- Susie Csorsz Brown
A hand out
Be kind for everyone you meet is fighting a battle you know nothing about.
When you look at a person, any person, remember that everyone has a story. Everyone has gone through something that has changed them. That they are reacting to. That has colored their viewpoint.
You don’t know where people are coming from, or what is driving their belief system … unless you ask. You don’t know where a person is coming from unless you have gone through the very same battlefields that they have, and bear the scars in the same manner. But even two people going through the same situation will come away from it with a different story.
My husband and I are both scarred from our experiences while my youngest was so sick. What started out as a seemingly innocuous easily-treatable infection morphed into literally more than a year of in-and-out hospital time, a drug resistant bacteria playing hide-and-go-seek in his little body, questions and unknowns. For me, I can remember in fairly vivid detail the expression on the doctors’ faces when they repeatedly tried to explain to me why he would have to be admitted, again, or had to have yet another surgical procedure. It felt like a horrible personalized version of Groundhog Day. For me, watching medical dramas brings back the days – literally – when I haunted the pediatric wards, trying to pace off a few more hours while my little cutie got some much needed sleep and let the med-cocktail-of-the-day do their thing. Now, packing for an overnight outing with the family reminds me of the numerous times I used the very same bag for yet another few-nights-stint in the hospital when ‘last minute packing’ meant grabbing clothes for me as well as books and toys for him that would keep my little guy occupied instead of both of us slowly going stir-crazy. Now, the smell of any sweet-scented lip balm reminds me of how they ‘change’ the smell of the anesthesia and how the doctors would let the kids choose what they would use to help them to fall asleep for the surgery. It's little things that bring it back.
I remember sitting in that cold pediatric pre-surgery waiting area. It was the wee morning hours; good for traffic but not good for the sleep. My little sweetie hadn’t had anything to eat or drink – nor had any child in the room – so I wasn’t going to either. There were games and books around the room, and cartoons on the different tvs. Each child was in a mini-version of the adult hospital gown; somehow they looked quite adorable rather than ridiculous as most adults do. The anesthesiologist came up to us with a box, and told my little guy to pick one (little did he know how hard it is for my kiddo to make a decision). The box contained at least 30 different tubes of scented lipgloss: the surprise ingredient to change the smell of the air that passes that will help them to sleep through the surgery. Sure enough, the inevitable ‘Oh, I don’t know. You pick one.’ (Because he literally can not make a decision to save his life.) Cherry chapstick it is.
People who meet me now have no idea why I overreact to the mention of the possibility of what would normally be a regularly occurring bacteria in our water supply, not knowing that that was the very one that my youngest struggled with literally for years (well, a drug-resistant gram negative version of it, anyway). I overreact because that very tiny little bacteria ruled our world for more than a year and a half and still rears its ugly head : Last summer, we had a flare up that turned out to be (thankfully) his body's reaction to dehydration instead of another infection. It underlined for us, though, that we can't not be vigilant. We can't, as parents, turn a blind eye. We can't stop asking questions and we certainly can't stop advocating for our kids, be they 3 or 13 or 33.
I've seen my fellow parents go through similar ordeals: they just through whatever hoops necessary to get their kids the help that they need, be is mental support, medical intervention or what have you. When you bring that little person into your life (no matter what age they are when you 'meet' them, from when they are a blob of cells to when they are as wrinkly as you might feel you are), they are your responsibility. Some turn into weeping messes, some start to bully, and some learn to advocate. There's not one response that is 100% correct for every situation; different personalities deal with problems and situations in completely different ways. Some ways may be more effective and more likely to wrought change; some ways might just make you feel better. Emotionally and mentally, it is exhausting to watch your little person be taken through the wringer.
I remember completely losing my temper and pitching a world-class hissy fit when my little smiley once again needed his IV changed; I was FED UP with watching them jab and jab at him. They brought in the miracle worker (I called her the IV whisperer because she could slide the needle in right the first time and with so little fuss that he didn't even have the chance to respond before she was already finished); I have no idea why she wasn't already the one doing the little littles' IVs but after that she was the only one I would let touch him with that needle. I felt better after the hissy fit, Smiley felt better because he wasn't jabbed and jabbed, and the hospital crew were happy to be able to do their jobs as directed (with his treatment). Win win. It isn't always that easy, and sometimes the situation is so complex, a simple personnel switch can't help but ... sometimes it is.
Any parent that has had to endure their child being in the hospital, or having a long-term ailment has no problem remembering the still-vivid details watching their child struggle with getting and staying healthy. We are stronger than we think, we parents. We weather every cold, every bump, every sniffle, every bruise, and we help our little people get past that. We grow extra vigilant and the Tiger Parent only rears its head when it needs to. But when it needs to, watch out.
I remember after I can’t even think how many days of admission, getting up and talking a walk through the halls while my little guy slept. We had our little corner room, and I had my own ‘bed’ (read: expandable chair), and I would do stretches and exercises to keep myself sane, but … it always felt like a treat to leave the room. A treat I would grab at when he fell asleep and I knew it would be at least 30 minutes before he’d wake up. I ran into one of the residents in the hallway. ‘You look so tired. You should go home and rest. We can take care of him.’ I could only gape at her. Why on earth would I leave him there by himself? Because I was tired?! No. I could only think that she was suggesting this only because she didn’t/couldn’t know; she was a young, single resident with no children of her own. She meant well, but … No.
How do we get through these times? We rely on our families. We rely on our friends. We rely on the kindness of strangers. We rely on our ability to ask questions and become informed. We rely on the quiet time we can find to regroup and recharge. We rely on convenience foods and take-away. We rely because we can’t do it all by ourselves, no matter how hard we try. We rely on medical professionals and their network of knowledgeable cohorts. We do our best because that is what we do best. We reach out to maintain what homeostasis we can manage. And we keep on because that is what we need to do. And, in the end, we get to the other side.
I remember a game the entire pediatric hospital played: it was like a form of Jeopardy, using the hospital’s networked tvs. One could call in from their room with answers, and win prizes. I can’t remember the category, nor the answer, but we won. At the time, I had no idea what we’d get but an hour after the game ended, a knock on the door yielded the ‘host’ and a cart full of prize options. My little guy chose Scout, a talking dog. He still loves his green puppy.
You don’t know my battle. I’ll tell you about it if you ask. I’ll tell you about how my little sweetie was in the hospital for more than 90 days in one calendar year, enduring literally dozens of procedures. I’ll tell you about how I had to listen to medical professionals diagnose my child without even taking the time to fully examine him. I'll tell you about how advocating for my son meant changing doctors and hospitals and starting the process from the beginning. I'll tell you about how the kindness of nurses and the compassion of (the right) doctors made our situation that much more bearable. I’ll tell you about how I worry about flare-ups or consequences even now 8 years later.
I don’t know where you have been or what you’ve been through. Your battle scars are just as real as mine are, your war wounds pot-marking your story, coloring your reactions, your opinions and your beliefs. I’ll listen, though, and I’ll be there if you need me. Just say the word, because that is how we get through this. We parents are strong, and sometimes being strong means asking for help.