CPN | I don't know how you do it?!

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I don't know how you do it?!


This is a phrase that I’ve heard so many times since my youngest daughter was diagnosed with Tay-Sachs Disease, a fatal, incurable genetic disorder. I understand that most people don’t know what to say, but frankly, I’m slightly irritated by this statement, and my internal response is always the same – what in the world am I supposed to do? Jump off a cliff? Run away? Start crying and never stop? Of course not! My actual response is usually something like, “I don’t have a choice.” When faced with life’s traumas, we can choose to survive and cope or we can lose it and become useless to everyone, especially our family.


The fact of the matter is that I am a wife and mother, and I have a husband and two beautiful girls who depend on me. I am not a superhero. I am simply putting one foot in front of the other. I am choosing to carry on. I am surviving.


When you take on the job of parenting, it is not on the contingency that your children are healthy and will live long, uncomplicated lives. You do it without conditions or restrictions. To suggest that parents of medically complicated children are stronger or more dedicated is unfair to the parents of healthy children who, if faced with the same situation, would certainly rise to the occasion. We don’t expect some kind of parenting award simply because we continue to get out of bed every day.
One can never know when life will throw you one of those curveballs that you never see coming. I think it’s hard for some people to fathom these things happening to them, but the undeniable fact is that it can happen to any of us. That’s what makes people like me so scary. I am a constant reminder that “this can happen to you!” Some people can’t handle having such tragedy right in their faces, and it’s easy for them to say “I don’t know how you do it” because they can assume that they will never have to know the answer to that (and I hope beyond hope they are right about that).


In reality, my days are not spent crying. I don’t have to “put on a happy face” before I leave the house. When you see me smiling, I can assure you it is sincere. Why? Because I have a daughter who brings me great joy. It’s true when they say that you can get used to just about anything. Her disease is no longer tragic and scary to me (don’t misunderstand, I’d give anything in the world if I could take it away, and some days are much harder than others). It is who she is, and I adore her. As another Tay-Sachs parent put it, her life will be short, but it will not be cut short. It will be complete with a beginning, a middle and an end, and it will be full of love and joy. No one ever said that a short life can’t be a good life, and her time here with us will not be downgraded simply because she will not get as many days as most. I have been given the kind of perspective that, unfortunately, only a terminal illness can give. I appreciate today and try to spend my energy focusing on the joys of life with my girls. I know that every single day I get to give both of them a kiss goodnight is a gift. That’s how I do it.