Stronger Than I Look

It was late at night when he was wheeled onto the unit – a boy of eleven – with a full head of hair (a rarity on this particular floor.) It was 2004 and I was walking an infant Madeline around the unit, one of our favorite nighttime activities. Ben was in his room, sleeping off his painkiller-induced state. If I remember correctly, I’m pretty sure my three-year-old Ben was in a good place in his therapy, responding very well to treatment, so we were actually breathing a bit normally. But I’ll never forget that boy sitting in his wheelchair, steered by a staff member from the emergency room, with his family (clearly in shock) following behind.

Two nurses were whispering to each other before they caught sight of me standing there. I heard them say “relapse” and hug each other. It was late at night, after all, they were allowed to show their non-stoic side. My brow furrowed as I bounced Madeline against my shoulder – this kid was a night owl like me – but it gave me reason to stall at the nurses station. I admit, I’m a Nosy Nelly at times, but it’s only because I care. I don’t want the information simply to be a know-it-all. I sincerely believe that I have an overabundance of care and compassion flowing through my veins. I truly want to help. And I would find out eventually, anyway. We were a floor of know-it-alls when it came right down to it. We lived together. We rarely left the halls that housed 28 rooms of sick and dying children. We kinda knew everything about our neighbors.

But the nurse was forthcoming despite it not being her place to share: “Relapse. Neuroblastoma.” My shock forced me to take another look at this family. I saw the back of the boy’s head… so full of beautiful hair… as his father slowly closed the door, barring me from their private pain.

Frick. It was every parent of a Neuroblastoma child’s nightmare. Historically speaking, Neuroblastoma is a pretty freaking horrible disease. However, the “experts” say that if your child makes it through induction therapy AND doesn’t relapse, then there will be a point that the child will most likely live disease-free – and have a fairly normal life. This was the option I wisely chose for my son, regardless of knowing that his initial diagnosis included the phrase “high risk for relapse.” Yeah, that wasn’t going to happen to my kid. I wasn’t going to look like those parents following behind their son, knowing that a relapse of Neuroblastoma – at least 10 years ago – pretty much guaranteed that your child would die.

This boy, the one who came in late at night in 2004, did die shortly thereafter. As did Sophia. Eden. Kathryn. Stevie. Nick. Christy. Jack. Mason. Dominique. And our precious Justin. This list of names is just the tip of the iceberg of children that this nasty beast has taken from us. Children we’ve known. Families we’ve loved. Forever changed by a freaking horrible cancer. I’m not saying there’s a “good cancer,” but Neuroblastoma is particularly evil. Where giant strides have been made in leukemias and other cancers, Neuroblastoma remains one of the trickier cancers to treat – and nearly impossible to beat.

We had four years of no fighting. I honestly thought that it had read my report, the one where I circled “NO RELAPSE and LIVE HAPPILY EVER AFTER.” That’s the option I chose. I was banking on it. Then, in 2009, you know what happened. Relapse. Ben’s New York team actually used the term “curable” when referring to my sweet Ben. I ate it up. Lived on it. Until 2013. When a second relapse had the doctor saying “Chronic Disease.” Quite a departure from “curable.”

What that means is that Ben will always be fighting this in some way, shape or form. Until something kills him. Pneumonia. Heart Failure. Some other Organ Failure. A Secondary Cancer. Or, simply, the Original Beast itself: Neuroblastoma. And while my head understands it, I just can’t get my heart to accept it. I’m not being fatalistic. I’m being realistic. The chances of Ben’s long term survival decreases with each relapse. He was given a 20-30% chance of survival when he was initially diagnosed. So, if that goes down each time he relapses, the odds of his survival are pretty darn low at this point.

And given the fact that we lost our sweet friend just days ago makes me question every single ache and pain Ben has. I’m terrified. I don’t want to wake up to rediscover that my son is no longer there. I don’t want to gingerly touch his belongings wondering if he has plenty of things to play with in heaven. I don’t want to ache whenever I see a Lego or watch a funny YouTube video, remembering that my Ben loved these things. I don’t want to be a typical Neuroblastoma, Stage IV, high risk for relapse, unfavorable tumor kind of mom. I DON’T WANT THIS FOR MY SON! I don’t want this for any of us. But Neuroblastoma doesn’t care.

So, a few nights ago, I took food to Lori’s house. I chatted with her daughter, Kayla, for a while. She had been cleaning while her mom was out visiting Justin’s gravesite. Kayla was just trying to keep busy to avoid dealing with the pain of losing her brother. But the evidence of Justin was everywhere. Legos. Pictures he had created. Pictures of him. Paraphernalia from the various charities for which he was a spokesperson. Flowers from his service. He was everywhere. I was there to offer support, not be a crybaby nuisance. So, after dropping off the food and hugging the hooey out of Kayla, I left. Unfortunately, when I got out to my car, it wouldn’t start. It had started to snow. Heavily. And my dogs were in the car. So, I called AAA and was told I’d have a 90 minute wait. I have small, yippy dogs. They are not made for Colorado weather. So, I called my ex-husband to see if he’d be willing to help me get them back to my apartment. Fortunately, he was.

Matt ended up driving me back and forth to Lori’s a couple of times while AAA tried in vain to start my inherited 1999 Mercedes E320. I tried to stay on the “down low” because, well, I was trying to be helpful, not add more stress to Lori’s life by being stranded out in front of her house. After a couple of hours of a AAA service guy not  being able to figure out what was wrong with “Mary Pat,” a tow truck was called. Now, my dad gave me “Mary Pat,” which was my mother’s beloved car, after my mom passed away. I adore this car but would be hard pressed to have anything serious go wrong with it, especially since Matt had recently lost his job. No job=No alimony=Totally screwed. When it rains, it pours, right? And we’ve been in Tsunami conditions for a long time now. So, hanging my head low like Charlie Brown getting rejected yet again, Matt drove me home. AAA would come get my car and I would learn of the damage the next day. On the way home, I asked how Matt was doing. He admitted that he was stressed out over losing Justin and losing his job as well as health insurance for him and the kids. Yeah. Super Sucky. Then, somehow, we segued into a topic that neither one of us wants to recognize: the potential loss of our son. We actually agreed on some things that we would want to do. And this was more of a relief than I realized. Not that I’m okay with discussing what I consider to be utter nonsense, but to be able to get painful topics out of the way before they have to be faced head-on, well, it brought me to tears. Pain-filled AND utter relief. I didn’t know that they could co-exist.

It was one of the hardest things I’ve ever had to talk about in my entire life. Matt offered to let me come home with him so I could hang out with the kids just to ease my pain. I declined because I was a crying mess and didn’t want to put the kids through any more stress. I went inside my apartment and hyperventilated for a while until the AAA tow truck guy called. I cringed as I spoke with him, waiting for him to tell me that I was totally screwed and that Mary Pat was officially deceased. Quite the opposite occurred, however. He said, “Sarah, you left your car in DRIVE and that’s why it wouldn’t start. Your car is absolutely fine. I won’t tell anybody what you did.”

