Friday, November 30, 2012

My World is Small

Yesterday I realised how small my world is; the world that I live in with SMA...

So, let's recap the facts:

1 in 40 of us are carriers

2 carriers have a 25% chance of having a baby with SMA

Approximately 1000 babies are born each year with SMA, of any grade

and in the West of Scotland Eilidh is the only child to have been diagnosed with SMA grade 2 since her diagnosis over 2 years ago...  our world is small.  SMA is rare and my world, one living with SMA, feels ever so small, smaller than I realised.  

Yesterday I felt as if the walls were closing in on me and that all that is important at this moment in time is SMA and those with SMA.  I feel that I'm failing to see the bigger picture, but jeewhizz it's so god damn difficult to see past what is directly in front of me; SMA effects my child and feels all consuming at times.  I am angry: angry that I am part of this small world and questioning the purpose of SMA in my life and the life of my daughter and my family; angry that this has happened to us - what did we do to deserve this challenge in our lives?; and then, to top things off, I am angry for being angry for this feeling doesn't sit easily with me...

I know that this anger will pass - just as I wrote about grief here and how the stages of grief are far from chronological - and that life will continue and it will continue because there's nothing else for it; it simply has to.  And today I am reminded by  Trust Tending that this small world I live in with SMA (and special needs, too) is a wonderful world, full of children and families living with SMA (and other special needs) where love and support is abundant, where others stand beside me, holding my hand, hugging me at times, repeating over and over, "I am here.  I know what you are going through.  You are not alone...".  Thank you Kristin for this wonderful reminder today.


Midlife Singlemum said...

Lots of love. I can't do anything to change things but I do read our blog and I hear you. xxx

BavarianSojourn said...

Lovely words. Just to know that you are not alone, must be a big strength giver. x