As a parent all you want for your child is to be happy and healthy and enjoy their life, from that moment they are placed in your arms you have dreams for them, you want to protect them and take away any pain they feel. But what happens when you can’t take that pain away, when you have to sit and just watch your child suffer and know that you can not do anything.
I have learnt a lot this year, as regular readers will know C who has just turned 13, has been ill since New Year, and has been diagnosed with ME/CFS. Unfortunately, like many other parents with children suffering this horrible chronic illness, there is no magic cure, there is no tablet you can take, there is also a lot of professionals out there, who do not believe this is an illness, or who just do not understand the illness.
A lot of people just think your child is being lazy, does not want to get up or go to school, just can not be bothered. I really wish this was the case. As a parent you not only have to care for your child who is so exhausted just by getting up and going to the bathroom at times, who sometimes can not even walk, who is in so much pain they can not move.
Whilst caring and dealing with this daily, you are also fighting with the medical professionals to try to get help and support, you are dealing with school because they physically can not attend. You are also dealing with your own emotions as well as the emotions of your child.
I have friends who say they could not cope with it, I have relatives that just do not understand, and through no fault of their own with their suggestions, they make me feel an inadequate parent.
I am struggling at the moment, and have shut myself off, I am angry at everything, angry at everyone, I am jealous and emotional and I apologise but I can not help being jealous of seeing about someones child doing this or going here, just having a life. How can I not be when I have to watch the pain in my childs eyes, hold her when she cries as she just wants to feel normal again. I watch the looks when on the odd occasion we go out and she is in her wheelchair, as she can no longer walk around the shops, where people stare at her, and it takes all my effort not to say something.
So to all you parents out there, with children suffering a chronic illness, I am shouting out for you in the hope that even for a few minutes you do not feel alone, you are not a failure and you are the most fantastic parent in the world.