The big vacation has been shortened to a one-week vacation for Ella-Marie. All the more reason to get as much out of it as possible!
Dear teachers
Even before we left for a week of vacation, we had some nice
visits on Tuesday. We have already told you several times about the
teachers at IMG. Someone who teaches children with special
individual needs on a daily basis does so from a certain ideology:
sincerely hoping and knowing that as a person you are making a
positive difference in the lives of the students. And certainly for
such people, the school year does not end on June 30. Ella-Marie
had the surprise of receiving 2 very nice teachers in Pulderbos.
With a big smile and a big hug, they were greeted by a very
cheerful girl. Ella-Marie secretly misses school very much. She is
regularly asked when she can go back and even more often refers to
school events.
Ella-Marie also had several questions, which were answered very
thoroughly. Is the playground still the same? Have there been any
fights? Who will be my teacher next year? They weren't allowed to
answer that last question yet, so we can't give it to you yet
either. On August 30 there will be an introductory meeting. That
evening we will try to bring Ella-Marie from Pulderbos to
Heist-op-den-Berg and let her see her new class. Another proof of
the school's thinking along with the student? There will be a class
on the ground floor, so Ella-Marie will not have to climb
stairs!
International visit
For the first time we were also allowed to receive 2 super dear friends from Germany. They had planned a trip to Heist-op-den-Berg especially for Ella-Marie. With some English words, she made it very clear that the presents (chocolate and candy) were a hit! :-)
Mama Annelies and papa Pieter then took advantage to go on a half-day city trip in Mechelen with the friends. Ella-Marie and Olivia stayed to play with grandma and grandpa, who were only too happy to give our daughters another day of pampering.
A little tip if you want to explore Mechelen yourself: install the app "Visit Mechelen" and walk past all the beautiful sights in a city where a huge upgrade has happened in the last 10 years!
Tomorrowland
You read it right. Certainly Papa Pieter's German colleagues will now draw big eyes, as they have been asking for several years if there are any tickets left for TML! It is not the adults, but Ella-Marie who was allowed to drive towards Boom on Wednesday! Pulderbos was invited by the organization to take a look at the stages of TML. Obviously not during the event itself, but if you ever have the time to visit "De Schorre" between festival weekends, don't hesitate.
Ella-Marie was assisted by the guidance and physiotherapists of the living group during the trip. Trying to get on the bus by herself for the first time apparently became a great success, because at the end of the day this was the first to be proudly proclaimed. Mom Annelies was also greeted in festival style by Ella-Marie. One arm already a bit higher in the air than the other, loud cheers and with big smiles everyone heard a happy "mamaaaaa, jeeeeeeejjjj".
With a bit much adrenaline in the blood, bedtime didn't quite go according to plan, but once the eyes were closed it was another good night. A night like the previous months: with no seizures!
Best news of the week
It was quite a busy week, with visits in Pulderbos and the trip to Tomorrowland. Then on Thursday we packed up, because on Friday we were leaving for the sea. And while we were packing, we got an unexpected phone call from Professor Braun. The prof from the UMC in Utrecht called to check how Ella-Marie was doing, five months after the operation. And actually we couldn't help but be "cautiously positive." Of course there is still regular frustration, but we see progress. And of course not everything is going exactly the way we want, but there is still positivity.
When we said that one anti-epileptic medication had already been phased out and there were no more seizures, we got really good news: "I think we can assume that no more seizures will follow. The operation was very drastic, but it appears to be effective. I am positive".
After 8 years of severe attacks and misery, it is hard to have hope without fear. But after those words, hope is really completely back. Starting in October, we will completely reduce the medication and if it turns out that there really are no more attacks ... we will have to celebrate seriously!
We closed with the phrases every doctor hears from time to time, "Thank you for all your help, but I hope never to have to see you again for professional purposes." A smile on the other end of the phone confirmed the same hope, and the vacation outlook was even a lot sunnier than fifteen minutes before.
Sun, sea and beach
FINALLY vacation. And what more could you wish for yourself than
being together? Exactly! Sun, sea and beach. And how we enjoyed the
beautiful weather! 30 degrees, not a cloud in the sky, a pleasant
breeze through our hair and all the vitamin D we could wish
for.
That...we saw on TV...under a blanket...on the couch. Because what
we got was probably the worst vacation week in years!
And yet, it was enjoyment. Enjoying being together. No camera needed when Ella-Marie went to rest or sleep and no emergency medication needed during outings. And again, Ella-Marie was there to amaze us. Without saying a word, she decided she had been inside long enough. She stood up, took a few steps and headed relatively smoothly toward the garden table. As long as she has her splint on, she dares more. And daring more then leads to great progress!
By a happy coincidence, we ran into our friend Maxime with Wim and the kids. Maxime was the midwife at the hospital in Lier, who greeted us when Ella-Marie came out of Annelies' belly 6 weeks early. From second one there was a connection and 11 years later we still see each other! Daughter Louise thought Ella-Marie had a beautiful wheelchair and chose to crack her foot a few days before the visit. This resulted in 2 happy girls in wheelchairs being pushed further down the embankment.
Suikerrock in Tienen
We are lucky to have you. Since the start of our blog, 6200 visitors (!!!) have already seen the site. Many of you sincerely sympathize and send very sweet messages. And every now and then Ella-Marie gets a present too. A super sweet lady, Chrisje, asked us if Ella-Marie would like to go to Suikerrock, because none other than Camille was coming to perform! Of course we accepted the request and on Sunday, August 6, we headed to faraway Tienen.
It must be said, the organization for wheelchair users was incredibly good! A short application form was completed via e-mail and almost immediately we received confirmation for permission to park in a specific parking lot. Via a road along the back of the stage we could enter the festival grounds without any obstacle. And there, too, we received an extra friendly welcome! The stage for wheelchair users was full, but the friendly people at the VIP saw us and invited Ella-Marie to "stand" there on their stage.
It won't surprise you, but it was raining hard. So hard that even the Efteling ponchos (which we actually use to survive water attractions) couldn't keep us dry. But Ella-Marie was super happy because she got to see her big idol and sang along loudly with every song.
And so we ended the vacation in beauty. Hop to Pulderbos, because there they may greet back an extra motivated Ella-Marie!