84 Days Later (part 4)

Notice that the stiffest tree is most easily cracked, while the bamboo or willow survives by bending with the wind.” Bruce Lee

This quote from Bruce Lee has been my inspiration this week. It came up on my CALM app during one of my meditation sessions. We are all guilty of thinking too much. Scared of failure that we spend our lives trying to approach a problem from just the right angle. Bruce Lee obviously believed in just cracking on. Not by being reckless, but coming out of your comfort zone and trying to make the best of a situation at hand.

Bamboo is quite incredible. It grows very fast particularly during the rainy season with much of the growth occurring underground. It may not look as impressive as the thick oak tree, yet it can withstand the harsh extremes of cold and hot. Most notably, it remains firmly rooted in the ground as it sways gently in the wind. Even if it seems to be bent over under the weight of bad weather, it usually pops back upright. So, be like bamboo. In your professional and personal life, choose your battles wisely. Compromise when it doesn’t go against your core beliefs. Allow for the growth to happen under the surface. If there is a lot of pressure, pause in order to not break. Whether it seems like a breeze or a storm, flow with situations as they change. Constantly assess new information as it comes in. Stay grounded in your values while understanding that flexibility is a sign of strength. I did a little research into the quote and found the above transcript on http://www.power-living.com

#HappyBirthdayAlfie

My Bruce Lee approach to our Action4Alfie social media #DuchenneAwareness campaign now seems to bearing fruit. Although, I have to say it’s been a tough old slog so far and the amount of tweets/DM’s I’ve sent has probably put me into the stalker category! For those of you that may not be aware of the campaign, here’s a brief explanation… It’s Alfie’s 6th birthday next week, as we’re in self isolation we’re unable to host a party for him with our family and his friends. Your children’s birthdays are important whatever your situation but since Alfie’s diagnosis we try to make them extra special and create the most amazing family memories. In the past for either Mila-Rose or Alfie’s birthday we’ve either been away on holiday or we’ve had memorable parties for them. This year although the circumstances are unprecedented it wasn’t going to stop us. It’s all about turning a negative into a positive so we’re hosting a virtual Toy Story party with our family and friends. We’ve ordered lots of Toy Story party decorations which Alfie is very pleased about and all his friends will be dressing up! This was then followed by my lightbulb moment! Whilst sitting at the end of Alfie’s bed after bedtime stories with him and Mila-Rose, the idea of a social media campaign for Alfie’s 6th birthday, Duchenne awareness and Stay at Home message (originally it was Wash your Hands). It was destined to work!

Alfie’s Virtual Party invitation

For those of you on Twitter, you’ll know that the #HappyBirthdayAlfie #DuchenneAwareness #StayHomeSaveLives campaign is well underway. I’ve tried everyone, tweeting the likes of Tom Hanks, Tim Allen, Prince William, Piers Morgan, James Corden (as Alfie loves watching his pranks on YouTube!). Basically A listers to Z listers and back again. Most to no avail and the frustration started to grow. Then came the Bruce Lee moment and like the bamboo, I paused in order not to break. I reevaluated and decided to use the resources I had access to, why I didn’t do this in the first place I’ll never know. Actor, Matthew McNulty (Deadwater Fell, Versailles, The Musketeers) had helped us out on quite a few occasions with our fundraising events, he very kindly read a story to the children in the audience at our screening of Toy Story. I messaged him to ask if he could help out and the next day his video message was in my WhatsApp inbox closely followed by videos from Ben Batt (Our Girl) and his wife, Rebecca Atkinson (Shameless) and Andrew Gower (Outlander, Carnival Row,Miss Scarlet and the Duke). Matthew will also appear in an upcoming episode of Doctor Who and we’ve also received a message from the Doctor herself, Jodie Whittaker! How amazing is that???

6 is the magic number

Louise (my wife), previously worked with (Lady) Sarra Hoy, the wife of six time Olympic champion Sir Chris Hoy. Sarra has been very supportive of our work to raise Duchenne awareness and has kept in touch via Twitter. She is also an ambassador of the charity Bliss: For babies born premature or sick. I got in touch with Sarra in regards to what we were doing and she and Chris sent their message over this week. Six definitely is the magic number! Check out the videos and share the hell out of them on our @Action4Alfie pages. Links at the bottom of this blog.

I’ll continue this week in my pursuit of getting more messages. My aim is to simply just make people aware of Duchenne Muscular Dystrophy. I do believe we could be just one retweet away from it reaching that all important person who could work with one of the Duchenne charities to guarantee access to the right care, to improve research and maybe even one day find that all important cure.

This is not just for Alfie, it’s for the whole Duchenne community.

Remember Be like bamboo.

Stay Home. Stay Safe. Social Distance.

Kieron #DuchDad

Action4Alfie (@Action4Alfie) | Twitter

https://www.facebook.com/Action4Alfie

3 thoughts on “84 Days Later (part 4)

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