Lovely Boy

I haven't mentioned that our son has haemophilia.

It's a condition which means his blood doesn't clot - he has severe haemophilia so this means he has less than 1% of the clotting factor which most of us have. It's a genetic condition, my dad had it, so I knew that when I was pregnant with my babies - if they were boys - that they would have a 1 in 2 chance of having haemophilia. It's the same probability that my girls are carriers.

All this is kind of serious but also manageable. Ed flies about doing all the things 5 year old boys do with no sense of restraint at all. He can get very painful bleeds into joints and muscles, has horrible looking bruises much of the time and if he bangs his head hard it can be very serious indeed. However, when he does get these injuries there is a now a very effective treatment - thank heavens! When my father was growing up he had no treatment at all and spent large parts of his childhood in bed.

Ed has an IV injection of the missing clotting factor which works well and quickly. Up to recently whenever he has needed treatment I have taken him to our local haemophilia centre and they have given it to him. Recently, however, as Ed has started his second year at school he has started a prophylactic treatment once a week to try to protect him a little in the subsequent days. The factor stays in his system for sometime in diminishing amounts as the days progress. And I am learning to inject him so that eventually I can treat him at home rather than trekking through rush-hour traffic along with the other two kids after school. It also means that staying away from home and going on holiday will also be less stressful.

But, injecting your own child is a strange and tricky business!! I practiced on the endlessly kind and patient nurses initially. Finding a vein and figuring out which direction it travels under the skin seems an art as much as a science. And last week and this week I managed to treat Ed. He's so patient with me. He holds still while I clumsily poke around - and reassures me, tells me I'm just learning, tells me it's ok! I'm stressed before we go (hope I hide that from Ed!) and very proud of myself when I'm successful.

When he was a toddler and needed treatment it was such, such hard work to stay calm. He struggled and sweated and fought and it sometimes took the nurses literally hours to treat him. I'd feel as if I was colluding with them against him as I tried to hold his struggling body still - and he didn't understand and I couldn't explain to him. Today he holds out his arm and bossily reminds me to put the torniquet over his sleeve because it pinches and to clean his arm 'properly'. I am very proud of his open and sunny attitude towards his condition. He is utterly pragmatic about it and this helps us to be pragmatic as well. Amazing.