in 800days

Brooke Hester, and Christmas

I hope the holidays are going well for everyone. I wanted to share the latest 800days video which we published today. Robyn and I visited Grand Rapids a bit ago with AJ and met Brooke Hester and her mom Jessica. Brooke is a spunky little girl, and Jessica is such a passionate mother. We had an amazing day with them, and are grateful they shared their story with us. Please watch and share the video, and consider a Christmas donation to Because of Ezra to help us cure the beast that stole our son from us.

We decorated our Christmas tree this year all in gold, the color of pediatric cancer awareness. We even topped it off with 50 gold Because of Ezra bracelets. It felt weird to pull our Christmas stuff out for the first time in a couple years. Ezra was born August 31st, 2008. That year, 2008, we had a small Christmas in our apartment in Tampa with our firstborn son, Ezra. He was 4 months old. We were a young family starting our lives, and everything was perfect. It felt magical. We sent out Christmas cards for the first time.

October 4th, 2009, we took Ezra to the emergency room. 2 days later he was diagnosed with stage 4 neuroblastoma. October 10th we found out Robyn was pregnant. By the 20th we knew it was twins. We spent Christmas 2009 in our newly purchased home, and 3 days later went back to the hospital for round 4 of chemo. That Christmas was great – a lot of love. The Children’s Cancer Center in Tampa overflowed Ezra’s room with donated Christmas gifts. It was a year of hope, and a year of the unknown.

March 15th, the twins were born. We named them Price and Charley. March 22nd, Price died. I held Robyn in my arms, as she held Price. October 1st, after 192 days in the NICU, Charley finally came home. On October 12th, we left Charley at home with his nana, and headed to Orlando with Ezra. I posted a blog about faith and doubt, sharing some of the struggle we were feeling. November 8, 2010, Ezra died. I was so empty by then, everything felt the same. I could feel nothing, because I was feeling way too much. A generous person flew us to Greece, where Robyn and I stayed for 10 days with no outside contact, and I think that trip may have saved our sanity, and our marriage. We mourned.

We came back just before Christmas 2010, and spent it at home with people we loved. We didn’t decorate. I think there was a tree, it must have been set up by Robyn’s mom, but to this day I don’t think I know where it came from.

Last year, 2011, for Christmas, it hurt too much to do anything. We bought Charley some gifts, and headed to Seattle to spend the holidays with Robyn’s parents. We let them handle the festivities. The overwhelming feeling was of something missing. We had had 3 children, and one was with us that day. It’s not a feeling which one knows what to do with, really.

As 2012 closes, it is strange to look back at where we were a year ago, or two, or three, or 4, and fast forward to now. We have rebuilt our family to something which is strong as a whole, although often we find our individual selves weak. I lean on Robyn all the time, and she on me. I still ask God for direction, although I sometimes find it hard to trust Him. I am trying.

Charley knows we love him. I wonder how all this will process for him later.

There’s a tree in our front room, and I climbed up the oak trees in the front yard a couple weeks ago after my 31st birthday, and wrapped Christmas lights all around them. When the sun goes down, the lights warm the yard and the house with a Christmassy glow. Still, much of it feels like rote.

This year we’ll be surrounded by family and people we love for Christmas. I’ll probably wish you a Merry Christmas here that day. But I’ll tell you – it’s hard, every year. It doesn’t feel right. Our sons were stolen from us, and we love and live as a family continually putting itself back together. I know some of you are, too.

Love you guys. Ezra – we miss you. Merry Christmas.

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  1. my heart still breaks for you and Robyn every single day. There are no words, of course. I know you miss the sweetness of Ezra every minute and feel cheated at not having an opportunity to deeply know Price. You are well loved…I know that’s not enough or a substitute but i hope in your lowest low, you know you can call on a community of people who adore you and would do anything for you. xxoo

  2. What do I have to offer one with such pain? You write so well and you really help me understand your feelings as well as anyone can. And it brings me to tears. This big hole in your heart that gushes out a wave of pain now and again,I can relate….just not to the part of losing a child. It’s like I want to cry so hard for you and when I’m all cried out, I want you to be all better. But I know it doesn’t work that way.

    The only thing I know to say is, God never told us that this place where you and I now reside is heaven. This is not heaven. This is not heaven. This is not heaven. And we have no choice but to get our wounds fully closed up in heaven. It’s hard to be patient because that could be a long time for some of us. But if Christ had not died and conquered sin and death, we’d not even have that hope. Perhaps we would be crying out to God to do something like find a way to reunite us with our little children? Perhaps we’d make a deal with God that no matter how long we had to wait, if He’d just give us the hope, even far into the future hope that one day we will be with them again, then we would carry on?

    We didn’t have to make a deal. He freely gave the gift.However, it’s to be used at a later date. Only God’s strength can get us to stop looking behind, looking over our shoulders and look forward to the time we can see with new eyes just how spectacular the gift, the prize is.

    For now, you miss your children. It’s really a good thing. Because it always confirms that there is something better ahead, that this couldn’t possibly be it….not even on the “good” days. My flesh wants your suffering to go away. But I also want God’s will to be done so that the evil that visits children will one day be wiped out on behalf of them all!I believe that your suffering will not be in vain.

    I will pray for God’s strength to envelope you and your family. And that He will give you rest from your heartache at just the right time. And when He gives you peace that you cannot explain, please share with us. It gives us all hope.

    God Bless You~

  3. The eloquence of your writing makes me feel like I am there with you. I remember being at Grace Family, sharing Ezra’s story with friends and family. Trying in my own little way to help and bring an awareness to neuroblastoma. I would come home every night and read your blogs. Most of the time I would breath a sigh of relief, we made it through another day. When I read the last blog, Ezra passed it took my breath away. I cried as if he had been my own child, my own children knew what had hapened and I never had to say a word. I questioned God as if he had been my own child. Robyn, Kyle you two are a blessing. You have shown us that out of pain we can continue and do great things. Your compassion, strength and faith are amazing. I will never forget 800 balloons, 800 days, or Ezra. Merry Christmas Ezra, Merry Christmas Price, Merry Christmas Robyn, Kyle and Charley.

  4. ‘May the L ord bless you and protect you. May the L ord smile on you and be gracious to you. May the L ord show you his favor and give you his peace.’ (Numbers 6:24-26 NLT)

  5. As a parent, my heart cannot even begin to consider the pain you have experienced in your lives, losing two of your beautiful children.

    Please know you are in my heart and in my prayers, always.

  6. I’ve been following your journey since before you knew you were pregnant with the twins. My heart has shared joy with you and sorrow with you. I lift your beautiful family up to the Lord and pray that He will help to make you as whole as you can possibly be without the presence of your beautiful children who are with Jesus. As a parent, I cannot even imagine what you have faced but I do know that we all serve a mighty God and He is a God of miracles. I believe He will use you and ‘Because of Ezra’ to find a cure for this terrible cancer. I don’t know why God has chosen to let me live through multiple life threatening illnesses and chose to take your beautiful babies. I struggle with that question. Be assured of my continued thoughts and prayers for you, Robyn and Charley. You all have a special place in my heart.
    Heather from Canada