I apologize to anyone who was at the Millburn CVS on Sunday. All the pharmacist said was that our prescription would not be ready until the next day. She didn’t know that it was my third attempt to pick up the medicine, that Jack was down to his last drop of Keppra, and I was down to my last nerve. There were a half-dozen people behind me in line, but I was seeing red and didn’t care who heard me; “My son has Adrenoleukodystropy, Addison’s Disease and Epilepsy. His last seizure lasted over five hours and put him in the ICU for 10 days. I need his Keppra NOW! Not Monday. NOW!”
Five minutes later, I was walking out of the store feeling a little better. Not just because I was holding a bag with Jack’s medicine, but because I had let off a little steam.
“I don’t know how you do it.”
I hear this all the time. People tell me that they’re impressed that I manage to get through my days without losing it. That they get so frustrated with their children’s “typical” behavior, that they find themselves slamming doors and yelling so loudly that they expect Social Services to arrive at any moment.
Don’t kid yourself folks – I want to slam doors and yell. Just this morning, I cleaned up feces from clothing, bed sheets and a wall. This happened before I had even poured myself a cup of coffee. Does anyone really think that I was calm and happy? That I was singing songs about rainbows and poop? Okay – I WAS singing songs about rainbows and poop, but that’s just because Jack likes to start his mornings with song.
BESIDES, what choice do I have? How can I possibly yell at Jack? He doesn’t do things to get under my skin. He’s not being defiant or cruel. He’s just living his life to the best of his abilities. I can’t scold him. Instead, I do what any good mother would do. I hold in all that frustration until, out of no where, I explode.
My explosions are often directed towards my sweet husband, occasionally dear Anna and, if it’s really simmering, I explode on an unassuming pharmacist.
I’m sure there are healthier ways of handling stress/frustration, but this is my way and it has gotten me through the last ten years. Most of the time, I can release a little steam at a time and keep things safe for people around me. Although I was able to get a bit out on Sunday, I feel like there’s more steam brewing. Not sure why, but it might be connected to all those crazy hot flashes I’ve been having lately (does this mean I’m officially old?).
If you bump into me on the street, I recommend you pretend you don’t see me and run in the other direction.
I may appear calm, and if you catch me at the right time, you might find a smile on my face and kind words coming from my mouth, but if you say the wrong thing – our what I THINK is the wrong thing – you‘re going to regret it.
I’m sorry. Really. Dan and Anna can’t handle much more. It’s either you or Jack. And look at his beautiful face.
I spent last night cleaning piss off my walls. It sucks. I get made too.We’re just playing the hand we were dealt.
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Pee can be even worse. You don’t see it, but it still smells. We still need to get together and discuss raising our boys, writing and all things “special”!
Too funny. Ok, good. So you ARE human:)
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More human that you know – kinda pathetic sometimes;)
I know your pain i started my day cleaning poop off the couch the floor the kid. She has CDLS AND a seziure disorder she now has a vns plus keppra and depokote along with other meds ..when i loose it i just cry i have noone to vent too… Its not always sunny but generally poopy LOL
Please know that you can always vent to me. Seriously – reach out any time that the poop gets too thick! email@example.com. We need to stand together!!
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