Reflection

So much has happened in 2019. We have so much to be thankful for, so many people to remember who have helped enhance our lives, and all for the same reason – William. His story has touched so many.

At the very start of this year I made two big choices to step down from volunteering at two charities to focus on my family and our home. I’m so glad I did this, and not just for the reasons of giving myself time to focus on our life, but also to ensure I was supporting what was right for us and our son.

Our big build had been in the planning phases for 3 years. Not only had the planning and detail of this build been going on since we moved house and William was diagnosed, but so had the saving and subsequent fundraising too under our new cause ‘Defending William against Duchenne’. So many amazing events took place — we cannot wait for more in 2020 and beyond, only when Duchenne is cured will we stop raising money and awareness.

The Big Build planning started in February 2016 – one month after diagnosis and also moving house. After being on the waiting list for over 6 months I finally met with the Occupational Therapists. Then followed many more meeting with council ‘experts’, architects, builders, quotes …….. finally we got our dream team with TP Building and in February 2019 we started our very own ‘Big Build’.

We were able to live at home until May when the knock through happened and only a few walls remained! We moved into my parents house for 6 months – true legends they are letting us stay for that long!

It seemed like a lifetime of building with thousands of decisions every time I visited the site – but it truly wasn’t. It was the most efficient and amazing build (& my last!) that I have ever known. We were back home within 9 months of the whole thing starting – when you look back on it all it’s just crazy. I became indebted to so many people, so many companies over those nine months that I still don’t quite know where to start: come 2020 I will reassess how to thank them all again!

It has been not only a year of big changes but a decade of life changes including a wonderful marriage, children and home moves/builds. Unfortunately it has also been a decade of life changing, heart wrenching pain with William’s diagnosis. It’s not something I still really ‘get’. I still feel the pain from that day, but try to focus on the positives of my beautiful family and our supportive friends.

Thank you everyone for supporting me through my thirties – here’s to my forties and ultimately a cure for Duchenne, my only wish in life.

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