Saturday, March 24, 2007


Today I took the older two girls to the cinema to see 'Happy Feet'. You know, the story of a penguin who is damaged before he is born, leaving him disabled and delayed in development. Some people will probably be going 'eh what, its about a dancing penguin, what is this woman on?' But you have to read between the lines sometimes to see what is there in front of our faces.

We had booked 3 seats in the back row, mainly as Lauren gets very twitchy and we need to be able to leave quickly and quietly 'just in case the phone rings for a transplant' whilst we are there. Behind our seats was a wheelchair space. I looked and thought fleetingly 'hmm i wonder if we could fit Peters LVAD in that space'. then i remembered the need for mains power. And would other cinema-goers be as tolerate of his clicking/beeping/ticking as we are. Obviously we are used to the noises now, and can watch a film easily and filter out the background noises of Peter (and the washing machine) at home. So no, not really an idea to go with at the moment. Lauren did get twitchy and dancey (well she is 4years old, watching a film with lots of dancing and singing, you cant really ewxpect her NOT to want to join in) and had to be restrained at one point when she tried to launch herself into the row in front. She had a quick boogie in the aisle midway through then settled down.
At the end of the film the girls were very chatty and full of life, for a few moments life seemed normal then 'I wish Daddy could come with us next time' 'yes when he doesnt have a cheem(machine) and has a new heart he can'.

I am just rambling, but one day I want to be able to go to the cinema as a FAMILY and not leave Peter at home with a carer. To spend a day out altogether, and maybe leave the mobiles and cameras at home. Just a 'normal' day would be great.

Please ring phone, ring. the sooner the better.


Jessica said...

Sarah, your post makes my heart ache. I can empathize with you on so many levels! DCM is such a horrible disease and it takes away so much out of life from heart patients. When Dan got ill enough to need the wheelchair and oxygen 24/7, it was a hassle to get him out of bed, dressed, into the wheelchair and into the car. Most often, he was too weary to leave the house. Even taking a shower was a challenge because the steam from the hot water made it difficult for him to breathe. Little things that everyone else takes for granted, such as breathing, walking, being alert, having the energy to leave the house, are simple things that heart failure sufferers can't do. This isn't even mentioning the rude stares and pointing fingers that we got each time we took Dan out to restaurants, the movies, or to social events! Some people looked at him like he was a freak, or otherwise, we'd get sympathetic looks and endless questions about his condition. It was just a really rough time, I'm so sorry that you're going through the same ordeal with Peter.

But, somber feelings aside, I'm really happy your little ones got to see "Happy Feet" (I haven't seen it yet but I hear it's great!) and that for that small fraction of time, they were happy and enjoying themselves. Of course it would be a thousand times more fun if Daddy could be there. But one day, Sarah, Peter will be able to join in family events and "live" again. I never stopped hoping that a transplant would come in time for my brother, and I'll never stop hoping the same for your husband. I'm relieved to know that Peter's stable and that regardless of everything he's been through, he's made it this far. I'm here rooting for you all the way, Sarah! Thanks for this update on your blog. You are so very brave, and I know that counts for everything. Hang in there! *hugs* Should you ever need anything, just let me know. I wish I could reach out to you now and tell you that everything will be OK. I hope it will be. Try to have a great weekend and best wishes to your little ones, Peter and yourself! *hugs* ~ Jess

Jessica said...

Your little Lauren sounds like a dancer in the making! ^_^

Jessica said...

It's late at night and I can't sleep again. Darn this insomnia! It began after Dan passed away; haven't been able to sleep at a reasonable hour since. Enough aout me and my dark under eye circles. How are *you* doing? I've been wondering how you and your family are holding up. Just wanted to let you know that there is someone in Canada, whom you've never met, who cares. You're always in my prayers ~ *hugs*