I laughed. Hysterically. I think I scared the poor fella. I briefly explained to “Bob” what had happened and that my brain was completely full from the current stressful events in my life. We ended up having a 10 minute therapy session where he confessed that six months ago he had contemplated ending his life. I expressed gratitude that he hadn’t because if it weren’t for him, who on earth would have figured out Mary Pat’s issue? Well, not her issue, but her owner’s issue. We had a great conversation. He wished me luck with everything I’ve been dealing with and told me he’d leave the key under the mat.

Matt brought the kids with him when he came to pick me up. It ended up being okay. Mary Pat was fine. My kids were fine. I would eventually be okay despite having to continue fighting for my son’s life. Yeah, my son has cancer. My daughter is scared. I’m scared. Matt’s scared. We’re broke and unemployed. This life is very, very difficult. But I can wake up tomorrow and sneak a listen to Ben’s beating heart while he’s still sleeping. I can laugh at Madeline’s antics as she tries so hard to bring levity to our scary world. I can appreciate the gifts I have before me, right now, knowing that it can change in a moment’s notice.

It can for any of us. At any time.

Again, not being fatalistic, just being realistic. But still filled with hope that it will all be okay despite the scary diagnosis.

Just like Mary Pat.

 

 

 

I sorted through a basket filled with Lego’s, which all had “Justin” written on them, to find the one that spoke to me. The one I picked was a grey Lego, with his name written in blue ink, followed by a blue heart. The blue ink matched Justin’s beautiful eyes, and the heart, well, it matched my own. I couldn’t believe that I was here to say goodbye to one of my son’s best buddies.

I noticed that Ben immediately stiffened. I think it hit him when we walked in to the church that his friend was truly gone. Now, being a pre-teen, I have no insight to what his emotions really are, but I have no doubt that he was hurting. I think it was all avoidance until the reality of Justin’s service came calling. I have asked him as delicately as possible if this makes him question his own medical journey – which he astutely states that he can’t be compared to any other neuroblastoma case – but how can you not think about that? If even just a little? Regardless, stoic has been a very good descriptor of my Benjamin, until today.

The church was packed. So many family, friends, and fans there to say goodbye to our Ninja Warrior. Ben didn’t want to take part in walking past Justin’s casket but Madeline did. It was the same at my mother’s funeral. Madeline needed the closure on some level but Ben was not comforted by seeing the body laying in state, so he chose to sit on his own and process it without viewing my mother’s body. It was the same today. As Madeline and I passed by Justin’s casket, I reached in and touched him one last time, feeling the cold stiffness that had so offensively taken the warmth away from our friend. Being an adult I felt completely childish in mentally repeating the mantra: “He’s not here, he’s not here, he’s not here, he’s in Heaven” in an attempt to soothe myself from what was before me. I maintained my “mommy mode” and hugged Madeline as we walked past our friend to the finish line of getting to hug Justin’s mommy and daddy.

Lori enveloped both of us at once. Madeline and I were shaking with sobs. Lori said “Yeah, that’s how I feel, too.” How she remained standing was beyond me, as my knees were shaking and threatening to give out. I picked up her hand to kiss it, and noticed that she still had on her hospital bracelet. The one that stated she was Justin’s mommy. His protector. The one who made decisions. The boss. When you enter the hospital with your child, you get one of these unfashionable bracelets. The kiddo gets a white one and the parent gets one that is orange and says “GUARDIAN.” It connects you to your child. And the tug at my heartstrings told me that I would do the very same. I would want every last piece of evidence that connected me to my child.

YOU’RE TAKING HIM AWAY FROM ME! I’M HIS MOMMY! I WANT TO CRAWL IN AND CUDDLE HIM SOME MORE!! I’M NOT READY!!!!

Please. Don’t take my son. But she was left with the cold fact that he was gone. So, the bracelet stood as a simple, yet powerful, reminder that her role would never change. She is and always will be Justin’s mommy, no matter the circumstances. I hope she wears that bracelet until it rots off. I know I would.

When we got to Justin’s daddy, I failed again at having any words to say. The sobs were still happening as he hugged me tight. “Justin’s job is to look after Ben now,” he whispered to me as my sobs grew stronger. Darn it. I was failing at this comforting gig big time. I shook my head with my eyes closed tight so I wouldn’t have to see the pain in his eyes and I wouldn’t reveal the fear in mine. I grabbed Madeline’s hand and walked back to where Ben and Matt were sitting.

While we were waiting for the service to begin, I watched the slide show of Justin flashing on the enormous screen. It was fitting to see him on such a huge screen, because he was truly larger than life! He was such a happy child, full of energy, and honestly, no fear. He enjoyed every darn minute of what was given to him! And boy, was he a dancer! There were several videos of him dancing, namely to “Who Let the Dogs Out.” (Go ahead, sing the woof… woof, woof, woof, woof part!) As we were sitting there waiting, I watched the procession of mourners pass by. One dear friend, Terri, caught my eye and I couldn’t stop watching her. She was there with her husband and three children. As she stood in line, still quite far away from Justin, she looked toward the casket. Her eyebrows furrowed as she started to bite her lip. Then one of her sons turned around and she changed her facial expression to take care of reassuring him in whatever he needed. And as he turned back around, her eyes glanced back toward the casket. Almost as soon as she looked, her eyes shot to the ceiling as if to say, “This is too much.” And the look of pain that shouted “THIS IS NOT FAIR!” nearly sent me over the edge. Her heart was breaking. For Justin being gone. For her friend Lori’s unfathomable loss. For having to set aside her own fears and feelings to comfort her children. For the unfairness of it all. I can’t read minds, but if I had to guess, she wanted answers as to WHY. It’s not fair to put my thoughts into what she might have been thinking… maybe it was just me who wanted to know why. But watching her emotions range from “It’s okay” in an effort to calm her son to “WHY?” hit the nail on the head for me. My mind was running the whole gamut.

Which led me to look down at my own son, quietly sobbing, eyes toward the ceiling in hopes that looking up would make the tears stop. I reached over to smooth his beautifully soft hair and dry his eyes. Then, that crazy kid, he said “I wish I could do something to make this all better. For you. For everyone.” And as the service ended and Madeline was crying her pretty eyes out, Ben moved close to her to hold her hand. He laid his head on her shoulder and comforted her as best as he could. Always the strong one, my Ben. Always my hero.

And before they carried Justin out of the sanctuary, Lori reached out to touch her son one last time. They had already closed the casket but it didn’t matter. She smoothed the surface of what held her son, knowing that that’s where his soft, beautiful head would be. I felt her heart saying “I’m still here, Justin. Mommy’s still here.” He knows you always will be, Lori. We all know you always will be.

I have to mention that the greatest moment of Justin’s service was where Lori invited us all to dance to “Who Let the Dogs Out.” Madeline and I shook our tail feather, but Ben just couldn’t. I’m worried about my kiddo. I know I have to let him grieve in his own way, but I cannot help but be truly concerned with where his head and heart are currently. I know it will require me to put aside my own feelings, fears, and worries, but whatever I have to do, that will be my quest. I so desperately want him to be okay. To get to be a normal boy. Just like Justin always wanted to be.

