My nephew is going to have heart surgery on December 8. The thought of this adorable, vibrant, joyful, typical 2 year old going through this scares the crap out of me. I cannot even imagine what it must be doing to my sister and brother in law. When I think of the challenges our family faces vs. dealing with a serious medical condition, I decide that the surgery must be worse. Only because it's not a part of my reality, which I'm used to. Our situation only seems to boil to a crisis point maybe once a year or so (and hopefully less frequently as we go along). I imagine being told that your child has a serious heart condition that may or may not reverse itself is similar to being told your child has Asperger's Syndrome. It's so hard to believe that your beautiful child whom you love so much is not "normal". Immediately you "circle the wagons" and start plotting your strategy. In either case, you don't know a lot about these conditions, so you have to research on your own, or consult experts who inevitably give you their version of what the reality is. You are left to make of it what you will, and absorb it into your own reality. You find support groups of parents and children who have experienced these same things, and lived to tell about it and hopefully thrive. These groups become a source of strength and camaraderie. You are told there are interventions which will help your child live as "normal" a life as possible. (there's that word again- how many times a day do I redefine "normal"?) My poor little nephew being hooked up to monitors and machines, having to be restrained from doing his typical 2 year old things, being in some kind of pain, is not much different than my five year old being subject to all kinds of behavior modifications strategies, trying to fit him into an environment that he clearly was not suited for, singling him out for his inability to "conform". The only good thing about these 2 scenarios is that both of them are/were too young to realize what is/was going on, and hopefully will not be emotionally scarred from them. We, as parents, have to take to full hit of the pain and apprehension that goes with this.
I'm sure at some point during this process my sister has been (or will be) frustrated to the point of possibly lashing out at whatever "experts" happen to be around who are treating the child more like a science experiment than our beloved child. Maybe, and hopefully, medical professionals that deal with children are more skilled at this than teachers and administrators seem to be. Frustration with a situation you have little control over is just human nature.
I guess the biggest difference between the two scenarios is that my nephew will go on the lead a perfectly "normal" life after he recovers from the surgery. The crisis situation is now, and most likely will only be now. Sam's situation is a bit more complicated, but I've got news for you. He's going to lead a perfect normal life, too. That will be normal for him, normal for us. Like my sister and my brother in law will not rest in nursing my nephew through his recovery, Tom and I will continue to plug along and nurture Sam through whatever we need to go through. Slowly, the rest of the world is recovering, and we'll keep right on working.
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