Archive for the ‘family’ Category

Looking at this photo from the nursery in Tsarkoye Selo, the tsarevitch did have opportunities to play. I wonder whether the tsarina had him accompanied by the sailor whose job it was to keep Alexei from bumping into things. Makes you realise how rare and valuable normality is for the modern hemophiliac.

My father died last Thursday. He had been through a world of pain for months, before he could finally let go. It was the proverbial old man’s friend that came to his aid for the departure. Fortunately, most of his direct family-members were present when he died. We could all participate in the postmortem care, with the loving assistance of  the GP and the health workers present.  He is now lying in repose with a most peaceful expression on his face. Helping to prepare his body for this proved to be rather confronting for me, because it was the first time I could closely study the gangrenous wounds on his leg in a very long time, as they had been permanently covered up with bandages and ointments . It was only when I saw the skin of his complete lower legs -black and textured like charred wood- when I realised how spot on his description had been of the excruciating pain in his legs. “It’s like they are burning my legs with a heat gun”.  I can only feel contempt for the medical professionals (the “doctors”, not the nurses) who treated my father as an Alzheimer’s patient, while he was fully conscious but suffering from a maddening pain that rendered him delirious. Categorically, they refused to ease his suffering with effective pain-medication in fear of medication abuse. Although the end may have been inevitable, it could have been with less abuse, manhandling, humiliation and pain. It took a humble GP and very dedicated hospice workers to recognize this and lend some dignity to my father’s final days.

Christmas might be in November this year. Leon has been quite enthusiastic, exploring the contents of his advent calendar.

We do live in unusual times. I thought we had to explain to our post-post-modern kids what an LP is, or a walkman, but the present is much more futuristic than I’d imagined. Leon asked me the other day what this guy was doing with a worm in his mouth. It took me some time to realize he was pointing at a man smoking a cigarette.

Driving home from my father’s sickbed, with two adult daughters in the car and a toddler in the back, along seemingly endless polder roads. Talking, singing along with the songs of the moment and listening to an episode of The Moth. Moments like this make you realise how special your children are. And how privileged you are to share time with them.

Just completed our unpacking session of our first load of ReFacto AF. The successor of ReFacto® moroctocog alfa (Recombinant Coagulation Factor VIII) is manufactured with a reduced risk of viral contamination. ReFacto AF uses an albumin-free cell culture manufacturing and purification process that is free of exogenous human- and animal-derived proteins. So, no more hamsters for Leon!

We all want our kids to grow up. Fast. But sometimes you’d wish time to slow down a little. Last Saturday, Leon & I visited the St. Bavo Church in Haarlem. We wandered over the gravestones, lit a candle for Opa and listened to the church choir practicing. Everything was nice and well until it was time to go home and I put him up on the back of the bicycle. All of a sudden the little man cried out in angst: “We are all going to die! Mamma is going to die, you are going to die, we all end up in the hospital and die.” It took quite some time to calm him down but it left me with a sense of wonder. Three and a half is rather young for existential fear, isn’t it?

The Hemophilia Society Varanasi Chapter shows the brutal reality of life without factor 8. Thank you hamsters, Dutch health insurance, recombinant technology, novoseven and cyclocapron.

Last Saturday, we had an unexpected visitor. A lost little swan, with a nasty abcess under its beak. Coaxed the critter into the hallway to await the guys from animal rescue and actually had some time to have a good look at the bird before it was whisked away to the bird sanctuary in Naarden. It reminded me of the many sad little (and big) birds I’ve taken home over the years, a good many of them dying in the process. From an oyster catcher that expired on the doorstep of the bird hospital to a cocky seagull that camped out in a rabbit pen for a week before flying off.