Sunday, 9 March 2014

Super Mummy with a wonky cape

Tonight I feel exhausted. We have had a lovely day in the sunshine but overall it's not been the best weekend. This is because yesterday the sadness got through my armour and left me reeling.

Being Chloe's Mummy is a pleasure and a privilege. She tells me many times a day that she loves me and I get the best cuddles in the world. I pride myself on being someone who gets on with it. I celebrate all her incredible achievements and help her to feel that she can do anything. That's my job, helping her find a way in this world despite her dual sensory loss. We are so proud of her and grateful that she lives in our world alongside us. I love the fact she thinks life is fantastic and her Dad and I want to help keep it that way.

Sometimes however the sadness hits you right between the eyes. You cannot duck because it comes out of nowhere and you are temporarily trapped with the all consuming grief. Yesterday we were at her best friend's birthday party with twelve other beautiful twirling girls and I really felt her difference. The party was perfectly pitched and Chloe enjoyed herself but there was no doubt she needed me there with her. The fantastic, darkened disco room complete with flashing lights and loud music was a little girls dream-  just not my little girl. She was on my lap having a cuddle and trying to adjust to her surroundings while I held on to her and held back the tears.

The fact is it was a lovely party and Chloe's friends did look after her. The hostess was kind and thoughtful to her and as we left told Chloe a party wouldn't be a party without her there. What an absolutely gorgeous thing to say and it made her day. Unfortunately there was no getting away from the fact I had a very big wobble.

We got back home after seeking sanctury at another friend's house. I then preceeded to shout at my poor husband in a vain attempt to help me feel better. When this didn't work I got into bed and
howled. I let go of all the every day things that hurt but I try and brush aside. The way people stare at Chloe as she walks with her long cane and the occasional quiet and not so quiet conversation about  the blind child. How she wants to give everyone a hug and can't tell when her peers don't like it.  The scooters that rush past us on the way to school and give her a fright. The way she tries to run after her friends and loses them. The fact she finds eating so difficult in a noisy environment. How she works hard to interpret sound through her implants and can't tell us yet when her batteries have run out. The knowledge that she is embarrassed when she doesn't know who her friends are and sometimes is ashamed she can't see very well.

So I sobbed for a couple of hours, posted on Facebook and received some very supportive comments.
I made a promise to myself that I would adjust my Super Mummy cape as it had definitely slipped and put my armour back on. Chloe had no idea that I was sad. My biggest wish is for my daughter to carry on being the amazing, extraordinary, brilliant, happy little girl that she is. Life has more barriers for her, it is unfair but I want to give her the strength and confidence to feel anything is possible. So tonight this Super Mummy is very tired but I am ready to fight another day.


  1. What an amazing blog, very brave of you to put into words how you are feeling and what life is like. There were so many things in your blog that rang a bell with me and took me back to when my son couldn't join in with other children his age and that I always had to be there. This all changed when he could spend time with other children who had a VI for they were his true peers and he could learn from them. Chloe is very lucky, it sounds like she has an amazing mum, as long as she has you things will work out just fine xxx

  2. do you mind if I try to share on facebook? I am sure it will help other people understand how sometimes it's the small things you take for granted that can be the most difficult xxx

    1. Hi Liz I would be delighted. I feel I am writing it for all us Super Mums out there who are bring up our amazing Disabled children.

    2. Jane, how you are meeting this, rolling with the waves of how the reality of being is, is ... amazing. how you share and what you do is a gift to many others - I will share with some friends who I think will be touched. and inspired. xx

    3. Thank you Christoffer. That means a lot to me,