It's been a strange 24hrs, yesterday was such a roller coaster of emotions. I spent the morning visiting my late Grandma's grave to place flowers. I shed some tears and said some prayers for some good news but didn't get my hopes up. As we made our way to the hospital for the results I felt physically sick all the way, I have no finger nails left at all! I wouldn't say I was pessimistic but I was ready to hear some bad news. When the Dr said those magical words 'he hasn't lost any more white matter' it took a few seconds to process the news, when she went on to say that unusually it seemed that his brain was desperately trying to repair itself I nearly cried. I have never felt so relieved in all my life, I also felt so proud of our special, strong, amazing little boy. He is such a fighter and just an inspiration.
It was a strange evening, although we are obviously all thrilled with the news it was almost an anti-climax. That may sound strange but I suppose trying to analyse it, we have always been very positive and happy, even with the thought of losing Patrick in the back our minds, and now we still feel positive and happy. So not a lot had changed.
Today I woke up with a renewed energy, I feel 'up for it' (whatever 'it' is?!). As I walked Isaac to school the sun wash shining and I had a spring in my step, I looked at Isaac with a smile as one thing that has gone is the fear of having to explain to Isaac why his brother was dieing. That sounds horrible but throughout all of this, as soon as we were told originally that Patrick's condition was terminal that has been my biggest fear, Isaac adores Patrick and I had no idea how I would deal with Isaac if Patrick did deteriorate. For now I don't have to worry.
As I'm writing this I'm welling up and the sense of relief is growing stronger, I guess the good news is slowly still sinking in. I haven't told anyone this but over the last 6 months I have had many nightmares of having to plan and attend Patrick's funeral, morbid as it may seem that has been our reality. That reality has gone and that is the most wonderful feeling. I have always been too scared to look to the future, choosing instead to live each day at a time, now I can look to the future and still see Patrick in it, smiling away. That's done it, the tears are out! I think I need a good cry anyway.
I don't think we will ever lose our fears completely, Patrick still has a long hard journey ahead of him, without knowing more about the damage to his brain controlling movement, we don't know how well he might progress and his epilepsy is still a danger but instead of looking for a sign he's losing skills I can relax and look at signs he's gaining them.
Martin and I have both said this morning that however relieved and happy we are at our news, we both feel a sense of guilt for all the other parents we are in contact with who are waiting for some good news themselves. With any luck their good news will come, I was thrilled to read Jude's blog this morning to see that he had smiled, twice!
Anyway, I'd better put this renewed energy to some good use and go and do the washing up, I'm not sure how long it will last!