Behind a closed door

It’s been a little while since I’ve blogged. I didn’t take a deliberate break, it’s just been that life has been happening at such speed I’ve not had a minute.

I was going to start my return to blogging with pictures summarizing our last year but as January is already running away with me I thought words would be the best form of return.

My daughter goes in to hospital this month for her bone surgery, we’ve been told to prepare for a 2 week stay and a 6 month rehab period. I will be staying in hospital with my daughter for the two weeks and I hope to get home once to see my husband and the children, and to help host the charities monthly party. I won’t go in to how much I will miss my husband and my other children as I’m quite certain this goes without saying.

I hate waiting, I get restless when I’m waiting, agitated and a bit bored. She has the surgery on the 17th. I just want to get in, get it done and be out the other side. None of this hanging around period, this agonizing waiting time, this turning the possibilities over in my head time. No thanks. I know the possible positive outcome and the possible negatives. I feel like I’m stood on the edge of a black hole just waiting for the word  ’jump’, and then of we go, in to the unknown. No one can tell us for sure if the operation will be a success, if she’ll then be pain-free and regain some of the quality of life she has lost, or if we’re just about to open Pandora’s box and a future of more possible surgeries and complications. My stomach turns just thinking on it. I get the flippant, ‘oh she’ll be fine’ of people often, there’s no response from me to that.

When you love and care for someone with such sever disabilities the ripples are wide-reaching, with them at the very center. I read a quote by Elizabeth Stone, ‘ Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside of your body’. So very true, just because my daughter is now 15, just because I’ve had 15 years to come to terms with the fact she is so disabled, it does not, not for one second, make any moment of that time easier. Recently I’ve found hearing and seeing pictures of other people’s teenage daughters together very hard. There is only 18 months between my two eldest girls, they should be falling in and out with each other, watching films together, walking in to town together, shopping. It’s so un PC to say but I can’t help it, I feel in a way that they’ve both been robbed in some ways and some days it does catch me unawares and I do get momentarily upset.

My daughter has to have this operation, there really is no choice, it won’t however lessen my guilt if things don’t go to plan and if it does just pave the way for yet more surgeries being needed. I feel like I should know how things will be, what the right course of action should be, I feel as a mother that I should have some control, but instead I feel completely powerless and I guess it fights against nature. A mother’s first instinct is to nurture, to protect, and when you can’t protect and have to be a spectator in whatever your child’s condition has in store for them then it’s hard. All I can do is love and comfort her.

A lot of years ago now I was offered brain surgery for my daughter, to try to prevent a future major bleed in the brain. There were risks attached of course. One being that she could sustain further brain damage, another that she might be left blind, another that she might not even make it through. I sought several neurologists advice. I went with the lady who worked with the worlds greatest authority on my daughters very rare condition and I decided against the surgery. When I did so another neurologist told me I’d made the wrong decision and that if anything happened then I would have to live with the decision I had made not to have the operation done on my daughter. So far that decision I took more than a decade ago has proved to be the right one. I’m not sure I can put in to words the kind of weight that puts in your heart though and upon your shoulders, you can go for a walk through the woods, you can sit and have a nice meal with your family, you can pack up your things and go of on holiday, but you can’t escape that kind of knowledge, you can’t escape from yourself.

This is not making for the cheeriest of reading and it’s not how I want my blog to read, the flip side to that is that my blog is real, it’s no work of fiction, its real life. Real life gets messy and sad in places and I can’t find it in me to make happy stuff up for the sake of making my blog a cheerful place.

I’m not miserable, moping around and crying. I’m moaning about the housework, laughing with the kids, watching T.V with my husband, texting my cousin to ask how her and her newborn are doing. Life is going on as it has a habit of doing so.

I didn’t write this post this evening because I want people to feel sorry for me. I wrote this because it’s what’s going on, it’s where myself and my family find ourselves right now. I do also think blogs or posts about disabilities can help dispel some misconceptions sometimes, they shed light in to areas all to often kept dark or behind closed doors.

Post’s like this of mine might seem very exposing but I don’t think this is. There is plenty about me that is private but when it comes to my life as a mother and carer of two children with disabilities then I’m not ashamed, I’ve nothing to hide and I hope people do read about it. Who knows it might help someone put something in their own life in to perspective, it might help someone else reach out to another family caring for a child with a disability or a loved one…or it might serve no other purpose than it just being something in which I’ve let out a bit of steam.

I hope to post again before I go in to hospital with my daughter. I won’t post again about this because this is now done. I will maybe set to work on a post about all the good things that happened last year in 2012 and all the good things I hope to make happen in 2013.

I hope all of my readers had a wonderful Christmas and here’s wishing you all the very happiest of New Years and thank you for sticking with me

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