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.
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!