ME Awareness Week – From The Parents Side

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.

Before ME Struck

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.

The protectiveness

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.

The heartbreak

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.

Hits: 6

You may also like

19 comments

    1. Thank you, as you know I do get very angry and bitter over it, you have heard me rant on about it and I thank you for that. I am not amazing I am just a Mum but C amazes me everday x

  1. It’s the hardest thing to see your child struggling and in pain without having much that can help. I know what you mean about coping, you don’t have a choice so have to just get on with it. All you can do is stay positive.

    1. That has been part of the hardest thing not being able to take the pain away. It is true all you can do is stay positive and keep fighting and ploughing on in the hope one day it will get easier or there will be something to help x

  2. Well done for making awareness of this it must be so difficult. It is very hard when your child is struggling one of my sons has quite a few medical conditions and a disability, it is so hard when you see them struggling I hope you can get her education sorted soon. X

  3. It’s such a big adjustment to a new ‘normal’ with a chronic illness, I hope that you and your daughter have more good days than bad.

  4. It must be so hard as a parent to see your child suffering. I have a chronic illness (lupus), diagnosed when I was 21. I’m lucky I didn’t have symptoms as a child, it’s horrible. Wishing you all the best. x

    1. I am so sorry you have a chronic illness also, I do know of lupus. This is why as you will know awareness weeks are so important to raise awareness as you just never know what each day will bring as I know we didnt know

    1. Thank you, this has been the thing the ME community has picked up on and are talking about and the easiest way to explain how our lives are

  5. this was so informative thank you for sharing. heartbreaking, and I wish a cuddle could make it better as that’s all you want as a parent. I’m so sorry to hear about the fight for education as well – that just is not fair!!

    1. Thank you I am glad it has helped with some understanding. Yes it is now two battles we face one for medical and one for education. So unfair a child who has an illness is treated this way

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.