March 10. When we put the date down in December, it still seemed so far off. Now it is finally (or unfortunately) almost here.
Multiple dichotomies
Fast versus slow
Things must move forward, but at the same time you don't want
that day to come. The prospects are hopeful, but also frightening.
Rationality fights with feelings.
On the one hand, we want it to be March 10 as soon as possible. The
misery must end. But how we would like everything to be normal for
"a while." We still want to do so much as a "normal" family. Just
being able to go on vacation, just letting Ella-Marie play with
friends, just going to a subtropical pool, just ... normal.
So it won't surprise you to learn that on Sunday we are still
heading to Ella-Marie's second sojourn: the Efteling. Of all the
things she could choose, this was really the highest on her wish
list! Our apologies to the teachers. We broke the good news last
weekend and Ella-Marie just can't shut up about it this week. The
countdown for her has begun ... but she is counting down to a very
fun event! :-)
The contradiction between "let it move forward quickly now" and "please wait a bit longer now" is there and will play out until the last second. But we know we have to, so we're really going for it.
Hope versus fear
The prospects are good: epilepsy-free, building up to a new and
better quality of life, and both mental and physical rest for
Ella-Marie. But how frightened we are for the operation itself. Is
she going to get out of the tough surgery? How will she come out of
it? What will the first few days bring? How much will she be able
to do after the surgery and after her rehabilitation? How long will
the rehabilitation take?
So many times we have expressed our hopes for finally some real
positive news, now let it be of that!
Organization versus let come what will come
The bureaucracy beast is never far away. Health insurance is
useful, but in these times they also do everything they can to make
it as difficult as possible. Wrong dates on approved documents,
fine print in contracts that don't allow refunds, "you're right,
but..." answers. It takes a tremendous amount of concentration and
brings a lot of frustration to close the paperwork in addition to
fighting the disease. That organization is unfortunately part of
it, but should be much easier.
We also try to organize as many practical things as possible.
Olivia will go with us the first weekend and the grandparents will
pick them up on Sunday. After that she will stay with the
grandparents and neighbor. A visit to "Pulderbos" rehabilitation
center is already behind us and both UZ Leuven and Pulderbos have a
room fixed as of a certain date.
How we will organize ourselves will depend on what will come. The intention is to stay with Ella-Marie at the hospital (UMC and Leuven) anyway. In Pulderbos we may stay for 2 weeks and then Ella-Marie will sleep alone. For transportation there, grandparents, relatives, good friend Harry and others are available. In the cellar there is already enough booze and food we can find at our friends from Delhaize (we recommend the ready-to-eat meals), a pizza from "the doctor" or at grandparents and the neighbor.
Either way will come what must come. And we are going to do everything we can to deal with it as best we can.
Thanks
Thank you for the candles, cards, emails, .... We will keep you updated!