la Cour Marker Rasmussen: December 2009

Global warming does not seem to have hit Denmark this year. We have snow all over the place, and it is cold to the bone. However, we regret the inability of the worlds leaders to reach a strong agreement here in Copenhagen for the climate summit - they definately had the chance to make a difference. Too bad!

Christmas is coming up and we are looking very much forward to spending the holidays with Sebastian and Marie-Louise. Last weekend we celebrated Marie-Louises 2 year old birthday. A great day, with a nice family breakfast in the morning and a little party in the evening with Libbe, Jørgen, Marie, Thomas, Emilia, Malene, Stig, Anna, Thomas Emil, Aksel and Irene. Pictures are on their way. She is just getting so big and has started to talk a lot. Most of it in Chinese we think, but some of it we understand and that just feels so good. Marie-Louise is strong-willed, but also very caring, very sweet, funny and adorable. Well, the mother speaking ;-) I will try to post some pictures from the day soon.

Sebastian is doing fine. For the last 3-4 weeks he has started to ask us to talk about his childhood. He will say, e.i. at bedtime "mom, let us talk about my childhood. You start" and then both Tue and I have told him all kinds of fun stories from when he was a baby. One day he wanted to hear about his birth. And the days that followed. And suddenly it has occured to us that this is Sebastians way to ask about his illness. We have been a little worried actually that he never ever asked about e.i. his missing thumb, his hearing aid, his big scar on his tommy etc. But now, finally, he has found his way into this. We have not wanted to slap the facts in his face, and have been adviced to let him start asking himself. Well, he just did not. Untill now. Two weeks ago I asked him directly when he started his 'let's talk about my childhood': "what should I tell? Some of the fun stuff from when you were a baby, or the illness-stuff". Without hesitation he said: "the illness-stuff". It is definately brewing in his head and we talk a lot with eachother on how best to address his need to know. I think we are on the right track, and will be able to help him through this very delicate phase the best we can.

Tonight Sebastian tried to distance himself from the 'Fanconi' illness as we call it. He said "I am no longer ill with Fanconi". "Unfortunately, yes you are Sebastian". "No, I do not feel ill", was his answer. "No, now you are doing fine. But one day your bloodcounts will most likely drop, and then we will talk about how to correct this". "You are lying, mom, my bloodcounts will not drop. It is not true". "Well, as I said, you are doing fine, and you numbers are very impressive for the time being. We would like them to stay this way, this is why the doctors help us monitor them often. In order to keep you healthy". This is really heavy stuff to discuss with your 5 year old child. But I believe that Sebastian will take his time to let it in, and we will try as well as we can to help him digest.

Since last update there has come yet another diagnosis to the long list: phimosis (forhudsforsnævring). It is not a big thing, but it always hits us finding new problems, and this will have to be corrected by surgery, which again means hurting for Sebastian. Not really our cup of tea. But it has to be done. The surgery is set for the 4th of January, and will hopefully be short and uncomplicated.