in Because of Ezra

two years

Two years ago today Ezra died.

The house still feels wrong without his voice. I sat in my office the other day and watched this video for 30 minutes on loop, crying and laughing. I miss hearing his voice.

You go through a lot of feelings when you lose a child. Then when you lose one again. Then when your remaining, third child, lives in a hospital for 7 months and fights like a madman to finally, after a year, breathe on his own while he sleeps.

We’ve been angry. We’re still angry; at cancer, at us not having enough research yet to cure this, at a world where this can happen to so many families, sometimes at God.

We’ve been sad – a deep, arctic sadness. Vast, cold, lonely… simple and sharp in its pain and so very cruel for that. It hides more as we get further away, but it’s never gone.

We’ve been grateful – for the time we had with Ezra, for all the photos, videos, and stories you and we share about him. For friends who make all the difference. For the incredible people we’ve met these last two years. For you, for reading this.

We’ve felt despair. Moments where the weight of feeling all of this is just too much and ‘overwhelmed’ seems like a word kids use when playing trains compared to the crushing depths our minds get worked up in.

We’ve been impassioned. Working on Because of Ezra we keep meeting these amazing people, some who’s kids are fighting neuroblastoma right now. Some who’ve lost children. Some who’ve beaten it. Some who haven’t had neuroblastoma’s evil hands on their family, but have connected with these stories and are fighting now with us.

Ezra lived 800 days. Robyn says they were the best days of her life. People say that all the time, of course, but I know they were for her – I’ve never seen her so perfectly happy as she was with Ezra.

One thing we’ve been doing in Ezra’s name is creating these videos to tell the stories of children like Ezra, who are fighting neuroblastoma now. We call the project 800days (800days.org), in remembrance of Ezra’s life. We’re doing this through Because of Ezra, and meeting these families has been excruciating and empowering at the same time. We’ve met families like Caden’s, Malia’s, Brooke’s, Emily’s, and Christopher’s. It is such an honor to be able to do this. It is an honor to tell these kids’ stories, to continue Ezra’s name on such an amazing way to fight; to work with people like Mindy Kaling who have been graciously pouring in support. Please – take a minute today to look at 800days.org and share the videos there. This is something we do Because of Ezra, and it is making a difference.

Robyn and I had a conversation earlier today about how telling these kids’ stories and working on Because of Ezra feels like a way of keeping Ezra alive. It’s how we keep his name being spoken, know his life is still affecting change, and feel like we are still being his parents, looking out for him. Telling stories like his, and fighting to stop this stupid cancer.

In January, day 1601 will happen. It will be more time since he died than his entire life. In 800 days, Ezra changed us forever. He is, and will always be, our first-born son.

I wish he was here this morning.

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20 Comments

  1. My heart breaks over and over for the two of you. You are the strongest people I know. Love you very much and so glad our families are tied together by AJ and Mandy.

    Miss you Ezra.

  2. There are no words to comprehend what you have felt, been through…yet your family comes here and shares Ezra’s story with us…your lives with us. Ezra’s beautiful soul shines brightly every day. My continued thoughts and prayers are with your family and with your Guardian Angels. God Bless!!

  3. Beautifully written, you and Robyn are amazing people and Ezra was/is so lucky to have you two as parents who continue to carry forth his legacy, doing beautiful things in his honor and continuing to push through the hurt, and all that comes with childhood cancer and the loss of a child(ren). Because of Ezra this world is a better place! Much love to you guys on this more than difficult day…

  4. This piece you wrote is so tragically true:

    “We’ve been sad –a deep, arctic sadness. Vast, cold, lonely… simple and sharp in its pain and so very cruel for that. It hides more as we get further away, but it’s never gone.”

    Prayers of comfort and peace. We have been there…reading this literally made it hard to breath. Our hearts hurt for your families hurt, you are never alone.
    You are making Ezra proud!

