Sunday 23 August 2015
This story of mine, of ours started 13 and a half years ago. It has been as much my story as anyones.
I had my life changed, my views challenged, my heart broken and yet filled with love by a tiny little baby girl with CMN.
I had never heard of CMN. I had a lot to learn. I didn't know what to expect for her, for myself, for our family.
It was hard and it changed me. It became my story. I wasn't the one with CMN and yet, in a way I was. It filled every crevice of my life. I absorbed it's existence like a sponge.
It became a part of our family story, it had an effect on every single one of those who loved this tiny little baby girl.
That tiny girl was and is a fighter. She is an inspiration. Only those closest know the battles she fights and how hard she works to be an ordinary teen. She is, of course an ordinary teen, very much so and yet these things don't always come so easily. Her life includes things her friends could never understand nor should they have to, no teen should have to. It does make her different and yet she is the same.
Herein lies my quandary. This has been so much my story, my life, our families life and yet, now, this tiny baby girl is a teen. So when does this cease to be my story, our story?
Is there a time that this becomes HER story and hers alone? Is there a time when I no longer am immersed in this part of the story?
I am becoming more aware when I post about her or talk about her that this is not my right to do so anymore. I am careful what I share. I always ask her for permission. This has become far more her story than mine.
It feels as though my big part in the story is diminishing and that she is taking over that part. I like it. I like that she is confident to own her story, that she is comfortable with who she is.
I like that she knows what she needs to do to take care of herself and that she is, very slowly, learning to speak up for herself ( although that is still a work in progress).
I love that she is willing to work hard to achieve the things that matter to her. I am quite honestly in awe of her.
It doesn't take away what has been but I feel it is shaping what is to come. That it is soon time for me to back away from owning any more of the story and to hand the future to her.
It is tricky to know when, how quickly and how much to back away.
This shift in the sands is gradual and confusing but it is happening.
The story is changing.