Wednesday, November 21, 2012

Thankful all year long

Last Thanksgiving I wrote about all of the things I love and am thankful for about Lu. This year I have a whole new list to share, but first, a thought. On most holidays where you are  either supposed to honor someone, be thankful, be holy, whatever, it often occurs to me that it seems silly to make such a special effort just one day a year, when really we should be thankful every single day, not just onThanksgiving Day.  We should always cherish our parents, our children, our spouses, partners, etc., not just on Mother's Day, Valentine's Day, or whatever other holiday you can think of.

I don't mean to toot my own horn, or to make myself out to be some sort of accepting, saintly, serene being, but I do believe that I make a special effort to be grateful all year long for the good things in my life. And I constantly remind myself that things that are less than perfect could certainly be so much worse. Now, just last week I had a mini-meltdown while watching TV one night...I started laughing at some mediocre joke and then proceeded to simultaneously laugh and sob. I get down, I get blue, I get overwhelmed and I get completely pissed. I act cranky, and frustrated, and tense sometimes. I cry, I yell, I snap at Chad, and I lose my patience.

But even on the most frustrating days I am always grateful that I am able to be home with Lu to take care of her myself. Even when Rett Syndrome is causing something especially heart breaking to occur, or I am sick of bottles and medicines, therapies and equipment, I always try to remember that at least Lucy can still eat and drink.  She does not have seizures, she gains weight like she should, and that at least all of those therapies and medicines, and equipment exist to be able to improve her quality of life.

I am not grateful at all for the presence of Rett Syndrome in our lives, but I am grateful to Huda Zoghbi for discovering that a mutation on the gene MECP2 causes Rett Syndrome and because of that discovery a blood test was able to give us an accurate diagnosis. We didn't know anything last year at this time and now we do, so I am grateful for the knowledge, and I am grateful that we have found many wonderful people to help us move on and teach Lucy so many amazing things.

I am grateful for the constant mantra of parents who believe in their daughters: "They are smart, and they are in there." I am so incredibly grateful to Julie Peden, the IRSF representative who has taught me so much, but especially that she was the first person to tell me that Lu is in there. I am grateful that we found her (Lu) in there and have worked so hard to figure out ways for her to express herself.

The truth is, no matter who you are, where you live, or what you do with your life, some days suck and some days rock. What makes me feel grateful is that even on a day that totally sucks, I love my life with Chad and Lucy and all of our family and friends more than I think I could ever express in words. We are fortunate people, and I am thankful for that.

No comments:

Post a Comment