I think it is so unfortunate that these two statements, essentially just different versions of the same sentiment, have become a cliche. Regardless of their cliche status, I say one or both of them to myself almost daily. Rett Syndrome is bad, I am not denying that, but it could be worse. Just as far as Rett Syndrome goes, Lu's seizures could be much, MUCH more severe. She could be in the hospital with pneumonia all the time, or have scoliosis, or hip problems, or not be able to walk at all. She could be restricted from eating anything by mouth, instead of still getting to eat three meals a day in addition to her tube feeds. She could be one of the many girls who passed away this year...but she's not. And remembering that as often as possible is what helps me get through most days.
Regardless of how bad a day might get, I always try to remind myself of how much worse off we could be. I mean, we have a warm house to live in, we can pay our bills, we have plenty of food to eat, and clothes to wear, and we have each other. I know I'm probably sounding like a sappy cliche right now, but really, it's just true. I know it is easy to get caught up in the small details of life. I know that sometimes those details can become big, even if they aren't. And I know that people can get wrapped up in agony over small things that it would be better if they just let go of.
The secret though, to being able to shed the cliche of these statements, is to be able to tell them to yourself and mean it. What never, ever works is telling it to someone else...not ever. It's just not helpful to say to someone, "It could be worse." It comes off as basically saying, "Quit your whining." And even if that is the message you want to send, they won't quit, and they will get mad at you. People don't ever assure Chad and I that it could worse, because I see in their eyes that they think we got the worst hand they can imagine. However, I want to very often remind people of how much worse their lives could be, when they are frustrated about insignificant things, or even complaining about the typicalness of their children.
I have heard parents wish for the days when they could simply set their children down and they couldn't move from that spot. I've heard people complain about how much their children talk. I have heard any number of similar gripes come out of other parents' mouths, but I never say, "It could be worse." That will invite a look of pity, shame, embarrassment, maybe annoyance. But what I wish is that more people in the world would just remember on their own how good they've got it.
There are people who are starving, living on the streets, or in war zones. There are people who have no one to love them, or are desperately addicted to drugs. There are parents whose child has died, or is dying as you read this. Do I wish life was different for Lu, and for us? Yep, I do. And sometimes, as I have mentioned any number of times, I just break down and have a tantrum about it. But then I pull myself back together and get on with it, because, in spite of stupid Rett Syndrome, we have a great life. And I have a hunch, that in spite of whatever complaint many others might have about their life, that they just might have it pretty good too.
Some things I have said over the past year that I never in a million years would've imagined I would say when we decided to make Lu include:
"Don't forget to get Lu's Depakote."
"Can you bring the pulse ox in when you come?"
"Lu had a big seizure today."
"We have an appointment to get Lu's new braces tomorrow."
"Lucy is getting a feeding tube."
But guess what, when we got her diagnosis nearly three years ago, there were a lot of things then that I believed I would never get to say, such as:
"Guess what Lu said today!"
"Lucy walked across the living room just holding onto my hands."
"Lucy went for a bike ride this morning."
"Look at the painting Lu made!"
"We are working on learning to read."
We have a lot to be thankful for. And here is a picture that I have shared before from last New Year's Day:
And here she is now, plump and healthy:
Life could just be so much worse, and I am grateful that it is not.
I hope everyone has a Happy New Year!