A Mothers Pain

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.

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  1. 21st November 2016 / 12:17 pm

    People looking inside in, will never understand. Forgetting prying eyes, getting the help from medical professionals is always a fight I feel, schools rarely understand and just worry about their annual performances etc. It sucks. It would get to you because you wish your lovely daughter doesn’t have to be in this situation, as strong willed as she is, it pains you and you being there and doing everything for her means you’re being the best parent you can be and I’m glad you realise you are!

    • admin
      21st November 2016 / 12:44 pm

      Thank you, it is just so hard at the moment, we have yet more symptoms and more fighting going on but also know other parents are feeling the same x

  2. Dannii
    21st November 2016 / 4:29 pm

    I cant even imagine what this feels like. My first child was born just a week ago and I hate seeing her cry, so I just can’t imaging this.

    • admin
      21st November 2016 / 7:19 pm

      Congratulations, as you now know the love you feel for your child is amazing and you would do anything for your child x

  3. Natasha Mairs
    21st November 2016 / 6:14 pm

    I knew a girl who live not far from me when I was a teenager and she had ME. She had to go to a special school for kids who had missed a lot of schooling, but sometime she couldn’t even manged the 6 hours a week, her illness was really hard on her and her mum too who had to help her with things.

    • admin
      21st November 2016 / 7:15 pm

      It is hard, C is still at her school but not in lessons she has 1-2-1 tuition 3 hours a week if she can manage it, it is so hard when you desperately want her to live her life x

  4. 21st November 2016 / 6:30 pm

    I can’t imagine how hard it must be being a parent of an ill child, I sometimes look at my parents with awe at the times they have stood by me with all I have suffered from and put them through.

    • admin
      21st November 2016 / 7:14 pm

      It is hard, but as a parent I can honestly say you do it and you will do anything for your child, my post has been shared by friends who are also parents of children with chronic illness and they have all agreed it hits the nail on the head. It is hard but that is what parents do x

  5. 21st November 2016 / 8:17 pm

    The constant defending on your girl must be tiring enough in itself, you are so amazing and I cannot even begin to imagine how hard life can be x

    • admin
      22nd November 2016 / 11:42 am

      It is very tiring, and I had to battle again yesterday at the consultants and I am still fuming about it now

  6. Anosa
    21st November 2016 / 8:39 pm

    In situtations like these I run out of words to say (type) and just want to send a (virtual) hug because God knows you’re doing everything for your child except taking their place and I know you would in a heart beat.

    • admin
      22nd November 2016 / 11:41 am

      Thank you, believe me if I could take her place I would x

  7. Harriet from Toby & Roo
    21st November 2016 / 9:53 pm

    Sending you both all my love sweetheart, I can’t possibly imagine how hard that must be xx

    • admin
      22nd November 2016 / 11:40 am

      Thank you x

  8. 21st November 2016 / 9:54 pm

    Oh Hun its awful what you and your daughter are going through. The worst part is not knowing how to make the pain go away and that is something I know from personal experience.

    • admin
      22nd November 2016 / 11:40 am

      After a visit to the consultant yesterday it is much more than physical pain now as well 🙁

  9. Teresa Bowen
    21st November 2016 / 11:21 pm

    The daughter of one of my school friends suffered from this horrid disease. All her teenage years were lost to it. Now in her 20’s she is at university, studying for her Master’s, living independently. Things her parents worried would never happen. Fingers crossed, there will be light at the end of the tunnel for you and your daughter.

    • admin
      22nd November 2016 / 11:38 am

      Thank you, I really love hearing stories like this with a happy ending so lovely to hear x

  10. 22nd November 2016 / 7:43 am

    Great post. Many people are dealing with all sorts when it comes their health and that of their children. I hope they read this post so they feel motivated.

    • admin
      22nd November 2016 / 11:38 am

      Thank you, I have had such great responses from other parents going through the same x

  11. 22nd November 2016 / 9:59 am

    It must be so tough dealing with people who can not understand what your daughter is going through x

    • admin
      22nd November 2016 / 11:37 am

      It is, had a little meltdown with the consultant yesterday too which didn’t help either x

  12. denajayne
    22nd November 2016 / 10:06 pm

    Theres nothing worse than those closest to you not understanding. Big hugs xo

    • admin
      25th November 2016 / 9:54 pm

      I know, I had my poor mum in tears the other week when I flipped out and cried and she said she doesnt understand but tries, which she does, and my mother in law is the same x

  13. 23rd November 2016 / 3:54 pm

    Your post made me want to cry. I am sorry firstly that your daughter is still going through this. I am sorry that you are struggling, and are justifiably angry with the World. However your blog is amazing and you are helping countless people who are going through the same things as you are.
    You are stronger than you realise, and you are coping with it all.
    I hope that next year will be an easier and healthier year for you all xxxx

    • admin
      25th November 2016 / 9:49 pm

      I am very angry which is common from what I have been told, things are a struggle but we will get through it x

  14. 23rd November 2016 / 7:14 pm

    It must be very hard for her and for you. It’s a shame there isn’t enough know about it and the condition isn’t recognised by doctors at the moment. Hopefully this will change in the near future and something is found that can help x

    • admin
      25th November 2016 / 9:47 pm

      It is hard and frustrating, and not helped by the lack of knowledge the medical profession have as very few actually understand the illness. Hopefully one day things will change x

  15. Tamsin
    11th December 2016 / 7:51 pm

    My son doesn’t have a chronic illness, but I do (Well, several). I feel stressed, upset, useless and so many other things because I feel like I am not able to do everything I want with my son – So I understand, but from the POV as someone with chronic illnesses. Sending love.

    • admin
      13th December 2016 / 12:23 pm

      I am so sorry you are suffering and can imagine had hard it must be for you and how you must feel caring for your son whilst suffering hugs to you both x

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