It's just like when you have a baby, and some friends disappear. It doesn't happen all at once, they buy baby clothes, they throw you a shower, but once the baby comes and the excitement wears off, and relationships begin to change. The more you grow and the more your life changes, the more friends fade away little by little. It's a natural part of life. But...
For me, that was years ago, and now that Charlie has come along, it seems to have happened all over again. I feel like my only acquaintances are other heart moms, a medical staff, and my children. No doubt, my friends are "there" for me, as much as somebody who doesn't understand can be, I know they care, I know they love us, but they have absolutely no clue, and they don't know how to just be a friend.
Open and real relationships for me, consisted of making light of the harsh truths of reality. It seems as though now these harsh truths involve my child, that even the ones closest to me are afraid to overstep. It's the sympathy. Sometimes though, I want to feel normal. I want to feel like everybody else, I want to talk about my child, but I don't want it to be sad, or to make you uncomfortable. I want to have lunch, I want to joke, I want to laugh with you. Before this happened, we simply bonded over a pizza, and laughed off the hard times. I still need that.
I don't want you to feel like my life is just some sad story you keep tabs on through Facebook. I want a friendship. Yes, this journey has changed me tremendously, but please don't be afraid to be a friend. I understand that it can be difficult to articulate exactly where the boundary line is... but the truth is that it is no different than it was before my life changed. Life is life, hard times are hard times. The worst thing you could do is back away from me, because I need the support system, and the laughter, when life is the most challenging.
This journey can be isolating all on its own, please don't contribute, just be a friend, help bring normalcy back into our lives through friendship.
If you have a friend whose child is chronically ill, please don't be intimidated, please don't tip-toe around them. Just be there, just love them just like you would have before. Get pizza and reminisce. Let them be normal for a while. After all, what is normal anyway?
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