much false information around Autism and this leads to
generalised judgements being made.

Here’s just a few –

If you are autistic you can’t give eye contact – watch Aiden in this video, he
absolutely can!

If you are autistic you don’t understand humour – watch Aiden in this video,
he is more that able to laugh at himself and the situation with others.

If you are autistic you can’t work within a team – watch Aiden in this video,
he works brilliantly as a team player.

If you are autistic you can’t have friends – watch the video…

If you are autistic you can’t interact with others – yeah yeah you get – watch
the video!!!

So where has it all got confused?

It’s not that autistic people can’t do these things, it’s that quite often, the
environment they are in stops them from doing these things.

Our society is
geared up for one way of being – the neurotypical way!

But as you can see,
when you give an autistic person the right environment , their own
neurotype to work with, a non-judgmental team who respect, trust and
allow him autonomy, Aiden is able to interact, engage, build relationships,
have fun, complete a tricky task through problem solving, work as part of a
team and so much more.

So let’s share this knowledge and show the world that being autistic is not a
deficit model of being human it’s simply a different model and one that
need acceptance.

Let’s support those who diverge from the majority and
provide them with an environment they can thrive in.

Perfection is a perspective

Mother’s Day! So how was it for you?

I had a wonderful day. However, sometimes the pressure we put on ourselves to simply enjoy the day can be exhausting!

A day of appreciation for us Mum’s can sometimes and often unintentionally cause more stress than any other day.

We see all the other social media posts about how perfect their day is and we can sometimes feel envious of what others have.

However, perfect is merely a perspective.

I received a beautiful and thoughtful handmade card from my fabulous children, all organised by my kind and compassionate daughter, Jasmine. A beautiful soul inside and out. She, as was I, super proud that Aiden had willingly participated in the creation. A fine victory!

I received flowers from Morgan for the first time.

I was able to meet up with my amazing mum (and dad) and enjoy a cream tea at the beach, watch my children surf, walk the dogs, spend time with my husband and have a delicious roast dinner cooked for me.

All of which sounds perfect, and all of which was perfect, it was “my perfect”, but that doesn’t mean my day was flawless. I could have chosen to describe my day in another way.

My morning started with us running late. I arranged a time to meet my mum, which then changed 4 times because getting 7 people organised clearly takes longer than anticipated! Especially when you forget to wake one of them up!

“Where’s Jazz?” I say, as I head out to the car, only to realise she’s still fast asleep in bed!

Nip to the shop to buy the “homemade” scones for the cream tea – (homemade scones!!! Who does that???) Well, that didn’t work because they had sold out, so Eccles cakes were the make do substitute.

Aiden was unable to even acknowledge the fact that it was Mother’s day, and couldn’t bring himself to come to the beach.

When we returned the kids squabbled over the shower. Tears and tantrums erupted, just like a normal day – because it is a just normal day.

Timings didn’t quite work for the roast. Dinner was ready the kids weren’t! We came back from the beach later than planned, so we ended up eating at the table in shifts; between the boys physio and workouts, the continued hot water shower battle and Aiden completely overwhelmed simply because it’s Mother’s Day! (A day geared up to be a special and he can’t cope with the expectation.)

It was still my kinda perfect! Finding the perfect in my day meant I had a wonderful day. Picking out all the things that I didn’t have or that didn’t go to plan or that didn’t live up to the idealistic Mother’s Day expectations would have meant I’d had a terrible day.

You choose your day!

My day has been wonderful and equally exhausting.

I’ve now clawed some energy back by having a long bath, burning some candles while listening to my audio book – and I finished off by telling myself that I am bloody marvellous!

Letting go of the expectation can be hard but finding gratitude for what I have changes my perspective and allows me to see the perfection in my day.

Happy Mother’s Day to you all – I hope you can see the perfect in your day.

Authenticity is a right not a reward

Here’s a little update of what our wonderful Aiden has been up to during this last lockdown.

Special interests are a fundamental element to the happiness of an autistic person. Some interests come and some go, other interests stay for the duration. Amazingly, even someone who may lack focus on day to day tasks can have an immense ability to hyper focus on their special interests.

When Aiden is discussing his, he is confident, engaging and super knowledgeable. He is able to show true authenticity, he can be his true self and feel comfortable and safe.

Aidens specialisms have changed over the years but two have always been there – football and junk food, more importantly, sweets!

Special interests are not something that should be used as a reward to make someone conform. It is simply their right to be who they are. But they can be used in genuine ways.

Inventors are never told to stop learning, stop researching, stop being creative within their subject! They become inventors because of their ability to hyper focus, to be curious and to never give up. And this is to be celebrated.

So don’t stop your child’s passion, embrace them, learn from them, understand and accept their love, and when they are older they can live every day doing a job within their field that they absolutely love!

Now who doesn’t want a career that fulfills all their dreams!

Don’t use special interests as a throw away reward! Reward your child with the time, patience and respect that their knowledge and passion deserves.

Aiden would love to to like his new Facebook & Instagram page and share his story, and if you love sweets as much as he does maybe you could even try some out.

Alternatively they make great birthday presents!






Christmas preparation and autism.

Aiden loves Christmas, but his love comes at a high price, both literally for us and generally speaking for our whole family, including him.

Over the years we have learned how to keep Aiden’s anxiety low, mostly by having routines and keeping life predictable. But for the rest of the family that is often at their expense. Let me give you an example. Putting up the tree – what a lovely, magical and Christmasy family event, well that’s how I remember it from my childhood. It was so exciting, Christmas music on, all the family together, munching our way through the Quality Street tin (which was much bigger then!) I remember taking it in turns with my sister each year to being lifted up, by my dad, to put the fairy on the top of the tree.

Yeah, that’s not what what my children will remember. Aiden’s love for Christmas causes him so much anxiety that he he has to plan it to the enth degree.

His control led the rest of the kids to just back off and leave him to it. Aiden needs everything to look the same each year, so the tree goes in the same place with the same decorations and is put up on the same day. The same with his light display and with every decoration in the house. The joy and Christmas cheer is somewhat transformed into a militant mission with strict procedures.

Now the others are older, they now fully understand and accept that Aidens control is a need as opposed to a want but that doesn’t stop me from feeling like they didn’t have the same magical experience that I did. So this year, we came up with a plan.

As it turns out, the boys, being boys or being teenagers, I’m not sure which, are not bothered about putting up a tree or feeling Christmasy. But, I knew Jazz still wanted to be a part of it. So this year, we bought Jasmine a new little tree to go in her bedroom, some lights to decorate her room. We put the Christmas music on, ate the chocolates, from the now tiny tin, and danced around the tree like no-one was watching.

We will always celebrate the fact that Aiden loves Christmas, especially after so many years of us getting it so wrong for him. Back then, it was hard for us to take a step back and understand that we were the ones that caused the meltdowns by trying to bring surprises and make things magical. But we got there in the end. It’s amazing that he still loves it.

However, as much as he loves it, Christmas still causes him anxiety. He still needs to know what presents he will get and we still have to give them to him in the same way every year. He still has to take control over anything Christmas, and he still has no concept of money. But he now finds pleasure in giving presents to others, and we take that as a massive win.

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