Learning how to cope from those that are coping.

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!

#DuchDad

All aboard the Disney Express…

It’s been a hectic last couple of weeks in the family residence, hence no blog posts for you all to feast your eyes over.

Recently we returned from a very memorable long weekend at Disneyland Paris. The trip was arranged by the fantastic charity, Make-a-Wish UK. Alfie had been nominated for a wish last year. When questioned about his wish he immediately replied that he wanted to meet a Superhero. After trying to tell him that he saw me everyday 😂 eventually it clicked that he was talking about the Marvel Superheroes at Disneyland Paris! After some applications and a visit from the wishgranters, his wish was granted. We stayed at the amazing Disney Newport Bay Hotel and were treated like royalty from start to finish. Alfie was given a ‘Genie Pass’ on arrival at the hotel. This pass gave Alfie (and us) unlimited and priority access to meeting characters, accessing rides etc. If you’ve ever been to any Disney Park then you’ll know that some queues can be anything from 2 minutes to 2 hours plus so the pass made a huge difference to our Disney experience especially as we were only there a couple of days.

Alfie managed to meet 2 of his Marvel heroes, Spider-Man and Captain America, both of whom were really good with Alfie (and Mila-Rose). They spent a lot of time with them chatting and posing for pictures. As we waved goodbye to Spider-Man, Mila-Rose took my hand and asked me ‘Why is Alfie a special little boy, is it because his muscles don’t work properly?’.

Kids really do catch you unawares at times and my heart sank. It’s one of the moments that the realisation hits home about Alfie and Duchenne. A lot of the time when we’re all together you forget about Duchenne as you’re focused on having fun and spending quality time together. I particularly find the hospital appointments really difficult as that’s when you realise the seriousness of Alfie’s condition. Sometimes you find yourself drifting away from listening to the consultant, it’s almost like you’re having an out of body experience and they’re talking about someone else’s child. “Why am I here?” I would ask myself. It’s even worse when Alfie isn’t present at an appointment, you have a feeling inside that makes you feel like you’re lying to him and everything’s a bit of a ‘cover up’. All I can picture in my head is his cute little cheeky chops.

We have spoken to Mila-Rose in regards to Alfie but only as far as explaining that his legs get tired more easily than hers and his muscles are different to the ones she has. For now that’s all she needs to know and it’s very rare she asks any questions.

We just try to keep everything as normal as possible at home. Alfie having his medication in the morning, doing his stretches and putting on his night boots are now just part of our daily routine. We don’t think about doing them anymore, we just do them.

Going back to our Disneyland Paris trip, I was shocked at the lack of respect and manners from some of the general public. We were waiting for the shuttle bus at the hotel to take us to the park. Alfie was in his wheelchair but on each occasion we tried to board the bus not one person let us get on the bus first or even help to lift his chair onto it. Now I’m not asking for priority but I know that is Brits are very courteous and would help or assist anyone with a disability without hesitation. There were groups of guys who were in there twenties bustling to get on the bus before everyone else. I wouldn’t mind but they didn’t even have any kids with them! Ne sois pas si grossier!

That aside we made fantastic memories that we’ll treasure forever all thanks to Make-A-Wish UK.

The Amazing Spider-Man

Back to domestic matters and yesterday (Wednesday 3rd April), we had a meeting with the Paediatrician who diagnosed Alfie and one of her senior managers (hereby present to state the facts and figures!). This meeting was arranged prior to the presentation that Lynnette from Action Duchenne will be kindly doing to the Wigan & Leigh NHS staff in May about Duchenne from a Parent’s Perspective. I don’t really want to go into too much detail about the meeting but let’s just say that I personally came away very much still in the same frame of mind as before I entered the meeting. Maybe that’s how I will always feel and it’s hard not to lose that feeling of Alfie being failed by the system. Apologies were made about how it was handled which I fully accept and respect. We’re trying to move things forward so that a family doesn’t have the same experience although I can’t help feeling that the same situation could still arise with another family due to ‘lack of resources’.

The meeting brought back alot of the feelings I had at the time of Alfie’s diagnosis, mainly a mixture of pain and anger really. I explained in the meeting that everything feels like a constant battle and it’s really exhausting, both physically and mentally. Not only do you have to deal with a diagnosis that changes your child’s life but it changes your future as well. The whole family in fact. We have to juggle hospital appointments, locally and at Manchester, all of which are within the working day (both our places of work are very supportive and understanding of the appointments), plan for future adaptations, which I can only describe as if you’re preparing for a horrendous car crash. On that note, we were recently shown a height adjustable bath and a self cleaning toilet. Both of which are amazing and will give Alfie independence and dignity later in his life but at this stage it’s very hard to look that far into the future. Let me tell you it’s heart-wrenching. We originally requested with his OT for a downstairs toilet for Alfie as he can’t get up the stairs unsupervised, that idea was literally pooh-poohed (pardon the pun!) by an architect and then the next thing the ball was fully rolled into the full shebang of the whole adaptations process! We have to try and explain to the demonstrators that we’re not quite sure when these will be required.

What we’re finding in most situations is that you either go from the extreme to the other or that if you don’t make yourself heard and push for everything you soon disappear and get lost in the system. If you’re in a similar situation just keep pushing and fighting. Make yourself heard.

Well that’s enough from me for this blog.

Until next time!

#DuchDad