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