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

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19 Comments

  1. Dear Ben AND Madeline’s Mommy aka Sarah:

    My mommy heart is so profoundly touched by your words, raw honesty and genuine/heartfelt personal loss.

    While Lori, Jeff and the girls OWN the pain of losing Justin, I so appreciate the fact that as a mom, friend, Justin fan etc. YOU SHARE that grief – deeply. Your loss, albeit “different” is none the less a deep and personal loss – to you and your children.

    Justin was a legacy in his own time and I hope for you – for Lori/Jeff – for all who love Justin that there are many happy tears and smiles for an incredible child all the while forever mourning this devastating loss – if not now – then for sure one day…..

    Hugs – Jason & Jarred’s mom aka Randy

    Like

  2. Absolutely beautiful tribute to Justin. Definitely heartfelt and brought me to tears!!! Your son is a lucky little man!!!

    Like

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