A couple of things which have been on my mind since my last post - the song lyrics of the title and a part of the storyline of one of my guilty little secrets. The guilty little secret? - Desperate Housewives - I have watched every episode (and this is not because E's Mum watches it - in fact, she doesn't watch it at all!).
Watching a recent episode of Desperate Housewives, post Mike Delfino's death, his widow (Teri Hatcher) discovered he had a sister that she didn't know about who had severe autism and lived in a care home. It turns out Mike also had no idea he had a sister, as his parents put her into a home rather than "suffer" the life of living with and caring for a child with these difficulties. Things like that affect me a lot these days - and quite honestly would probably have failed to stir me at all previously.
While watching this, I had the lyrics of the title flash through my head. I know the song was written about abusive relationships and things - but the line above still works for me - on bad days I think it summarises it quite well. Honestly, there are days when you hear the little munchkin wake up at 5.15 and think that you can't do it again and again. BUT, one thing I would say is that no one has said it would be easy, no one said having a little one with Williams Syndrome would be a delight and a joy every day, I guess that's why we were given the news in a very sympathetic way and everyone was so welcoming to us at the picnic last year! They knew what was coming, we didn't....
So, when I'm having a tough day, and I feel like the devil jumped on and I can't dance through the day, I have used another guilty secret to combat it. I am an avid watcher of a variety of shows on the History Channel - Swamp People, American Restoration, Pawn Stars - but the one which brings a weapon to my arsenal here is.... American Pickers. The particular episode showed Mike and Frank "picking" an old bar which had a mechanical bull in it - and they each had a turn. This took me back to a trip to the USA some 22 years ago when I watched a very competitive mechanical bull competition - and how even the best were eventually dispatched by the bull. What does this give me?
Well the attitude I start bad days with now is.... as long as I keep dancing and buck and kick more aggressively, the devil won't be able to hold on. E, I think, knows this - he gives me enough reason to keep dancing every day - and on the difficult days I perceive more affection and love from him.
Time to put some music on - I think I'm going to need to dance my heart out this week - lots of appointments - and that's never easy!
I just wanted to say Ive been where you are, Im a father to a now 8 year old little girl who was diagnosed, with WS at 18 months ... To say it came like a bolt out of the blue would be an understatement!
ReplyDeleteIve read through your many post's, and can relate to almost every one of your thoughts and feelings, as if they were my own; you, as I did will come through this and eventually reconcile. What these little guy's lose in weaknesses they more than make up for in strengths, and this will carry you through the bad days.
I've just finished reading your fight for DLA, don't stop, it's impossible for a child to have a proven deletion of genes and not therefore have more needs than a child without WS. I fought hard, more for my daughters honour (and to give me a focus) than anything else.
Hang in there, you're doing fine ;)