Saturday, 21 March 2015

Action Boots


Ankle Foot Orthotics.

When I first heard these words, my heart ached a little bit more. I knew they would help The Lodger but here was something else we had to deal with and ultimately come to terms with. 

Just last month The Lodger was fitted with AFOs. To the uninitiated these are also called splints. Splints. It's such a harsh word. It's an even harsher word when you attach it to your two year old little boy. 

When we attended our orthotics appointment, I was hoping that the physiotherapist had it wrong, that he wouldn't need them. The Lodger as usual, smiled and waved through his assessment and it was concluded that he would need AFO's. The warrior in me, smiled and said 'Anything that helps him to walk is great'. Inside, I was sad. Here's another thing that The Lodger had to deal with. 

As parents, we approach all the challenges The Lodger faces with positivity. AFOs were the last thing we wanted for our son but for them to succeed, we needed to be pro-AFOs. We didn't need to worry. We should have remembered who are son is! 

The Lodger always surprises me. Not once has he complained about them. They immediately became part of the routine. Each day, an extra hour of AFO time was added on to get used to them and within a week, he was in them full-time. It should've taken two weeks. 

Yet again, The Lodger wins. He's stronger because of them. He can walk with someone holding just his hands. He's sturdier on his legs. 

He was recently showing his AFOs off to my cousin. 
"Action boots" my cousin said. I agreed. These are The Lodgers Action Boots. 

Action (definition): the fact or process of doing something, typically to achieve an aim

The Lodger is determined. He will walk one day independently and it's the Action Boots that will help him succeed. 

Sunday, 15 March 2015

The Benefits of Prader Willi Syndrome

I recently read a blog about what we can learn from people with Prader Willi syndrome and it got me thinking.
I started to think about the good things of PWS. The benefits of PWS. The things that make me feel good about The Lodgers development. Possibly just my benefits of PWS but I thought I'd share them anyway.

This may seem strange. How can you see benefits to a rare and so far incurable syndrome? Well I do and I'm sticking with it.

So here's my Top 5 benefits of Prader Willi Syndrome.

No 1. Slooooow motion
The Lodger is 2 and he is growing so slowly. It's brilliant. He's been nearly walking for 6 months and he was nearly crawling for a year before that. Before that he was nearly rolling for ages. We never miss anything the lodger does as it takes him so long to do it.
And I enjoy every day of that wait. The tiny changes. The growing confidence. The mental strength in his little face and he pulls up to peer out the window at the cat in the garden.
What's the hurry in growing up? I'll enjoy it while it lasts.

Number 2 My healthy lifestyle
Thanks to the lodger and PWS we are now so healthy. We eat healthy. We exercise as a family. We rarely have treats. Food police have been and set the rules. So we've got a routine. We eat with the lodger at his scheduled mealtimes and never outside that.
This is all down to the lodger and his PWS . I don't miss random snacking or chocolate on a school night. And at the ripe old age of 32 I may have considered retiring from various sporting endeavours to just watch the professionals on the television and wonder what could have been.
But I didn't. Because as the lodger grows he's going to need an active lifestyle. If hes going to play for Ireland in the 2035 rugby world cup in who knows possibly Qatar well he's going to need to start training now. So I may as well stay fit to keep up. As one of the priests in school used to say "Be Wise - Exercise". He also said "Be Wise - Revise" which didn't work out quite as well.

No 3 Chill out
This is complicated but I still see it as a benefit. It's about really noticing  what's important in life. I used to worry about trivial things but now I think, what's the point? It is what is it. What's the point in getting angry. It's a waste of energy. Our house got robbed recently and I just thought sure it's only money. When the car broke down sure what's the point in stressing. It is what is it. The lodger is the most important thing in my life. After that as Metallica say nothing else matters. So why waste time and energy worrying.

No 4 is simply Appreciation.
So simple. Something other parents probably don't think about. I appreciate the little things in life. When I see the lodger and his challenges currently and for the future I don't take for granted the things Im able to do. Eat when I want to eat. Run without thinking. The natural strength in my muscles. My education and my mind. Everything I've got and didn't need to earn. And that's just the tip of the iceberg. Simple appreciation that the lodger has helped me to realise.

No 5. Dreams.
The wonderful moments of drifting into a daydream and the joys that happen in those moments. When I think back to Diagnosis day I had no dreams for the lodger. No hope. No plan. Just doom and gloom. 2 years and a bit on and he's achieved more than I ever could have dreamed or imagined. So I've started to dream. What's he going to do next? Wow he's done it. Now what's next. He never could. Could he? Oh yes he could cause he just has! We are deep into the lodgers hugging phase. He hugs everyone. Even strangers. He loves people and doesn't judge. I never considered the lodger showing such loving emotions.
Dreams are fun, so dream and have fun. You never know what might happen.
I know there are challenges of PWS and I am not ignorant to a life with Prader Willi Syndrome. But I still think it's important to be positive.
Positivity is free! It literally does grow on trees. Not literally but you get the point. So channel your positivity and enjoy your dreams.
Just think its no harm to get those positive endorphins going to push through those days when the clouds seem greyer.
So dream big and let Prader Willi Syndrome deliver!
I'll see you at the rugby world cup in 2035. I'll be the one with the rice cakes. Oh come on let me have my dreams...