I am the mother of a medically fragile child. I have been her mother for eight years, and for all of those eight years she has been sick, recovering, or dealing with permanent effects of the illness.
She was born with Resistant Multisystem Langerhans Cell Histiocytosis, which is a fancy way for saying she had a rare, serious cancer at birth. She's okay now. She's got scar tissue and damage and lingering issues.
But she's here, and that's what counts.
I wanted to explain a few things to you, so you understand me better, since you have to deal with me on a daily basis, and sometimes I get testy and I don't mean to. You are my friends and my colleagues and my confidants. You are funny and wise and silly and opinionated and I need that kind of normal in my life. But, I'm not normal.
I thought it might just help to air out the dirty laundry, so to speak. Just put it all out there from the pretty little things to the granny panties.
1. First, I am you. I'm just a few years post-pediatric cancer from where you stand right now. So keep that in mind ... you could be in my shoes. I had a healthy (I thought) baby girl for nine months. Then I heard the word "cancer" and I was no longer you ... I became post-pediatric cancer you. But I'm still like you, somewhere deep in me.
2. Nearly every one, without fail, says something like "You're so strong. I couldn't live through that." YES ... yes, you could and you would. When your kid is sick, you get them treatment. You go the appointments. You're a parent. You do parent things. This is just a parent thing. The difference in this particular parent thing is the degree of the parent thing. It's parent thing to the 10000th power. Parents are just superheroes without enough sleep. Well, chemo parents are just a different kind of superhero with even less sleep. Not better, and not worse.
3. I'm not who I used to be. If you knew me before my baby got sick, the woman you knew back then is gone. She died the day that she asked God to please take her in the place of her child. She withered up and burned into a pile of ashes. But the remarkable thing is that someone different emerged from the ashes. A singed, but stronger version of me. I'm raw and honest and I'm done with the formalities that society demands. I have PTSD and anxiety and any number of things that makes dealing with me complicated. And I'm rightfully paranoid about my babies. I have been conditioned by years of fighting back Death in all his sickle-carrying horror. And I'm not likely to change back to who I was. Staring down that hooded ass-hat leaves scars and robs you of a tolerance for bullshit. So, sorry. You get this version of me now.
4. Once cancer hits, you fight it for the rest of your life. My baby has weakened bones from the chemo and steroids, damaged bone marrow, an enlarged liver and spleen, so she can't take a hit and is more susceptible to contagious diseases. And because of the nature of her disease, every bump, rash, and illness is cause for concern, even 6+ years post remission. She will be getting scans her whole life. Cancer isn't just *poof* better. It leaves permanent damage, lots of it. So please don't assume that because she looks good, that she is good. Not all diseases show up in the form of skin lesions, hair loss, or a wheelchair.
5. You will keep hearing about pediatric cancer and Histiocytosis from me because it's a huge, active part of my everyday life. Everyone needs to know it's out there. Don't roll your eyes or turn away. This needs to not be marginalized. It murders children. It NEARLY TOOK MY BABY. Imagine your child, lying in a bed, frail and thin, unable to keep food down, pale, without a hair on her head, hooked up to so many tubes you've lost count, and You.Can.Do.Nothing.To.Help.Her. You'd find the tallest building and scream into a megaphone too.
6. I'm going to look overly controlling or like a helicopter mom. But it's all for her safety and health. She can't have certain medications. She can't eat certain things. She can't play certain games. She can't go certain places. That is post-cancer life. I'm hovering because I have to.
7. I'm not making this stuff up for attention. She had cancer. Her body has permanent damage. Any attention, time out of school, access to resources she gets is not something she has because we are spoiling her. She NEEDS the accommodations and extra resources to be on equal footing with your kids, not to get ahead.
8. She's NEVER been healthy. She was born with cancer. She acts like she feels great even when she feels crummy because to her, crummy is normal. So when she's sick, she doesn't really react to it like she should, which means I might not find out if she's sick until later. If all you've known is crap, a little less crap seems pretty good and you smile and enjoy the less crap. That's where she is. Right now, she is happy and relatively healthy, but she still tires easy and still has some temperature control issues and still has asthma attacks and gets hives when she gets too excited. And she powers through. It's our normal.
9. Please talk to your kids about other kids that are different. My daughter doesn't want to be made fun of because her tummy is larger due to her enlarged liver and spleen. And your kid doesn't want to be known as the jerk that made fun of the kid with liver disease. That's not cool for either kid. The talk I had with my daughter about this went sorta like this: "If you see a kid that looks different and you can't understand why, ask nicely. You don't know if they are missing their hair because they are on chemo, or if they walk funny because they broke their leg and it healed wrong." Appeal to your child's empathy and try to relate it to what they understand.
10. My kid might act out. She spent a HUGE chunk of her psychological developmental time in a metal crib in a hospital hooked up to morphine drips and chemo infusions. That's not to say that I LET her act out, but it happens. She is not spoiled because she was sick. She's still playing catch up.
11. I feed my children what I do after years of reading and trial and error and discussions with physicians. And while you might look at me like I've lost my mind when I say that while my child munches down on a McDs french fry, please keep in mind that I happen to know what kind of oil they use, that those fries are (almost completely) gluten-free, full of starch, and don't trigger a puke reaction from a nauseous kid. So yes ... I know what I'm doing. I don't need pointers on non-GMO, organic hummus or something along those lines. I got her through cancer. I'm pretty sure I've got this.
12. We did nothing to cause the cancer. No one did. And implying that we took an action that nearly killed our kid is insulting and will be an automatic removal from the Christmas card list. Also, we are being led by the specialists for her treatment. So unless you've literally been in my shoes before me, please don't tell me that chemo is bad or that I need to try her on marijuana instead of the chemo or or some other crazy stuff. (Seriously ... I've had this conversation with a mom before. Insane...).
13. When someone tries to tell me how to raise my child, it can come off as judgmental, even if that wasn't the intent. It just makes me uncomfortable. It makes me want to hide how I'm different, but I can't. It makes me not want to talk to people at the PTA, or in girl scouts, or at the pool. It drives me away from you.
14. I don't trust nearly anyone. And this is more than paranoia. Strangers don't know that shes medically fragile or what they need to do if something happens. This includes everyone from bus drivers to babysitters. So I will drive her to school and she won't be staying with your kids during a sleep over. It's not you, it's me (cliché, I know, but also true), but she's still not coming over for a sleep-over.
15. When she accomplishes nearly anything, we celebrate -- win or lose. Because she nearly wasn't able to run that lap. She nearly wasn't able to sing that song or dance that dance or climb that hill or live this life. The fact that she can is worth celebrating. If I'm too soft on them and that makes them grow into adults that don't strive for more, better, faster, everything, then I'm okay with that. There's something to be said for a happy life driven by contentment rather than a life driven by ambition and the need to be the best.
Thank you for reading this. I know you might be asking, "What can I do? How can I help?" You don't need to do anything, but you can help me in how you act around me.
What I need is to hear normal things not related to the right way to raise a kid. I need to hear about how great the new librarian at the school is and what book you're reading. I need to gossip about how our kids can't put their clothes away and talk about normal things the kids do. All I need ... all any of us need is for you to look at us, smile, and act like what we are doing is normal. Because, in an echo of the words we hear so often as parents of a medically fragile child, this is "our normal."
This broken, worry-filled, medication-laden life is my normal. And I just want to feel normal in a normal world. And you, my dear friend, some laughter and mundane conversation, and a deep cup of coffee can make that happen.
This post originally appeared on Herding Chaos.