Let the dogs out…

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.

 

The loss of a Ninja

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

you’ll grow into it…

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.

 

 

 

Everything happens for a reason?

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.