Time is a healer

They say time is a healer. George will soon be 8 months old and we are currently experiencing one of the worst nights ever with him.

I'd like to say that it's because his little plan of getting Mummy and Daddy to donate £10 for each England and now Portugal goal in the Euros hasn't gained any more traction since he has arrived home from the hospice. It has raised £70 though.

He has had 2 doses of our new 'wonder drug' Midazolam tonight to no effect.

His crying and screaming is ringing from every wall and on the one night we could all do with sleep.

We are due at Birmingham children's hospital at 9am in the morning, so need to leave the house at 7am.

Maybe he's trying to remind us just how difficult life is for him. It's almost like we have reached new levels tonight, but as a result my phone has been held inches from his face recording the pain in his eyes and the deafening screams that leave his mouth.

The video footage taken ensures that we are able to show the neurologist first hand just how tough things are for George even after a dose of Midazolam.

It has only been a week since we have arrived home from respite and for whatever reason my emotional state is the lowest that it has ever been. I find myself crying for no apparent reason at all. We had to take 2 cars to the hospice to collect George due to the amount of baggage. I found myself crying the whole way there whilst listening to an England football playlist on Spotify.

I'd like to say it's because the music reminded me of all the years spent watching England teams underperforming, but sadly it's not, you quickly become hardened to England football letting you down.

It's so difficult when George is like this. You try so hard to comfort him, and you try and try, but after you have exhausted your box of tricks you have to accept defeat and realise that there is more to it than meets the eye and professional assistance is required.

Tomorrow is our first neurologist appointment since George's arrival. We have waited over 7 months to see a brain specialist. George suffered a brain injury at birth and we have had to wait this long to see someone who specialises in brain injuries...... madness!

Have we failed George, has the system failed George who knows? But surely in this day and age a child shouldn't be suffering in such a way.

All of his drug's have been administered and he's spent the night in the arms of Natalie and I yet he's still inconsolable.

We can only hope and pray that the neurology appointment comes good.

Currently I'm throwing myself full bore into George's Lands End to John O'Groats challenge by way of a distraction for my own mental wellbeing.

It will be an amazing achievement to push George 1084 miles and we will cherish it forever. We are going to take the opportunity to incorporate things that we feel we are going to miss out on, Sports that George won't get to play, jobs that George won't get to pursue. We are going to take every opportunity to get photos of George in vehicles of all descriptions and in environments that we aspired to see him in. Fortunately there are lots of kind people that have already agreed to facilitating such things and we are going to make some amazing memories whilst hopefully giving back to the most important organistaion in our lives currently, hope house children's hospice.

Maybe it's this that makes me sad and cry? The realisation that we won't get the opportunity to watch George play sports like we wished, or pass his driving test and get his first car etc? Who knows? But maybe it's the fact that he now has his special chair in the house and special bathing seat? Although I do love pushing him around the house on it weaving him in and out of furniture and showing him how to make a brew or pour a beer.

At the hospice I was completely at peace with his chair and Natalie struggled, but now it's in the home environment it seems to hit differently. Most of the children at the hospice have specialist seats and it seems normal, it just hits differently in a domestic environment.

Roll on George settling down for the night, my ears are bleeding! And roll on a successful neurology appointment in the morning to hopefully get George under control and help us put a stop to his suffering.