Waiting Out the Storms
What do you say to yourself on those dark days? On those rotten days when the simple things that come easy to other parents are so clearly insurmountable for you and yours. When your neighbor's kids are having a birthday party that your kid wasn’t invited to or isn’t able to attend. When the latest setback is a little more than you can take.
A pep talk? A saying? A song? A stash of thin mints hidden in a box of Grape Nuts?
When my son was in the hospital, they kept coming in to try and convince me to just put him in a nursing home and give up trying to figure out what the hell was wrong with him; just because he had autism and couldn’t say why he was in pain, I grabbed a piece of paper and scribbled Jeremiah 29:11 on it and taped it to the door with medical tape. Social workers, doctors, whoever came in.. I'd just point to the sign. “Mom, we need to talk about..” read the sign. “Um, Mom, we really need to discuss…” READ THE SIGN. Wouldn’t even look up. Waited on my psych consult. Took about a day. The chaplain was in later as well.
“For I know the plans I have for you,” says the LORD . “They are plans for good and not for disaster, to give you a future and a hope.”
Read the sign, assholes, and go find a way. To fix. My kid.
What do you say to yourself that gets you through? What is your song? What is the thing you tell yourself when it feels like life is a big fat party that you and your child just aren’t fucking invited to?
My friend Beth says she remembers my husband telling her that when the insanely intense emotions hit, either hers, or her kids’, the agony of the unfairness of it all, that it really is like a storm. “Just grab something and hold on. Wait it out. It always passes.” Yeah.
Get yourself a mantra. Write it on your hand, put it on an index card, write it on the bathroom mirror with an eyebrow pencil. You can do this. You aren’t alone. It’s hard as hell. But you are not broken, not by a long shot.
Sonia looks at pictures of her kids.Then she’s ready for another round.
Rose closes her eyes and remembers all the good friends she’s made on the journey. Maybe you don’t have those yet. You will. Other parents and allies who will understand without question the searing pain, drowning exhaustion and inexplicable joy that you cannot communicate to anyone else.
Norma swears in her head sometimes. Which is pretty amazing because I just do it out loud.
My husband would sit and write music on his computer. He wrote an entire catalog of Dark Ambient music that way, with titles like All My Best Intentions and While He Sleeps. Next to a sleeping child hooked up to a ventilator, feeding tubes, in casts, dozing on drugs, he worked, his son’s future uncertain, bleak, even. He created life where hope seemed to be dwindling. I wait out those storms alone now, because he got sick himself, and passed away, but I have my people, and pictures, and my songs, and my friends, and my swear words. And my promises that there are always plans for a future and some hope. Always some hope.