The world continues to turn. We are almost 2 weeks into the new year and the news is abounding on a daily basis. Wars, digital electricity meters, cold fronts, flooding and bitcoin ETFs. In the midst of all this worldly power display, a not-so-little girl with beautiful blue eyes walks her own path. It's one of trial and error, of happy moments and frustrations and where the light at the rehab internet tunnel is getting closer step by step.
Delightful New Year's Eve
Ella-Marie enjoyed the week of being home. Especially when she was allowed to leave on traditional New Year's singing (for non-Heists: a bit like singing Epiphany, but at a different time). Papa Pieter pushed the wheelchair and together with sister Olivia they then stepped from the street side to the front door. How much she was encouraged! Here and there we even shed a tear of admiration for our brave girl. And always with great devotion and a big smile a New Year's song was sung. The delicious candy mountain that was received is actually so big that no purchases should be made in the coming months. Due to a lot of talk at the door, we were not even able to visit part of the street. With great laughter, a good 200 meters was run. A little rollercoaster experience, but on public roads.
On New Year's Eve itself, Ella-Marie still had more than enough
energy left. In time-honored tradition, grandma and grandpa, plus
grandma Simonne and uncle Danny and aunt/godmother Kris joined us
at the table. On the agenda: a big Efteling quiz and a dance
performance. The quiz consisted of 10 questions and under a great
deal of tension, each question was met with enthusiasm. The
quizmaster had secretly chosen a success quiz and both girls had 10
out of 10! "This is the most fun quiz EVER!" And for that big smile
you will do anything :-).
Then again, the dance was more of an emotional moment. In the
greatest secrecy, Ella-Marie had chosen a choreography. To the
tones of Niels Destadsbader (who else) she showed what she could
do. And that may be taken literally, because all the exercises she
gets from the ergo and physiotherapist were incorporated into the
dance. A graceful movement with the right arm, was followed by a
cursory trial of swinging with the left arm. There was a controlled
move to the ground and also jumping back "straight" through the
seat. It was at that exact moment that the entire film of the year
briefly came to mind. From the dozens of attacks before March to
the absolutely needy, physically limited girl to the young lady who
made an appearance before us. The road was really hard and long,
but there she was. Our beautiful girl dancing to the music of one
of her idols.
Once again that damn toe
A less fun New Year's gift was that damn toe. We tried to put it off for quite a while. Foot baths, ointment and even a pedicure were to no avail. Ella-Marie's toenail decided to grow to the wrong side, leaving wild flesh covering half the nail. The only solution was a minor medical procedure. 2 injections, precise cuts and very many loud shouts later, Ella-Marie was taken to the car in the wheelchair. "Why do I have to face this again?" A legitimate question, to which we did not have an appropriate answer ready. Therefore, we look ahead again. Between this and a week, we especially hope that Ella-Marie can get her left foot back painlessly in the splint and in the shoe. It is not hindering rehabilitation at the moment, as the physiotherapists in Pulderbos know how to provide other exercises. The wires may almost come out and it will improve.
And some more medical news
An EEG was performed last Tuesday. There are no signs of epilepsy during the day, but just to make sure everything is still doing what it is supposed to do a checkup was performed. We do not know the result at this time, but hope for a satisfactory answer. The surgery was good, the medication is winding down and there are no signs of epilepsy.... It is dangerous to express hope, yet we sincerely hope that the results will be satisfactory. More news in the next blog!
Happy reunion
The Christmas and New Year period are known for reunions. So too in our family. Ella-Marie is only too happy to attend. Especially since everyone in the family is ready with an admiring kind word and a big hug. It is noticeable that Ella-Marie has become more articulate. Where before it took a second to process the question, now you get an immediate answer. Sometimes a rather shy response, but regularly a clear explanation. The state of mind, like the hormones, is swinging. With highs and lows the days and sometimes even hours-mood-swings go by. Much depends on the environment. For example, it is clear that 24/5 rehab is becoming more challenging. Still, we are seeing some improvement here as well. The first week of school is behind us and Ella-Marie received green stickers for good behavior.
The weekend just over was also pure enjoyment. Chilling with grandma and grandpa on Saturday morning, at plus grandma's in the afternoon and in the evening dinner with friends at the skating rink. Sunday cousins Lander and Thijs came to visit and in the evening, despite the sore toe, there was even dancing among the four of us. From "Dance like LikeMe" to "Snowman by Sia," Ella-Marie and Olivia's fun was at the max!
The smiles returned. Ella-Marie herself said she really enjoyed this weekend. She also wants to have a good time in Pulderbos again and notices that being nice has its advantages, too. Not that we want to bribe them with presents, but a candy, a drink or a big hug at kind words gives everyone some extra courage, no?! :-)
Mom and Dad are looking for new furniture for the extension. On the way they talked about all kinds of things. But the conclusion is that we are back to "being happy". It may not be in an everyday standard family situation, but we are going our separate ways. And that road is finally going back a little easier! :-)