Well Christmas has officially landed in our house now, and for the first year ever, Toby was able to stand up and help dress the tree.  It was super, albeit a bit tense,  I am a bit particular about colour matching – I know!! with a small family,  I should be filling the tree with home made decorations and cast themed trees to the wind,  but I have to “live” with the tree when they are in bed, and so they must live with my perfect tree in the lounge! And so by way of compromise - they have now got their own tree in the kitchen, for home made “Christmas rockets” ?? made from toilet rolls and cotton wool angels!

This Christmas will hopefully be different to last,  last year we were on a knife edge not knowing if another seizure would happen,  this year, although that risk is still a very real risk,  I can try and accept that we are as fully prepared as we can be.  We have had a tank of oxygen with nasal canula delivered to home, incase it happens again, I can help Toby until the ambulance crew arrive,  that in itself is going to be of reassurance to both myself and Ian.

After talking to another mum whose little boy has “other” issues, it is so apparent how totally life consuming it can be when your tiny angel is at risk.  It does so help to speak to other mums and realise their fears and worries, they can never imagine the horror of living in my shoes, and like wise, when I hear their stories I think I too would not be able to cope with what they have been dealt.

Life is not perfect, people are not perfect, and in a world where perfection is seen as the norm,  it is a worry when I  think how will my little one cope in the big world all by himself.  And then you come across the most beautiful people who are bringing up the most caring children – Toby is making such lovely friends at school, I have worried myself  silly about how my child will fit in, how my child will be accepted, and how he will cope with independence when they are older.  I have been a witness to  the nastiness displayed by some people, the ill informed judgments that others make, and you resign yourself that the world is made up of a whole hotchpotch of unsavory characters’ – how on earth is your little angel going to cope in a world where anything other than perfection is seen as a flaw or an affliction.

And then – by way of some Godly intervention – along come some gorgeous little school friends, who are so caring and kind, who do not treat Toby like a “pet” (that infuriates me!) who do not mollycoddle him, but play with him within his limitations and are totally acceptant of that, who look out for him to make sure he is included and that he can keep up with their play, who take time to understand him and accept his views and absolutely love sharing time with him – it is heartwarming to witness.  Teaching a child compassion, values and empathy at such a young age is not an easy job,  but this then goes on to create  tolerance of others at an older age – which is something very much lacking in nowadays.

 I have been so fortunate in having Louis, he is such an amazing big brother -  he is the most compassionate lovely boy you could ever dream of meeting.  He too has had his own demons to confront, he has witnessed his brother near to the end twice now, he coped with Toby’s  diagnosis’,  he suffered a broken ankle last year and was himself totally immobile and had to rely on me for everything, he has seen our tears, he has cried his own tears, and all of this has forged him  - not into a spoilt child who devours attention, but a beautiful, amazing  11 year old who is wise beyond his years and demonstrates compassion of an amazing depth.   He is growing up into the most amazing young man,  and it is delightful to see even more facets developing on our even bigger diamond! 


At the end of this week we have the Evening post award ceremony, and Toby is all booted and suited up for this one,  I will make sure I post a picture of him, he is already talking about how he will do his hair – we only do one style – I cannot understand all the fuss!  

We then have some mum and dad parties to attend and a couple of parties that we are hosting,  so a full festive calendar of delightful celebrations await us these next few weeks. 

Our house is full of traditions at this time of the year, some I have inherited from my childhood, some I have invented for my children.  As the saying goes, it is the most magical time of the year, and I love Christmas – I mean really love Christmas!!!

For those that do not know me well, I am an avid cook,  I simply adore being in the kitchen, and Christmas is a time when I can happily spend even more hours in there, more often than not,  with the boys helping.  We have taken a note from Nigella this year and festooned our kitchen with fairy lights, making it even more delightful on these cold dark nights.  Louis is eating the mince pies quicker than I can make them and Toby is avidly following all the Christmas Special food programmes advising me what he would like to try.  Toby spent literally hours writing his school Christmas cards,  writing has always been such a struggle for him,  that is why his school work is dominated by his laptop,  but this year he wanted to hand write all of his cards to his friends.  It took a long time, and I suggested that we scan his name and reprint it and stick it into his cards, but no! - everybody else writes their cards and so shall he! 

Home is an amazing place, Christmas is an amazing time, and for the first time ever this year, I have two boys who will run down the stairs on Christmas morning, to see if the great man has been -  no more crawling in our house!!!!!