Pause. Or go.
I honestly don’t know which.
Right this hot minute.
This is what’s on my mind: Time.
Have you ever spent time in a hospital? Or with someone in the hospital? Or days on end, for the umpteenth time with one of your three kids? The one with the chronic disease?
I know you have. I know that too well. And I know you know this:
Or it divides.
And then repeats.
Everything gets measured. Nurses and physicians come and go on shift: 7am, 3pm, 7pm, 11pm, 3am and back to 7am. Phlebotomy: 4:30am-every “morning.” Not a fun way for a child, whose already been “stuck” repeatedly, to start a day, again. Vitals, round the clock every so many hours. Medication, administered on schedule. Infusions? Another schedule. Visiting hours. Cafeteria hours. So many freaking hours. When will this freaking nightmare end? I’m not even asking how, just when, and not even forever, just when will this round end?
Very loving, caring, sweet, people often ask me how I feel when I spend days on end here with my almost 9 year old and his almost 7 year old chronic disease. And my answer is always the same: It feels like you are on an airplane, circling an airport you can see, and the plane just NEVER lands. And I feel…like I need a shower. And I feel like there’s NO room for me to complain about a single freaking thing because imagine what this kid is going through. And it’s a ton of love. And a ton of hate. And a ton of fear. And a ton of gratitude – All at once.
I don’t know what day it is.
I don’t know what time it is.
I’m not sure where we’re going from here.
Not in the long run anyway.
But I know we are counting down.
This is his last infusion of this week and then we get the hell out of this honestly, absolutely wonderful place for which we are eternally lucky, but hate fully with all our hearts while here.
Do you know how many clocks are in this room, ticking at us right now? Approximately 9. Mind you: they aren’t even in sync. #howtodriveanOCDmomcrazy
And none of them are fun. Nor moving fast enough. None of them are works of art, nor even great colors. None counting down the days/hours/minutes/seconds until we leave. All they do is tick. And measure whatever terrible thing they are measuring.
Want to take a trip in my own mind with me? Because I can’t leave here yet? And this is what I’m going to do with my 5 free minutes: he’s asleep and ok, the infusion is going well, no one else is here, and my mind can’t/won’t stop because it doesn’t even remember how?
I go here: Peace will come. Health will come. His time will come. We will get out of here. Everything will be ok, at some point in time.
Until then, I have a friend who recently asked for a ‘collection’ of something in her kitchen. I have always collected clocks. Like they are works of functional art. I especially like them when you can group them in some meaningful way, for instance: when partners are from 2 time zones and live in a 3rd: Pakistan, London, Philadelphia for instance. Or when a parent works overseas or across the continent. Or when relatives live far away, it’s fun way to keep the whole family on the same page, and to teach kids about time zones. Even just a collection of clocks in all the time zones can look amazing! For me, my favorite three clock settings are: When I should leave, when I could leave, and when I will actually leave to get EVERYWHERE…and it’s always late. Doesn’t matter how well those things work. Nope. But I love them just the same.
In the interest of time:
More on how I spend my free time later, (no, this is not how I choose.)
More on how time spends me later, (this is part of it, it’s just a really, really long story in full form, also for later.)
For right NOW: here are my favorite ways to keep track of time, for pure fun, just because we need a little bit of that right now.
For Pure Fun