As a family we are trying to continue as 'normal' life as we can - Toby is still developing slowly despite the debilitating consequences of his seizures. As a mummy I feel cruel that I cannot confidently pursue his learning desires..... I simply cannot keep him safe ! He has to spend a lot of time in a wooden play pen as he will hurt his head every couple of minutes if left.
We contacte the Neuro who is changing Toby's Clobazam to Clonazepam - I have heard mixed stories about this drug. As always we remain hopeful as without hope we could not be the strong family that we are today, to see your child go through pain this many times a day is truly heartbreaking and indeed frustrating.
We went to the beach yesterday the sun was glorious and Toby loved the freedom of open space, the day before he spent hours in the paddling pool.... it makes me happy to see him giggling and free.
However these opportunities are just hours of the long days which we battle to keep Toby safe...... its hard to not talk about what we endure but at the same time it gets boring saying the same things to people who ask about Toby..... most of the time we just answer with 'so so' or 'it's not great.....but you've just got to get on with it....' a statement which holds so much truth but which also carries so much irony... we cannot get on with anything.....our life at the moment s on hold..... plans are made around Toby's ability to cope or in fact our ability to cope with Toby safely yet to give him the best play times........ his favourite game at the moment is climbing the stairs and then negotiating a way back down, I taught him to shuffle down on his bottom to which he expressed his sheer delight with a squeal and a belly laugh every time he 'bumped' on his bottom! Toby will have at least for drop seizures doing this activity alone so I am one step behind him all the way.
I try to only put him in the pen when I have to - to do things like top cleaning or preparing meals for him and his gorgeous sister Hallie. I'm sure mothers will empathise that these duties take up a lot of time and my house is never immaculate as I try to spread my time fairly between living and playing with Toby and Hallie. Toby doesn't go down to sleep properly until 9pm at the moment and he is up at 5am so my time ourselves is limited often i fall into bed.....dreading the same routine that follows....yet cherishing being with my kids.
Fortunately for every sad or bad thing we never lose sight of reality and no matter how bad it is someone is always less fortunate in some other way and we have so much to be thankful for. Toby is an angel representing those who suffer with epilepsy, he will make a difference for others in some way and I will continue to share his story with those who want to.
I hope to blog soon with better news...............x
