Friday, April 08, 2011

Snappie - this post should carry a warning!

I've been meaning to write this piece for a while, but it's a difficult one to "put to paper".  It has been sitting heavily within me and I've been sitting here at the computer now for an hour or more trying to work out what to say.  It's a story of two halves and I've been almost Jekyll & Hyde like in my writing, one full of gratitude and the other with an undercurrent of anger...

 
oh, and please don't get me wrong, I am so very grateful for all the love and support that we have received since we went live with The Whizzy Wheel Fund blog in September: without this and without every one's kindness and generosity we wouldn't have been able to get the SnapDragon so quickly and Snappie will change Eilidh's life - that I believe wholeheartedly.

When we went down to DragonMobility two weeks ago Dan was very quick to say that he SnapDragon wouldn't cure all of our problems but that we would have fun, that life certainly wouldn't be boring with a Snappie in our family!  I don't think that we have reached the fun stage quite yet, Dan, but we are looking forard to it...

We knew that this period of adjustment would be difficult, but it has caught me by surprise.  I thought that I had made peace with SMA and Eilidh's disability - oh, how wrong I was!  I went down to Cambridge with what I thought were realistic expectations: I wasn't expecting the fairy godmother to magic away Eilidh's disability, but I did think that I was prepared mentally.

 
So, honestly?
Snappie has stabbed at my already aching heart.
I feel deep, deep loss one once more;
The loss of my beautiful daughter to SMA:
Her canny, cheeky self trapped in a body which limits her beyond my belief.

 
Oh, and I am angry!
For the first time since Eilidh's diagnosis, I am angry!
Why has this happened?
We did not choose this: she certainly did not choose this...

 
The arrival of Snappie feels like the final nail in the coffin.
We have to face that our child is disabled.
That Eilidh needs a powered wheelchair to live as independent and free a life as we can ever hope for.



Snappie is part of our family but I am struggling to accept her.
She isn't as cute as the Panthera: she's big, powerful and awkward. 
Eilidh seems to be engulfed by her and yet, just as DragonMobility say, you do see her and not the chair (and this has become more the case the longer Snappie has been with us...)

I need Snappie to be hidden away: I don't want continually reminded of Eilidh's disability.  We have a room - once known as the study! - full of wheelchairs and standing frames and physiotherapy equipment that is hidden away so that I can switch off from the reality of our discombobulated life. These pieces of equipment - mere pieces of metal, fabric and electronics that do not have their own voices - shout out

"SMA!
Remember me?
I have throwing your world into turmoil...
SMA! SMA!
You can't run away from me!" 

It feels so cruel...

Our world seems to be full of "can't"s at the moment;
Obstructions,
Diversions,
Challenges,
And I don't think that I'm really ready to deal with them - house adaptations need to be done, ramps need to be put in place, cars need to be changed, playparks need to be visited, restaurants explored, accessability assessed, a life with Snappie needs to be lived...

It all seems so very difficult and hard,
But I know that I need to reach a deeper level of acceptance before these "can't"s are replaced by "can"s and I can face the world afresh with Eilidh & Snappie by my side.

Snappie,  I know that you are going to change Eilidh's life, that you will be her friend and enable her and empower her and show her the world, but right now - and I'm so sorry for admitting this - I hate you!

So there it is...
Finally it's out there and I've just realised that for the last 2 weeks that is exactly what I have wanted to shout,

"I HATE YOU, Snappie!"

 
... and already I feel a little better for vocalising it!



3 comments:

Catherine said...

I'm sorry you're feeling this way Sheonad, even almost 20 years after diagnosis I still have days when I am angry that I am disabled and ask "why me?". But I promise you these things do get easier eventually and the angry days become fewer, and life with Snappie will become 'normal'. I think it's easier in a way to be a disabled person rather than a parent of a disabled child (bear with me if this doesn't make any sense...), for me anyway, I have never experienced walking, running or jumping, so I don't miss then or find them important to my life in any way. Obviously, I feel sad about it from time to time, but I just find other ways to do these things. Sorry if this is totally rambling and nonsensical, I know what I want to say, and I so want to make it hurt a little less, but I can't seem to find the words at the moment. Anyway if you need me you know where to find me :)

Devon said...

Hi. This post is very raw and honest, and refreshing. In my experience, the grief cycle is cyclical...one day you're ok and the next you are screaming in anger. I am glad you are letting this out...it needs to come out.

Hugs, sweetie.

ever hopeful mummy said...

thank you catherine and devon for being there - you both know only too well, from different views, what it is to live life differently... i have given myself permission to be angry and i feel better as a result... thank you x