Wednesday, September 25, 2013

I'm glad to be me

You don't realize how trivial a lot of life is until a situation arises in your life that puts things into perspective. I never mention it, but often people have worries, complaints, and gripes that really do not compare to the challenges that I watch Lucy face every day. They do not really compare (in my opinion) to what it is like to live with the fact that your daughter, the beautiful amazing child you had so many other plans for, cannot do most of the things her peers can do. For all of the petty things that people whine about I want to say, "Uh huh, but my daughter can barely eat on her own. Lucy can't walk or talk, or hold a crayon.  Suck it up."

And then, there are other people's lives that are so much worse than mine and I am reminded of how incredibly lucky we are that although Lucy's disabilities are severe, she is relatively healthy. She is not dying. She doesn't even have seizures at this point which is great! She is smart and alert and happy. I have a friend on Facebook from Massachusetts who I have never met. Her daughter was originally diagnosed with Rett Syndrome even though she did not have the genetic mutation on the MECP2 chromosome. Last year she found out that her daughter does not in fact have Rett Syndrome, she has Tay-Sachs Disease. The life expectancy of Tay-Sachs is 4 years and she is currently dying. She is not yet 3. And so when I read her posts I think about how lucky we are that even though Lu can't do all of the "typical" things a three year old can do, at least she isn't dying. 

You know what I often think when I see people look at Lucy and I when we are out in public? I can tell that sometimes people (especially mothers) are thinking, "I'm glad I'm not her." I get it. I understand why people would be glad to not be me. And I get bristly about it sometimes by thinking what a luxury it must be to get to feel that way. But I will confess that I selfishly think about how glad I am that I am not my friend from Massachusetts. It's terrible to think that, but I can't help it. And I bet that my friend completely understands that people are glad to not be her. My heart breaks for her and I don't even know her. I hope her daughter goes as peacefully as possible. I hope she and her son can keep themselves together enough to move on a little at a time. I hope I am never her.

1 comment:

  1. You do have an incredibly unique perspective on life, and I try very hard to keep in the front of my mind when I am having a bad day or I see a challenge that one of my kids is facing how very fortunate I am to have them be so wonderfully fortunate. Despite the challenges each person is given, life carries on...until it doesn't. Each day is a gift.