Life with a child with issues isn’t for the faint of heart. I didn’t sleep well because Sara didn’t sleep well. And today will be a rough day for me because it is a rough day for her.
I am tired of always having the same bad day. Before having Sara (and her life fell apart) I still had bad days but they were for a variety of reasons. Car trouble, bills to pay and no money, my flight was delayed 6 hours, and crazy stories like the time you got a flat tire on the way to the Emergency Room at 5am. When you have a child with issues you don’t even bat an eye at that stuff anymore. You still have bad days, but it is more like a Groundhog Day type of bad day. I never realized before how the variety of “awful” actually kept things interesting. Eventually those “bad days” became funny stories to be shared on Facebook or retold at parties.
The bad days with a special needs child aren’t Facebook worthy. They aren’t even worth sharing when someone calls to ask “How are you? How is your day?” because it is just a wash, rinse, repeat of the other bad days you complained about in the past. It’s not interesting and nothing ever changes. So you just say “Fine thanks, and you?”
I’m tired of solving the same problem over and over and over. Though I appreciate that repetition has made me a master at knowing what needs to be done.
I’m tired of being tied to the kitchen, spending hours whipping up Gluten Free, Dairy Free, Corn Free, Oat Free concoctions that no one likes. I’m tired of doing the dishes.
I’m tired of Dr.’s appointments, B12 shots, tracking her sleep, what she ate, her symptoms, watching her face for cues that she might spiral.
I am tired of trying to decide if the situation calls for tough love or understanding.
I am tired of the looks I get when I say that Sara is a “picky eater”, for being judged as a bad parent because she won’t – eat that food, go off with the other kids, stay home alone, get to school, go to sleep, do her chores and on and on.
But…my bad day pales in comparison to the bad days of the beautiful girl who is currently struggling to survive today. The one who is soooo tired. The one who is too young to feel this old. The little girl whose eyes plead with me to “help” when the tags are too itchy, the lights are too bright and the sounds are overwhelming.
Today we are tired.