A Mothers Pain

As you will know May is ME Awareness month, and I have been raising awareness, I also throughout the year give updates on C.  One thing I rarely do is talk about how it affects a parent.

Today I am going to write a pretty raw post on how myself as a Mum feels, this post also reflects how other parents feel as well.

When I first held you in my arms, I felt a love that I had never experienced before, and at minutes old I made a promise to you, that I will love and protect you.

You were a dream baby, and I loved being a Mum to you and watching you grow and your personality come through, you were such a happy and healthy child.  Everywhere we went you had people entertained, we were always praised on what a lovely polite child you were.  Now do not get me wrong, you were also a typical child at home behind closed doors.  I remember once when you were about 4-5, your teacher heard you having one of your tantrums, and she came up to me with shock on her face, as she could not believe it was you, she was genuinely shocked, of course this was typical behaviour for you at home, and we loved your feisty side, but you knew how far you could go.

You continued to grow and in time moved to your next chapter, of starting Secondary school, you took all this in your stride, nothing fazed you.  You settled in well, although at the time we did not know you were getting over Glandular Fever.

You became really ill on New Years Eve 2015 and that was the day our lives changed forever, in a split second our lives changed. I will not go over everything again, but you can find my previous posts in my Living with ME  section or my weekly update posts.

As a parent, all you want for your child is to be happy and healthy, take away their pain and make them better, but I can not do this, I have to sit and watch you suffer day after day, night after night and it breaks my heart. Below is just a few emotions I feel everyday.

Hope – I wake up each morning, with a heavy heart, but also hope that when I walk into your bedroom and ask how you are, that you will smile and say I feel a bit better.  I keep on day after day hoping this will happen.

Failure – Unlike having a bug where cuddles and calpol make things better, I can not make you feel better, I have to sit there and watch you suffer.  If I could make one wish or wave a magic wand it would be that I can take on your illness so you can lead a normal life again.

Anger and Bitterness – I am very angry and very bitter, when I see people talk about days out and holidays, what they are doing in school holidays and all the fun they have had.  I even feel this way when parents complain about attitude.  I feel this way because it is another constant reminder of what you are missing out on.  Obviously, I do not begrudge others of this, but it is just another reminder of how you should be living your life, instead of being bedbound.

Loneliness and Isolation – I have watched people distance themselves, I have even had said to me, ‘I don’t care as it doesn’t affect me’ and this hurt, I have watched your friends disappear and get on with their lives and I know it hurts you.  But there is also those friends who have stayed and do care, and those are the friends who we want in our lives.

Heartache – I hide this very well, no one really knows how much I struggle with this, friends think I am coping as I paint a smile on my face and laugh, I rarely post anything on my private Facebook about how I feel. I cry daily watching you suffer, I have a constant heavy heart.

One thing this illness has given us, is an amazing bond, I can put a smile on your face, even in your worst moments, you know I will fight your corner and do anything in my power to help you.  We can talk about anything and although I do not see it everyday, you do still have a bit of spark in you, and your personality comes through.

Sadly, this is not just how I feel, but every parent of a child with an illness, so if you see me or someone you know, smiling and laughing,or they say they are fine.  Just remember this is a mask and inside they are feeling very different

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  1. Baby Isabella
    27th May 2017 / 10:58 am

    This struck a nerve with us. It’s reversed here at the moment with my mummy in hospital with another collapsed lung and all my family want to do it make her better but can’t. We are all going through the same emotions. Angry and bitterness, overwhelming sadness and a horrible gut feeling of dread. Nothing can compare when it happens to a child and how a mother feels, so we cannot even begin to imagine how you must be feeling. My heart goes out to you. Hope is such a powerful thing…never let go of it. Please tell your daughter from us that she sounds like a wonderful resilient girl and she should be proud of herself for living through her condition. Cherish the bonding times. Does she write?

