The cosy winter months are approaching. The smell of freshly
baked biscuits and chocolate milk encourage you to sit in the sofa,
pull a blanket over your legs and read a good book.
Ella-Marie's blog book has been closed for a while, but sometimes
sneaking into favourite reading material is a blissful sin.
Right?
Taking action
Dear reader, I know. There was a clear announcement that 'milestones' was the last blog. But sometimes... very sometimes we have to backtrack from announcements. And the reason why will in all likelihood (I hope anyway) give you a warm feeling!
We really got a lot of feedback about our strong girl's story. That she was so brave, how powerful she has been able to carry on and what a wonderful evolution she has made. But also so often the question of what you could do to make Ella-Marie's life easier and better. And some of you completely ignored our answer 'your moral support'!
So did a wonderful woman who read every blog in detail. She came
to us and said, 'The blog touched me and I have been thinking what
I can do for you. After some thinking, I found it... I am trying to
organise something for you guys. Give me a little more time and I
can hopefully announce fun news to you guys!'
With special curiosity, we kept waiting for a while, until we
suddenly got a phone call.
Translated with DeepL.com (free version)
About sheep and charities
Unfortunately, the lady in question has also had some bad luck in life, but despite that, she remains her own happy self. Even at one of the most difficult times in her life, she took the trouble to call us and shouted very enthusiastically:
'Ella-Marie is the next sheep barn charity!'.
For those who do not live in picturesque Heist-op-den-Berg, we understand that that nice hot chocolate will now have ended up on the floor somewhere. Apologies, we will provide an anti-stain cloth from the Delhaize.
So.. The sheep pen (Schapenstal)! For those who can't wait for our explanation, feel free to go to this link already: https://deschapenstal.be.
One of the driving forces behind this charity is teacher Kristel. She has never taught Ella-Marie directly, but Olivia was allowed to put her feet under the school desks in her class in the first year. After a chat with teacher Amber and teacher Kristel, it became clear to us what they all do!
The "schapenstal"
The Schapenstal or Schafstall for après-ski lovers, is a winter bar in the centre of Zonderschot, a hamlet of Heist-op-den-Berg.
The cosy, dressed-up log cabin will be open from 7 December 2024 to 5 January 2025.
Several Zonderschot associations and a host of volunteers ensure that De Schapenstal is open daily.
Everyone is welcome here to come and enjoy a drink in a fun, winter atmosphere. On Sundays, delicious, home-baked cake and fresh soup are on sale every time. Several associations also provide a little extra, such as indulgent coffee, gin-tonic or ham on a spit.
You can also perfectly combine your visit with a walk of about 7.5 km, departing and arriving at their winter bar.
Ambiance is guaranteed during the weekend: swinging performances, après-ski nights, vinyl nights,... Something for everyone! For a number of performances, they work with entry tickets. These tickets are on sale from Saturday 7 December at 1 pm in De Schapenstal. One ticket costs 25 euros. Up to 4 tickets per person can be purchased.
The specific opening hours and special activities are best consulted on their website: https://deschapenstal.be.
Every year, we donate a large part of our proceeds to charity. So this year, part of the proceeds will go to Ella-Marie! :-)
In short, definitely worth a visit!
What are we going to do with it?
Before giving an update on Ella-Marie's doings, we would very much like to let you know what will happen with the generous donation from the people of the sheep pen.
Ella-Marie is doing beyond expectation well. But beyond expectation well does not mean nothing is wrong. For instance, she will unfortunately never be able to cycle on her own. Since she can only see half of the world, she can never sit stably on a bicycle and coordination for correct leg strength remains limited, the dream of riding a two-wheeler will remain unattainable.
Trips to the Averegten (provincial forest), cycling towards school or simply 'going for a ride' are therefore out of the question at the moment. Fortunately, we live in the small country of Belgium and solutions are also being sought for less mobile people. Incoming: the tricycle tandem!
Thanks to friend Katleen, orthopaedic technologist at Aqtor!, we were offered the opportunity to test ride an impressive vehicle. 2 wheels at the back and one at the front, electric pedalling assistance and a back support for stability ensure that we can finally make Heist-op-den-Berg and its surroundings unsafe with Ella-Marie.
Of course, all this comes with a price tag. As parents, we have
always announced that we will do anything for our children. Thus,
we both work hard every day to earn the necessary pennies. So for a
moment there was also doubt about accepting the gift, but then we
got the clear message: 'These are pennies for Ella-Marie because we
want to support her very hard in her daily rehabilitation, not for
the parents :-).'
So it is with much gratitude that we take the support for her and
buy a tricycle tandem with it! :-)
Update!
And now it really is time to fully spotlight the main topic of
this blog!
