Saturday, April 3, 2010

Far too long; first time in public

I have stayed away from this blog for far too long. V is having an excellent year; really enjoys having a male teacher who has a great sense of humor. He has had his ups and downs of course. Several things are still day to day and it has become for us commonplace to realise that and take each day as it comes. The good thing is that his teacher realises that he has to take one day at a time and that makes life easier for everyone.
Not only is V doing reasonably well on the academic front (reasonably when compared to the rest; compared to where he was at, he is doing fantastic), he is doing scores better socially and emotionally too. He has a couple more friends which is huge. He is actually trying to play some games at recess, not just stay in the sand box. These are huge leaps in his social growth. Not sure where this will be in a couple of years but we'll see when we get there.
V does still tend to be on the immature side when compared to kids his age; he doesn't realise that he is bothering someone; others get really flustered when he comes near, leave alone say anything. It is a viscious cycle and not one that we are to solve in the near future.
Thanks to a co-worker, I organized a fundraiser for epilepsy to raise awareness and to try and start giving back. It was a small group of friends and coworkers. Was very good. I was surprised at myself giving a small presentation, but it was a small group, in my own home and I didn't really get into details which may have been harder.
This past week however, for the very first time I spoke in front of an audience in a public setting. Apparently, there were 250 people. It was a different discussion, I was bringing up the issue of seeking support, talking openly when your child has a difficulty, health or learning and being able to cope with that. I had 3 minutes to talk, was very nervous and debated several times whether to bring in my personal piece. Without that I decided that the little speal I had was not worth its value. So I went up there, the sentence where I said "On December 31st, 2003 when my son had his first seizure..." and I could hear my voice starting to crack, so I told myself I couldn't let that happen. I went onto completing that sentence without a crackling, didn't go into details, because I didn't trust myself to complete what I had to say calmly and finished the rest.
The next morning I was feeling physically and emotionally drained. All I did was stand there in front of an audience for three minutes. The only sentence was about V's first seizure and how we need to seek support. The buildup to it all, to talk about it in public calmly and have people advocate for themselves - it was too much for me to handle. I haven't felt so mentally tired in a very long time. I was feeling so alone, and still am. All of the past seemed to come crashing down on me; I feel like I am carrying this heavy load. And yet, this should not be about me. It is about V and how he suffered. I can't explain how I am feeling but I have this thing that I need to continue on this mission of helping other parents to learn to accept, to listen, to work with their schools, to seek support. It means I have to build up my mental make up. I considered myself to be a very strong person. And I have come down in a crumbling heap with those 3 minutes. I was barely holding it together for two days, especially when people said to me - what an act of courage - I guess it was but I wasn't looking at it that way. There is a lot more work to be done.