in Because of Ezra

a family of fighters

Been a couple months since we posted here.

Much is the same, and we move always forwards. Abby left yesterday for her internship at BigStuf, and we and Charley miss her already. She and Charley went to Build-a-Bear last week and she made a bear with 6 hearts… Kyle, Robyn, Abby, Ezra, Charley, and Price. When you press the bear it has a recording in her voice talking to Charley.

Charley recently had eye surgery on his left eye, and it looks SO much better! Check out this photo – before is on the left, after on the right.

He doesn’t yet eat by mouth, nor does he say anything more than dada and mama and buh-bye. He’s making progress slowly and surely though. We’ll be getting leg braces for him soon (he’s already been fitted) to help him learn to walk. Right now he just tiptoes everywhere because the muscles are so tight – and he can’t learn to walk that way.

We still miss Ezra every day. It hasn’t gotten any easier, really. Robyn read somewhere and has been saying it’s moved from our skin to our bones. When you start out with this pain, it is visible instantly – you see it when you look in the mirror, you feel like your words aren’t real, you wonder if you shouldn’t just stay in bed all day and watch TV or read a book. It’s difficult to be happy.

As you move forward (it’s been a year and a half or so for us) the pain moves deeper, off your skin and into your bones. We smile more, but it often feels like there’s weights on the corners of our mouths. It’s a joy which knows life is full of tragedy. I can’t seem to go a day without coming in contact with another family who has lost a child to this cancer, especially as we have been beginning to focus on building up our Because of Ezra organization. What used to be a life of mine and Robyn’s goals and likes has become a battle and a realization pain is everywhere. I’m not saying we can’t smile – we do every day. I just look at people different I guess. More patience for the messed up folks. Less patience for the folks whining about silly things. Much of life is so trivial, yet we place the highest importance on these stupid things like a minor difference of opinion or onions on our burger when we ordered it without them (which I’d never do).

We just got back from the 2012 NMTRC Symposium – a 2-3 day get together of the most amazing people fighting neuroblastoma today. Please, read and share that blog post about what went on. I hope you know neuroblastoma didn’t just stop when Ezra died. We’ve also set up a new series called “This Week in Neuroblastoma” (#twiNB) where we’ll be highlighting some of the past week’s nb happenings. It’s constant. Please read them – the fight is not over, and we are doing all we can to kick neuroblastoma in the face.

I hope things are going well in your life. You made walking through (well, stumbling I guess) Ezra’s treatment just a bit easier. Knowing you guys were on our side, hearing your comments, seeing your support… it strengthened us to know we weren’t alone. I know we still aren’t. We’re fighting every day. Thank you.

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  1. Yay for Charley’s eye surgery. He looks great! So good to read of all you are doing in the fight against this disease. Still here routing for you guys and willing to help however I can.

  2. Charley looks amazing after his eye surgery, praise God. He is always in my prayers and so are you guys. God bless you for all that you are doing to find a cure for such an awful disease. xoxoxo

  3. The most emotionally moving words for me in this post was about pain moving “off your skin and into your bones”. Thank you for being honest and transparent.

    I am so grateful for the energy that you and Robyn put toward meeting other families, raising awareness and funds for a cure.

    Love you guys!

  4. Kyle & Robyn you made Joe and i laugh so much this past week at the conference. Thats not something we do often. Nor does the laughter change the longing for our daughter but it does feel good while it lasts. Thank you for sharing Ezra, Price & Charlies story with us. We hold them close to our hearts. Your Charlie is beautiful.
    Lisa Riniolo

  5. I always appreciate your honesty. And as time goes on and I have learned to be more mature – finally at the age of 36- I appreciate what you say about people complaining about onions on their burger. Thank you for helping me to appreciate ALL that I have- big and small. I pray for you and your family.

  6. So true…the fight is NOT over and you WILL kick it in the face. How honoring to Ezra’s life and memory to continue the battle even when you grow weary and even as the sadness permeates every bit of you from the inside out. Look at the difference you are making in lives…just being Kyle and Robyn, open to share, being transparent and NOT staying in bed reading even on the days I know you must battle it. We love you guys and miss Charley’s face. I’m missing hanging out with him and getting to know him. Miss you guys too. love from africa.

  7. Praise God for Charlie’s eye. It is always so good to see you at The Chapel. Know that you continue to touch the hearts of others as you sing God’s praises while living with so much pain. My mother is suffering from cancer and I know how painful it is to see her suffer. I can only imagine your pain. I pray that God will continue to bless your family and heal your pain each and every day!!!

  8. I pray daily for your family to find “normalcy”. So glad to see Charley looking so good. May the Lord bless your efforts in the fight against this brutal disease. I know three families in the Orlando area that have been through the same fight. Keep up the good work

  9. Praying for you today through Spiritual Sunday’s prayer site. I know how much people’s prayers meant to me when I was caring for my son. God bless you.