As we were leaving, Ben went up to Lori to give her a hug. Lori got down on one knee to speak to Ben directly. She held him by the shoulders and with heartfelt love, she told Ben that he was Justin’s hero. Ben folded into her arms as they both cried. Just when I thought I was out of tears, they came flooding back. I hope that Ben can always be an extension of her Justin in some way. I want us to be a good memory for her – although my juvenile mind sometimes wonders if that’s possible. I love her. I don’t want to hurt her. I don’t want our continuation of this cancer battle to hurt her. I don’t want to remind her of the pain. I want to remind her that we LOVED that boy of hers with our entire heart and always will. And that her son paved the way for medical treatments that will hopefully save my Ben from the same fate. Honestly, this is so hard to put into words. The fear, the pain, the agony, the unknown… I just don’t know how to aptly express it without sounding like a total wacko. Too late, I guess.

Anyway, today was beautiful. Today was horrendously sad. Today was more than a goodbye to our Ninja. Today was a gathering of family and friends and Justin fans. We were all there for him but we were all there for each other, too. If we take nothing else from this, we must learn that TODAY IS PRECIOUS! Get out your Ninja gear and fight those important battles yet have enough silliness in your soul to “let the dogs out.”

We owe that to Justin.

 

Dear Justin,

Hey sweetness. Remember me? Ben’s mom? That kooky redhead who showed up at the hospital to see how you were doing? I know, you have better things to do right now than remember me, but I want you to know that I’m remembering you right this minute. In fact, you’ve been so heavy on my heart for the past few days.

I met your mom a long time ago and we formed an instant bond over this ridiculous thing called Neuroblastoma. I wish none of us had ever heard of that nasty word, but if I had to find one good thing about it, I would say that it brought me in contact with some pretty amazing people – namely you and your mom. Having a son close in age to you, I knew that you’d be fast friends despite the differences: Ben’s quiet and serious nature versus your vivacious outspokenness. I think “LEGO’s” was all it took to solidify your companionship.

I was honored to watch you grow over the years, and my heart broke every time you had any sort of set back. See, our mommy hearts feel very deeply for suffering children, no matter who the child belongs to. Your mommy’s heart felt for my Ben and my mommy heart felt for you. You had SO MANY mommy hearts pulling for you… I know you felt all that love!  And it was our pleasure to give unconditionally.

I love your spunk. I love your determination. I love your ninja nature. You were an AMAZING spokesperson for so many wonderful charities. You raised awareness! You brought neuroblastoma to the attention of many! For crying out loud, if you Google “Justin Miller”, you’ll get a glimpse of the mighty work you accomplished in your all-too-brief life! But here’s my favorite memory of you: At the AVS Better Halves fashion show in 2007 (I think), you had a head full of curly hair and the most adorable expression on your face when you walked out on the catwalk. Actually, you didn’t walk. You bounced! You were so full of energy and excitement… the entire audience went nuts. When they introduced you, the description of what you had been through medically was exactly the same as my Benjamin. Yet, here you were, full of life and putting on a show. You had a way of drawing people in, Justin. And so many loved you! I can tell you, the world is truly shocked by the news of your passing. None of us will ever be the same.

And here’s where I don’t know where to go. Oh, Justin. Everyone’s talking about angel wings and heaven and all the things that are said when a precious child – like yourself – leaves the rest of us behind. It’s no secret that I am severely struggling with my faith – especially right now. I don’t understand. I am angry. I’m devastated. I’ve cried and screamed and pounded my fists and it just doesn’t make sense that you are gone. And I had to tell my sweet children that their dear friend had passed away. Here’s how that went: Madeline cried. A lot. I think she’s not only sad about losing you, but she’s also afraid that she might lose her brother. Ben cried, too, but he is grateful that you are no longer in pain. A pain that he truly understands. I’m sad that you had that in common, but if anyone knows, it’s Ben. He was in awe of you, my friend, and just didn’t understand why you chose him as your hero. Ever humble, that kid of mine. But intensely feeling. And proud to be your hero, but more importantly, just to call you friend. And as we were holding each other yesterday, crying over the news that you had just passed away, he said, “I love him so much.” I do, too, kiddo. I do, too. And we know you’re in Heaven. I believe in such a place despite my shaky faith. You know why? Because Ben told me so. I think he has an insight to such things that my adult mind just can’t fathom. And he says he sees you there… no pain… and surrounded with lots of Legos.

I’m worried about your mom, Justin. Of course I’m worried about your daddy and sisters, too, but being a mom to an NB warrior myself, I know more about where her heart is. She dedicated all she had to you and your sisters. The meds, the procedures, the care, the vigils, the frustration, the worry, and now, the severe grief. It’s been all-consuming for so very long. Now, I can only imagine, but I would think that this horrendous void will throw her into a tail spin. Not just the grief of losing her precious darling, but that it has all of a sudden stopped. No more hospital. No more travel. No more meds. No more. That was your life for so long. I don’t have any special insight here, but I do know that the first time that Ben was said to have no evidence of disease, our schedule drastically changed. And I failed at moving away from the hectic life-style that I was so used to. I felt I had a purpose in a constant schedule, and then, there was nothing. With this change, dear Justin, she doesn’t have the option to sit back and relax with this reduced schedule. Her whole world has just imploded. I know she would give anything to have you back, to return to the schedule of caring for you and holding vigils, just to have more time with you.

So, I will check on your dear mommy as much as she’ll allow. I’ll be sure to stick around when the numbness wears off and she’s left with the excruciating pain. I know your mommy has lots of friends – after all, it’s so easy to love her – but I hope she knows that I’m here for her. I’m not perfect and I have absolutely no answers, but my mommy heart will love her mommy heart forever. There’s a piece of us that “gets” each other and I know I appreciate that bond immensely.

As for you, dear Justin, We’ll all remember you fondly. You have touched thousands of lives, and changed so many people, for the better.

And how cool is that?

With so much love, light, and as much peace as my aching heart can muster,

Ben’s mommy

The sky was remarkable as I was pulling on my shoes to rush out the door to Children’s Hospital. Dusk was quickly approaching so I knew what I was seeing would be extremely brief, but at least it distracted me from thinking about Ben’s buddy, Justin, lying in PICU fighting for his life. I peered through my tiny window that faces the toll-road, in total awe. If my apartment sat just a few feet higher, I’d see the traffic passing by instead of the multi-colored wall of dirt that was literally glowing gold thanks to the setting sun. I’ve never seen dirt look so pretty – unless you count the neighbors of my childhood getting gussied up for a late-summer festival. Just kidding. Kinda.

I’d been experiencing the sleep of the dead when my phone started blowing up. “Have you heard?” “Did you see the update?” “Are you going to the hospital?” It didn’t take me long to assume that they were speaking of Ben’s good buddy, Justin. And then as I started to research to be sure, my fears were confirmed. Justin had been moved to PICU with the inability to fight off pneumonia. Since my children were with their father for the weekend, going to the hospital to offer my support in whatever way I could seemed to be the most logical answer.

I picked up my friend and headed over. We nervously chatted about anything, trying to keep it together, since we were headed to the hospital to be a support – not a weepy mess. “Did you see the sky?” she asked. I was glad to learn that it wasn’t just my mind playing tricks on me. We talked about that for a while instead of the night that laid before us.

