Tuesday, 20 April 2010

The post about the wobbly legs.

I was nervous as hell as I pulled into the parking lot of the playground. I'd been on a couple of dates with Bella and I really liked her. I mean really liked her, and I was pretty sure that she liked me too. In all of the previous relationships I'd had, this had been enough for us to continue seeing each other, but this time around there was another factor to consider. Bella's son.

I didn't know much about him, other than his name was Joseph and he was six years old. I climbed out of the car, locked it with the remote and turned to walk toward the play area. I quickly learned something else about him, as I approached the bench where Bella sat, watching a dark-haired little boy sitting on one of the swings: he could bring the most amazing smile to her face.

She offered a small wave as she saw me approaching, and offered another smile just for me.
"Hey," I greeted her warmly, sitting down next to her.
"Hi, Edward," she replied. "How are you doing?"
Before I could reply, a young voice rang out.
"Mom! Mom!"
We both looked up to see Joseph running awkwardly toward us. I frowned slightly as I watched him, trying to work out what was wrong with his gait.
"Slow down, honey, be..." Bella was interrupted by Joseph tripping and flying forward. "Careful," she finished quietly, getting to her feet with aa sigh.
"I'm ok," he said as he got back to his feet, but as she reached him, Bella insisted on inspecting him for injuries. She took his hand and they walked back over to the bench.
"Why don't you just rest for a while?" she said, pulling him onto her knee. He sat for a couple of minutes, long enough to be introduced to 'Mommy's friend, Edward', then he said a polite hello, slid down from her lap and set off back toward the play equipment.

"Maybe we could take a walk to the other side of the park and get an icecream after?" I suggested. Bella grimaced. "Uh, we don't have to, I mean-" I stuttered.
"No!" Bella interrupted quickly. "It's not that I don't want to, it's just that Joseph'll struggle to walk that far. He's got a neuromuscular condition. It affects his legs mostly, we say he's got 'wobbly legs', so he falls a lot and can't walk long distances."
I examined the look on Bella's face as she kept her eyes fixed on the little boy laughing and shouting as he played with another child, trying in vain to keep up as he chased after him, then stumbling and falling again. My heart went out to her.
"It must be tough," I said quietly.
She sighed and turned to look at me.
"Yeah, no-one wants to see their child struggling, or to have to comfort them when they're crying because other kids have been teasing them."
I put my hand over hers as it held gently onto the edge of the seat.

Ok, I'll stop there. Of course, it's not a real fanfic, but I had something I wanted to share this week and thought this would be one way of sharing it that hopefully held your interest a little.

This week - in the UK at least - it's CMT Awareness Week. For those of you who've been around here for a while, you'll probably already know that this is an inherited condition shared by my father-in-law, Mr Stan, and William, our eldest Stanlet. The piece I wrote above is how William and myself would be in that situation (although obviously I edited out the part where I'd take a friend along to watch my son while I disappear discreetly for a quick fumble with Edward behind some trees or in the car).

I'm not going to bore you all with the details, it's about making people more aware of the condition, and if you'd like to know a bit more then you can go here to find out more.  If you can't be bothered doing that - which is fair enough - but there is something you'd like to know then please feel free to ask here, I'm open about the condition and how it affects us.

I'd also like to point out that in no way am I moaning about it.  Yes, it makes life difficult at times and I hate seeing my little boy struggling, in pain or upset about things linked to his CMT, but especially visiting the various clinics and things that we do to see various doctors and other health professionals, you see other children and begin to realise exactly how lucky we are for all of the things that he can do.

Will having a well-earned rest at his school sports day last year, having done nearly everything the other children did and enjoying every minute!


Dangrdafne said...

Stan, I loved how you made your story as for Bella and Edward but I know for me, your personal story holds my interest too :)

I am so proud of you, your son and your family. It is heartwarming to know that even with the issues at hand you all understand the blessings you have, too. I can't even begin to imagine the stress but I can imagine the love that is shared. I offer you my hugs and my support in any and all ways.

Do you know if there is a way I can make a donation (from the US) to a group that is special to you and your family? It would make me happy to help your family and others with this condition in any way I can. Please let me know and thank you for sharing your story.

Mary said...

Good old William at sports day :)

17foreverlisa said...

I have the hugest lump in my throat, Stan, and tears are swimming in my eyes. I know that's not your intent and it's not because I feel sorry for you or for Will. It's because nothing means more to me than my kids, and I know the same holds true for you. Your love...and your pride...can be felt in the clever way you pulled us in with the B&E story starter and with the rest of your post. I knew that you had a new avi on twitter but I didn't know what it was until now. I have been around long enough to know about Will's condition, but I look forward to reading more about it. I am on my lunch break now, but I will definitely check out the link you provided when I get home tonight.



Jayla said...

Thank you for presenting CMT in such a unique way. I went to the US NIH (National Institutes of Health) website and read even more. I will share on my FB page. Thank you for sharing. (Will is just adorable)

StarlitViolets said...

Aw Stan - this was SO touching. I LOVED the hook of the B&E story! I look forward to learning more about CMT. Awareness can make a huge difference.

twilightcupcake said...


I am glad to see fanfic raising awareness for something so important. What a lovely post! You must be so proud of your eldest for getting through everything despite his struggles. Lots of hugs for your family and big cheers to William.

NibbleitPattinsonakaNebilet said...

Argh I wanted to comment on brill this post was, how you made it fic like and fantastic. Well done Stan....as you know I had computer trouble yesterday. I got very, very cross and sweary but all is well now I think-right back to work. This post was awesomesauce itself!!!

Stan said...

Thanks everyone, I was thinking that I'd read the comments here, but obviously I hadn't, duh!

Dangrdafne - thank you so much for the offer of a donation, that's very kind of you. I'm not sure about how you could donate to a UK based charity, but if you're sure about wanting togve something, then this looks like a good US based organisation which could ultimately benefit generations of our family in the future and also help children like William in the US https://www.hnf-cure.org/ :o)

Stoney said...

This was a great post...sorry I'm so far behind and only just now getting to it...damn work.

I did not know about this condition but thank you for making me aware. I loved the mini-fic. Great idea.

that's Mr. Pantz to you said...

i was riveted right from the beginning. i almost couldn't believe it at first. i thought to myself, "some fic with a special needs mom? how awesome is that!!!" being a special needs dad, i can relate and finding quality entertainment of any variety that includes special needs without making it feel forced or cheesy. even if it was only partial, just wanted to let you know how natural it felt. the son was not an afterthought or a forced thought. he was just himself, and a huge part of his mom's heart. i think you just might be onto something, here... just sayin'.

i won't say any of the normal things people say when they find out your child has a big challenge like that. just that there's another couple out there who understand, even if in a completely different way. I know exactly what you mean about going to the doctor's office and seeing somany other kids that are worse off and hwo it puts everything into perspective.

Stan said...

@ Stoney - Thanks :o)

@ Mr Pantz - glad you appreciated my fic attempt! Only people who go through the same challenges can truly understand. I have a friend who is also a special needs mum, and every so often we go out to dinner and just talk at each other about it all, it's very cathartic! There's definitely not enough support for parents out there. We've talked about starting our own support group - only in a jokey way, but I wonder if underneath it all we're both serious really!

It's nice finding common ground with people in Twitardia too :o)

Dangrdafne said...

@ Stan - I think a support group is a wonderful idea. Think about how all the Twilight blogs and such are a support group for us and our obsession, now imagine all that for a real cause :) I hope you and your friend pursue it. How many other parents are out there wishing someone would start something... you can be that someone. I'll help in any way I can from the US, just let me know how.