We had a beach adventure today with Alex and Fitz, as we often do. Wading in the waves with Fitz amidst more people than normal for a Monday, I realized something.
We’ve been lying to you. We’ve been telling half-thruths. We’re never really honest with you. Not entirely, anyway.
It's nothing personal; it’s not for a lack of trust in you or because you did anything wrong. It isn’t because we don’t value your friendship or support for our family. It’s because >most< people just can’t understand the truth. And it’s almost as exhausting trying to explain it, as it is to live it, day in and day out, surrounded by the world.
We are certain the world doesn’t understand - because every day the world tells us so. The stares … no; that’s not accurate enough a word. The outright gawking. The whispers. The head shaking. The walking in the opposite direction upon seeing us coming near.
The silent judgement without knowing us.
It’s okay if you don’t understand. We don't expect you to...not fully. After all; we have been lying to you, right?
But if I’m being honest and you want to try anyway…
When a parent of a special needs child says "I'm tired," what we really mean is that we absolutely cannot anymore. In popular vernacular, “we just can’t even.”
We have nothing left. We are a brand of exhausted there isn’t a word to adequately describe.
The idea of self-care feels hilarious to us.
Not because we mean to diminish your your mid-day nap or your awesome workout; we want that for you. But because it can legitimately take DAYS for us to relax enough to begin to breathe normally, much less actually recharge who we once were as human people before extreme parenting. And we don’t have that kind of time.
We love our boys with a ferocity many can't fathom - not because we think you don’t love your little one as much as we love ours, or because you don’t care - but because we have to fight for our boys, every.single.day.
For their accommodations, their medications, their appointments, their care, their education, their equality.
For their basic human rights.
We fight for normalcy at home; what others might call ‘the usual,’ when everyone else is going out for drinks with friends, hosting play dates for their kiddos and enjoying popsicles on the sidewalk this summer.
And that is the thing we really don't fully share.
Because it can be ugly,
It shouldn't be, but it is. Because so few really 'get it'.
Parents of special needs littles live every minute of every day 'on' because if we rest--even for a second--it could mean danger for our child. It is rare to find another human who gets that.
Maybe our kid is lower functioning so they risk a fall or exploring an outlet with a fork.
Maybe our kid has behavioral issues so they become impulsive and things get broken.
Maybe our child is emotionally disregulated and they can cause harm to themselves or others.
Maybe our child's anxiety gets triggered and their reaction is so loud we are in constant fear of a call from the police or DCS.
These are very valid fears; its paralyzing.
No matter what the specifics, we NEVER fully rest.
When our kids aren't with us, we exist in a sort of stasis- always feeling fear or guilt, for when they may need us, when the phone might ring or when something may happen - because as luck would have it, they usually do and it usually does.
On an occasion of rare vulnerability we might share some of this with you in an epistle as I am, now. But on the whole, it is exhausting in a kind of way we won’t say because we truly don't expect you to understand.
Even if you don’t understand it, you can still be kind. (And so many of you are, in our community!)
You can offer an ear, without judgement. (This is huge.)
You can come sit with our kids so we can shower/nap. (Thank-you to those that have-it helps SO much).
You can send coffee, ice cream, chapstick or a plant. (You guys are amazing, thank you ladies).
You can hold our hand while we cry and sit in the awkward sobbing “silence” with us.
(Probably don’t try to hold my hand…😆)
Today, I lied to the people around us on the beach, smiling as if I didn’t notice their stares or whispers. Because I knew they didn’t understand. It still hurt. I still cried. Chances are, we’ve lied to you, too. But maybe, if more of us are open and honest, we’ll find we're all in this together, in more ways than we realize. And perhaps thats the start we need to building greater understanding. 💜