Most of you know what happened while we were at the hospital last week. Justin’s doctors kept fighting despite his heart’s two attempts to stop. It is often not the cancer itself that kills the fighters, it is some stupid side effect from treatment. Accomplices. Vultures. So cancer can keep its own rap sheet alarmingly limited with charges, while nonsense like pneumonia moves in to do the dirty work. And, with as long as cancer has been bullying Justin, he was right where these scavengers wanted him. He was so very tired. But the rest of us weren’t ready to let him go, including his doctors. They fought all night.

I left at 2 am. I didn’t get to see Justin because the visitation list was very limited. Besides, I knew what he looked like and that’s how he’ll always be in my mind. But what bothered me was not being able to see Lori. I haven’t done the ICU thing very often with my son, but when I did, I know how wonderful a loving hand on my shoulder felt. The times that my son was passed out from pain or ridiculous amounts of medication or the after-effects of surgery, it was nice to know that someone was trying to take away a bit of my pain, because it was so overwhelming to see my son in such a state. I couldn’t imagine what Lori’s heart was experiencing because, thankfully, our journey with Neuroblastoma hadn’t taken us down this particular road. But I ached with not being able to simply put my hand on her shoulder.

At one point, I moved into an empty waiting room while most supporters had stationed themselves right outside the PICU door, waiting for any scrap of information that would come their way. Once alone, I sat on the familiar plastic couch, staring at the floor, trying to wrap my head around what was happening. Even my trusty defense mechanisms didn’t know what to do. Then I looked up to see one of the hospital wagons filled with Justin’s belongings. Two of the ladies who had been waiting went up to the oncology floor to clear out Justin’s room since he’d been moved to PICU. Lori didn’t have time for that. She was in fighting for her son. So, it warmed my heart that a) someone else did that for her, and b) to see things that Justin had collected over this most recent hospital stay. But the thing that touched me the most was seeing his super cool green jacket hanging on the IV pole of the wagon. I’d seen him in this jacket a number of times. It was too big. It dwarfed his 10-year-old frame. And I’d mentioned that it was a super cool green jacket directly to him. He didn’t care about my opinion… and I was simply trying to make conversation. But the important part of our visit was that I was letting Ben and Justin communicate in their favorite way – through video games. And as I watched two boys try to avoid the very real hell that laid before them, my best attempt at communication was to mention how cool his jacket was. So, to see this jacket without Justin in it was what broke me. At that point in the evening, even the doctors were saying that the odds of Justin making it through the night were not strong.

He wasn’t going to get to grow into that jacket.

That’s what solidified the situation in my mind. And it was at that point, all alone in a waiting room with Justin’s green jacket, that I finally felt the numbness that had overtaken my system.

Now, eight days later, we all know that Justin has hung on for another week. He’s had some progress, which was eradicated by some major steps back. And the rumor continues to be that Justin will most likely not survive this. Logically, I know this, but my heart hasn’t accepted it fully.

And, like so many other times, I’ve learned that life is so precious and have been reminded – harshly – that finding the joy is so very important. Despite real life getting in the way, I’m finding ways to celebrate the little things. Hug my children a little longer. Smell the snow-laden air a little bit deeper. Allow myself to cry over the severe losses. And not take anymore shit, which will undoubtedly change next week. I always take other people’s shit. It’s kinda my thing.

Don’t miss the moments that today has afforded you, dear friends. You might not get the opportunity to grow into it. Wear it anyway. Wear it proudly, despite the imperfect fit. Enjoy it. Embrace it.

This moment is so very precious, even if it sucks.

 

 

 

There are times when people utter this phrase to me and my immediate reaction is to visualize punching them in the throat. My overly active imagination allows me to envision their facial counteraction as my knuckles make contact with their trachea, the surprise mixed with an onslaught of pain. I stand back, cross my arms over my chest, and smirk as I give them a dose of my world famous cynicism: “What was the reason for THAT, (insert expletive.)” Fortunately, what happens in my head is rarely out loud, and my actions are way less violent than this scenario might imply. I’m just not that kind of gangsta, regardless of what my rap sheet might state.

But, in reality, there are a few things that I can agree with that happen for a reason.

Two nights ago, I took my son to see the Colorado Avalanche play. I had procured tickets from a generous AVS fan (I met her in a FaceBook AVS fans group) who had some tickets to spare. They were in a higher section of the arena, but I am not one to complain. Any AVS game is a good game, regardless of where the seats are located. When Ben and I walked into the Pepsi Center, we saw a gentleman who (or is it whom? I never remember how that works) I recognized from a variety of hospital organized AVS events. I walked up to him and said “hello.” He recognized Ben and asked where we were sitting. I showed him our tickets, which prompted him to upgrade us to a suite. Well, who am I to turn that down? I honestly cried. Ben held my hand as we exchanged excited glances… we took the escalator to the coveted “special” floor where the club level and fancy people play. We found our suite and were greeted with sodas and nachos. The game was incredible… we won 4-3 in a tense overtime showdown, but that’s not what made it amazing. Ben, who usually loses himself on his phone or in a video game, watched the entire game. He was genuinely excited. He jumped up and down when we scored, he yelled for the players to get control of the puck… he was really into it. I’ve seen this phenomenon a couple of times, but this event was so special. He would occasionally look at me exuding an “Isn’t this GREAT?” expression. It was the second time I got teary at the same hockey game.

I want to mention here that we did not blow off our new friend who granted us the original tickets, we took her some nachos and thanked her for her generosity. Ben even gave her a hug. 🙂 She was understanding of us taking advantage of a “suite” opportunity.

And, like I said, our AVS won, but it was really my heart that won because my Ben said to me as we were exiting the arena, “This has been one of the greatest nights of my life.” And yes, I got teary-eyed a third time.

Now, as a child going through years of ridiculous amounts of horrible therapy, you might think that it would be easy to please Ben. I think it’s the opposite. He is plied with fun opportunities on a regular basis. Some of them are offered through the hospital or charitable organizations and some of them are just mom thinking “I’ve got to make up for all this baloney you’ve been going through, so let’s do something fun!” And, I’ll admit, sometimes that looks like Clark Griswold on his pilgrimage to Wally World, DEMANDING that his family have FUN. See the movie “Vacation” if you do not understand this reference. So, for this glorious event to unfold with minimal planning on my part – just accepting what came our way – THOSE things happened for a reason.

This, I’ve decided, is how it has to be. I worry too much. I look at the future and demand my feeble mind to make sense of stuff that hasn’t even happened yet. You would think that a woman in my situation would completely lose herself in RIGHT NOW. Appreciate the moment. Sometimes I do, but normally I fixate on what’s going to happen tomorrow. Or the next day. Or the next. Which is completely out of my control.

And the funny thing about that is that over the last 10 years, I’ve realized that I don’t have the ability to plan like most people. I know a lot of type A personalities who HAVE to have a plan. Who HAVE to have an agenda. My life doesn’t afford that sort of luxury. But what I haven’t realized or appreciated to its fullest extent, is that I do, really and truly, have to appreciate what’s happening right at this moment. Life is going to unfold despite what I have planned.

