As 2019 is winding down I wanted to look back at an amazing year. A year of joy and pleasure, hope and happiness, but also of some disappointment and even some desperation.
I started the year with the outlook of 2 amazing holidays. One in the Alps where I had the extraordinary experience of hitting the slopes in a dualski. A truly magnificent endeavor that gave me an incredible feeling of freedom – admittedly, the adrenaline might have had something to do with it 😉 And during the summer we had the most wonderful vacation ever driving an RV through the American West coast and into the beautiful National Parks. Each and every one of them a true natural gem in their own right. We went from peak to peak – come to think of it, it truly was a pinnacle year being able to experience all these amazing moments with my family.
Being able to do all that with my disability was not always easy and sure… there where moments of doubt and even some fear (like when my dad almost got stuck with me in Antelope Canyon and I bumped my head on a rock while he was trying to squeeze out of the canyon) – but I’dd do it all again without hesitation.
It brought our family closer together and I hope that I was able to inspire some other families, in comparable situations, to go out there and try new things. Having a disability should never be a mortgage on the happiness of the family. Yes, it can be a strain sometimes, no doubt about that, but as long as you stick together when the going get’s tough… you will prevail! Please remember that.
Now aside from all the fun we did have some (and are still having) some other challenges. As you might have read in my previous post I will need to leave my safe harbor as of next school year. My current school and teacher are amazing and they have given me so much these past years. I’ll miss them for sure.
My cry for help to the Flemish minister of Education was heard but not positively responded. The government administration reached back out to me to explain they understand my situation but can’t change it. Changing the law, as I suggested, would open a different can of worms that could create a lot of new problems as it solves some old. Oh well, we tried right?
I’m not giving up the fight though… I’m choosing my battles… And right now I’m getting ready to pick up the glove once more in my fight to be able to walk. During my last medical checkup at the orthopedic children’s hospital in Leuven I had to get a couple of new X-rays of my legs. The surgeon asked for these in order to determine how to proceed with taking out the titanium plates that are still in my legs from my previous operation.
During the evaluation of these x-rays he came to the conclusion that I starting to have hip dysplasia that will need urgent treatment. As I finally was starting to get my legs straightened, my hips decided to throw a spanner in the works.
With a busy agenda the surgeon will try to schedule me in early next year so I will probably have to spend a number of weeks in the hospital again in 2020. Another step back I will need to take before I can leap forward again in my lifelong battle with gravity. But mark my words… I will walk again!
So 2020… bring it on! Throw everything you’ve got at me… I’ll dodge it, jump over it, kick it back at you and I will keep standing tall… with a confident grin on my face. Cause I have my family behind me. My mom and dad, my brother, my grandparents, my ants and uncles, my nieces and nephews, my wonderful teacher, my friends and my followers. Together we shall overcome, don’t you dare doubt that for even a fraction of a second!
2020… ready or not, here I come!
Have a great new year everyone.
Jerom