The start of 2011 was greeted with fireworks on our front lawn, and friends from our street joining us for an evening of games, food and drink!
Louis managed to stay up, Toby had to go to bed at his usual time, but woke up at 11.50pm asking if he could come back downstairs. Of course he could!!!!, I was going to go and wake him anyway – there was no way we were greeting in the new year without having him there with us!
Christmas was a lovely affair, Santa was very generous, and the boys had an amazing day.
In fact, to be honest, Christmas Eve is the best day for us. It is the most magical day filled with excitement and awe of what is to come. It started off with a very early visit to the supermarket (5am!!!) by myself and Louis. There is no need to go this early, other than to beat the crowds, but it started a few years ago when I was working Christmas eve and had to do the veg shopping before I started work, Louis wanted to come with me, and so a tradition of creeping out the house at a ridiculous time of the day in Christmas Eve, to get the last few bits was started.
Then what follows, is filled a day of cooking, preparing, checking the NORAD site for Santa’s current whereabouts, watching Polar Express and then Church for the Christingle service and then home trying to settle them both down at a reasonable time. This year they were both in bed by 8.30pm. I thought I would have problems with Toby being so excited, but when I explained that Santa just flies over houses if little boys are still awake, he tried his absolute hardest and was asleep in 2 mins flat!
Awake at 7am – ( I was awake before any of them!) and running!!!!!!!!! down stairs to see if the great man had been – Toby was allowed the honor of opening the lounge door to check as he is the youngest in the house!
And so it was all over as quickly as it began, and here we are now looking forward to the start of the New Year and wondering what joys this will bring.
Toby was quite poorly during the month of December, and had a few courses of antibiotics to clear a nasty chest infection. Due to this we had to lay off physio as he was so weak and grumpy!
We managed “lazy physio” which is lying on our backs and doing leg lifts, torches on the ceiling ect, but did not manage any of the intensive physio with Caroline that we had been doing.
We started with vengeance again this week and resumed aqua therapy with Caroline, which was thoroughly enjoyed by Toby. He gets such a good workout in the water, and is totally exhausted for the rest of the day!
Following discussions with Toby, we have decided to concentrate on aqua therapy with Caroline, and stop after school physio as it is just too much for him.
Although he is getting stronger and his range of movements is getting better and faster all the time, he was having trouble with not having enough “down time” after school and was becoming very negative over the thought of having to do physio when he was just so so tired.
I felt cruel pushing him so much, trying to reason with him and sometimes getting quite cross when all he wanted to do was go to bed or crash on the sofa. So the deal is – mums physio mid week, aqua therapy on a weekend, with lots of treats and bribery along the way!
I have drawn up a sheet, targeting every area and muscle group that I want to cover, and through the medium of play, I will ensure he gets pushed enough to continue to progress.
Since we returned from St Louis, Toby has had no need to use his special needs bike. This was bought a couple of years ago at the extortionate cost of £896! It has all sorts of adaptations that were, at the time, prescriptive to Toby’s needs, but as everything has now changed, we no longer need it! We have decided that the bike would be best used by other children who are having difficulties, and so we have donated it to The South West Children’s Hospice.
Throughout my blog I have highlighted the difficulties faced by our family and in particular the challenges thrown at Toby. Being totally understanding of the fact that we have been “lucky” in that Toby could have been a lot more involved, I thank the heavens above that I do not have to face the saddened futures that these families have to.
I know we will never know if another seizure will happen, and at any time we could have our “baby” taken from us, I am allowed the luxury of “hope”, that it might not happen again and hope gives great comfort. To these families, there is no hope, there may be happiness, but the inevitable is always there.
Our boys have also decided that they rec’d far too many selection boxes, and have decided to donate all of them to the Hospice, what good kids they are!
Before Christmas we were fortunate enough to have dinner with the owner of the Bristol Pitbulls Ice Hockey team, and we were invited along to their next game, which fell on Saturday evening.
What an evening it was!
We have followed ice hockey since spending time in Canada a few years ago. Our team is the “Calgary Flames” and although it is very much bigger out there, we were thrilled to go along to the Pitbulls game and watch at a very local level.
The boys loved it, and Toby sat in the seat shouting “go pitbulls go” and stamping his feet in unison with everyone else! Chicken nuggets and chips and a hot chocolate also helped the evening along I might add! Toby was given a “pitbulls sweatshirt with his name on the back, and we were also given an adult sized ice hockey top signed by all the players – the boys were thrilled!
On another note - before Christmas I was contacted by the editor of a “Glossy magazine” Somehow through their contacts they had come across our story with Toby and also the fact that Ian and myself had been married for quite a while.
They were preparing their Valentines day edition of their magazine, and wanted Ian and myself to feature as one of their “love stories” I was floored by this. She went on to explain that they had been researching everyday couples who had stayed together even when faced with very difficult situations, and “love had triumphed!!”
Well I cannot say that out love is a romantic love story! (we do have our moments!) but we have been married 21 years this year, and given that couples with disabled children, the divorce rate is two in three marriages, is quite an accomplishment.
When I spoke to Ian about it, he laughed so hard! No way! And I really should have known this would be his reaction. Ian is a very private man and will not put on a show or demonstrate his feelings in public for anyone, let alone a national magazine. The thought of a national magazine gaining an insight into our lives filled him with dread.
And I am in agreement with him – our life is private and will stay that way. 21 years is a major accomplishment, and during that time we have and continue to live our lives under immense strain, but it is something that we do together and we gain strength from one another. I have held him up when he has wobbled, and he continues to catch me every time I fall and break down.
Yesterday I spoke to Toby about his disability and what his perceptions of it were. His support assistant at school had been off sick and he had had to have a compilation of help throughout the day to assist him.
I asked him what was his understanding of why he needed a helper during the day.
He replied “you mean why I have a helper and nobody else does?”
“Yes that is exactly what I mean” I replied
“I do not want to talk about it, it makes me sad”
That kind of shocked me as I was not expecting that response. I left it a little while and then tried to bring it up again.
“look mummy, we can talk about it and you can have me sad, or we can forget about it and I can stay happy”
I was and still am astounded by him, he has made a conscious decision to not think about his differences, he has decided that it makes him feel sad, so it is not something he will talk about.
Ian and myself spoke this morning as we feel it is something that needs more discussion. I do not want him to bottle up his feelings and then for it all to hit him later in life. I do not want him to become stressed and feel he should not talk about it as he associates it with bad and sad feelings.
We are a very positive family and laughter reigns through our house, and this is a sad subject to have to deal with, but I do not want Toby to ever feel that he is any less of a person than anyone else on this earth.
He inspires people, he motivates people, he makes people put their own worries into perspective. He is an adorable, compassionate and amazing individual, and this is how we have brought him up, to see the good in life and always push the boundaries of what he is capable of, cause as a family together we can rise to most challenges.
We will be there to talk to him when he feels that he is ready to talk about his disability in more detail, at the moment, he just wants to be “happy” and put it on the back burner for a while longer.
I will always carry around the devastation of his disability, and the isolating terror of his epilepsy, that is too much of a burden for a small child to comprehend. That is my job, I am his mum.
