My deepest apologies if it comes off like that. But we spend enough time wallowing in the crap, and most times there is no need to rehash it here.
So I'll be clear - this isn't fun.
Yesterday was especially "not fun". Like the kind of day that makes you doubt your existence "not fun". The kind of "not fun" where you realize it's been 9 months since you spoke to another adult about anything but recovery times and diagnosis and medicine dosages. The sort of "not fun" that makes you realize your five year old has spent more of this summer in medical centers than she has outside. The kind of "not fun" that leaves you wondering how it can be that you're older kids are asleep before you even get home. The type of "not fun" that leaves us staring off into space because right now the words that would come out are things we've heard a hundred times or thing we don't want to say.
Nothing about the power being out for 5 hours and the oxygen machine going off was "lighthearted". Nothing about a three hour commute every other day is "fun".
Nothing about the alarm being set every two hours for meds is "exciting".
Nothing about not sleeping - because quite frankly, there ain't time - is an "adventure."
It's just life.
It just "is".
So we have to make it OK.
Between the pills and the pain, and the boredom and the frustration, we do what we can.
We do fireworks in the driveway, because we can't navigate a walker across any other terrain.
We let Rico use an entire can of whipped cream however he damn well pleases, because hey - at least his arms still work properly.
We watch eggs turn into caterpillars, turn into chrysalises, turn into monarchs, because clearly we'll be here when they hatch.
We don't run dance camp, but we let the bendy cousins show off their skills in the basement, and the less bendy ones give it a shot.
We hang out with pirates, and stragglers, and friends real and imaginary - because we'll soak up all of the love we can get.
We learn to blow bubbles and tie our shoes and count pills. We wish upon stars, and wish for better days, for new adventures, new dreams, new things to think about.
But no, it is not "fun" it is not what we wished for, not what we'd wish on anybody.
It just "is"..
And we just keep on.