Instead of worrying so much, I’m going to try to just let life happen. When I was skiing yesterday (which was absolutely fantastic, BTW) I noticed that I got caught up when I saw icy spots. I would immediately slow down and make the icy bits worse, trying to stop in the middle of the ice instead of just hauling ass right over the icy bit and moving on as quickly as possible. The ice definitely had the ability to trip me up, and if I thought about it too much, it made it worse. But as the day wore on, I found that if I just recognized that it was there and tried to avoid it, it worked out better for me. And for the times that I hit it, I just kept going. It was scary for a second, but I found that my balance carried me through instead of becoming paralyzed with the fear of falling. I did fall once, and guess what? I got right back up and kept going. I bitched about it for a few seconds, but ultimately, it was not a big deal.

I know. I’m a genius. But when I have moments of realization, I have to grab them. My life isn’t easy, and I’ve advanced to a level where there’s lots of icy spots (I’m referencing Ben’s video games here.) But despite my advanced level where things just get harder, that simply means that I have to be more nimble.

I can navigate this nonsense. I’ve had lots of practice and it’s getting better all the time.

Even when it’s worse.

 

“Why are we in this room?” Ben’s wary voice wavered. He froze solid as his big brown eyes scanned the perimeter of his surroundings – as if he were searching the room for secret ninjas. He slowly tucked his trusty DS under his arm as he looked around, his head absolutely still but his eyes pivoting as his brain reeled. His expression was heartbreaking. It was suspicion mixed with dread mixed with “Oh, Crap. Here we go again.”

We were in a bad news room.

It’s no secret that the oncology floor is seeing increased traffic these days. More children are getting diagnosed with cancers and undergoing wicked treatments in order to save their lives. The waiting room is nearly always crammed full of children trying to be children despite their circumstances, while their families sit on plastic chairs in various stages of mental anguish. It’s hard to say why there’s such an influx of childhood cancer. Maybe it’s our environment (which is what I believe.) Maybe it’s the food the FDA has wrongfully approved. Maybe it’s solely genetic and we should stop breeding immediately. Maybe it’s God’s punishment. He said He’d never flood the earth again but He never promised He wouldn’t wipe us out with cancer. I don’t know the answer. Heck. I don’t even know how I’m going to make it through today.

But I knew we weren’t getting bad news. At least, not today. It was simply an unfortunate fact that all the other rooms were being used. We had to wait somewhere. Even though I explained it to Ben, he wasn’t convinced. As his body tensed with mistrust, he continued to search for those secret ninjas as he slowly perched on yet another piece of plastic furniture. He gave the room one last dubious scan as he slowly opened his DS to free his mind. Within seconds, he had delved into whatever world was flashing across the screen of his DS, forgetting all about the bad news room.

We’ve been conditioned like Pavlov’s dogs. Certain sounds, smells, locales, will throw us into tail spins, making us salivate for the lives we thought we signed up for. Oh, a “normal life” makes our hearts ache for places where bad news rooms don’t exist. I know that everyone has to spend a little time in a bad news room once in a while, but it’s simply not acceptable to sign a lease on one of these joints. The rent is too high and the amenities suck.

People have said that we’re lucky we get to meet sports heroes and go on a wish trip and get all sorts of swag. But if you’ve spent extended amounts of time in a bad news room, then you’d understand that there’s no luck to it at all. It’s simply a distraction from reality. “Sorry you’re getting all this bad news but LOOK OVER HERE! I’ll give you a present in exchange for this hellish experience.”

No, I’ll take the world where bad news rooms are an occasional risk and regular life resumes shortly thereafter. Bad news rooms should be the length of a commercial, not a long-running series. I’ll opt for the environment that doesn’t make my adrenaline flow with the dread of “Oh, shit.” I’ll trade places with my son if it means he gets to move out of this bad news room and live happily ever after.

Did you hear that, God? I’ll take his place. I will. Willingly. If it means he can grow up and bless this world with his wonderfulness, I’ll do it without a shred of reluctance. He has so much to offer this world. And it’s clear that my job was to get him here so he can spread his wonderfulness, so my job is done. And I’m not insured so my battle will be short-lived. I cannot afford the treatment. I’ll go quietly.

I know my pleas reverberate off the stark walls of a bad news room. I know the echoes bounce around and fall on ears that aren’t able to hear. I feel the knowing hand on my shoulder of those who are sorry but can’t do anything more to help. And it breaks my heart that I’m put in the position of doing the same thing to my son. My sorry hand rubbing his back, knowing how much it hurts but completely unable to do anything about it.

I wish I could pull a “Hunger Games” and volunteer as tribute. Let me navigate this bad news room.

I’ll do anything to spare my son.

 

 

 

Ten years ago this week, we were on the hunt for the perfect Christmas tree. The search party consisted of Matt, a two-and-a-half-year-old Ben, and a five-months-pregnant me. We weren’t trekking through the Wilderness on our search – kinda hard to do in Dublin, Ohio – but it was a pretty popular tree lot, laden with rows and rows of trees. The day was overcast and the chill in the air was a definite harbinger of snow. Matt was off on his own while Ben and I half-heartedly looked at the trees. He was more interested in weaving in and out of the rows, and I was following along to make sure he didn’t wander off or slip on the icy snow pack.

“Ooooh! Smell the trees, Ben!” We put our noses toward the sky and inhaled sharply, trying to strip the balsam out of the air. I don’t think Ben appreciated it as much as I did, but it was cute to see him emulate my sniffing. This age was my favorite yet. I went into this parenting gig without any indication of how these little people-thingies worked. The newborn phase was freaky. The first year of reaching milestones, like rolling over and sitting up, was pretty cool. But this phase of all-encompassing wonder was just so awesome. I loved watching my little Bean discover things. I had to admit that I was really nervous about starting over with a whole new little person, but if he or she (I like the surprise aspect of hearing the gender upon birth) would be anything like Ben, then I was up for doing it again.

Ben limped back to me and raised his arms up high. “Hold me, mommy.” There’s that damn limp again. Of course, he never exhibits said limp when we’re at the pediatrician. I grunted as I hoisted him up, groaning at the beginnings of back pain. He snuggled into me as he laid his head on my shoulder. Instinctively, I swayed back and forth, attempting to comfort my son. But while some things – like swaying – came naturally, so many other things didn’t. I had reached the point where I was taking him to Urgent Care for all the weird symptoms. The easily dismissed indicators of a common virus. A case of constipation. A possible hip infection. No real tests were being run because the evidence just didn’t seem that damning. And, of course, I was an overly protective first-time mom with hormonal issues caused by this second pregnancy. Everyone thought I was just being a nervous, first-time parent.

I knew Ben was hurting and I took him to the doctor all the time. Why won’t this runny nose go away? Why does he have this constant low-grade fever? Why doesn’t he want to eat anything? We had tried everything to get him to eat. He liked spaghetti. He liked bread. But even presenting him with his favorites was not a guarantee that he would eat. “He’ll eat when he gets hungry. Don’t make special allowances. You’re doing it wrong.” Everyone had an opinion on how to solve it. Everyone had an opinion based on their expertise. I regret that I turned to everyone else for advice and didn’t follow my own instincts.

