It's not you it's me...

 "Learn from yesterday, live for today, hope for tomorrow."

I used to have this on the wall of my stairs so I could see it everyday,  I thought it was a very positive thing to have and one of the many quotes I have picked up over the past years to keep me going.

I have tried to make 2015 a very positive year.  I have read meme after meme on social media, hand picked a few relevant ones and tried to think of them during the day to dayness of family life, but I hold up my hands in surrender as my positive frame of mind has started to ebb away.  The reason for this, well the truth is simple...

 I am tired.

 So very very tired, and despite my efforts to see rainbows and Unicorns and to fill my thankfulness jar daily I am struggling a little.  

This is not the kind of tired that comes after a late night or the broken sleep of a newborn, I mean the deep down tiredness that makes your bones ache and your head fuzzy.  The kind of tired where you go to bed, sleep and wake barely refreshed before you hit the treadmill of the school run and it all starts again.

This is the kind of tired that comes from feeling like you always have to step up, try harder, fight a little more just to be heard.  The continual drudge of paperwork and explaining and getting therapists to stop thinking of your child as a tick box, paperwork, money saving exercise but as a small person who still needs help.  Anyone can see the smallest one needs physio so why should I be arguing with the department holding back tears just to get them to not discharge you?  (However, good job I did though because our new one can see so much work needs to be done and finally after years it feels like we have someone on our side again.  Our side? Jeepers I even talk like it is a battle...)

Some Dr's this year who have not blinked at us before have become interested, open access has been offered in one clinic where we were almost discharged previously.  Why the sudden change of heart? What is not being said? Worry.  What if's.  Am I missing something? Guilt.

More difficulties in our child have been assessed over the last 12 months replacing the initial physical ones.  But these are not the kind of problems that can be supported by therapy, wheels and equipment to enable progress.  It means we must change the way we all think, change how the smallest needs to be taught, there have to be changes in our understanding of his learning ability.  The future is so bloody unknown and we are all sure extra help in secondary is a given but not sure where he will fit... more visits, more research from us, more thinking, more worry about friendships, being different, Starting again.  Planning.  Forward thinking.  Always being ahead.

Along with all the above this year there is also the usual housework, shopping, homework, clubs, juggling school and specialists whilst trying to make family life as normal as possible; it is quite honestly exhausting.  In turn it makes me, in my eyes, a rather unreliable friend but I have little left to give.

I am useless at responding to texts unless I am hiding in the bathroom with my phone and you happen to send a message right then (now if I reply quickly you will be worrying I am on the loo!)

You invite me out and I rarely show up. I don't make small talk very well and am often easily distracted.  I am late, flakey and say the wrong thing at times too.  But sometimes it's just too much to ring, or even to talk, some days it is just a little more that I have in the tank to give.  Double guessing stuff, thinking of different ways to help get 2 times table to stick after 3 years of trying, thinking of how to get a home project done that includes some therapy and IEP targets, trying to get the smallest to pace, watching for behaviour quirks to see if we have pushed it too far this week/hour/day - sometimes it is enough to think about... and I am sorry.

Today we were watching Newsround (get us and our current affairs knowledge) and there was an article about areas of Africa being Ebola free.  It featured children going back to school and some very heartfelt interviews with those who have lost family due to the terrible spread of the disease.

"Mum, where will I go if you and Dad die?"  was the sudden unexpected, but very logical question that came from him.

And it took my breath away, the little bit of me that was still holding up snapped because I could not answer.  Not only do I not know who would care for him but also the follow up questions started to fire inside my head, how would they transfer specialists?  Who would have knowledge of his syndrome?  Who could cope best with strategies to support him?  Who could cope with the needs of a only child who seeks a playmate and companion along side being the parent/guardian and carer?  He would need to relocate, How would he cope? Too bigger question and one in the end I simply tried to bluff over.  But this is the level we think on, it's something we know we need to look at but the question is too scary, too worrying for today as today I ache and I feel worn down and it was just one curve ball too many.

It broke me.

I shattered.

We get very good at head down plod on and in fairness I think I should give myself a bonus pack of smarties for holding myself together more this year - but so much has changed.  Loss of children within our community, loss of family, changes in the smallests needs again and the chasing to see if we can get a more detailed look into a possible secondary diagnosis.

This is why I am tired.  Because I carry loss and grief and guilt and sadness and anger and hope all at once all the time, and it is heavy.  And it is not like I can put it down - nothing will change, this is how it is and yes I should just man up by now and 'get on with it' but sometimes it's just too bigger an ask.  

But I promise I am doing the best I can, working as hard as I can to stay thankful with a heart as fragile as silk and a slightly broken glass of hope.  So sometimes if I don't make small talk, if I don't catch your eye, if I try to avoid an invite - if I don't ring you, or it feels I make no effort,know that it is simply because I can't do it, not today... just be patient and know it's not you, it's me.