Sisters

Definition: two girls who share the same parents

blog-top-sisters

Four years ago, when Lucy was 8, she won a national award for Most Caring Child.  She was nominated by her teacher and won by unanimous vote from the board of judges.

Lucy is a Young Carer to her younger sister Sophie, who has Rett Syndrome.  This is a neurological disorder which has left her unable to walk, talk or sit unaided.  That has caused her to develop seizures, a spinal curvature and some really erratic breathing.  That has left her tube fed and on constant oxygen. Is Lucy phased by this? Not one bit.

She won this prestigious award for being an extraordinary sister.  For the hours she spends sitting with her little sister, soothing her when she’s screaming. For the way that she calmly fetches the oxygen mask and Midazolam when her sister’s having a fit. For the fact that she will sit through hours of cbeebies because we daren’t incur her sister’s wrath by changing the channel. For every story she’s ever read to her. For every feed she’s put down her tube.  Not for Lucy to be phased by the way that Rett Syndrome has rudely interrupted our family life and taken away a little girl who, before her regression, once crawled and babbled and sat up in her high chair to feed herself.

Much more than this though, is the unseen way in which Lucy’s life has changed.  She’s done her homework on the floor of the children’s ward without complaining. She’s had countless disturbed night’s sleep, watched her sister being taken off in an ambulance too many times. Has resigned herself to the fact that foreign holidays are not for her family, that every outing has to be planned around her sister.

I said at the time that if I lived to 100 I would never find the words to tell Lucy just how proud I am for the help she gives.  Or how humbled I am that I take her for granted too often. Or how pleased I am that she has developed such a kind and caring nature.  She is so much more than a sister.

It is so deserving then, that Lucy was able to pick up her award at a wonderful ceremony, attended by royalty and celebrities, in a posh London hotel. That these celebrities came up to her to ask her more about her life, and what she did to help her sister. That she was treated like a VIP, and recognised for her fundamental role in easing the burden that Rett Syndrome has placed upon her family.

Humbling really then, that her memory of the event is not the admiration of the crowd, or the realisation of just what she’d achieved, or that her quiet, caring nature had been celebrated, but the fact that she sat on Prince Harry’s knee. Twice. Not bad going for an 8 year old.

This blog is for her. My daughter Lucy, carer. So much more than a sister. A young lady of whom I am very proud.”

Sisters

Hope

Today is a special day for me, for a number of reasons, today is Carys’ birthday, she turns 5 and I’ll be making her a special birthday card too.

Why else is it special? Well when my niece, Jessica, came to stay with me a few years ago, and I promised to take her to Thorpe Park (an adventure theme park in London). I take the responsibility of being a fun uncle very seriously 😉 so I was determined to take her on all the rides and do everything with her. What I didn’t foresee was being too fat to fit into the seats of some of the rides. It came as a bit of shock, until that point it hadn’t dawned on me how truly overweight I was. I was embarrassed into action, Carys and Rett Syndrome became the focus of that action.

Just over a year ago now I wrote a story on facebook about how Carys saved my life, how she changed the way I perceive things, by showing me the simple things we take for granted. I mean really simple things, like breathing, eating and sitting still, I don’t mean the big things that we talk about with Rett Syndrome all the time.

There are so many symptoms that sometimes it seems like the simple ones get overlooked or relegated to the bench when we talk about Rett Syndrome and explain it to people. I look at Rett Syndrome completely different now to how I looked at it in the beginning, with a little bit of time and more exposure, I see the value of patience and the importance of understanding. That is for another discussion though.

Well on Monday I went back to Thorpe Park, with one of my other God Children, Caitlyn. What I loved about the day was going to the “size” seat at the rides, for those of you that don’t know what that is, it’s a seat that sits outside the entrance to the ride where you get to see if you’re too big for it. I fitted quite easily into them, in fact I was just sitting in them all the time because I could.

When I got home on Monday night, I was reading about some the things I hoped to accomplish in that original post. In the post I was talking about how I hoped to do my first Half-Marathon and how the furtherest I’d run was 6.3 miles. Well, I’ve done a few now and in the next 12 months I will be hoping to do at least 4(one completed already) along with a few 10k runs and Virgin Active London Tri-athlon.

I started off with nothing more than hope.

“Hope is like the sun, which, as we journey towards it, casts the shadow of our burden behind us. …Hope sweetens the memory of experiences well loved. It tempers our troubles to our growth and our strength. It befriends us in the dark hours, excites us in bright ones. It lends promise to the future and purpose to the past. It turns discouragement to determination.

Samuel Smiles

 

Hope