    • admin
      27th May 2017 / 11:22 am

      I have been following your story and your mummies illness, I am sure your cuddles really help mummy feel better. C is amazing, it is only the odd day where I can not get some sort of a smile out of her. She used to write and was a great writer of stories and poems, she even had some published, but since her illness and with the brain fog she just can not do it anymore (at the moment)x

  2. 27th May 2017 / 8:11 pm

    Sending lots of love to you, from another mummy who knows what it’s like not to be able to make things better. Even though she wants to more than anything x

    • admin
      28th May 2017 / 10:36 am

      I am so sorry you are feeling this as well, wouldn’t it be nice if we could just wave a magic wand and make it all go away x

  3. Nayna Kanabar
    27th May 2017 / 9:37 pm

    It must be so heartbreaking for you as a mother to watch your child going through this psin amd not having the power to make it go away. All I can say is that although you can’t make the pain away at least you are there providing moral support all the time.

    • admin
      28th May 2017 / 10:35 am

      It is one of the hardest things I have ever experienced, all I can do is be there for her x

  4. Ali Rost
    28th May 2017 / 2:48 am

    I’m so sorry for what your family has been dealing with. Honestly I can’t imagine how difficult it must be. Thank-you for being brave with your words. I guarantee they will touch other parents in similar situations x

    • admin
      28th May 2017 / 10:32 am

      Thank you, a lot of parents have seen this and have all said they could have written this x

  5. Gareth Torrance
    28th May 2017 / 7:29 am

    This was so well written and from the heart. The honesty in it is so powerful. Well done for being able to put it down in words.

    • admin
      28th May 2017 / 10:31 am

      Thank you, I could have said a lot more if I am honest x

  6. 29th May 2017 / 9:03 am

    This is heartbreaking to read and I am sending warm tight hugs.Waking up every day with such hope and having to see a child suffer is something a parent shouldn’t go through. I can’t begin to imagine what you actually go through because no matter how you try to explain it here, we will never know the depth of your pain. I have no words for you but I would give you a hug with no words because I wouldn’t know what else to say to you.

    • admin
      29th May 2017 / 10:08 am

      Thank you, it is heartbreaking, but sadly it has become a way of life, you just get up and carry on day after day in the hope things do improve x

  7. 29th May 2017 / 12:03 pm

    It’s awful to watch your child suffering knowing that you are unable to help. I’m so sorry you are both going through this. People often forget how stressful it can be on the whole family not just the person suffering from the condition.

    • admin
      29th May 2017 / 3:30 pm

      It is one of the hardest things in the world to watch, I was talking to a friend yesterday and she said she cant even begin to imagine what it mustbe like x

  8. 29th May 2017 / 5:46 pm

    Oh honey. I just don’t know what to say! As you know I have been reading C and yours story for a little while now, and always thought about how your daughter was affected, without thinking of the massive effect it has had on you.
    You are so strong and C is lucky to have you fighting her corner. Clearly you have an unbreakable bond and this is very special.
    I hope one day to read your blog and find that C has turned a corner and is improving slowly but surely xxxx

    • admin
      29th May 2017 / 6:07 pm

      Thank you, I am struggling a lot lately, more so because C is so ill, she is hardly eating now and I am stressing a lot more than usual, plus I read the same thing from other parents and felt I should maybe share how the parent copes and feels. I hope one day to post a happy post about her as well x

  9. 29th May 2017 / 5:58 pm

    Thank you for being so open and sharing your story. I will keep you and your family in my prayers. This breaks my heart!

    • admin
      29th May 2017 / 6:05 pm

      Thank you, I just needed to get this out and also share how every other parent feels as well x

  10. 30th May 2017 / 12:53 am

    Although it really hurts my heart to read this post I think it provides a really vital insight into how you and your family are feeling. I can empathise with a number of points, especially people distancing themselves. Sending you lots of love and well wishes xxx

    • admin
      30th May 2017 / 9:07 am

      Thank you, I did not write this post to hurt people or make anyone feel bad, I wrote it to voice how myself and hundreds of other parents feel each day and to try to show how this affects the whole family x

  11. melissa major
    30th May 2017 / 9:44 pm

    Thanks for sharing your story, it’s heartbreaking. Sending out my prayers for you all

    • admin
      30th May 2017 / 10:18 pm

      Thank you, it is something I felt needed sharing along with ME Awareness month, to share the other side of this illness x

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