We’re Captive on the Carousel of Time

“We’re Captive on the Carousel of Time”~Joni Mitchell

It slides like wet muddy sand through my fingers… STOP. Please please stop. It scares me. I want him to be just this right size forever…leaning up to give me a kiss and he doesn’t care who is watching.  The stringy arms that wrap around me so tightly i feel my ribs pull in as he hugs me when I pick him up from school. His thin long fingers twirling my soft hair, telling me I smell so good… but it seems like just yesterday he was three, and I was putting pull-ups on him before bed, and now he only wants boxer briefs from the gap.

I blinked and he is a pre-teen… who can argue any point, who adores his best friend, who is social and brilliant and athletic and funny as hell, but just yesterday he was teeny tiny.

Time.. life seems to take on measures of time… that word becomes dreaded when you are sick.. fuck time.. fuck the passage.
When I was younger I couldn’t wait to be 13… a teenager… and then 18 to vote and be a “real” adult. and then 21 so I could drink legally in a bar… and own a house and graduate college and finish grad school and get married and so on… we all do it…



…and it passes…

…and today what I wouldn’t give to roll back those clocks… really roll them back to when I knew the freedom of my body… before 2004… before i started this plight into month long hospital admissions, J tubes, organ removals… when I ran marathons and danced passed the 20 mile marker… when I won triathlons because I worked that hard…

today my days are measured by the number of times I vomit… and did I record it … and blood sugars that crash… and a stomach that doesn’t work… and missing more organs than I have…

…so we don’t wait anymore…
…if there is a trip to take… we book it
…if there are words to say…we say them
…if there are good days… we demolish them with joy
…if there are sicker days… we beg god that they pass quickly

There is a lot of love to have… so we love,   and love,   and love… with all we’ve got.


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