I am the mother of a medically fragile child. I have been her mother for 8 years, and for nearly all of those 8 years she has been very sick, recovering, or dealing with the permanent effects of her illness. She was born with Resistant Multisystem Langerhans Cell Histiocytosis, which is a fancy way for saying she had a pretty rare, very 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’m writing to let you know a few things about my family. 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 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. 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.
- 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 9 months. I had no history of cancer and was a normal mom until I heard the “C” word. Then I did hear that word and I was no longer you… I became post-pediatric cancer you. But I’m still like you, somewhere deep in me.
- Nearly every one of you guys, without fail, say 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 superheros without enough sleep. Well, chemo parents are just a different kind of superhero with even less sleep. Not better, and not worse.
- 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, withered up and burned into a pile of ashes. But the remarkable thing is that someone slightly different emerged from the ashes. A singed, but stronger version of me. Less concerned with the bullshit of life. I’m raw and honest and I’m done with the formalities that society demands. I have PTSD or anxiety or any number of things that makes dealing with me complicated sometimes. And I’m rightfully paranoid about my babies. I have been conditioned by years of fighting back Death in all his hooded, sickle-carrying horror. And I’m not likely to change back to who I was. Staring down that ass-hat leaves scars and robs you of a tolerance for bullshit. So, sorry. The years of conditioning my mother put into me before she released me to the public has been obliterated and you get this version.
- Once cancer hits you, 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. This is forever.
- Just because my daughter looks okay and is not getting chemo anymore does NOT mean that this journey and the daily fight is over with, by any definition of “over with.” 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.
- You will keep hearing about it from me because it’s a huge, active part of my everyday life. I will talk about pediatric cancer and histiocytosis, because everyone needs to know it’s out there. Don’t roll your eyes or turn away. This needs to not be marginalized. It takes babies. It NEARLY TOOK MY BABY. Imagine your child, lying in a bed, half the size she should be, unable to keep food down, pale and 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.
- We have to live everything in our lives differently, and it’s going to look like I am overly controlling or 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 she is “medically fragile” and the cancer could come back.
- I’m not making this stuff up. 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. And if we are doing something in our raising of her that you fundamentally disagree with, such as homeschooling, please assume that it’s because I know something about her that you don’t know and don’t lecture me on the virtues of the school system or whatever standardized institution I have decided against using.
- 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 kinda normal. So when she’s sick, or hurt, she doesn’t really react to it like she should, which means I might not find out if she’s sick or hurt until later. If all you’ve known is crap, a little less crap seems pretty darn good and you will 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.
- 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.
- 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.
- I feed my children what I do after years of research and discussion 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 glutten 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 humus or something along those lines. I got her through cancer. I’m pretty sure I’ve got this.
- 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 or or some other crazy stuff. (Seriously… I’ve had this conversation with a mom before. Seriously..)
- When someone tries to tell me how to raise my child, it can come off as judgmental, even if that wasn’t the intent. That 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.
- I have trust issues. I don’t trust people. And this is more than paranoia. Strangers don’t know that shes medically fragile or what they need to do if something happens. This ranges 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 (cliche, I know, but also true), but she’s still not coming over for a sleep-over.
- 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 and listening to me. 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 husbands 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.
Please note: This is from the perspective of me… a mom. My husband has been there beside me this whole time, fighting the good fight, and being a general superhero. He’s amazing. And what he does is in NO WAY diminished by what I put on here. He needs normal too. He needs to complain about my constant hatred for our kitchen cabinets and how he really needs a kid-free, wife-free vacation. And much like him, there are tens of thousands of chemo dads out there that work their asses off keeping their babies alive. So shout-out to all the Chemo dads. You guys are badasses.