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:
Time.
Stands.
Still.
Or it divides.
Then multiplies.
Then dis-a-ppears.
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
xo,
a
Good luck. I am a mom doc, and my mentor said, “Always remember, you are an unwanted guest in their lives,no matter how much they might like you.” I hope your child and you feel better.
We’d be screwed without you mom doc. So thank you. Just for being. But especially for being both. xo
I have two boys with hemophilia (chronic disease) and hours were spent in ER’s and hospitals until we moved to a big city with a wonderful clinic just 5 minutes from our house. The waits and worries, and un-synchronized clocks are still there–but its carpet instead of tile and the snacks are better. 🙂 May all children someday know the peace of being free from shitty diseases that keep them from being a kid.
here’s to the ‘bright’ side of all the sh#t sarah. xoxo
As a wife of a hemo (as he calls himself) and mama of two carriers….rock on to all moms powering through chronic illnesses.
I just wanted to say, “I get it.” We are two years into living with chronic kidney disease (that comes with a host of other related issues as well). We’re anticipating a couple more major hospital stays in the near future, and I’m dreading it—the not being able to ever rest in a place that’s supposed to be healing, the constant answering the same questions over and over, the multiple teams not talking to each other and getting things confused, the eternal vigilance required on my part, the being separated from the other kids for long stretches of time and hating what a toll this takes on them. You’re right, we’re grateful for that place and for all the people who support us there, but we still hate having to be there. Hang in there, mama. You are doing this!
it’s a long road, but none of us are on it alone, and there is so, so much love in that. thank you for sharing your love and i send you tons of it right back. xoxo
Beautiful, heart wrenching, and totally true.
truth is often both, right? xoxo
Thank you. Thank you for writing this. I have been a reading this blog (and ANMJ before that) forever and more than a handful of times I have started an email for all of you asking to do a piece on fashion or design and life as a mom with sick kids but between one thing and another I never sent it. But I should’ve. There are all kinds of moms (and dads) and some moms are in hospitals and doctors offices all the time. Or at occupational, behavioral, or physical therapy. Or have children in wheelchairs or walkers. Or have a kid with Autism, Epilepsy, or Leukemia. I am one of those moms. And I want to foster hope and independence in my kids as much as I can. I want them to have hopes and dreams and hobbies and interests and be “normal” kids as much as they can. They are kids, not just the diseases and conditions. They are so much more than the battles they fight. To do that I have to Mom, in the grandest sense of the word. I have to be more than their caretaker. I have to have hopes and dreams and dreams and interests, too. I like fashion and design. A lot. So I am that mom in the children’s hospital wearing a green faux leather biker jacket. But I am also that mom who never wears anything but sneakers because I never know if I will have to pick up my 60lb child and carry her home from the playground or library because her legs aren’t working anymore. But, thanks to this blog, my sneakers are snazzy. And now I have ideas for a new clock.
The waiting in the hospitals is HARD. You have been through this before so I can offer nothing new but the comfort that there are many moms (and dads) going through this as well. It is a rollercoaster of emotion. Some days are harder than others. Some days are truly awful. And some days you get to go home. Good luck.
those snazzy sneakers absolutely help carry the weight and love of the world! it’s the little things sometimes, that make the big things more manageable. for all of us. but more so, it’s the ‘us’ that does. sending you and your strong back tons of love. keep on momma. and we’ll come back to this. it’s the beginning. and barely breaks the surface. bits and pieces. we’ll take it in bits and pieces. and in large mom strides, with kids in tow. all love. xoxo
I’m sorry, that sounds really hard. I think it’s okay for you to complain and at the same time know your child is having a harder time.
thank you for the love. and for the very truth filled statement. it is ok. it’s all ok. for all of us. always.xo
Thank you for sharing your story. We live the same life of a child with severe disabilities who will be dependent on us for her lifetime…with a hospital bag always packed by the front door for our numerous trips…and balancing other siblings. Yes, a life lived in sneakers and backpacks to the extreme, so it’s nice to escape to TME to take some time for yourself. Keep going Mama. Xo.
Keeping. Going. Always. Oh the front door….do I wish I had left it in ‘order’ this time. It was like amateur Tuesday. I paid the price. I’ve been reminded. And yes, always will we keep on and share, in our hearts. xo
This post really resonated with me, as my two year old son has Neuroblastoma. We have spent more time in the hospital than not in the 16 months since he was diagnosed. I wrote a “day in the life” post about one of our days in the hospital, feel free to take a look. https://lemonstoneblog.wordpress.com/2016/11/26/a-day-in-the-life-hospital-edition/