How do you cope with these things? You simply have to find ways to manage. You devise coping mechanisms and keep yourself busy. I avoid situations that lead to solitude or silence, instead preferring to be busy.
The above is a quotation from Colin Parry, father of Tim Parry, a 12 year old boy who was tragically killed in Warrington in an IRA attack in 1993.
Looking back at the Warrington bombings, the effects it had on the families of the 2 boys that lost their lives in the attack were and still are utterly devastating. Personally, I used to think that Colin Parry looked like he was ready made to deal with the situation he’d been dealt with. He had a strength and determination that seemed to carry him through. He was resolute.
Little did I know at that time that it was actually his coping mechanism. It was his way to do something for the boy he loved that was so tragically taken from them at such a young age. Our circumstances are very different and I could never imagine what the Parry’s have been through but we have also had to grieve the loss of the life we planned as a family. Things won’t ever be ‘normal’ again for any of us but we’re ever so determined to make life special.
Colin and his wife, Wendy have never had justice for their son’s death, nor have they ever craved it. For them, it was more important that his name was honoured by moving the peace process onwards. Their son lives on through a charity they set up in his name. The Tim Parry and Jonathan Ball Foundation for Peace strives to help victims of terrorism, whatever age, whatever the circumstances of their loss. Has this been their saviour, their comfort? Probably yes.
Not until Alfie’s diagnosis did I realise this type of strength and determination existed. I used Colin Parry as an example to myself of someone who fought hard for their son and most importantly their family.
I found that strength and focus. In late March 2018, Action4Alfie was launched.
I had deliberated on starting a crowdfunding page for Alfie after his diagnosis. 2 very good friends, Brad and Russell convinced me to ‘push the button’ and make it happen. When I launched the Action4Alfie Justgiving page, the kindness and generosity of our family and friends was just so overwhelming. Within a couple of days we had reached over £1,000. It then just kept growing and growing and growing. Over a year on and we have raised over £11,000. Amazing!
To think that I’d almost not ‘pushed the button’. My reasons for not doing so initially was that I didn’t want to appear to be personally asking for money. I tend to overthink sometimes and wondered what people might think. On the other side of the coin though, we had to do the best for our son who one day might require funds to help him in the future. I think anyone in this situation would do the same for their son/daughter. It’s a no brainer really.
As the funds grew I then wanted to start some fundraising events. It gave me a focus and unbeknown to me at the time it was rapidly becoming my coping mechanism. In organising events, I wasn’t thinking solely thinking about Duchenne but more about what I could do to help deal with the hurt and the pain the diagnosis had caused our family. It helped me forget but most importantly it felt like I was doing something and at the same time creating memories for our family.
Our first event was to hold a screening of Alfie’s favourite film, Toy Story at our local parish church. With the help of the amazing Leigh Film Society this was made possible. We also had a guest appearance from the actor, Matthew McNulty. He very kindly read stories to the children that evening. Something Mila-Rose and Alfie still talk about to this day. My ROCK, PAAAAAA-PER, SCISSORS rendition isn’t a patch on Matthew’s version though!
Matthew has also since been a great supporter of Action4Alfie and has supported us by providing signed TV memorabilia for us to auction (details to be announced soon).
Since then we’ve held an online raffle for a signed golf bag that Justin Rose kindly donated, had a band night, friends have held fundraising evenings, competed in running events including the Space Coast Marathon in Florida! Everyone just wanted to help.
We also ran a small social media campaign to try and raise awareness of Duchenne. It involved celebs doing an ‘A’ symbol with their hands. We had stars from Coronation Street, TV stars, musicians and Rugby League players doing the sign. Our most famous coup was Liverpool manager Jurgen Klopp pictured holding one of our t-shirts.
Action4Alfie has been a big distraction and has given me a drive to raise awareness, help others and make fantastic memories for our family. As I mentioned in my last blog, we recently went to height adjustable baths demonstration. The bath that was on display had a jet air spa which would be beneficial to Alfie’s muscles in the long term. It comes at an additional cost though but having the money people have generously donated helps us to provide Alfie with these additional extras.
As we achieved over our original target of £10,000 for Action4Alfie, the next stage is to do some fundraising for the charities that have supported us. At the start of the year we supported Muscular Dystrophy UK’s Go Orange for a Day. We’re also planning some fundraising for other Duchenne charities, in particular Action Duchenne who have been very supportive to both Louise and myself.
We also are working in conjunction with Lynnette from Action Duchenne to present Duchenne from a Parents Perspective. This will help to raise awareness to local NHS staff about recognising traits of Duchenne and also to help make sure that the parents get the support required after diagnosis.
All this helps to keep my mind focused and most importantly occupied. This blog is also fast becoming another cog in the CM wheel. Other Duchenne Dad’s I’ve conversed with have various coping mechanisms such as looking into research, exercising, taking up a new hobby. Everyone deals with it differently and find comfort in their own way.
I also did something I’ve not done in a while today (now, now it’s not rude!) and that was to SING OUT LOUD in the car. I had a rather rare afternoon to myself today and for once I had the playlist in the car to myself. Being a 90’s Britpop veteran I decided to blast a bit of Sunday Morning Call by Oasis out and man it felt good. WHAT A STRESS RELEASE! Give it a try. I think I might go and join a choir or maybe belt out a bit of a karaoke classic this weekend to sum up the how we’ll fight what’s ahead of us in the future.
First we were afraid,
We were petrified.
However, we’ll grow strong and learn how to get along but most importantly…
WE WILL SURVIVE! 😉
Happy weekend folks!