If you know me, see me out, talk to me you may not understand why I am writing a post about why I am struggling. But today I am speaking out for myself and many other parents out there.
As many of you will already know, I have a child with a chronic illness. This illness has robbed her of an important part of her life, she is 15 years old now and been ill since she was 12, so has never experienced the teenage years.
Every day I get up and wait for C to wake up, as I know she will have had a bad night due to being in pain, when she wakes she will message me and she takes her first medication of the day. I have to get her meals and drinks, sometimes help her to the bathroom.
I see on Facebook, or when talking to friends what their children are doing, laugh at the funny things they do, go through the worry when they are out and do not make contact or are late home. Listen to them moaning about the latest drama, while I am screaming and crying inside wanting to join in and do the same.
I get you are so lucky, at least you know where C is, you don’t get the answering back and slamming out of the house. I just say nothing where all I want to do is shout back telling them how my heart breaks everyday as my child is bedbound not being able to stand light or noise, sometimes not being able to walk, having no education, yes of course I am so lucky, but i don’t I just sit there and say nothing.
Although, she will not admit it I see the hurt, the loneliness in C’s eyes, as in her own words, all she wants to be is normal and go to school, go out with her friends and just have fun.
She has lost her teenage years, she has lost her education and although we have a very strong bond and relationship, there is only so much she can take of me and her Dad.
I know I am not alone as I hear this all the time from other parents going through the same.
If you know someone who is going through a similar thing, don’t forget them, we have lost a lot of friends as they don’t understand and just prefer to stay away than speak to us.
At the moment I am struggling probably more than usual, as C has just gone onto a new medication and we are dealing with the side effects so everything is mirrored.
If you know someone going through this, please just send them a text, give them a call or if you see them just ask how they are doing it really does mean a lot
I know I am not alone and it is not just us parents with a child with a chronic illness who has bad moments, Laura at dear bear and beany shares her week where she shares how the weather has reflected on her mood.