July 21, 2008

Today was a usual day except for the fact that Maxine and I got out on a walk together with Shira of course. I never leave Shira. As I am the best one at reviving Shira when she crashes I have to be close at hand and Shira is always with me. The only time I leave Shira is for a haircut or to go to the doctor and then Shira is on her bipap at nap time. Maxine is proficient at looking after Shira but I have always been the one that can bring her back from the extremely low vital signs. We went for a walk in our neighbourhood and stopped at Starbucks for a cold drink.

Yesterday was a day when all the fears for Shira and her life show up and there is nothing you can do but sit with all those fears of what her death might look like, what life might look like after death, how it might affect our son etc. Its just terrifying stuff. It’s a lonely road looking after someone so ill. Most people really just don’t have the time of day for the healthy let alone someone that needs the support Shira needs or her caregivers need. People mostly suck but I have learned once again how totally selfish the human race is. All you have to do is read books like, “How To Win Friends And Influence People” by Dale Carnegie to really understand that. I got this book when I was 16 and have read it over 30 times in my life and again recently. The whole premise of the book is how to manipulate people in a way that makes them think you like them. Really your supposed to find some trait you do actually like in a person and focus on that so you don’t come across as fake. Its really a pitiful statement of society in general because it really focuses on getting what you want out of other people.

Acceptance is a very hard thing to do. Accepting other people’s weaknesses and its especially hard under these circumstances. Having and giving compassion to others while you really need it is the most challenging position I have ever been placed in. People will call me up, tell me about their life, their worries, their losses, their business problems and not even ask about Shira and how its going. It just sucks the life right out of you sometimes. I was going to sensor myself on this web site but again why should I. This web site is set up to help the countless people that have kids like Shira and I’m not going to white wash how incredibly hard it is to care for a child like Shira. The fact remains that the hardest part of caring for someone who is sick is the lack of compassion and emotional support from people. You think when this happens to your family that systems and family are in place and for some it is true but of the many, many families I have spoken to most of them feel abandoned or that the shelf life of compassion and understanding for their situation is about the same as the apples in your refrigerator.

Then you have those that will tell you that you chose to care for your kid, you could have let them die and you wouldn’t be in this predicament. Well, those people are on my do not resuscitate list and should I see them lying on the street I’ll be sure to step over them as I pass by them watching them gasping to live. That’s what I would like to think anyways and that is my reaction to how that statement and those people but in reality I would and do help anyone in trouble.

All I can say is thank god to SMA Support, Youtube, etc. that have given me the ability to reach out and be reached by other parents of SMA children. Without other parents that have experienced what we are experiencing we wouldn’t have a bench mark to use to navigate through the insane waters of the medical system. Other parents have been buoys that keep us off the rocks of our mostly incredulous society. We have met some wonderful people but most are indifferent. This journey has been an interesting forced study in society, social matters of conscience, inter personal relationships etc.

I’m going to constantly remind people to reach out to people. In the words of the Dali Lama "It is not enough to be compassionate. You must act................When there is something that needs to be done in the world to rectify wrongs with the motivation of compassion, if one is really concerned with benefitting others, it is not enough simply to be compassionate. There is no direct benefit in that. With compassion, one needs to be engaged, involved." - The Fourteenth Dalai Lama

So find a person, a family etc. a kid, and make them your project. Many people have asked if I do this and yes I do this. There is nothing that eases the pressures of our situation more than reaching out to others and helping them get through their challenge. So don’t wait, reach out to someone today and consistently, go past the shelf life of your ability to be compassionate.

Yesterday we had Sam’s councillors here from his camp Camp Israel and they played with Shira and Sam for a couple of hours. Shira really enjoyed herself and she wanted to stand in her stander and show them what she can do. The day ended uneventfully which is always good news in the SMA world.