I knew deep in my heart that something was really wrong.

And, of course, when he was diagnosed with a very horrible cancer, the variety of ailments all made sense. He was misdiagnosed for a long time, though. And I feel very guilty about that. Would he still be battling 10 years later if I had been more persistent? Maybe they would have caught it earlier. Maybe he would have lost his hair only one time. Maybe he would have forgotten all of that initial therapy – 15 months of hell – because he was just a toddler. I know I shouldn’t play the “what if” game because it’s a game that nobody wins. It happened and nothing on this earth can change that. “You should sue the pediatrician. Why didn’t you make them do more tests? You’re doing it wrong.” Everyone had an opinion on how to solve it. And this time, I told them all to piss off. Well, not really verbally, but I just quit sharing my feelings with all of them.

But the time leading up to it, before we knew about a horrible disease named Neuroblastoma, things were kinda normal. Here we were looking for a tree. Playing amongst the rows of sweet-smelling pine. Watching him toddle about, cautiously reaching out to touch things with his curious fingers. And then retreating to his mommy when he just didn’t feel good.

I’m mad at cancer for hiding in my son that Christmas 10 years ago. I’m mad that all the Thomas the Tank Engine toys were opened but not played with because cancer had exhausted him – even though we thought he was just overwhelmed with all the excitement that Christmas morning brings.

I guess looking for that tree was really my first realization that something was really and truly wrong with Ben. I let it slide for two more months because I listened to everyone else. And I’m sitting here ten years later dreading putting up my freaking tree because somehow I link the two together. I can usually deflect these emotions with a healthy dose of cynicism but this anniversary is getting the better of me.

Ten years. A decade. Nearly a quarter of my life. Nearly 5/6 of Ben’s life. And the entirety of Madeline’s life. It’s taken too much. But, it hasn’t taken everything. My sweet Ben is still here.

And there’s my silver lining. Right?

 

 

She stepped into the elevator directly after we did, a bible in one hand and a cell phone in the other. Her bright blue t-shirt shouting HAPPY! HAPPY! HAPPY! in multi-colored letters. I wasn’t sure if her shirt’s message was meant for me or a reminder for her. We were in a children’s hospital, after all, and this could be a damning place in which to be happy.

My daughter was laughing over the names we had just made up for ourselves, names that couldn’t be spelled with letters – they were simply sounds. How do you spell that farting noise that you make with your mouth? Or the loud, popping noise that emanates from your lips? We giggled as we “called” each other by our new noisy names as I watched the HAPPY! HAPPY! HAPPY! lady from the corner of my eye. Her breath kept catching as she attempted to squelch her tears. She was holding it together pretty well, as I think I was the only one in the crowded elevator who noticed she was struggling. She anxiously tapped her long, manicured nail against her bible as she tried to distract herself from breaking down entirely.

I make it a habit to note which floor people are going to so I can know a little bit about their backstory. Understand this: I’m just nosy when it comes down to it. Anyway, the second floor is the surgical unit. Seventh floor is the Center for Cancer and Blood Disorders (AKA Ben’s floor.) HAPPY! was headed to the eighth floor, which is generally dedicated to patients with a variety of ailments but usually have a shorter stay. This woman’s story could be anything. I didn’t know what to do about her threatening tears, so I did nothing at all. We bailed out at the seventh floor to tend to our own sad story, leaving HAPPY! on her own.

We were heading to clinic for blood work and then we were going to visit our good friend, Justin, who was inpatient. After we finished our business in the clinic, we headed down the hall to see Ben’s good buddy. There are two wings on the seventh floor for patients. One side is like most other floors but the side Justin was on was for the bone marrow transplant kids. You have to wash your hands for an hour before heading in. Oh, okay, maybe not that long, but there are more steps to take before entering this unit. Ben hid his phone in his pants while Madeline and I put our stuff in a locker. Really, you’re not supposed to take anything in that isn’t scrubbed down and I didn’t know that Ben was sneaking in contraband until we got to Justin’s room.

Before knocking on his door, I put on my “HEY! LIFE IS AWESOME!” face, while Madeline was secretly wondering if she was going to have to go back to school and Ben was frozen like a rock. The soft knock on the door prompted Lori to tell us to come in. At first glance, Justin looked great. He was laying in bed with all sorts of monitors attached to him. At some point, he was going to be receiving an infusion of precious stem cells to help his body heal from all the treatment he’s had to endure over the last eight years. But I could tell despite physically looking okay he wasn’t emotionally thrilled to be stuck in the hospital again.

Justin and Ben chatted for a few minutes while Madeline stuck to me like glue. This poor child has been raised in a hospital setting, so I don’t think it’s an uncomfortable feeling she had about the environment. I believe she has an innate ability to understand when things aren’t quite right. And I believe she understood that our dear friend is fighting his biggest battle yet. Usually, Ben and Justin will chat for a while about Legos and video games – the two things that our kids are experts at because that’s all they can do in the hospital. But today, Justin wasn’t up to it. He seemed cranky. He seemed mad. Actually, I believe the better word is “pissed.” He didn’t want to chat much. He didn’t want visitors. He just wanted to be left alone. Ben retreated to a corner to play on his phone.

We didn’t stay long. Lori swore she didn’t need anything, but at that moment I just wanted to give her something. The fifty-seven cents I had in my pocket. The ability to browbeat a doctor into finding a cure immediately while holding him over a toilet bowl threatening to give him another swirly. To whisk her away to a private island I bought for her… a place where cancer couldn’t get to her son. Or, more realistically, to hold her as she simply broke down. But I knew she wouldn’t do that. Not in front of Justin, anyway.

As we were walking down the hall toward the elevators, I dared Madeline to press her nose against the glass of a door where a bunch of important people were having a meeting. She considered it but didn’t take me up on it. I started to cry a little because I thought that her silliness would somehow make my heart not break. Oh, dear God! When will this end? And can it please end without another child having to die?

I don’t know how to stop the hurt.

And as we pushed the button and laid our bets on which of the four elevators would arrive first, I wondered about “Happy.” I hoped that this was just a brief encounter for her, that her child would get out soon and they’d never have to come back. And even though I wished that normalcy for her, I couldn’t help but be just a little bit jealous.

We’ve been dealt an impossible task. And I’ve spent almost the last year of my life doing two things: taking care of my children and hiding from the rest of the world. My computer gives me an outlet to share my feelings or to be “social” but the reality of it is that I’m hiding here, wishing for something that will never come.

I haven’t lost hope but I understand that we have already lost so much.

 

 

 

 

*** I didn’t expect this to stretch into so many entries… thank you for your patience. I think this is the last of it. Whew.

 

It was after lunch when I finally made it back to the pod. I’d had the shackles on for hours at that point and all I wanted to do was hurry up and get released. Unfortunately, there is no “hurry up” in this environment. I rubbed my wrists as I stumbled through the heavy door, still having phantom pains of the recently removed shackles around my ankles.

