Dear reader, it has been about a month since we have spoken. Busy work and family life sometimes causes some delays, but in all honesty, it was also a little too much for a while.
A break
The bumpy ride with 8 years of sleepless nights, the uppercuts a professional boxer would envy, and the tremendous stress of the past few years, have caused the battery to run down for a while. A little more focus on your writer below, but feel free to continue on for a few paragraphs to hear Ella-Marie's news! For there is much to tell.
How did you guys keep this up? It is a question that still often comes our way. The answer was always the same: "Because there is no other way." The quote from neighbor Simonne still proves to be the bleak truth: "Sometimes you don't even have time to complain and you just have to get on with it." So too in previous years and more specifically in previous months.
The work offered a one-time and enormous (positive) challenge.
Partly because of this, 2 trips were made to Chicago this year and
the Netherlands, Italy, Hungary, Poland, UK, France and Germany
were also on the schedule. With about 80 working days abroad, the
"Miles and more" points thickened solidly.
In between traveling, we took one week off to drive to Utrecht to
attend a brain surgery. And then about a month was spent overnight
in hospitals and rehabilitation centers. Fortunately, there is also
such a thing as vacation, where we as a family always have the gift
of choosing our vacation home in rainy weather.
Grandpa (and proud godfather of Ella-Marie) Jacques was unfortunately diagnosed with cancer again (fortunately that threat should be surgically removed by the end of the year), we've been living in renovations for several months, Ella-Marie went completely into negative mode and take it that we ran out of vitamin D. You probably understand that everything was running on autopilot. The adaptive cruise control knew the way to Pulderbos, the focus was also on work quality and the daily obligations could be carried out. Writing additional articles was unfortunately no longer possible for a while. Mentally tough times and the bed called several times before nine in the evening. The lure could not be resisted.
Fortunately, as a child, your writer fell into a cauldron of Redbul (my parents had their work and performed it extremely patiently :-)). Either way, you know the batteries can be quickly recharged. So too last Monday, when time off was taken to conduct parent interviews in Pulderbos. That it was raining then, of course, will not surprise you.
Anyway... Dr. Van Eijsden gave golden advice right after the
surgery, at Ella-Marie's operating bedside in intensive care:
"Great that you have endured all this and carried the family like
this, but think about yourself in the coming time. No one can keep
this up".
The last week of work is behind us, the 2 weeks off are going to be
gratifying. We will recharge our batteries with family and
friends.
Over to more important matters
As touched on in the last blog, things are not always rosy with Ella-Marie. The winter dip has continued to develop into a wind force 10 storm. Weatherman Frank would be watching Hurricane Ella-Marie with particular interest. The eye of the storm is known for wind chill, occasional rain and some overcast. But the beginning and foothills of the storm system could really break the lull.
First, some good news
Hurricane Ella-Marie briefly became a shining sun when she got
to go to her home school, the IMG, one more time on a beautiful
Thursday. Miss Jessie had deliberately said nothing to the students
in the class, and that turned out to be a hit as well. Mama
Annelies and papa Pieter brought Ella-Marie in the wheelchair to
the playground. On the one hand because it is quite a distance to
walk, on the other, she is not yet stable enough to survive on the
playground ghetto.
We turned the corner and as if by chance, a large group of
classmates stood at the front of the playground. The facial
expressions were variable from ecstasy to bewilderment, but mostly
all with very big smiles. Shouts rang out all over the playground
and soon there was a whole group of friends standing around
Ella-Marie. A quick goodbye kiss was just enough and she was
gone.
A whole day in the homeschool. Just being allowed to attend classes and be with friends... Ella-Marie was truly happy!
Reality
Unfortunately, it was only a momentary shot of happiness. Ella-Marie has not been feeling well lately. After 8 months of tough rehabilitation, she is com-ple-tely fed up with it. She is now the ancien in her living group, as all the predecessors have already gone home. The class of teacher Conny has also welcomed a whole new group of students. She wants oh so much to go home, but we all know that this is still (much) too soon.
We lost our sweet girl for a while. Lately we really have to
urge Ella-Marie to stay polite and not rebel. Running away from the
living group, being rude to the teachers, rebellious behavior, you
name it and she will do it.
8 months of rehab, withdrawal from anti-epileptic drugs, puberty,
having to continue working at the limit every day and several more
things take their toll.
We do notice that Ella-Marie can sometimes be her sweet self when she is at home. Everyone in the family then gets sweet hugs, she explains a lot and she makes beautiful drawings for anyone who wants them. But even here we have to say in all honesty that there are tough moments. For inexplicable reasons, there can be an outburst. Crying or anger then appear out of nowhere. And yet it must not have been all bad, because St. Nicholas did come by to give Ella-Marie (and Olivia) presents. The man himself said very clearly on TV, "There are this year . NO naughty children".
Solutions and perspective
So despite the sacred visit, we must look for solutions. Starting with perspective! And that's what we were told at the talk Monday. Mark it all down in your calendars: Ella-Marie may go home on March 29! Effective 1 year and 19 days after her surgery, she will have a real home again. And it must be said, as soon as we gave her the good news, a sincere smile appeared and hurricane Ella-Marie laid down for a moment. Especially when we informed her that from the spring break she can also return to her own school one day a week. That integration day will have to ensure that Ella-Marie will handle the transition from Pulderbos to the IMG well.
It is still with many ups-and-downs, but we do notice that Ella-Marie's mood is moving in the better direction. Actually, she is also doing very well with the physiotherapist and the occupational therapist, so she does have some success experiences. It is by focusing on these that we are trying to get Ella-Marie moving in the right (positive) direction.
Vacation
And there is even better news! Ella-Marie may go home between Christmas and the New Year. For the first time in a very long time, she will be in the house for more than 2 nights. Besides the well-known holidays, she is also going to be able to celebrate her godfather in all joy. Grandfather Denies will receive the hug for his birthday with a happy smile. Also on Ella-Marie's agenda: celebrating Christmas with the family, a movie at the cinema, playing a quiz from the Efteling on New Year's Eve and so much more.
But first...
...a week of full commitment in Pulderbos! In any case, we hope she will be back to her good self. That should succeed, because this week Ella-Marie will have plenty of distractions. After all, it is in the next few days that she will be on national TV. Big idol Niels came to visit and how she enjoyed the attention and his hugs! In addition, on Wednesday in Pulderbos we walk tours around the domain to sponsor the warmest week. And before you know it ... Ella-Marie is finally REALLY home for a week.