A new week behind us! Whether it's Pizza Friday's from Dr. Oetker or AirFriday fries, we hope you will be able to enjoy a fun start to the weekend! Of course, we have not been idle this week either and, in function of Ella-Marie, we are again a few steps closer to the emotional framing, renovations and further future planning. An overview below!
Sister Olivia
The very dearest little sister in the world will be involved in
the whole operation as best we can. That means we try to express
things as they are. We don't gloss over it, but convey it on a
child's scale. For example, Olivia knows that her sister will be in
a rehabilitation center for several months, that the surgery will
have major consequences and that the first week after surgery will
be very tough. Fortunately, both the principal and Olivia's current
teacher are hugely involved. Ella-Marie was first in regular
education (HHC Heist-op-den-Berg) and the teachers and management
have always followed her closely. It is great to receive messages
from the school every now and then asking how she is doing.
The understanding of the school also ensures that Olivia will have
the opportunity to be in Utrecht during the operation. Teacher Els
("Daddy, that is such a sweet mama-teacher!") and headmistress
Petra (respect for every member of the board and certainly for
Petra who makes the HHC a top school) immediately sought a flexible
solution. Thanks for that!
One evening bathing moment I don't want to withhold from you. We
talked to Olivia about the surgery and wanted to know if there were
any questions. The question came spontaneously, gave chills and the
subsequent story showed how flexibly a child can handle the
situation.
"Dad, my friends said you can die from an operation like that. Is
that true?". Freezing for a moment and then saying in all honesty
that every surgery has a risk. That we are going to the experts in
the world to perform that surgery so Ella-Marie will get the best
care. Then a quick look at how the answer came in. After a short
silence ( a little thought and processing) came an approving look.
And only seconds later she came up with the world news that the
boys had grabbed all the soccer balls on the playground and she had
still managed to take one to play with. The success story of the
day!
Ella-Marie and the birthday
Ella-Marie is, if we may say so ourselves, doing well. It never ceases to amaze us with what resilience she gets up every day. The attacks are now very frequent at night, but she continues to get up with a smile. And secretly we also know why she is so happy: how much she is looking forward to her birthday!
February 8 is the day. Our little girl (who is slowly becoming as tall as mom) will blow out 11 candles. It is already a day (and with extension week) where everything will be with a double feeling. Happy for the day, but always in the back of my mind with the "this will be the last time where she can still do everything herself motor-wise." It's a pre-melancholic feeling that always reminds me of an article by the former president of the Children's Epilepsy League. Having a child with epilepsy is actually a constant and raw grieving process. Every day you see small steps of deterioration. The hope for a solution without drastic consequences ebbs away with the months and years. But this is precisely why we pack the party big! :-)
Golden advice for if you have children: don't ask them what they want to eat on their birthday. In no time, all the fast food chains in the neighborhood were listed. "Dad, how fun is it to do a drive-in!!!". Yes, I look forward immensely to a smelly, greasy car... but I also look forward mostly to the happy faces and the elated atmosphere! :-)
Since little sister Olivia's birthday is a few weeks after surgery, we combined the birthday parties just to be on the safe side. A total of 28 children from both classes (with or without some parents) will be at the ice-skating rink over the weekend. A children's disco and special lights will ensure that time will fly. And after an hour of consuming calories, the Belgian fries will taste extra good!
Health Insurance Fund CM
We had the opportunity to meet Goedele and Katrijn from the CM. It is very clear why they stepped into their particular job. With tremendous understanding of the situation and insight into their field, they were able to help us.
Goedele is a very kind, experienced social worker. She still knew Ella-Marie's file and was immediately ready to show us the way in the tangle of "care". In a clear way, she knew how to tell us what we would or would not be entitled to. She also reached out to experts to complete our file.
Katrijn is an expert in care housing and came by to see our extension. She also provided a whole list of things to take into account if we ever wanted to obtain reimbursement from the VAPH (Flemish Agency for Persons with Disabilities). Thanks to her, we now know very well what to do with the house itself and the bills.
Unfortunately, not everyone is so proactive in thinking and
helping. The eternal bureaucratic struggle to get an agreement for
reimbursement of a vital operation abroad is and remains a huge
point of frustration. The amount of rules, procedures and
exceptions make you give up the fight at some point. To give an
example, only the surgery itself is fully reimbursed. For the costs
we now incur (preparatory scans, interviews, additional
examinations, etc.), we are reimbursed about 3.5%.
We are lucky to live in Belgium, but we can see some areas for
improvement here.
Architect Cy
Cy Van Steen knows what she's doing. Katrijn from the CM was impressed with the building plan. As reported, Cy specifically also studied for "houses in function of care". As a result, Katrijn was able to inform us that nothing really needs to change about the plan. Depending on the rehabilitation, we may have to rearrange the bathroom, but everything else is completely approved!
Our dear neighbors on both sides have given their approval for
the extension. Therefore, tonight we will submit our building plans
to the municipality!
The search for decorating the house will start tomorrow, because
Annelies will make a mood board with friend Marieke.
Nice drawings and presents
Again, we received some beautiful drawings and gifts for Ella-Marie. It is very gratifying! Ella-Marie always shines a little bit brighter because she knows that so many people sympathize with her!
Have a great weekend!
We are looking forward to a busy, but also great weekend and hope you can also enjoy the time with friends and family!
