A Siblings Story

Reamy Sauce Leaves No Bruising 

There was a 50 percent risk of me being born with haemophilia as well, but I escaped. It can sometimes feel unfair that my younger brother Mika had the same odds, but drew the short straw. We have haemophilia in the family. Mum’s maternal grandfather had it and mum was a carrier.

Of course the haemophilia has affected our relationships as siblings, but I don’t think it has done so that negatively. We were forced to learn to be considerate to each other.
I could get really cross with Mika when he was little. He used to hit me, but I could never hit him back. I can remember an evening round the dining table when he sat teasing and poking me. I wanted to poke him back, but wasn’t allowed to. He was a haemophiliac. Then I spotted the sauce boat and thought: cream sauce is soft and any rate. So I poured the sauce all over him. In the same way I remember a time when mother, in her frustration at not being able to grab hold of Mika hard, got the hosepipe out. Not in a nasty way, but to signal “That’s ENOUGH now”. We laughed about it afterwards. Once she took him firmly by the ear to make him sit still, but then his ear went all blue and swollen and mum had an awfully bad conscience.
Once, I could tell that Mika was exploiting the fact that he was a haemophiliac and was teasing me a while lot extra. He knew I wasn’t allowed to hit back.

It’s easy to favour siblings with haemophilia. People have asked me whether I found it irritating that Mika got so much attention. For example, he got presents more often and came home with new toy cars whenever he had been to the doctor’s and had injections. But I never thought of that as being unfair. I mean, I thought it was a shame for Mika too.
Mum would sometimes have no choice but to be unfair. Mika and I could argue over a car and get into a tug-of-war over it. When mum came, I knew that Mika would get the car, not me. She appreciated that it was the only way to avoid escalating the conflict, and I just had to grit my teeth. Good job I was six years older. We didn’t compete that much.

I know that mum sometimes had a bad conscience about giving me so much responsibility when I was young. I had to grow up quickly, loo after Mika and protect hi from everything dangerous. I could never relax when I was together with Mika in the garden, I was on my guard, dashing about the whole time.

I knew there were times when I clambered up onto the roof to get a bit of peace and quiet. I would sit there reading, all on my tod, when no one saw me. As soon as I was anywhere near Mika, I felt I was shouldered with the full responsibility and could never relax and concentrate on reading.

I can remember that Mika’s friends could become quite distressed if the game ended with Mika banging himself and having to have a jab or go to the hospital. They have a sense of guilt and thought it was their fault that Mika was in pain. Mum was very careful to explain that they were not the ones who had hurt Mika.

Mika ran about constantly when he was a kid – never sat still. We finally clicked that if he was sitting still, something had happened. Then he was hurting somewhere and it was time to go to the doctor’s.

Our summers and holidays turned out a little different due to Mika’s haemophilia. We would often go on camps and holidays together with other haemophilia families. There I noticed that our family was not quite like other families. Many were so overprotective that I felt sorry for the children. Some children couldn’t take a step without the parents screaming “CAREFUL!”. The children ended up just sitting completely still. There were parents who went along to camp, even though the children were teenagers and there were no other parents there. That took its toll on the children, I could see that in their faces.
Mika races Salon, plays floorball and has learned to skateboard. Mika has been allowed to do whatever he wants, but we have taken care of him and worked out a strategy for him to learn sports.

When he was supposed to be learning to ride a bike, we first had to figure: Where can he fall for a soft landing? We chose a street with lots of bushes and grass and his instructions were: If you can’t keep your balance, veer into the bushes. Mum and I were also at the ready.

Mika has a motorbike he drives to school on. He took his motorcycle driving licence when he was sixteen and failed to tell the driving school teacher about his haemophilia. It was only after a few sessions that mum informed the teacher and issued instructions about what to do if anything happened. Then the teacher got really afraid.

Today Mika won’t tell people about his haemophilia. At his new school only two friends plus the teachers know he’s a haemophiliac. He doesn’t mention it because he’s nervous he won’t be allowed to be together with his friends when they’re in full swing with Soft Airgun, say.

When Mika went to confirmation camp, only the priest knew he had haemophilia. Mika filled the fridge with his medicine and went off on his own and had injections every other day.
Those of us in the family don’t give much thought to Mika having haemophilia, but others who are close to the family can get nervous. Granny, for example, didn’t dare take Mika along to the summerhouse when he was young. The other cousins of the same age were allowed to go, but not Mika. It was tough on him.

The teachers were also nervous to begin with, until they had got used to it. There again, Mika had a school friend whose mother used to take Mika with them at the weekend without any problem.
Mum began administering injections herself when Mika was six. When he was nine, he was injecting himself.

I’ve moved away from home now, but I always have medicine in the fridge at home so that Mika can come and visit any time without needing to plan it and without needing to bring his own medicine. I know the school also has medicine in the fridge.
Mika never complains, but sometimes, when it’s time to have his injections, I can hear him sigh and say: “Just think if someone could invent a pill instead of these syringes”.

Over the years Mika has learned to sense in advance when a bleed is on the way. As a person with haemophilia, you need to know a lot about your own illness and be able to treat yourself.
I can remember once when Mika was twelve and had cut his hand. We drove to the hospital and they didn’t have any more medicine there. We had to drive home and fetch our own medicine, but the doctors aren’t allowed to inject medicine brought in by the patients themselves, so it ended up with mum having to give the injections herself.

Mika has been lucky to have such a stubborn and committed mother. She doesn’t give up just like that. When Mika goes to the hospital because he has haemarthrosis (bleeding into a joint space) and asks for an extra dose of medicine, the doctors will sometimes examined the knee, the wrist or the elbow and say: It’s nothing, just go home and rest. They assume he’s a perfectly healthy, well child. But mum knows that Mika needs to have medicine straight away to stop it from turning into a major bleed, so she sticks to her guns and refuses to leave until Mika has had his jab.

Many doctors know nothing about haemophilia, and you can’t blame them for that, given that there are only about a hundred severely ill persons with haemophilia in the whole of Finland. So Mika has to become an expert himself.

Mika can’t do exactly the same things I’ve done: I work in the metal industry, and that career path isn’t open to Mika. It’s too heavy, too risky. I did my military service, but Mika can’t do that.
There’s a portrait on the wall of me as a one year old and of Mika as a one year old. The pictures look alike, but if you look really closely, you’ll see that Mika has a big bruise on his forearm.
That’s roughly what our lives are like. Mika lives the same ordinary life as me – apart from a few extra bruises, injections and hospital visits. A normal, yet extraordinary life!


Mikko, aged 24 from Finland

Taken from the book An Extraordinary Ordinary Life – 9 stories about haemophilia