Hey, hey, it’s me again…
Sorry it’s been three weeks since my last post but I’ve been busy… busy counting down to next week 🙂
That when my parents are taking my skiing for the very first time. I’ve never done that before and am anxious to head for the mountains. That magnificent white scenery all around me, the frosty trees with the smooth and shiny slopes swirling in between them, the reflection of the sun on the beautifully white powder snow shining so hard that I’ll have to squeeze my eyes.

I’ve seen snow before here at home, for sure, but compared to the romantic picture in my head the difference will be similar to the difference between a lake and the sea. Majestic mountains rising on the horizon as we approach the skiing area on a small meandering road. Probably with hundreds of other cars before an behind us, slowly moving towards the same destination with the roof-boxes firmly mounted on them and the snow-tires gripping onto the icy road. It doesn’t bother me… because I’ll soon trade in the confinement of my car seat to the open air and the immense freedom of the snowy Alps.
Though we still have almost a week to go before we set off, mom’s already packed the luggage. A couple of weeks ago we went to the store to buy me a flashy ski-outfit, a safe helmet, goggles, thermal underwear, long and warm socks, heat-pads (I have difficulties keeping my heat, so better safe than sorry :-)) and comfortable snow boots. Everything is already neatly packed along with my parents and brothers outfits. The sight of the luggage on the upstairs overpass gets me excited every time I pass by it.

Needless to say that, like with any adventure, everything starts with proper planning – and planning, that’s what my parents did. Last summer we wanted to start booking our holiday so the first question was: “where can we go skiing with a child that has Kabuki Syndrome and also make it his worth while?”. My parents usually go skiing to Austria. Austria is known for it’s very nice skiing area’s, great food and fabulous “après-ski” activities. You can find many hotels with direct access to- and from the slopes which means you don’t have to drag your gear with you for half a mile before you get to a lift. However, Austria seems to have very little facilities when it comes to skiing with a disabled child. After careful consideration, it was clear that the only place where these facilities are available, are in France. The French Alps are know for their wide slopes with lots of space, they are usually less steep than in Austria (a black slope in France is like a red slope in Austria) and the hotels and apartments are more centralized in the villages (less access to- and from the slopes).

So my parents booked an apartment near the ski-lifts in “les-deux-alpes” – a small village at roughly 100 kilometers from Grenoble. An apartment is easier than a hotel because it has a small kitchen where mom can prepare my food and a washing machine as I tend to get my clothes dirty more often than a regular person. Making sure we bring enough dipers – in case they don’t have size 7 in the local store as these are rare to come by in a shop. Bringing absorbent bed protectors to prevent damaging the mattress due to a night-time accident. Bringing “Macgyver” – my stainless steel food container that can keep my food hot for several hours on the icy mountain. Not forgetting the heat pads just in case I get cold, as my metabolism tends to play tricks on me occasionally. It’s all these little practicalities that needed to be considered when booking and planning our trip for next week.
In terms of activities, the “Ecole du Ski Français” – the French Ski School – is one of the rare skischools that has a offer for people with a disability called “handiski”. As already mentioned in earlier posts, I’ll be getting down the slopes in a Dualski. My dad booked 4 sessions of 2 hours – my first session is planned for Sunday 12 o’clock! That is exactly a week from today and I really can’t wait – I’m so excited!
Aside from the skiing activities, there’s lots of other things we can do as well over there. Riding a dog- or a horse sled, visiting the ice caves or simply enjoying the sun on the patio of a mountain restaurant. It is going to be a versatile week – of that I’m sure!
Earlier this month we had some snow here in Belgium too. Mom didn’t hesitate to take advantage of this opportunity to put me on a sleigh in the back yard and test my sliding skills… needless to say I enjoyed it as the video shows. So I’m ready! Bring it on!
Have a great weekend and stay tuned for more…
Jerom