I looked up at the TV and noted that “Everyone Loves Raymond” was on. Benign enough, I guess, but there was no sound so I didn’t see any reason to sit out in the common area with my fellow pod-mates. I retreated to my empty cell, wondering where Shona and Cricket were, and decided to take advantage of the “alone time” to use the toilet thingy. I shut my cell door. I didn’t know that you weren’t supposed to do that, despite pouring through the Standard Jail Practices brochure earlier that morning. An alarm went off, which scared the poo out of me. One guard stood watch outside my cell, which I presume was to make sure I wasn’t going to commit suicide with my towel – all seven inches of the ratty terry cloth it was – or stab myself with the toothbrush that I’d scraped against the cinderblock trying to make a pair of tweezers. I stood motionless right by the door – no alarm causing here – until another guard got clearance to open the cell door.

“Don’t close the door again, Brewer.”

Duh.

It was about 2 pm when the guard called me to prepare for release. I walked out of my cell like a little kid ready for Christmas morning. I’d been counting down on my hourly Jail Advent calendar and now it was almost here! “Is it time for release yet? Can I go? Now? NOW? NOW????” My patience was wearing as thin as my jail issued towel. Just then, an alarm went off, red lights flashing and incessant buzzing scalding my ears. With wide eyes, I looked at my guard. “What’s that?” I asked. Without giving me a second look, she screamed out to my fellow pod-mates, “LOCKDOWN!” Everyone began heading toward their cells and doors started sliding shut. “What the…, WAIT! NO! I’m supposed to get out now!” Tears threatened to spill over as I looked around for someone else to help me. There had to be a manager around, right? This is simply not good customer service. Oh, crap. I forgot. I’m in jail.

I begrudgingly headed for my cell. Shona and Cricket were already laying down so I climbed up to my treehouse. A thin sliver of bright sunlight streamed through my tiny window. I craned my neck in hopes of catching a glimpse of the outside to still my racing heart from bursting. I don’t know that I’ve felt disappointment so severely. The sobs took over as I unwillingly broke down. The girls just let me do my thing without saying a word.

I think I fell asleep.

About two hours later, the cell doors reopened but I didn’t get up. I don’t know what happened to cause the lockdown but I was terribly curious as to what was so freaking important that I wasn’t released at 2 pm. This whole jail thing had really messed up my schedule. And, even more depressing, was whatever had caused the lockdown was now stalling all releases. About 20 minutes after our doors reopened, a crackling announcement came over the intercom, “Ladies, there will be NO RUNNING. That being said, the library cart is here.” The moment the voice disappeared from the loudspeaker, I heard the extreme silence of the pod turn into nothing short of a stampede of Serengeti proportions. Women were trampling each other to get to the book cart before I even had the sense to think. “Shit! I’m going to miss all the good books!” Adrenaline pushed me over the edge of the bunk bed, jumping like a cougar out of a tree instead of using the rungs to climb down safely. And like a kid who’s trying to run without running, I fast-walked with my arms straight down by my sides. Run two steps, walk three… almost…to…the…cart. Women were picking over the books like vultures over a carcass. I stood on the outer circle, waiting my turn, when I saw a Nora Roberts book that I’d already read before. I carefully reached over the heads of the other ladies crouching before the cart and plucked the book off the shelf. Unfortunately, my fingers did not get a good grip and the book fell on one of the ladies’ heads.

My verbal response was, “I’m sorry! I’m sorry! I’m sorry!” as opposed to what was going through my mind, which was “Oh Sh*T! Oh Sh*T! I’m going to get killed!” My pod-mate was clearly unhappy about the mishap, but after her penetrating glare burned a hole through my soul, she turned back around to find herself a book. I took Nora Roberts and did the “run-walk” thing back to my cell. Oh, SWEET RELIEF! I can lose myself in this book instead of sobbing on my crappy plastic mattress! Huzzah! I climbed up to my bunk with Nora’s tome under my arm. I stretched out, crossed my legs and sighed as I opened the thick book to the first page. It was, so far, my happiest jail moment.

I was two paragraphs in when the guard screamed “BREWER! Time to go!” At first I groaned, “Are you joking? I just started reading this!” But then I realized that I was in jail for crying out loud, and I better get out while the gettin’s good. Shona was going to be released at the same time, so we grabbed our buckets. Shona bequeathed her roll of toilet paper to Cricket, so I did the same. It felt good to give. Cricket asked if we would make a phone call for her when we got out. I told her that I didn’t have a phone. Shona said she would gladly make any call Cricket needed. She wrote down a few numbers and then we left. Shona grabbed my hand as we walked out. It was the closest lesbian experience I had while in the joint.

The process of getting out was long. When I finally changed out of my blue jumpsuit and into my own yoga pants (size M) I asked the person running wardrobe if there were any shoes I could have since I was brought in without some. He looked around and found a pair of dingy tennis shoes, size 10, that I could have. I’m a size seven.

Grateful to have something on my feet, I climbed the long set of stairs to freedom in my clown shoes. It was six pm. Shona was waiting at the top for me. She wrapped her jacket around my shoulders and handed me her cell phone. “Make as many calls as you need.” With the weeping threatening to begin again, I made some calls. My bf let me know that my friend was going to pick me up in a few minutes. I wept with relief. When I handed the phone back to Shona, she told me that she would take me anywhere I wanted to go. I let her know that my ride was on her way. Shona then told me to keep the jacket. My heart warmed at her display of incredible kindness. And as my friend pulled up, Shona and I waved goodbye to each other. And that was that.

I couldn’t go home so my friend took me to her house. She was kind enough to offer me a fresh set of clothes, food, a place to sleep, and a SHOWER. I stayed in the shower for a long, long time. I think I wash/rinse/repeated at least five times before my skin threatened to fall off. Then I crawled into bed, turned on the DIY channel, and fell asleep.

The next morning, I’d heard that Matt had posted on facebook that he had to have me arrested… the stories that were getting back to me were wild. I was sure that he’d involved the school in some manner, so I decided to go face that right off the bat. Besides, I needed to see my kids. I stopped by the counselor’s office and had a nice, long chat with her. I explained what really happened and offered to show her the police report. I was ashamed even though I had no real reason to be. When it came right down to it, everyone was so supportive. I learned quickly that most everyone felt this was totally bogus, and they were ultimately embarrassed that he had dragged them into our personal issues in trying to get everyone to side with him. I had a constant barrage of people telling me that they “had my back.”

But the moment that was most difficult was waiting by the door for Ben to come in from recess. His last moment with me was watching me get hauled away by the police. And then he spent 36 hours in his dad’s care hearing God only knows what. But when he saw me, he ran into my arms and started crying. “You’re home! You’re home!” he exclaimed. Yes, love. And nothing will ever keep me away from you again. It was the same with Madeline. She hugged me hard, fighting back the tears. “I know you didn’t do anything wrong, Mommy. Why did the cops take you away?” I couldn’t explain it to her. I could only say that mommy and daddy had a lot to sort through and how sorry I was that she had to see that.

For nearly two weeks, I stayed with my friend. There was a restraining order that forbade Matt and I to be anywhere near each other. I saw the kids every day while they were at school. Then Matt was forced to move out of the house and I got to go home on Halloween. It was one of the best days of my life.

