One mom recently shared the following in an email to the moms group. It was actually written by a mother of a son with Autism. Despite how different autism and cancer are, the fundamental feelings experienced by the parents of these affected children is so much the same.
Hello doctor, I just need to warn you...
Please, tread carefully.
You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well ... you see that heart?
The slightly broken, definitely bruised one?
Yeah, that's my heart.
My slightly-broken, definitely-bruised heart.
Now, I realize that as you look at me you might see .... a confident parent ... or an angry parent ... or a happy-go-lucky parent...
You might think that I understand everything ... or nothing ... or that I have all the experience in the world because I have done this before ... or that I know the rules ... or that I don't know the rules and that is for the best...
You might believe that I am high maintenance ... or overreacting ... or maybe neurotic ... or disengaged and uninterested ... or that I don't really care ... or maybe I care too much...
But regardless of what you see, what you think, or what you believe, this is what you should know:
I am broken-hearted. And it doesn't matter if it is the first day or a century later. It doesn't matter where in the "grief cycle" I might be. It doesn't matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don't speak, in judgment or not, my heart is out there.
Some of "us" parents ... the 'special' ones ... can be a pain in the ass. I know that. We know that. But we are fighting a fight we never planned to fight, and it doesn't end. We don't get to clock out at the end of the day. We don't get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.
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