thank you. X
I just sent this email to the headteacher at school…
Please don’t feel the need to respond to this email at all. Or even read it. I just feel compelled to write in the hope that school may gain a greater understanding of EDS. The other morning you greeted us at the gate and were your usual lovely polite self telling me I looked well and that Noah looked happy as always. The problem with EDS is that what people can see is not the reality that we live with and this disconnect can lead to a huge lack of understanding. So I’m writing this for the boys.
The afternoon before you saw us Noah had gone for a playdate at Talita’s house. His knee dislocated while he was there. This is the 8th time that this has happened in the last 3 weeks. That night we had been up with him ALL night. He slept in 2 hour bursts and would wake up screaming in pain. He can’t have ibuprofen because the EDS has caused problems with his stomach and the year before he started school he was admitted to Great Ormand Street for almost 2 weeks with a stomach ulcer. Calpol doesn’t touch the sides. He was shattered and sore when you saw him. But he comes into school grinning his head off. Your school rocks for being a place that children can’t wait to come to. Noah rocks for being the happiest, most stoical child I have ever met, even when his knee aches and he’s not slept. But because he never complains and because we all try and laugh our way through it all, most people don’t have a clue.
The hospital consultant told him that he was too small for a splint and that physio might help, but beyond that there is nothing they can do. The consultant said this is front of Noah. Noah now thinks he will always hurt. The reality is that he might. That’s a lot for a 5 year old to take on.
Jack is the least affected. He used to dislocate frequently. But it’s still not easy for him. He now can’t join a football team because a regular sport where you have to change direction at speed puts too much pressure on his knees. He loves his sport, as you know. It’s built his muscles and helped his joints. But after every run and cricket match I will find him strapping ice packs to himself. Sometimes I find him carrying all the ice in the freezer and filling the bath. Very occasionally he cries and says its not fair that he can’t sleep because of the pain. His consultant told him he literally has to suck it up, and that he’ll get stronger. He gets on with it. And again is a happy, grounded awesome kid. But behind his smile is also a family who are in and out of hospital all of the time. He’s very grown up.
And Finn breaks our heart. The disconnect between the child you see in school and the reality he covers up is enormous. And can lead to a massive misunderstanding from his teachers. They must think I’m insane talking about an exhausted child when they see a Finn who mucks around, tries to make everyone laugh, plays football every second he can and never sits still. The reality is that Finn is struggling. His pain is constant. He is in more pain when he is still than when he is moving. So he’s constantly on the move, until he crashes and sleeps. His EDS affects every joint and organ. His bowel is so distended that he is on daily laxatives. Sometimes getting the dosage right is impossible. Last week he came home having had an accident in his pants. He had screwed his boxer shorts into a ball and hidden them in the bottom of his bag. He walked out of school and then burst into tears in my arms saying “Please tell me you can’t smell anything”. He’d been living with that all day. It’s happened a number of times. No one would have a clue.
He also can’t feel much sensation in his bladder. He has to wear a nappy if we go on a long car journey. He’s terrified of his friends finding out. He’s terrified of wetting himself. So he doesn’t drink all day. No matter what we say he’d rather become dehydrated at school than risk wetting himself. He’s also in constant pain. He struggles to sit, because it hurts. He struggles to sleep, because it hurts. He struggles. And you would never ever know it. He’s easily distracted and can’t sit still. He’s not being naughty. He’s in pain and uncomfortable and worrying about a million other things that an 8 year old shouldn’t have to worry about. His main focus is getting through the day without wetting himself or soiling himself.
And my body is slowly falling to pieces. My mum is 62 and has become unable to walk. I have the condition far more severely than she does. I do as much as I can while I can. I am on experimental drug treatments to try and control the pain. So whilst I might look well, I don’t feel it. With EDS peoples joints age at three times the speed of others. But their skin looks great. They look well! I now have the joints of someone who should probably have already died of old age! Thank you for telling me I look well, but I don’t feel it. It’s not the reality. It’s not the reality for the boys.
Sorry for the long email. I just hope it helps you understand the boys a bit better. I live in awe of all 3 and what they deal with.