There are days when I feel like I could take on the world.  Today is not one of them.  It’s been a bad week, even by our standards. 

Once again, those people tasked with caring for my child / organising services for him / supplying essential medications etc have failed him. 

Totally, utterly, completely. 

As a result of school not arranging training for staff in PEG feeding (please bear in mind this is a SPECIAL NEEDS school where they have MANY tube fed children), Sam cannot go in at the moment. 

That is bad enough, but the bit that really felt like a huge kick in the teeth?  Not being told, until AFTER I had spent weeks and weeks battling to arrange school transport for him. 

Then the school just casually mention that bombshell. After a mad dash across the city because I’d had a phone call from the hospital to say a prescription for his formula feeds was ready for collection but had to be collected by 4pm (it was 3.30pm at the time), I ended up waiting 45 minutes because the prescription *wasn’t* ready. 

In fact, they didn’t have any in stock at all.

I don’t hold the pharmacy responsible at all for this particular cock-up, but wished dearly not for the first time that someone had communicated the information accurately to me.  To top it all off, I got a parking ticket at the hospital, because I’d been too long in a drop-off only bay. 

I sobbed all the way home, then had to pull myself back together ready to have a handover meeting between our wonderful early years OT, who we will all miss dearly, and Sam’s new OT who is also lovely. 

Today was rough.

When we find that these people have failed and let our children down, we feel like WE’VE let them down. But how on earth can we be expected to find out about these things, if we don’t know what the questions we need to ask are?  This week I’m broken; the cracks are showing and I’m coming apart at the seams. 

Tomorrow I’ll be stronger again, because I’ll have had a snuggle from the Dude himself and (hopefully) had a few hours’ sleep. 

This is a job where we can’t just hand in our notice, it’s for life.

And we wouldn’t give it up for the world, for all the rubbish and tears... because it would mean not having our little heroes and at the end of it all, it’s all for them x

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