rebuilding

I learned 10 days ago that my son’s cancer has returned. Usually, I’d get right on my blog and start writing away about the options as well as including my hopes and fears and all the other nonsense that flies through your head when you’re given tremendously bad news. But this time, I did my alone-time crying and left it at that.

I guess I’m tired of stating and re-stating how cancer has obliterated our lives.

My coping mechanisms have always included an intense desire to hide coupled with my ridiculous sense of humor. And even though I write on my blog – a very public outlet – I’m still able to hide behind my computer screen: refusing phone calls, ignoring emails, saving texts to read later. It’s strange. I tell all of you absolutely everything as long as I have this computer barrier between us. And you all want to help. You all want to check in and see how we’re doing. And I appreciate it. I just can’t handle it in person. I can’t face you. I can’t face the pitying looks. I can’t face the hugs (even though I want them.) And if I do have to face you, I pull out my weird sense of humor just to give you the semblance of me being slightly okay. Also, I can’t face the advice. I rarely ask for it, even from other cancer moms, because we’re all so different. And when it comes down to it, nobody knows what to say. I’ve heard all the advice out there… I promise that you have nothing new to offer. No offense, but by this late period in the game, I’m extremely well-steeped in what options there are for my son, which, unfortunately, are rapidly dwindling.

There is a ridiculously high chance that I’m going to lose my son. And with each relapse it smacks me harder in the face. Please, before you castigate me for not embracing each precious moment with my children, please re-read my entries and note that I HAVE DONE THAT every step of the way. It’s just when the beast returns rearing its’ ugly head, I have to rebuild my army. I have to restructure. Sometimes, that includes changing key players in my inner circle. Sometimes that means reorganizing a plan of attack. We’re past the point of asking “why.” We are now in survival mode. How long can we keep him healthy enough to enjoy his life? What are his limits? What are mine?

How do we do it? Honestly, that’s my favorite sentiment from friends and well-wishers: “I don’t know how you do it.” Well, friends, I don’t either. I don’t wanna do it. I wanna lay on the couch and watch stupid movies and ignore all the nonsense. And sometimes I do when I’m alone. When the kids are with their dad, I sometimes pretend that cancer doesn’t exist. Yesterday, in my alone moments, I put on my headphones and listened to music at a deafening level, singing at the top of my lungs (probably much to my neighbor’s dismay) and watched myself dance in the mirror. Embarrassing? Only if I get physically caught. Relieving? On some level, yes. I can still “get down” (at least in my own mind) and if I can’t hear myself sing because of the loud music pumping through the headphones, then I think I sound like a real contender on one of those Idol or Voice shows or whatever stupid television programming we numb our minds with. Hey, I could be addicted to crack or some nonsense like that, but I’m navigating this solely on antidepressants. Well, and sometimes a little beer.

Regardless, here we go again. I’m madder than usual. Mad that another summer has been squelched by cancer. Mad that my son has to do this AGAIN. Mad that “important people who could make changes” simply don’t give a crap about Childhood Cancer. That has been made very clear – extremely clear – that it’s not going to change. There are wonderful people out there fighting to be heard, fighting to save our children, and I applaud them. I am grateful for them. But it’s depressing that all their hard work is falling on deaf ears. The people in charge of shifting the attention to children probably get kickbacks from someone stronger… which just doesn’t seem right. It takes a true bully to not give a shit about sick children.

So, when I went to get my bangs trimmed yesterday, it was really one of the first times I was in contact with someone who knows Ben very well (she cuts his hair, too.) She has known us for a long time. She reads my posts. She is actively interested in what’s happening in our lives. So, when I saw her, I had to deal with the tears I knew would be coming. She hugged me tight and asked how we were. Well, frick. What does one say? “We’re scared, Tawnee.” And then I didn’t say much else other than explaining the situation and what options we were considering. She did the rest of the talking. Words like “you’re so strong. and kind. and sweet.” All descriptors that she used for my children as well. Then she said, “I’ve seen you go through so much. I’ve seen you at your lowest. I’ve seen you completely broken. But now I see you strong again.” She applauded me for making some serious changes in my life over the years and then she said this: “I admire you.”

Now, I hear “you’re so strong” and a lot of other varieties of similar statements, but “admire?” That one is not as common. And it brought tears I wasn’t ready for, which if you’re getting a haircut, any moisture on your face is going to attract little bits of annoying hair. She let me know that my words were reaching more people than I could imagine. And that they’re actually helpful. My open heart is actually doing something for the greater good. She picked the tiny pieces of hair off my face and wiped my tears, which was the closest thing to being “mothered” than I’d had in a very long time. It’s hard to let myself be that vulnerable in public. Here on my computer? Sure. But in person? Letting her see my pain was something I sincerely have trouble with. I don’t often trust people with that piece of my heart. There are many reasons why, but letting my pain out in my blog often feels safer than letting someone hold me when I’m crying. Probably my cynical nature. But I’ve been shown – harshly – that some people pretending to care simply don’t have the capacity when it comes right down to it.

So despite wanting to hide and despite letting my emotions flow here rather than “in person,” it felt meaningful that someone could even begin to gather something from this terrified person hiding behind her computer screen pouring her own heart out to a land of anonymous hearts. We’re beating in rhythm for once. And that is truly replenishing to me.

We’ll rebuild this army. And nothing will stop us.

Until it does.

Then we’ll rebuild again.

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23 Comments

  1. ❤ you guys…and admire your strength, really do! Never been asked or agreed to walk this shitty walk, and feel guilty for having to hold my stinker with NED today. You are amazing no matter what tomorrow brings and the most important person who matters knows that, Ben knows that and loves you for it

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  2. See that is just it…if we could keep things and what we do would make a difference neither of us would be facing this Love! That is what is so devastating about this crap. But I know today that it is the journey that we can change even tho the final call is not ours. Fight like hell, love them with all you got, the more balanced and hopeful you remain the more healing aura is around the kids, and I believe that the bond we have already with our kids is something some people never have a change to even know living a full lifetime and for that, I am thankful every day. No regrets, no guilt, just moments, and love, and tough love if that is what they need =) you have noone to answer to but Ben and you know he knows you are the best for him!!

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  3. I agree with you completely, Sarah!! More could be done!! You & your beautiful kids are ALWAYS in my prayers. BTW, you are an awesome writer( I hope it’s ok to tell you that)! I’m just so sorry to see Ben & his family go through this!

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  4. Sarah, you truly are a beautiful writer. We need to get Ben his cards from his 6th teachers! I’m off from work next Friday … Maybe we can meet you and Ben somewhere or drop them off? Let me know which ps4 games Ben likes for a little belated Birthday present! :). Know Ben and your family are in our prayers.

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  5. Love you Sarah…in person..through the computer screen. It doesn’t matter to me. I see you…I love you❤️You are an inspiration to me. Not because you are perfect…but because you let me in..all of us in..you are a rare gem of honesty..humor and raw determination with a pinch of sexy

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  6. I think everyone who reads your posts admires you for the wonderful mom you are and your courage and strength. And you truly are a gifted writer. Have you ever thought about a book about the Bean. I know your writing and courage inspire so many. Hugs to you

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  7. I have no words, either. Just wanted you to know I’m thinking of you — from a long distance away! – Cheri’

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