I hate my son’s disability. I would take it away in an instant. (I never really understand why people say that they wouldn't??)  I hate it because I have to watch him struggle every day and it literally breaks my heart. But I hate it equally because it has taken me away from the life I would have had with his twin sister. 

 

I regularly feel like she gets neglected. Obviously I am not talking in a ‘call the Social Services kind of sense’, but neglect is definitely how it feels.

Every time she asks me to play snap, if she can play hairdressers, or if I can read her a story, her brother will call out, need moving, need taking to the toilet, need help with something! 

So I say: “Sorry, I can’t right now love, I will in a minute.

And then that minute never comes. Life with Hadley is all consuming. And that is not his fault. 

He is not trying to take me away from his sister. He needs me, and it’s my job to be there for him.  

I want to be there for him. But I find myself resentful sometimes. 

I don’t resent him, but I resent what it could have been like. I resent whoever it is up there that makes the decisions, for not giving me two beautiful healthy full term babies that I can equally divide myself between. And so I cry myself to sleep for both of them. Wishing there was a way to cure Cerebral Palsy and fearing that my little girl will grow up thinking that I didn’t care about her as much as her brother. 

That she wasn’t as important. This makes me feel utterly hideous. Sick to the stomach. 

This little girl is everything I dreamed she would be. She is beautiful, caring, hilariously funny and so popular. And I feel like I never see her.  She (and I) are so lucky in that we have lots of friends and family that regularly spend generous amounts of one-on-one time with her, and she loves them all so much. 

But I want to do those things with her. I want to be the one that she laughs with and talks about all the time. I want to be plastered in dodgy eighties make up and nail varnish that covers my entire hands (she did this to my dad!). 

But the reality is that I only get to do those things occasionally when somebody else takes on the main care role for my son. Or when he lets them. Don’t get me wrong, we spend a lot of time all together as a family, but that’s not the same.

This is not the way I had things worked out.

This is not what I wanted.

And it’s my aim this year to ensure that things have less and less negative impact on her. And me! 

We are sneaking days out together. We went for a cream tea for my birthday a couple of weekends ago and it was lovely to sit and eat with her (and the girl can eat! She’s definitely mine!).  We also went to the theatre to see The Sound of Music (her favourite musical) and it was marvelous. We sat munching popcorn and singing along at the top of our voices. It almost reduced me to tears. This is what I wanted life to be like for her. And us. 

Tonight as I tucked her in bed and thanked her for being such a good girl and told her that I loved her more than anything, she replied: “Thank you for being such a good mummy.”  The lump in my throat felt like it was going to explode.

God I hope she really believes that. 

 

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