I'd be lying if I didn't say that things have been tough for me hearing about all these children and people dying from SMA. Some parents and children I have met only briefly through email and telephone conversations some more intimately through video conferencing. It's hard to experience the pain of children dying over and over again, trying to understand the suffering of parents, syblings and close friends. There are so many things I don't like anymore that once I enjoyed like war movies, violent action movies and other art forms that push the buttons of conventionality. I'm always on edge, on high alert for Shira and every time I hear of another child sick, even regular kids something inside me makes my sences more heightened. When I see a parent scold a child outlandishly, spank a child, smoke in the car, or parents not closely watching their kids as they play in the park I feel fear for those children. I never felt this way before, not even when Sammy was born. Sure, I wore my heart on my sleeve a little more when Sammy was born but I came from that school of "Let the boy go he'll learn." or " what doesn't kill you will make you stronger mentality." I just finished watching The Curious Case Of Benjamin Button while Shira lays in her bed on bipap not feeling 100%. The movie is a must see and I won't watch and tell other than to say, watch it. Here is an excerpt from the movie that I liked about facing life:
Excerpt from The Curious Case Of Benjamin Button
“For what it’s worth it’s never too late to be what you want to be. There’s no time limit, start whenever you want. You can change or stay the same, there’s no rules to this thing. We can make the best or the worst of it. I hope you make the best of it. I hope you see things that startle you, feel things you never felt before. I hope you meet people with a different point of view. I hope you live a life you are proud of. If you find that your not, I hope you have the strength to start all over again.” – Benjamin to his daughter.
I can honestly say that I have never been so proud of myself as I am now for the way Maxine, Sammy and I care and deal with and for Shira and each other and how proud I am to know so many people that put so much energy, love, compassion and care into their children or friends children like the people on smasupport. There is a real energy on smasupport chat that keeps so many families going inspiring them to deliver intensive multidisciplinary care to their kids or others day after day after day. Here's a big pat on all of our own backs or as many of you put it, "Hugs!" Brad