I didn’t believe that a 12-year old boy could get sick and sicker just by going to school. That first he had to skip Physical Education (this boy loved football!), then more and more classes until there were no classes left to skip.
I didn’t think it was possible for a 12-year old under any circumstance to end up not being able to attend school a single day for the entire semester. A 12-year old who up until 6 months ago seemed happy, enjoyed school and got good grades. And I didn’t think that he still – two years later – would be absent from his class.
I did not at all think that a 12-year old who developed normally until he was 12 years, six months, seven weeks and four days old, would seem to suddenly have developed severe dyslexia and even more severe dyscalculia. That the multiplication tables could get deleted from a brain which had effortlessly saved them without trouble.
I didn’t believe that a 12-year old could have pain just about in every part of his body or that he would need to be supported to get to the toilet and back again.
It never occurred to me that a 12-year old could get so sick just by having friends over that I would find him in tears in the bathroom and have to tell his friends to leave – in the middle of a fun game. They had been over for half an hour. – Or that it would continue like this for the next two years to come.
I didn’t believe that a 12-year old could become really sick only by normal background noise at a restaurant. So sick we had to leave our meal before dessert. Before his favourite food was half eaten. The noise hurt so much he had to run out of the restaurant and wait outside.
I didn’t believe that a 12-year old could be so sick that he found it ok to be in a wheelchair while shopping. «This way everybody can see that I am sick»
I certainly didn’t believe that a 12-year old, after being brought to school in tears and exhaustion for three months – until both his doctor and family realised that he had to quit – could be so sick and exhausted that he resembled someone with severe aphasia. That he would even lose his words. And that he would lose them again every time he would over-exert himself for the next two years. That is – there are words coming out of his mouth, but the words have no meaning. They don’t make sense and it is impossible to understand if he is trying to communicate that he is hungry, thirsty or if he needs the room to be cooler or warmer.
I never thought that a 12-year old could be so sick that he wasn’t able to take a shower until he was 14. Or that his parents would have to brush his teeth for him, like when he was a toddler. In bed. Lying down.
The 12-year old is now a 14-year old. He is still sick. Maybe even worse, actually. He has had a fever for five months. You don’t belive it? No. I didn’t believe it either.
I didn’t believe it.
It never even occurred to me.
Not until I experienced this happening to my own son.
By a former non-believer, waiting for what is going to happen the next two years.
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Tilbaketråkk: Jeg trodde det heller ikke | ME-mammas betroelser
I am so sorry for what your son and all of you who love him are enduring. I hope he finds some relief and eventual improvement. I also hope that in the meantime he can develop new dreams and ways to live.
Thank you for writing about the mental transformation from «No way could this happen» to belief — and support.
I totally understand your sons and your own pain and sadness. My daughter became sick at the age of 9 and could not read or do math for three years and was bedriidden as well. Look into Ehlers Danlos. If your son is hyper mobile he could have EDS, POTS and eye convergence. Kids with hyper mobility can get ME/CFS for some reason. But by addressing his hyper mobility, POTS and eyes he can get some relief. I’m sorry that your family has to go through this, it’s so tough.
We’d like to add these comments from @debbiecmhb on Twitter:
“I wouldn’t have believed that parents are often then accused of making their child sick; or that children would be told «if you wanted to get better you would»; or that children are left without education for years because schools simply won’t give provision; and just how incredibly strong all the families I’ve met are.”
– And we couldn’t agree more!
It is tragic to be sick at such a young age, but what makes the situation even worse is the fact that our children are left with no help from the medical community, but are forced merciless through a school system which makes them sicker. Mothers are left to fight the injustice of such a situation, often living in fear of child protective services who falsely accuse them of making their children sick. A situation which is beyond any nightmare imaginable.
I am convinced we are close to getting ME figured out and treatments will be available in a few years, but scientist and researchers have to be reminded that children as young as 3 years old can get ME. We have to keep spreading the message that many mothers with ME have children with ME. This fact alone clearly points out that ME is a transmittable disease and as such has to be researched as an infectious disease.
For this reason I would like re-blog messages of mother and children with ME between my science blogs and any mother who wants their story to be told can send me a secure private anonymous text via https://forms.hush.com/science.me
P.S. Thank you for your courage.
Can I re-blog ?
probably just a shot in the dark but because of the ongoing fever; http://www.ncbi.nlm.nih.gov/pubmed/16392898 ?
so sad for kids