I mentioned to Robyn the other day how much I love the Pacific Northwest, and how I thought one day I’d like to live here again. We were driving south towards Seattle on I-5, and it was one of those drives where we’re both kind of just lost in our thoughts. Happens a lot for us. We drove along listening to the music for awhile, then Robyn said “but our sons are buried in Tampa.”
We’ve been thinking about neuroblastoma a lot lately – well, in between caring for Charley, who’s been in the ER twice this week for a virus which has left him with zero energy and a mouth and throat full of open sores. I’ve been thinking of how connected we all are in this crap. Monday we’re meeting some people we appreciate – Jeff and Carin Towne. Their 3 year old son Ben died of neuroblastoma in 2008, and they’ve set up the Ben Towne Foundation to honor his memory and fund research into new therapies. They just gave $5 million to a study they’re passionate about, in January.
Afterwards, we’re having lunch with our new friends the Shraugers. Their son Caden is using his super powers to fight stage 4 neuroblastoma at Seattle Children’s Hospital. We met them while launching our #nomorenb project, which is trying to tell these kids’ stories. They are strong, they are hopeful, and they are tired. They’re always smiling when we see them.
Friday Taylor Swift (what? ha, serious) debuted a song – called Ronan – which she wrote about our friends Maya and Woody’s son, who died of neuroblastoma soon after Ezra did. You may have read Maya’s blog. We’ve kind of fallen in love with the Thompsons. They even DROVE out to our first west coast Because of Ezra event recently in LA (all the way from Arizona).
Like a soldier who follows a scout back to an entire field of warriors, we can’t seem to find an end to these stories. Ezra brought us here. And every day we are meeting another name to fight in as well. It’s wearying, inspiring, empowering, and scary as hell.
As Ezra was going through treatment, I was tired all the time. Robyn and I both had this insane energy that somehow fueled us through every day, but whenever we had moments to ourselves… it was like we were just shells of people. Empty Taco Bell fire sauce packets. It was impossible to feel and impossible to think. Then the morning would come, or we’d leave whatever little room we’d found in the hospital to hide ourselves in (I’m pretty sure I cried, or just stood for a while, in unlocked supply closets a few times), and we’d snap back to ON. You don’t really have any other choice. Imagine feeling the strongest emotion you’ve ever felt, constantly, for 13 months.
When we walked into the ER with Charley (twice) this week, all those memories flooded back. At Seattle Children’s, we literally parked next to the RV Caden and his family are living in (in Parking Lot 4) while Caden is being treated. They left from Montana months ago to come to the NW, and Caden hasn’t been home yet. We walked into the ER, Charley got an IV going, and we spent 8 hours figuring out what was wrong with him. He’s fine – he has a virus which is giving him a lot of pain and sores in his mouth and throat, so I guess not “fine”, but it should go away in the next day or two. It’s nothing long-term serious. As we sat on a hospital bed staring at a screen with Charley’s vitals displayed in blues and yellows and purples, Taylor Swift’s song was released at the Stand Up 2 Cancer event, we downloaded it like millions of other people, and remembered why everything is harder for us now.
Every nb kid I meet reminds me of Ezra. Every sunny day reminds me of the field our sons are buried in.
Some things are important. Like seeing the battles going on in people’s families and lives, and doing something about it. I’m tired of living like islands. I’m tired of extra-curricular activities consisting 99% of selfish things. Things that make you feel good. Studying. A church service. A dinner out. Drinks at your favorite spot. I love all those things, and I mean, I’m way more appreciative now than ever of a mountain top, fresh air, a good book, or those things that take our breath away – but by God, let’s put some passion into addressing the hurt we’re surrounded with, too. For Robyn and I it’s kids’ cancer. Maybe it is for you, too. Maybe it’s something else for you. But please, know the world is much larger than yourself, and work to help someone.
You guys are all part of the reason we’re still here. Thanks.
Our love…
Xoxo always
Having a broken heart leads to much compassion, wisdom, and insight. Kyle, your blog is evidence that God is using your pain to impact others in a mighty way. Thank you for giving the wake up call to embrace life and serve others. Blessings to you and your precious family.
The both of you are very special people! Ezra has effected us in so many ways…. Right now I am in Florida because my sweet neighbor just found out he has lung cancer and had surgery two weeks ago. I have been helping them out with anything I can and been there for moral support. It’s sad so sad because he is fighting right now for the 25% of life they gave him. (I hate the C word).
My son and daughter in law are living in my home down here now. I sent them to your church. The church where we celebrated your son’s lives. The people greeted them and were very kind. They asked them how they heard about the church and they told them because of Ezra. :0) I hope they can hear you sing someday!
I talk all of the time about Ezra and how special he was to me and talk about Ezra’s family. The family that had strength they had but didn’t know it. The family that has so much love they have to share and the drive they have to help other little Ezra’s out. Be proud!
So glad Charlie is ok. He is such a sweet heart! Wish you guys were in Florida. I would have loved to come for a visit while I am here!
I don’t pretend to know how you feel regarding your losses however my heart is right there with you about giving to a hurting world. For me it’s ministering to women. It’s my meager offering back to God. I don’t want to be a spiritually fat person I want God’s love to flow in and back out of me. I sent you blog to a dear friend whose daughter died unexpectedly 6 months ago. I want to encourage her to use some of her hurt and anger to minister to someone in honor of her beautiful Emily. Ezra is still touching peoples lives. I heard someone say you never get over your grief you just decide to do something with it.
It is amazing how you both are so obedient to God’s calling! You truly have the Holy Spirit in you. Because of Ezra, you have inspired so many people. That precious little boy has made such an impact in his short time here on earth than most of us could ever imagine doing in 80 years! Praise God for the time He gave you with him on earth, the beautiful memories that will be in your heart forever and the excitement of knowing you will spend eternity with him!
Thank you, thank you, thank you. I can’t say it enough. Although Caden’s struggle is still going on, and with an outcome that is still very unclear, your words were somehow just what I (Caden’s grammy) needed to hear. You have been through such unimaginable pain (that I unfortunately now can relate to) and yet you go forward and give us hope.
I just read the whole Matthews story and will hold all of you in my prayers. I gave my children an extra squeeze tonight and will actively seek ways to better the world in honor of all of your sons. God bless you all.
for me it’s domestic violence. I wrote you a while back, about your post that everything matters. It took me a long time to decide to help women who are in that kind of situation because I grew up in that situation. Going back into it sometimes feels empowering, and sometimes is so draining that I want to go to bed and stay there for a week. Going back into the pain to pull other people out is the hardest and most rewarding thing I can imagine. I think That is what God means when he says “You are made strong through your weakness”…I think the reverse is true as well..what you perceive to be your strength, if relied on too much…can become your Achilles heel..and the place you know is the center of your weakness and pain becomes the load stone to help others. It’s like a beacon. They come to you not because you are so strong, but because you have been so hurt and damaged that they can sense it and they trust you.