I work outside the home and always have. I am also a wife and mother to two girls. Eight months ago, my youngest daughter, Annabel, was diagnosed with Tay-Sachs Disease, a fatal, incurable genetic disorder. After diagnosis, it never occurred to me to quit my job and stay at home with her. I know there will likely come a time when I will need to, but to just hang it up right away wasn’t my way.
Some people might question my decision to continue working. One person (another Tay-Sachs mom in fact) even went so far as to say, with an air of disdain, “I just don’t know why you would want to do that.” This was a pretty judgmental statement in my opinion. I understand that an outsider may think that any mom in my situation would want to spend every waking minute with her terminally ill child, and I know there are lots of moms who do want this. I’m just not one of them. I love my children dearly, but I am a separate person and am not defined solely by motherhood. I was 32 and had been married for over ten years when I had my first child. It was impossible for me to become this new person – Mom – and forget the person I had been for so long. I had to merge the two and let both have their space.
Now that I am parenting a child with a life limiting illness, I need, more than ever, to become that other person for a few hours a day. When I go to work, it is a way for my brain to escape and recharge. Aside from the financial aspect, I need my job because it makes me a better mother and a better wife. It is a way of coping with a very difficult situation. I think that part of the reason I have maintained my sanity over the past eight months is that I do get to completely focus my mind elsewhere for a period of time. For me, that has been essential. I know some moms love being home with their kids every day (healthy or otherwise), and I have tremendous respect for those ladies. But just like I will never question their decision to do so, I will also not feel guilty for the choices I have made. Continuing to work or not in this situation is a very personal choice, and neither is right or wrong.
As someone pointed out to me the other day, fathers almost always work, and no one judges them or gives them grief for it. No one expects a dad to stay home and take care of a child following a diagnosis like this. No one would say to my husband what that woman said to me. Why is that? Are we, as mothers, expected to be so one-dimensional that our identity as people outside of that role disappears the moment we give birth? There is nothing I wouldn’t do for my children, but they do not require my constant presence in order to thrive. Working allows me to give them the very best of me. Of course, a vital part of that equation is that Annabel receives the best care possible while I’m gone, which she does.
Parenting healthy children is hard enough, but parenting a dying child is mentally and physically exhausting, terrifying and incredibly challenging, and being able to go to work allows me to avoid getting swallowed up by it. I for one will never fault any parent for making the same choice.