Ella-Marie is doing extremely well. Both physically and
cognitively, she has made serious leaps that make us look at her
daily with immense amazement. Although the drastic brain surgery is
already a year and a half behind us, there are still major
challenges in life. And those challenges, unfortunately, are not
always related to the surgery itself.
Physical
What. A. Progress!
When Ella-Marie left Pulderbos, we got the message that her limits were about reached. We then said goodbye with much gratitude, because Ella-Marie was actually already able to do more than we had ever hoped. A short walk out of the wheelchair was even possible!
And then came the ghetto of the playground.
With Ella-Marie, we had agreed that she could go to school in her wheelchair until the Easter holidays. Then we were going to try to step into the playground and sit on a bench there. But children obviously want to play with other children and so Ella-Marie tried to follow the group anyway. First with the necessary support of arms and shoulders, then more smoothly and smoothly. So we can proudly report that Ella-Marie can get around reasonably well at a short distance! As a family outing, we will even try to go for a 3 km walk during Heist-loopt-warm!
On the other hand, of course, there are the limitations that will remain. Fine motor skills in the left hand are completely gone. Vision is limited to half the world. The painful splint has to stay on her foot to make a nice 90-degree angle. And so there are a few more inconveniences that mean Ella-Marie will still have her work to do.
But Ella-Marie would not be such a top daughter if she did not work hard every day. For instance, she can be found every school day (!!!) with that lovely physiotherapist Griet van Akketuut. What a motivator that is! From cheerleader dances, to scramble courses and yoga stretching exercises... she does it all! :-)
Remember Diane with her G swimmers? What an incredible success that is! Ella-Marie got to compete and swam 25 metres on her back all by herself to a wonderful second place!!! The pride on her face was indescribably touching!
And recently she also started with the G-turners. Every Monday she goes to practise for an hour in the gym in Heist-op-den-Berg. There, too, she learns to jump on a trampoline, walk on beams and playfully jump around the hall.
Summing everything up, Ella-Marie actually still needs to do intensive physical exercises every day to keep up the unexpectedly great progress and (hopefully) increase it a bit more.
And there is an additional 'benefit': 'Dad, I get to eat crisps because I'm sporting everything off. It just makes you fat, so I'll eat your portion!' :-)
Mentally
Life is not a pony camp. Neither is the school ghetto a place where everyone is considerate of you.
The first days of the new school year were fun for Ella-Marie, though. Seeing the friends back full time, getting lots of attention and sharing lots of experiences. But soon the pink cloud became rather a thundercloud... .
Ella-Marie has cognitive and physical disabilities. It makes her an easier target for bullies. And unfortunately, she has come home REALLY sad on several occasions. Because children can be particularly harsh. 'Dirty disabled person' was just one of the things said. But again, it should be mentioned here that the teachers at the IMG are real tops. As soon as Master Jonas, Miss Julie and others noticed this bullying behaviour, immediate actions were taken. And it must be said: right now, Ella-Marie is happier at school! She is really learning a lot, making unexpected leaps forward here too and finding intrinsic motivation in learning things.
Ella-Marie had been in puberty since last year. And how we knew
it was there. And perhaps worse, that it was still there!
Oh, the joys of raising a girl-child! Picture this: you try to have
a serious conversation, but all you get back are eye rolls and
sighs. It's like being a stand-up comedian performing for an
audience of one, and that audience is absolutely unimpressed. Every
question you ask is answered with a mixture of adolescent language
and sarcasm that makes you wonder if you have ever spoken the same
language. And then there are the moodswings, which make you feel
like you are on a rollercoaster with no safety bar. You can only
hope you don't fly out of the curve. But hey, who needs a calm,
harmonious relationship when you can also enjoy the constant
tension and unpredictability of parenthood? Right?
Unfortunately, Ella-Marie does have a right to complain when it
comes to physical limitations. Here we do sometimes notice the
frustration over that damned left hand. And perhaps more
importantly, the search for real friends is not going smoothly.
Fortunately, since a couple of weeks we now see Ella-Marie taking
out her phone every evening after her favourite TV programme and
walking away to call friend Jolien. Every night again, we hear a
peal of laughter and it really is worth its weight in gold.
Keep on goin'!
Life is full of challenges for everyone. Ella-Marie has shown
that she faces them with courage and determination. Despite the
obstacles, she continues to seek progress and improvement with good
spirits. We are REALLY proud of her and the perseverance and
positive attitude are an inspiration to all of us.
We would like to thank everyone who has ever supported and
encouraged her. It has made a world of difference! Ella-Marie will
always continue to work on her progress and with your help and
encouragement, she will continue to grow and flourish. Thank you
for everything... and who knows, see you in the schapenstal!
