Carrying on my week of posts for ME Awareness Week . Today I am talking about the parents side, on what it is like caring for a child with a chronic illness.
C has always been a bubbly, happy and chatty little girl. She was always doing something whether it was her dance class, scouts, playing, art, she was always busy. She loved school and got on with everyone, and loved taking part in after school clubs.
In September C started her new school, and was loving the freedom of going to school and back on the bus. Also socialising with friends and shopping with her friends. She was a normal happy-go-lucky child.
Looking back on old photos you can see what a bubbly and happy child she was.
Watching The Suffering
As a parent you are supposed to take away any pain or suffering. When C was little a cuddle and calpol would be all she needed. But this is something we can not make better, a cuddle does not make it better.
I have had to watch my child cry her heart out as she is in constant pain 24/7. Watch her heart-break as her friends have drifted off one by one, as they get on with their lives. I do not blame them they are young but it still hurts. Then there is the comments she is just being lazy, she just does not want to go to school any loads more. I wish she was just being lazy.
We have to watch as she struggles to the bathroom, where sometimes she collapses as her legs do not work. Seeing her crash after a hospital appointment and the extra pain she is in.
Then there is her education, she has not had any for months now as she is too ill. She has tutors all set but she is just too ill. She should have sat her GCSEs this year, although we are getting her graded it will be a fail. We are currently in the process of having to fight to get her education for next year. In a place where she will be able to be educated that will be adaptable to her needs. A child who does not have an illness gets education thrown at them, a child with medical issues you have to fight. Where is the justice in that, she wants to learn and wants an education, and we will fight all the way for her to get that.
We are hugely protective of C, when out with her and she is in her wheelchair, I see the looks others give her. If someone makes a comment about her we put them straight. People have said I do not know how you cope, I could not cope with that. What are we supposed to do, of course you cope you have to as there is no one else who will.
It breaks my heart daily watching her suffer, her eyes have always been her tell-tale sign she is not well. Every morning I go in to see her once she has woken up. I always go in with a huge smile on my face asking how she is just in the hope one day she will feel a little better. I try to stay positive and happy, but reality it breaks my heart and I do have my moments where I shut myself away and cry my eyes out. We have no idea what the future holds, but we will make sure we will fight every step of the way to give her the best we can.
She also has an additional medical problem and was admitted to hospital in February. We are still needing tests carrying out and she is in so much more pain daily. But due to the current CV we are having to sit tight and wait for things to get back to normal.