Yone is 12

22 10 2016

There it is.

The moment one jokes about after the first child is born… Hahahaha, wait till he goes to university… Before you know it you’ll be celebrating his 12th birthday.

Well. We did.

The usual recipe: no big fancy parties. A few select friends. One day for friends from school, another day for family. Homemade applecake. Last swim in the pool of the season. Bliss.

Advertisements




An interview on CHARGE syndrome

6 10 2016

Last Tuesday, October 4th, I was interviewed on live radio by Paula Romero, on her weekly show La Caja de Pandora, where she discusses everything related to disabilities in the broadest sense of the term. Her program themes range from Alzheimer’s disease, autism, rare syndromes, to interviews with parents fighting against the shutting down of special needs institutions or units.

A mutual friend connected us through facebook and Paula asked if she could interview me. I accepted.

This is the link to the interview. I’m on after minute 19, after Barbara Streisand… It’s in Spanish:

la10radio

La Caja de Pandora

Paula Romero has a daughter with CHARGE syndrome. In fact, we heard about Paula’s case when we moved to Tenerife in 2010 and I’ve been looking for her since. Now, six years later, I find her (or she finds me) and we talk in her show. This makes me extremely grateful. Dácil’s first pediatrician, not the specialist at the hospital, but the regular one we were assigned to when we moved to La Orotava, told us he had heard of another case of CHARGE here in Tenerife. Our hospital team in Holland told us to look for someone in Tenerife who would have some experience with either CHARGE or some other syndrome with multiple defects as it would be easier to get suitable help for Dácil.

None of this, however, was possible here. We were sent to the Hospital in La Laguna, because we live in the North of Tenerife. We found out that the doctor treating this (to us unknown) girl with CHARGE worked in the Candelaria Hospital in Santa Cruz. Only for capital or South Tenerife residents. We found out her name. We phoned, asked, tried, but we could not get through to her and I simply could not understand (not until today) why we should not see this doctor with CHARGE experience and had to go somewhere where no-one had ever heard of CHARGE. It was very frustrating.

And here I am, writing about my meeting with Paula, Naomi’s mother. She told me all about Naomi, who was born in 1970, long before anyone, anywhere (let alone here) knew anything about CHARGE. Naomi is going to be 46 in December.

This meeting, our conversation, the interview, it somehow feels as if part of a puzzle has fallen into place. I wasn’t even aware that this puzzle was still there…





Yone’s back to fencing

6 10 2016

Yone started fencing 2 years ago. The local Puerto de la Cruz fencing club is quite a prestigious one and has formed many a champion. Master Enzo Cherubino was responsible for all of these victories.

When I studied at the British Yeoward School, in the mid 80’s, I had a classmate who was National junior champion. And that’s quite an achievement for such a tiny far away place as Puerto de la Cruz. Dominique Schuchard’s photo is still hanging on the wall in the club.

Enzo Cherubino passed  away quite suddenly last august. Since then the club and its members have been through a phase of adaptation and renewal.

Yesterday Yone took up where he had left off before the summer holidays. Without Enzo, but with expectation and enthusiasm. And it felt good to be back.





Dácil is obsessed by PiPiPi

28 09 2016

I taught Dácil to move her thumb and index finger as if they were tweezers whenever I say Pi Pi Pi Pi imitating the sound of chicks or mice…

And I’m starting to regret it.

Whenever she notices me, she pulls down my head so my mouth touches hers and I have to sing pipipipi into her open mouth, or by her hearing aid or somewhere in he ear/head region, while she holds on tight to my neck and does the finger thing. We do this anywhere and anytime. During dinner, in bed, when we brush our teeth…





Yone is an Amsterdammer

12 09 2016

Our two week stay in Amsterdam was like a brief visit to paradise for Yone. He spent the days remembering and recognising streets, friends, ferries, classmates, foods, sounds and smells.

Amsterdam has become to Yone an idyllic spot where he spent the happiest years of his life, a kind of Eden where he was banished from and where the sun always shines and the patat always tastes better than anywhere else.

His butt stopped hurting from cycling after 3 days, as predicted, and from then on he became completely confident on the bike, even at rush hour, through the Spiegelstraat, surrounded by tourists on yellow rental bikes.

We saw many friends. We missed many others. We had a great family vacation all in all. And incredible weather!

This was our first afternoon, upon arrival in nieuw west, waiting for the keys to our temporary home (head in lap):

In Michiels Fire Van on our way to the beach:

At De Zwaan:

With Joost & Max at Buro Kees, NDSM

With suikerpoederoom Dirk on the Amstel:

With cousin Casper:





Dácil on the road

14 08 2016

We’ve always done our travelling in a straight forward, no-nonsense kind of way. Before kids, after kids and even with Dácil.

For Dácil we have a long history of inventing al sorts of useful and not so useful stuff… We have at home many items of vague quality which we’ve tried and thrown away almost inmediately. On the other hand there are items which we’ve used until she’s outgrown them, much to our regret.

The trip to Amsterdam gave me many a sleepless night on how to deal with transportation within the city. Bikes would be best, but she’s too big for a regular children’s seat in the back and I’m not sure if she’d be comfortable enough to not try to get out of it, which would turn every ride into a nightmare.

Her regular stroller, the one we normally use in Tenerife, is big, heavy and bulky. I wouldn’t be able to strap it to a bike… It’s perfect for a car boot, but not for Amsterdam. So first we needed a new stroller, we bought a MacLaren Major which folds like a regular MacLaren, only it’s a bit bigger and can hold Dácil’s weight easily. It arrived 3 days before our trip… Tight but in time.

And here in Amsterdam we rented a bakfiets which seats Dácil perfectly, with the stroller and her rucksack.

Dácil loves the wind, the noise, the bumping around on uneven canals…

We asked a tourist at the Vondelpark to take a picture of the four of us.





Yone’s first Whopper

5 08 2016

I remember my first Whoppper.

It seems pretty daft, superficial, uninteresting, but I vividly remember eating my first Whopper.

I was 9. We were on holiday in Canada. We went to the wedding of my mother’s niece to which we, as it turned out, weren’t actually invited or even welcome for that matter. My mother’s uncle emigrated to Canada many years before and his daughter was getting married. We spent some time with him in Montreal and then moved on to Toronto to visit my father’s best friend who left Amsterdam  in the 50’s.

I can’t remember why we decided to eat at the Burger King, it must have been one of those exotic things to do as fast food and hamburgers had not settled yet in Dutch every day life.

I was completely overwhelmed by the taste, and so was my mother. My father was not impressed at all and we didn’t manage to talk him into stopping at the Burger King for a second time…

There is a Burger King outside the cinema here at the mall in La Orotava. Yone and I went to watch the BFG. One of our favourite Roald Dahls. We don’t go to the cinema very often. It’s quite expensive and all films are dubbed in Spanish. But its summer holidays, exeptions are made. And after the film Yone sunk his teeth into his first Whopper.

 whopper