New year, and all that

This post is not a "new year new me" one.

It's not a "look how far we've come" one. 

And it's certainly not a "oo look at all my plans for the year" one. 

Not that there's anything inherently wrong with any of the above; I'm just not feeling it. 

Things are a bit meh. 

Luckily ( luckily?) I find myself at my most mentally stable. Which means that this donkey still balances somewhat precariously on the edge. I enter this new year in the process of writing my "to do list" which has ended up looking like something that would put Santa's naughty list to shame. 

Speaking to my son's Paediatrician ( who doesn't think I'm a total dickhead, I think) I realised:

A- I'm not going mad 

B- We do a canny job 

C- My expectations are not unreasonable

Not that I was starting to doubt myself ( "as if" would snort Michael) but sometimes you do begin to wonder. One of my biggest faults is always thinking I'm right ( although I will admit when I'm wrong).

NOT THAT THIS HAPPENS OFTEN

As your child's parent/ carer/ therapist/ nurse/advocate can a fixation on a cause or solution to a problem result in a blinkered outlook? Denial isn't just a river in Egypt after all. I've been there ( and no I don't mean Egypt, but yes actually I've been there too). We need to be careful not to "encourage" health professionals down the road we have convinced ourselves ( or others have) that our children are traveling on, while still pushing forward with our gut feelings and research. In my opinion many professionals fall into 2 basic categories - those who agree wholeheartedly that parents know their child best, or those who believe parents haven't a clue and are dismissive with our contributions to discussions regarding our child's health and care. However neither of these stances is particularly great in the long run, although I'm biased believing that the first is of more use. We need professionals who listen to complete and detailed histories and then make their own conclusions, discuss with parents and investigate. I am very happy with many aspects of Nate's health care, but I can't shake the nagging feeling that people are missing something. And that's not just because I'm frustrated and upset with his level of pain and discomfort. I am increasingly left peed off by the dismissiveness of some specialists ( usually those seen fleetingly) and I refuse to accept it. 

Much of my frustration lies in my sneaky feeling some doctors think Nate's life is actually a bit shit," poor quality of life" and all that bollocks, and that this attitude affects their resulting actions. 

*Before my doctor friends kick reet off I'll link in here my Twitter feed of all the hideous comments we've had from docs over the years, when I find it that is*

I always wonder how quickly investigations and admissions are triggered in a neuro typical child with such symptoms... 

#mychildmatters  

So yeah, HAPPY NEW YEAR and all that. 

But what I need to stress the most is that this year, for the first time in ages, Nate had a lovely Christmas. Our previous Christmas days have usually involved him screaming in pain or being on sats monitoring due to a dodgy chesty. So this year felt really special.

 And I want more of these. Many many more.