In the many times I have spoken to moms with kids affected by this very strange and insane disease I find it strange how difficult it is for us to go beyond living without the pain. It is so difficult to let it go, to give it up ...it defines us as people, as families, it may make us feel important, or maybe it takes hold of us and it wont let us go. I have to admit that when they told me at the hospital pain clinic that Jed was not chronic anymore, I so remember feeling shocked and feeling that I was being let down, like it was a bad thing, the disease had become such an important part of us that it was hard to let it go.. Then I remember thinking...….hey hold on….this is actually not a bad thing, it is a good thing for Jed to be pain free and happy and healthy….I thought I must let it go..so I did, I let it go…
Jed is now almost pain free for 3 years.
Weird but true. We hang on to the negative, it takes over and makes us feel important, like a devil inside of us, the pain defines us.
We hand out Jedi Tedis to kids suffering neurological pain all over the world, we send them so the kids know that they are not alone and that Jed is better and they can fight to get better as well. The Tedi are called Jedi Tedis, named after Jed, my little one who suffered from CRPS when he was 10. We send the details on Facebook pages that are associated with CRPS, so we can send these Tedis to the children suffering all over the world, the mom’s supply us with the kids names and addresses and we personalise a brave box with a lot of great goodies for the kids to empower themselves against these diseases, but we had moms who were angry saying we were trying to get money for our cause and that we were in competition with their causes. I remember thinking… hey ... we are all here to do just one thing and that is to help our kids get better, to do anything we possibly can to help our kids get better.
We cannot say someone is giving false information if they are saying that their child is better, we should be asking how and why, in the hope that our child may be the next to stop suffering from this terrible pain. I have been kicked off some sites and earnestly spoken to by the Facebook page founders, to keep my Tedis and stories to a minimum. But we cannot as we continue to strive to ensure that all children suffering, get all the help they deserve. If these kids still need help, especially those that are told they will never walk again, those that are not believed, or those that are told there is no cure, we will be here to help.
Always know that children have a good prognosis, their nerves are elastic, so keep fighting moms and lets get our kids pain free, they deserve this and that is want we must strive for in every possible way.
We know it is difficult to let it go...but we must, for the sake of our kids.
As Jed says: IF I CAN DO IT SO CAN YOU