Yesterday was cast change and spica number 3. I know the drill, know where to park, know what to take, know the smells of the hospital and know the plan of the day. What I didn’t know was what the next stage was bringing.
18 weeks of confinement for Erin, 18 weeks of not getting up on her feet, not being like most two year olds.
We always knew this road was long. I knew that this was only stage 1. However the reality of it all came crashing down around me yesterday. I had always been told Erin would require surgery after the spica, when she was 2 1/2. However I hadn’t actually plotted out all the dates. I had naively hoped that the consultant would just operate at the end of this 18 weeks and that that there would be no big transition.
It seems that is not to be.
Erin is coming out of the cast in 6 weeks. Over the following month she is expected to start walking again, to briefly become your average 2 year old, to have the freedom to get toys herself, the freedom to move from room to room, to roam the house, to climb the stairs, to cheekily sneak food out of the cupboard like she used to. Except this will all be snatched away from her again in such a short space of time. As she will be having the surgery a month or two after gaining this new found independence. That surgery is far more invasive, and again the spica will dictate her development.
We do not know how long spica 4, 5 and possibly 6 will take. Anything up to another 18 weeks has been quoted. I feel so sad today, I dread putting her back into spica, I worry that she will be resentful that she will be disheartened and that she will be angry. Of course I don’t know that is how she will be. I am seeing it though adult eyes, through mummy eyes, eyes that do not want to put her through this anymore. Again I am feeling the anger at her being diagnosed so late. I am furious with the health visitors who still haven’t even rung to ask how we are coping, if we are coping.
I try to let go of that anger as it gets me nowhere. But knowing they have been recieving all the copies of notes but still they can’t acknowledge the mistakes, still they haven’t asked how Erin is doing, offered any support to us.
But I will pick myself up and stay strong for Erin. I will fight her corner and I know she will continue to be brave.
I leave you with spica number 3 and the saving grace that this one is smaller which makes handling her a little easier.
7 Responses
Oh honey! *Big hugs* I have no words I don’t think… I am sure Erin will cope tremendously… just look how she has already done so! She has such a wonderful Mummy & family to help her through it and they adjust so quickly to new situations. I know it is so hard to watch them going through so much but like you say it’s adult eyes you don’t get to see it from her perspective and yes she’ll get upset and frustrated at times but they make the most of it; that’s just what kiddies do.
Thinking of you honey xxx
Hugs x I really don’t know what to say, only that I hope it goes as smoothly as possible. You have one brave little girl there. Look at her face in the picture! Bless her heart x
Thanks Kelly, we will get there I know, no matter what twists and turns there are in this road were travelling. Thanks for your continued support.
What a gorgeous little girl! Big hugs!
Oh Erin, and Oh Emma. Big big hugs for both of you. It’s so hard, and you’re in my thoughts all the time. Erin’s a determined mite, just you see.
Thanks Lorraine, I know we will get there it just takes time!
You all sound like you have been through so much, but I am sure that at the end of it you will all become better people because of the experience. Sounds like you have grit and determination by the bucketload