Monday, January 16, 2017

What Happens After Your Kid Survives Cancer

When you’re pregnant, there is all this information that bombards you about how to be pregnant — what you should eat, how much weight you should gain, what you should do, what you shouldn’t do, how you should give birth, where you should give birth — there is a LOT of stuff people want you to know.

From my recollection, about 98 percent of my focus when pregnant with my first child was on Creating The Ideal Birth Experience.

This is amusing to anyone who has actually had a child, but it’s a rite of passage for first-time moms. Wow, there are a LOT of expectations.

Anyway, precious little is done to prepare you for the fact that between 12 and 96 hours after you give birth, someone is going to hand you an actual live human baby and expect you to know what to do with it.

When your kid gets cancer, there is a LOT of information that people throw at you. You have to get yourself up to speed on protocols, meds, interactions, steroids, intrathecals, and more. If you have other kids, well, they’re going to learn a new word: independence. At some point on the cancer journey, you realize that you have become completely blasé about general anesthesia. You will find yourself sitting outside the procedure room reading a book, and when they call you into the recovery room, you will barely glance up from your game of Words With Friends. Beeping monitors will no longer alarm you. You will be able to disable them without fully waking yourself up.

And then one day, they will give you your kid back and tell you to go home and go back to your regular life.

And this is where it gets unexpectedly hard.

When your kid survives cancer, there are certain expectations:

  1. You will always be grateful, every moment of every day.
  2. You have some sort of wisdom that others can come and drink from according to their needs.
  3. You will go back to your normal life, because there is no more threat.
  4. You will stop talking about cancer all the time, because IT’S DONE.
  5. You will get your act together and move on with your life.
  6. Everything in your family will go back to normal.

Here is my actual reality:

  1. Even when my kid had cancer, he could still behave like an ass sometimes. My kid is amazing and awesome, and yes, I am grateful to have him — and all of my kids — but sometimes along with the grateful is a healthy side of SHUT THE HELL UP AND STOP FIGHTING WITH EACH OTHER AND JUST EAT THE DAMN FOOD WITHOUT LOOKING FOR HIDDEN CARROT BITS AND SERIOUSLY OH MY GOD SERIOUSLY GO TO BED ALREADY.
  2. I have no wisdom. I have no grace. I have always been graceless, and that hasn’t changed. I have a massive superiority complex, but I am not here to be your wellspring of “God only gives you what you can handle” and “You are stronger than you know.” If I am a wellspring of anything, it is more along the lines of chocolate or coffee.
  3. HAHAHAHAHAHA. I don’t know how normal I was before cancer, but I am SO FAR AWAY from normal now that it is frightening. I am terrified a LOT of the time. It’s super helpful that I have an amazingly supportive husband who says things like, “Abbi, you could get hit by a bus tomorrow.” Yes, thank you, and now I have ONE MORE THING to worry about. 
  4. I am seriously incapable of not talking about cancer. I sometimes try realllllllllly hard, and then it just explodes out of me. I can’t just say, “This one time, I met this woman, and this thing happened.” Nope, I HAVE to tell it like this, “This one time, I was on the pediatric oncology ward when my kid had cancer, and I met this woman, and this thing happened.” If you knew the amount of effort I put into NOT talking about cancer, you would be surprised, because it is a LOT of effort, and I get NO results. 
  5. HAHAHAHAHAHA. SO NOT TOGETHER. Yep, I vacuum a lot lately. Trust me, OCD never happens for a good reason. 
  6. Oh, my family. My daughter who resents me, my other daughter who resents me slightly less, my sons who know that certain topics can only be discussed with Daddy because they upset Mommy too much. Yeah, my family is never going back to normal.

The other thing, the thing no one ever tells you is going to happen, is how horribly guilty you will feel. There are contacts I cannot delete from my phone or my Facebook feed, children who have died and their parents who have lived, and I look at their names almost every day, and I think, “Who decides?” And I think, “How did we get so lucky?” And I think, “How could I bear it if?” and I think, “Stop,” and I think, “It’s okay, he is okay,” and there you go, I’m sobbing on the floor of my kitchen, because it might NOT have been okay, and then what?

There’s that dumb line about how being a parent means walking around with your heart outside your body. Well, watching your kid almost die, staring into that dark, dark place, and then coming back, means that for the rest of your life, your heart has a hole in it, and no matter how hard you try, you can never fix it. You are almost afraid to love wholly, because it hurts so much, all the time.

And I write about it and I talk about it and my daughters roll their eyes and my husband shakes his head, and my friends probably think, “There she goes again,” and so I smile with my mouth closed and swallow the words around the lump in my throat and I try to pretend. And I go to sleep and get up and do it all again.


isf said...

I am hoping that if (when) I am ten years out I won't think/talk about cancer (except as a volunteer at Arizona Oncology because I do want to keep up with helping people) and people I meet will not know my medical history because I won't tell them.

I think you have gained wisdom. Wisdom comes from experience.

I have typed many more words and paragraphs than you see here. I have then deleted them. That is because I am wise.

Kate Bacher said...

God bless you. This is a horror no child or parent should have to face, but we know it happens. It is happening to a very close family member, at five years of age, right now. Never easy. But my hope is that even though things will, can never be the same, they will develop a new normal, and just be happy. Be happy, healthy, and appreciative for every second together. Will those of us outside the circle ever truly understand, no. But we try, and we want to help, and we hurt for these little ones and their parents that we could just take a little bit of the burden from them. And then we pray.

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