The experience has stung for the past two years. It gave people something to talk about for a while. And one of the people who were supposedly “appalled” by my actions had the audacity to call me – behind her deadbeat husband’s back – and ask how hard it was to get a divorce. She’s not allowed to publicly admire me but I know that she secretly does.

I’m a legend. I am a badass (despite crying in front of other inmates 😉 )

And I’m a survivor.

 

 

*If you’re a loyal reader, you know this is one in a series of posts on my jail experience in 2011. If you’re new, well, go grab a snack and enjoy the last four posts on this blog.

A female guard stood by the cell door and screamed “BREWER!” Dammit. I was getting really tired of guards yelling out the surname that tied me to the person who had me thrown in this hell hole. I scooted off my bunk and shuffled out to the common area where the guard was screaming out a list of names of those heading to court. I sat down next to an inmate in orange (remember, orange=felony) as she leaned over to roll down her socks. She looked up at me and said, “You should do this, too, because the shackles f*cking hurt.” I can’t even begin to imagine the look that was on my face because it was a mixture of being grateful and of pure terror. I was appreciating all the inmates rallying together to make sure I had the information I needed but terrified to learn that I had to be shackled before heading to court.  I rolled down my socks to make as many layers between my delicate skin and the cold, unforgiving metal as I could.

The screaming guard separated us into colors (misdemeanor blues were last and I was at the very end of that line) and led us out into the hall while giving us a list of no’s: NO talking. NO touching. NO extra movement. If you had a wedgie? Too bad. DON’T pick it. Line up and put your nose and hands against the wall. I closed my eyes tight as I gingerly touched the very tip of my nose to the frigid cinderblock, hands high above my head, and waited my turn for what had to be the ultimate humiliation.

All I could do was listen as the other inmates were bound, the chains clanging against the floor and the systematic zips and clicks as the shackles were placed. I thought about starting to cry but decided against it. When it was my turn, the guard leaned down to affix the cuffs to my legs. Boy, they were tight. I was appreciative of my orange jump-suited colleague for her socks suggestion. The guard wasn’t exactly gentle in her handling of my princess-y self, each time she tightened anything my nose banged against the wall. I tried to move away only to have her yell at me. Then she instructed me to turn around so she could attach the handcuffs. Now, I’ve played Chinese jump rope and I’ve even won a three-legged race before but NEVER have I had such limited range of motion. I nearly tripped on turning around, and as the guard caught me from taking a header, she asked “New at this?” I shook my head yes as she righted me back to standing erect. She gave me a semi-sympathetic look as she affixed the handcuffs, which were tighter than the ankle cuffs – if that’s possible. I could feel my nose running as the threat of tears loomed closer. She wiped my nose with a tissue, and as she pulled it away, I was horrified by the sight of my own blood.

The guards yelled at us to stay in a single file line as we were led to another hallway. I immediately panicked because I had no idea how to walk in these shackle-thingies. At first, I thought it was best to shuffle. Keep my feet on the ground and go just as far as the chains would let me. But each stride, no matter how minuscule, left me groaning in pain over the intense pressure on my ankles. Fortunately, we stopped to pick up some more inmates. I remained at the back of the line, standing as still as possible to prevent any rubbing on my ankles. As soon as the new inmates were placed in our line we were off again. I decided to experiment with my gait. I did a sideways slide. I tried a tippy-toe approach. I even tried hopping, which was by far the hardest. Each jump sent my chains a-clangin’ and the pain in my ankles, while different, was still excruciating. But I fell further and further behind, which prompted the guard who gave me a bloody nose to scream “Keep up, BREWER!” Never have I been so sick of that name. So, I did a combination of hopping, sliding, tiptoeing, and, inevitably, tripping, until we got to the courtroom.

And if I had thought that my shackled journey down the hallway was humiliating, I had no idea what was coming. I entered into the brightly lit courtroom to see many people waiting their turn to be heard. The guards led us up to the jury box so we could sit down, but getting up the steps was a challenge I wasn’t ready for, especially since I caught sight of my ex in the courtroom with his attorney. I think I navigated those steps and endured the pain of the shackles simply on the power of sheer hate. I tried my hardest not to look at him, but when I did catch a glimpse, he seemed to be enjoying seeing me in my criminal state. Even if I did have a frying pan and the opportunity to clock him one upside the head, my shackles would have been too great of a hinderance. It wasn’t a very fulfilling fantasy.

I wiped my nose against the shoulder of my blue jumpsuit, happy to see that the bleeding was minimal. Harry B, my attorney, came over and said hello. He told me to not worry, that the DA had looked at my case already and asked “Are you joking? Is this for real?” So, it was highly likely that I’d be getting out today. I breathed a sigh of relief as he asked if my nose was okay. I shook it off, feeling the hardened criminal in me solidify a bit more. “I’m fine.” Then Harry said, “I’ll be right back. And by the way, do not look at that piece of shit.” I giggled a little (because, with his accent, the way he said “shit” was just too cute) and turned to chat with my neighbor. She had been in the holding cell with me the night before. Her story was that she was in jail solely because she was busted for riding the light rail without a ticket. I thought that sounded unreasonable, but didn’t question her. A few minutes later, her attorney came over with what looked like Santa’s scroll of naughty kids, which unraveled a gazillion other infractions that she was being held for. The light rail incident was just the icing on the cake. She turned to me and said, “I don’t think I’ll be getting out of here today.” I retreated into my warped mind to think about how she would get home if she were ever released and if she’d be taking the light rail.

After what seemed to be an eternity, it was finally verbalized. I heard the bailiff say, “The State of Colorado versus Sarah Brewer,” which made me sound notorious. It was sexy for about 1/2 a second, then the whole shackle thing reminded me that I was in a real mess. Harry B helped me down from the box, but it is super hard to jump down from anything while not being able to lift your arms nor have enough distance to firmly plant your feet for the dismount. Before I even got to the podium, I heard Matt’s attorney telling the judge that I needed a harsher penalty because I was clearly crazy. I guess the DA and Harry B had decided that I should be released and attend an anger management class, but Matt’s attorney didn’t agree. The Judge didn’t even give her time to finish her sentence. I was to be released. Wahoooo! I’m sure other things were said, but I was too thrilled to care.

Harry B reminded me that being released was a LONG process and I wouldn’t be getting out until the afternoon. As I was being led out of the courtroom, Harry B told me to call when I was released and we’d figure out the next steps. I tried to wave goodbye, which, with my limited range of motion reminded me that I only had the capabilities of a T-Rex. I was put in a tiny holding cell with the naughty light rail rider. All we had was a toilet/water fountain/sink thingy and each others’ company.

As we were held there for two more hours, she told me her woes. She explained that she had a young son at home and she didn’t know how he would get home from school. My heart broke for that little boy as she pounded on the door and yelled things about her civil rights. Her pleas fell on the deaf ears of the guard sitting outside our cell, and eventually, she gave up her tirade. And then, she apologized as she dropped her blue trousers and fouled our way-too-close-for-comfort surroundings.

All the mental humming of the “Don’t You Dare Freak Out” song was not making this day go any faster, but at least there was some light peering through that little sliver of window, reminding me that soon I would be free.

It couldn’t come soon enough.