"Stand tall but wearing thin.
I'm wearing thin."
A few weeks ago I was introduced to someone who knows a lot of the same people I know. He asked me how I know all these people: "what's the connection?" The introducer jumped in and said "oh, because Dani sits on a million boards and chairs every committee in the world." Obviously he was exaggerating but not by much. It's true. I'm busy. I run from activity to activity. Drop off/pick up at school, driving around to therapies, groceries (keeping a kid on a restricted diet means traveling to every market in town for foods), necessities, appointments; then there are the many boards/charities I sit on which hold many meetings and events; then there's my paid gig at a local non-profit. I'm busy. And I run late. A lot.
I know many moms feel they are just as busy. And I bet you are!! But can you imagine the busy-ness of all that AND still having to dress your 5 1/2 year old? I'm not talking about picking out clothes (which I do have to do). I mean I have to physically dress her. Just like you probably did when your kid was, I dont know, 2? When do kids dress themselves? And then there's the potty. I still have to take my kid. Every time. Well not for poop, brcause she won't do that on the the potty. You know what that means for me, right? There are times when I need to spoon food into her mouth still, too. It makes me even busier because these things take time. It all takes time.
People are constantly telling me I need to take time for me. Do things for me. They say I need to do things that have nothing to do with special needs. This, by the way, is close to impossible because with every breath I wonder how she's doing, what shes doing or not doing, and most often am I doing enough? And I even fear what awaits me when I get back to her. Sometimes I'm pleasantly surprised. But only sometimes.
Almost every night I have something going on. Last night I attended a dinner event where I heard the great Dr Elie Wiesel speak (nothing to do with special needs, though I did see both our DAN doc and a therapist we've worked with). It was amazing. Tonight I will attend a meeting for one of the boards I sit on (nothing to do with special needs). And it goes on. In fact, last weekend my friend Becca told me I'm the busiest person she knows (and I doubt she took into account the still having to treat my 5 1/2 year old like the 2 year old she often functions as)- that was right before I had to leave her house after an outburst by the bird.
When I do get a free moment, I want to melt into my couch, listen to some good music, drink a glass (or bottle) of wine and just chill the f out.
There's not much downtime in my job as Little Bird's mom. When I get it, I try to enjoy it. I don't go see movies I don't want to see just because everyone else wants to see them. Its a good way to take care of me. I'll meet them for dinner and then go home or to the bookstore while they go see it. I need to take advantage of my time because there's not a whole lot of it. The past 4 times I've had babysitters, I've gotten calls or text messages saying that they need me to come home- they can't take the tantrums or the bursts of crazy energy (sensory) or whatever. Does that happen to you, too, typical moms? I have no frame of reference. But I do know that it sucks. It certainly makes it harder for me to enjoy "taking time" when my phone is buzzing all the time. And if you just said that I should turn the phone off, you obviously don't have sick, "special" kids. Because moms like me never turn it off- the phone, the brain, whatever. It's always on. Always.
So if you see me closing my eyes in the waiting room of a therapy center, or dancing to the music on the elliptical machine, or singing at a red light, don't mind me. I'm just taking time.