  5. I’ve always been captivated by your ability to express your feelings through these blog posts. I’m sitting here covered in chills and crying silent tears. Love to you today…I’m wearing my BoE bracelet proudly.

  6. Somehow, my son survived Neuroblastoma. Because he was 5 days old when it was found. And was still stage 3. I live everyday knowing that we were so very lucky. It was found by accident….if it hadn’t been, he would have been over age one, or stage 4, or both. These beautiful children should not have to fight for their lives. They should not have to die. I will fight hard for your son, and all the others who are still fighting, and those who have lost their fight. You and your son are never far from my thoughts.
    You are doing amazing things through such a sad situation. I admire, and cry, for you!
    Kris

  7. I talk and think of Ezra each and every day. I think of the both of you as well wondering how you get through each day without him.

    I look at the two of you and see two VERY strong people. I enjoy seeing all the pictures, videos and everything else you are willing to share.

    However I feel the pain you have to live with as well and when I think of Ezra it’s hard to hold back the tears.

    God bless
    Peggy

  8. Dear Kyle and Robyn,

    I thought of you and sweet Ezra first thing this morning when I realized the date. I remember this date because it is also my nephews birthday. I’m sure this is very difficult day for you all but know that warm thoughts are being sent your way. You guys are beyond inspirational for all that you do in the fight.

  9. You story has touched me since the beginning when I would curl up before the throne of God sobbing for Ezra’s life. You don’t know me, but Ezra’s life has blessed mine and I continue to pray for your family. I hope I get to meet Ezra when I get to heaven one day. Don’t give up the fight!

  10. Ezra’s story has reached so far, here in CA so many were praying that had not met Ezra. He touched hearts deeply and your sharing is and will keep touching hearts. May God bless you with His amazing Peace in your lives. Thank you for sharing.

  11. I pray for and love your family. I’ll never understand how/why this happens and honestly get angry myself. Our lives are all but a vapor…soon we will be with our Creator who will once again restore us to perfection as He intended us to be.

  12. Kyle and Robyn,
    I wish I could say something that would lesson your pain. I think I absorb myself in Ezra’s story and in others’ story in some desperate attempt to share the pain so that yours is less. Thank you for your work with 800 days and the videos. If your foundation could ever use a hand from someone in Arizona, please contact me, I am looking for ways to get involved in the fight.
    Respectfully,
    Tiffany

  13. Thank you for always sharing so openly and honestly. I weep for you as parents. It is not fair to have to lose a child and live with that pain in your heart everyday. I thank God you will rejoice and unite again one day with your precious sons.

  14. Dear Kyle and Robyn
    I think of you guys often, even though we never have met. I live in california. Your courage and strength still amazes me and encourages me. My husband is currently battling cancer. My heart still hurts for you and all the loss you’ve endured in your young lives. Charlie is so blessed to have you two for his parents.
    Prayers for you
    Barbara

  15. Kyle – It is still heart breaking to see pictures of your precious boy, Ezra, and feel the depth of your loss. You are a gifted writer, and God will use that gift for great purpose that honor Ezra’s memory. Blessings today and always to your valiant, amazing family. Peace.

  16. No words will really work to tell you how you’ve affected our lives…still wearing my yellow bracelet…you, and your family, are loved.

  17. I”m continuing to pray for your family. Loved the ice cube video. Praying that Charley continues on the road to bull recovery.

  18. Beautiful, sad, and perfect all at the same time. You family is such an inspiration of hope for so many… there’s not a day that goes by that we don’t think about/pray for you and your sweet family including Price and Ezra. Noah (who shares Ezra’s exact birthday/year) talks about Ezra, asks about Heaven and ‘hates Cancer’ right along with you and your family. As Christmas gets closer, we’ll be pulling out the decorations which includes an Elmo ornament that Noah picked out for Ezra 2 years ago. Thank you for this video, we watched it and laughed/cried with you. Thank you for sharing his life and story with complete strangers. Charlie is lucky to have you two. Prayers and hugs your way…