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.

 

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26 Comments

  1. Sigh…. Sweet Jesus. My heart breaks for Justin’s family… for you and yours. Sending you lots and lots of love. Hoping when I meet you in a couple weeks that I don’t just start crying like a mental patient (not that there’s anything wrong with that). Seriously. Sending you and Maddie and Ben lots of good thoughts and love during this awful awful time. xxx

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  2. Just beautiful, Sarah! You captured the emotions of the day beautifully. I thought Luke was going to pass out right before the service, he was completely ashen, changed seats to sit next to me and then proceeded to curl up into my lap and quietly cry through the service. You are right, it is just not fair! Hard and beautiful day all at the same time. And how fitting that we all danced with Justin! That boy loved life!

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  3. I am one of Justin’s biggest fan’s! I only know him through Kayla! Caring bridge . Thank you for sharing what a letter!!! I am praying for all of you!

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  4. I am changed for the better through your stories. I wont forget Justin and what his life teaches us about life and loving and not giving up! Forever grateful. Sending love out to you and sweet Ben. Hoping precious memories comfort Justin’s family.

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  5. What a wonderful little boy. Be a ninja in life. Your words allowed me to be part of his memorial and makes me appreciate today. Big hug to you, Ben and Maddie. I will never look at Legos with out thinking of Justin a warrior in life fighting against cancer

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  6. i don’t know what to say….it’s like I was there….after talking to you on the phone, and then reading this….wow. And can I also say how touched I am by sweet Ben and his sweet heart….he’s hurting but he makes sure to take care of Mad. Geez I love that kid so much. I’m at a loss….I am heartbroken for Justin’s family and friends. I don’t get it either. And I guess if Justin’s dad is right, Ben couldn’t have a bigger or better or stronger ninja warrior in his corner fighting for him. xoxoxo

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  7. i don’t know what to say….it’s like I was there….after talking to you on the phone, and then reading this….wow. And can I also say how touched I am by sweet Ben and his sweet heart….he’s hurting but he makes sure to take care of Mad. Geez I love that kid so much. I’m at a loss….I am heartbroken for Justin’s family and friends. I don’t get it either. And I guess if Justin’s dad is right, Ben couldn’t have a bigger or better or stronger ninja warrior in his corner fighting for him. xoxoxo

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  8. that was beautiful, sarah, just like you. you also did your part in sharing “Justin” with everyone. i wish i could have met him. ben had a wonderful friend…ben, always the comforter and the strongest of us all. peace and comfort to his brave and beautiful mother and father and to all his friends and family.

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  9. Sending you a big – wet (teary) hug of support. Yes, your heart is honestly breaking for Justin, his family, yourself and your children. Sucks on every human level possible.

    Your heartfelt tribute to Justin, and his family along with your emotional/honest words for all those that have been impacted by knowing, loving and losing Justin were/are beautiful. I am sure – positive Lori/Jeff will appreciate on every level how much love, thought, passion, fear, worry, support you are exploding with – for them as well as yourself and your children.

    Having personally experienced, too many times, a version of what you are going through as a mother via the death of a child in regard to your children brings some unsolicited advice:=). My “boys” (now men but still) have had several “expected” losses (of course referring to the monster cancer in diverse forms) and several more (if you can even believe that cause I still can’t) through a senseless horrific murder/work related and still unpunished since he murderer was an illegal believed to have gotten in and out of our country – no problem, a 21 year old suicide who they knew since birth and even the unexpected death of a high school friend who died in front of an entire gym of students at a swim meet from an unknown heart condition. The MOST significant common denominator of these young losses were their ongoing relationships with the parents. While bittersweet at best – those doors were/are always open, welcome and while difficult – healing for all. For me, I learned and practiced NOT asking my friends “how are you, but actually had a hand written note that when I called I started the conversation with – checking in”. I KNEW/KNOW how they are – and they know I am quite capable of well meaning but never the less foot in mouth comments…so I had my cheat sheet. My “boys” also got involved with several different ways of honoring their friends and their spirit and memory. My youngest, shared the love of baseball with his friend David, so at the baseball picnic he solicited the board to allow him to sell ice cream for David’s foundation and the Board then generously matched funds. Major success on many levels. This tradition lives on. For another one of the boys – we celebrate JoeFest,(a big family/friend b’day party) another there is an annual hockey tournament which both kids work. The point is they were able to channel their grief, continue to love/honor their friend and celebrate them…all while showing their parents how much their friend and their family means/meant to them. Just a thought for moving forward for Ben, Madeline and you…

    And – it is usually me that sends that email or leaves messages when I know they aren’t home for special reasons, no reasons, a memory share etc. This way, if and or when they are in the mood – they respond. Being a chronic crier – they know what to expect from me…shared tears…and not so much pep talks – cause I am not Suzy Sunshine EVER… What they always know is that their child mattered/matters, was loved by many and remembered and cherished…now and for our forever!

    Take care Sarah…no need to suggest extra hugs for the kids – you max that out – but how special that in their grief and sorrow for Justin and family…they hugged each other and you just a little tighter!!!

    XXOO-Love, Randy

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  10. Sarah. I appreciate so much you sharing this. We lost our Michael Aug. 29 last year. Well, the previous Christmas (2012) we lost a girl who was diagnosed/relapsed had the same thing as Michael. Michael and I visited her the week before she passed but he just couldn’t go to her funeral mass. This is the family we always saw at the hospital (we live in the same town and have one peds/onc that would see us on Tuesdays for chemo/check ups) we became connected in ways that go beyond friendship. It was devastating. And then when Michael died last summer…I kind of held it together (mostly) at his service but when I saw the mom of the girl who had been on the same journey as him (and passed in December) I totally lost it. She had been praying so hard that Michael would beat this and be a “success” story….he was so smart, so beautiful and only 17. If you’re looking for a sign to relish each day and realize that every moment is precious…this is it! Thank you again. Your Ben is on my prayer list now. Kimberly

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  11. As I read this beautiful tribute to Justin I felt like you do on a roller coaster ride. You know that part of it where you know the down hill is comming and you can’t stop it. Your holding your breath and thinking to yourself, why did I get on this thing. Then you go over the hill and you can’t catch your breath. Yeah, I can’t think of Justin or Ben without the awful lump appearing in my throat, the overwhelming fear and the helplessness. Tears flow and they don’t want to stop. My faith tells me that Gods plan is the best plan, that Justin is in Jesus’ arms and he is loving where he is. But knowing how this awful loss and journey have affected all that knew him just makes it questionable at times. Thank you Sarah for sharing such personal feelings and fears. Please know you are not alone in this journey. We are here if you need us for any thing, we are praying for Ben and all the children who are suffering and for their beautiful families that are suffering as well. Much love dear friend…and many hugs!

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