It's not all bad

It's not all bad

There. I've said it. I know I must seem to spend an awful lot of time on my blog complaining, worrying and stressing about things, but I have always tried to show the good with the bad. The positive with the negatives of our very complicated life with Nate.

For those who don't know us Nate has a very rare genetic condition called ATR-X. He was finally diagnosed in February and is almost 4. Nate has PMLD and complex health needs ( that's the short version). 

 I'm worried ( yes more worrying) that I've failed to highlight how happy and fulfilled our lives are as a family, and how much joy Nate brings. As I write this he's having a difficult screamy- twitchy day which means being able to do anything apart from give him cuddles is nigh on impossible. Between the screams come smiles that light up the room. He may have been screaming since before 4am and broken his sats probe ( leading to excessive beepage), but having him in my arms ( no biting please Nate) still makes me smile. 

I mean yeah the story may be somewhat different if this goes on for a few more days and nights and we enter sleep deprived hell again ( we are on an odd "natey cycle" of a few night ok sleep, a few nights screaming, a few nights coughing and choking, a few nights of manic seizurey stuff, and a few nights of sats alarms"). I'm sure I will feel less smiley again. We rely heavily on Nate's respite to be able to cope with this cycle which leaves us exhausted and stressed. Without respite I would be sat in a corner crying, struggling to stay awake as things can be so tough, but it's amazing what having a short break/ respite service can do for you and your sanity. Seriously. ( so that's respite- a very expensive but vital service provision, bloody hard to access, but gives amazing benefits and incidentally one of the many services suffering around the country as budgets are cut and reallocated). 

Once we got passed the " oh my god my child is so different and so complex what are we going to do? How do we do this?" stage we accepted Nate for Nate. I had always thought that this must be the hardest thing to come to terms with. I was wrong. We started to try to help him ( and us) access the things we need to survive and thrive as a family- and this actually turned out to be the hardest thing to achieve. 

Once you can nod and accept that he/life/everything is always going to be different you can then enjoy the little pieces of progress that make your heart want to explode with joy. In addition you get the smiles, cuddles, and special moments to savour. These are all best enjoyed in your own little bubble, however, as the world and community around us are still a scary place full of stares, comments, and judgement. 

When elected councillors bang on about your children being a burden it invokes a mixed response of 

" how dare they say that! No they're not" 

 And a begrudging

 " yes actually they can be damn hard work but worth it and if you bleeps would actually offer sufficient support, help and advice things would be a whole lot easier so stop harping on about money and do the right, moral, and decent thing". 

The argument always seems to come back to money. SN equipment is expensive. Everything to do with having a disability or an additional need is expensive. Stop weighing up the value of one life against another. Anyone can become old and/ or disabled. Please note you may feel karma bite you on the ass one day.

http://www.chesterchronicle.co.uk/news/chester-cheshire-news/cheshire-west-chester-council-deputy-7025284

The "burden" idea raises it's ugly again again after the incredibly sad deaths of 3 children with a genetic condition. I will not comment on what happened but one knock on effect is the resulting "better off dead" comments and the lack of appreciation from some that the life of a disabled child lost is just as significant/ worthy of grief as that of a healthy able bodied child. As a result many news articles have attempted to show how hard life can be for parents of disabled children ( thanks for showing that) how we have to battle and fight on for everything our children need ( true) and how we are left exhausted ( again true). Presumably in an attempt to show how a parent could potentially be driven to do such a thing ( allegedly). So while I appreciate the publicity showing the realities of bringing up a child with a severe disability I am left feeling resoundingly uncomfortable with the thinly veiled implication that somehow the deaths of the 3 children are understandable given the situation. It frightens me that people who can't ever understand the situation could think that. I keep hearing " burden" in my head and I don't like where that train of thought could take society. 

This article below left me thoroughly depressed. I ended up thinking " is this my future? Will I feel like this in 20 yrs time?" ( if he's still alive and i bloody well hope he is).  I'm sure it exacted sympathy from the general public but...

I can't help hoping people I know didn't read it and think how awful our life must be, because it isn't. 

http://www.independent.ie/world-news/europe/the-love-hope-and-despair-of-caring-for-a-disabled-child-30221251.html

It's all gone a bit heavy hasn't it. That wasn't my intent but quite unavoidable. really given the subject. I think for me personally I hope that people can see how difficult our life is at times, how we have our own version of normal, but that they can see Nate isn't a burden. We are lucky to have him. He's a wonderful little boy. Yes he's hard work. Yes we have had to make a number of difficult decisions and changes to our lives but that's ok. Nate's life has value. He has worth. I hope no one ever thinks we would be better off without him. it's not a "shame". Don't feel sorry for us just appreciate the level of care he needs and what we do for him, but know we get much back in return. 

Here's Nate and his grandma's puppy Daisy. 

What we do need is public support not pity. It's all very well and good thinking " oh the poor children" but you need to acknowledge and understand the effects of the huge amount of cuts being made to all people young and old with a disability. And... well start saying

 " that's not on" 

Rather than 

"we're all in this together" 

with regards to austerity measures. 

http://www.theguardian.com/commentisfree/2014/apr/27/disabled-children-and-carers-need-more-than-pity?CMP=twt_gu 

An absolutely brilliant response to and continuation of the guardian column is this. Please read

http://www.mamalewis.com/2014/04/27/what-your-prayers-mean-27042014-disabled-guardian/

So in summary. 

Nate is lush. 

Things are tricky. 

Things will get harder. 

Don't judge

Show your support. 

Don't think it's all bad. It's not.

And if in doubt "send lasagne" as mamalewis says.