Selfish genes

I’ve always said that motherhood has changed me for the worse.

Some days I desperately want my old self back – the one who has had enough sleep, who has the privacy to pee in peace, and most importantly who has the head-space to think my own thoughts.

Do I wish my children away? No. Truly, how could I? Despite Twiglet’s outbursts of temper, despite all the worries about Pudding, I love them to eternity. I got that bit right. When Pudding reaches out to stroke my hair or Twiglet shares with me something exciting from his day, contentment flows through my veins. When they’re in bed and I see a lovely photo of them I want to run up and give them another kiss. Even when I’ve been desperate to get rid of them for a few hours, after a while without them I start feeling antsy and in need of cuddles.

But I do wish I was a better mother to them. And a nicer wife. One who doesn’t snap or sulk. One who doesn’t hold resentments close and nurse them into grievances. I know I’m doing it sometimes and try not to. I tell myself it’s not all about me. Everyone has their problems: Hubby works so hard at his job whilst also dealing with the same emotional toll as me; Twiglet often battles against the unfairness of a sibling who is treated differently from himself.

And yet, it’s hard to change my very nature. I think at heart I’m pretty selfish. In the past, I’ve heard people saying ‘I’d do anything for my child’ and I’ve wondered ‘Would I?’. Would I really?

And then, a year ago today I heard that word mucopolysaccharidosis for the first time. Although it was only mentioned as a possibility by the paediatrician, once I started reading I knew. I knew it was more than a possibility. Pudding had too many of the symptoms for it to be a coincidence – the large belly, the broad nose and classic facial features, the large head and short neck, short fingers that didn’t straighten fully, hearing issues, development delay, stiff joints.

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I was facing the likelihood that my child had a life-limiting disorder and I didn’t know how I could possibly deal with it. But it turns out I could, and I can and I am dealing with it (most of the time). Then, just as our weekly treatments were about to start at home rather than Manchester, we got the DNA results showing the worst outcomes. The clinical trial was mentioned and more trips to Manchester. I was revolted that my first reaction was ‘I can’t bear to’. Yes, selfish thoughts again. But of course, I am doing it. I love my child so I had no choice – love does indeed trump my selfish gene.

I know people who have moved country for their child (NHS Wales doesn’t yet fund treatment for Hunter Syndrome). Others spend months in hospital or years caring for someone they love. Some people give organs, jump into burning buildings. Amazing examples of unselfishness. Perhaps I haven’t been called on to that extreme yet. But I know that I will do what I can.

newhairMaybe what I can do is pretty small right now but that’s ok. Anyone who knows me will be well aware that I’m conservative with a small ‘c’. I don’t like change or standing out from the crowd (unless on stage!). So shaving my hair off in November to raise funds for the MPS Society was a big thing for me. Now it’s coming up to MPS Awareness Day on May 15th and the theme in the UK is ‘Wear it blue’ (purple in most other countries). So on that day I will be wearing it blue for my gorgeous boy, and now that my hair is long enough it will be going blue too.

To make me feel a little less stupid, it would be great if you could join me too. Not the hair, don’t worry – I don’t expect that! On the 15th May wear it blue (or purple) and post a photo for everyone to see. Join me, @ukhuntersmum, on Twitter with the hashtag #MPSawareness. Share a post about MPS. Anything really to make a noise about this horrible condition that is robbing children of their potential. And their lives. 

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