This signifies the start of Christmas (apparently!) in our house.

I have managed to delay the erection of the Christmas Tree for a few days yet, although I know I will not be able to defy the inevitable for much longer and therefore foresee all decorations being up by the weekend.

Here in Bristol, England we have managed to avoid the bad weather that has besieged the rest of the country, but unfortunately we have not escaped the bad weather germs, and Toby has fallen fast to a chest infection, so lots of rest and TLC is in order. 

Toby made a guest appearance on Inside Out (BBC) on Monday,  highlighting little Abigail, who is due to travel out to St Louis next week for her life changing operation.  The Cox family wish Abigail, Tim, Carrie, and little Talia all the best on this most important journey, I will be following them on the internet, and holding them dear to my heart during their whole trip – it is hard to convey to others who have only read, the shear magnitude of this operation. 

I have heard others express concern over complications of the op, including paralysis, but when we agreed to the op, that never once played on my mind.  I knew that Dr Park was the best in the world, all operations carry risk, only naivety would not appreciate that,  but paralysis was not something that I highlighted in interviews, or talked about with others.  My concerns were the hugeness of the whole procedure,  it was earth moving, magnificent, life changing, permanent, lonely, scary, and it was on the other side of the world away from everyone we knew and loved  who should be there to hold our hand, as we handed over our precious little angel for surgery on a scale not often seen. 

I have spoken so much to Carrie, about how I felt, when to be strong, and when it will hit you – the tidal wave came for me when they had to take Toby from me, he was not quite fully sedated and he was shouting “mummy”  and crying, over the nurses shoulder as he was carried into a “staff only” lift – monitors being wheeled alongside him, with a full set of nurses and others squeezing into the lift alongside.  The lift door shut as I waved goodbye, and then I completely lost it,  luckily Ian was there to catch me,  and gosh, the tears flowed.

Coffee, privacy, an updated phone call every hour from Toby’s surgery bedside, Ian, and Toby’s ‘Parky’ toy (a stuffed polar bear) who I did not put down for the whole time he was away -  got me through that 5 hour period. 

But – I do not wish you to read this and feel sorry for me, because this whole story is not and never was about me,  I would go through the emotions of that  morning every day for the rest of my life, as it has given our little angel freedom from pain and mobility on a scale he never thought possible.  I have told this from my point of view, I have laid out my feelings as I lived them.

Since we had Toby, 6 years ago, and we became aware if his potential issues, I very willingly and knowingly  passed my body and my time over myself to him and decided very early on that I would only settle for the best for him throughout the whole of his life.  I do not expect thanks or gratitude from him,  I will never discuss with him any sacrifices we have made,  because that is what you do when you are a mum – it is all part of the process of loving and nurturing your child. 

Life is still incredibly tiring, for all of us, but even after the most gruelling of days, looking at little Toby, with his gorgeous big blue eyes looking back, him telling me that he loves our whole family  “twenty million”  makes everything worth it.

We were offered having a TV crew follow us out to the States, but we declined.  And now, after the BBC programme went out last week, that will be the last time we are seen on TV – “thank goodness for that” I hear you shout!

Toby is feeling the strain, and needs his privacy,  our mummy and daddy job is to grant him this time, he is still in recovery mode, we still have a long way to go with his physio, and with Christmas just around the corner, we are battening down the hatches, and going to re-group and rest over the next few weeks!

Our family love to all you fabulous people who send such lovely messages and emails and continue to follow Toby’s progress.  – the messages are so much appreciated and reading them after a particularly tough day gives us the smile to carry us through to the next!