|3-D mold of Joey's thumbprint|
When I don't get a CaringBridge update notification for the children I follow there, I tend toward hope and don't think much about them. When we drive by the local huge Children's Hospital here in Tête de Hergé -- where there are only tonsillectomies performed and broken bones fixed with psychedelic splints and casts -- I do remember them, back in that other world where kids get cancer and sometimes die in the middle of their youth.
I confess to looking at pictures of Daisy Merrick rather frequently, but for the smile she brings. None of us are naive enough to avoid our private picture book of what she must have looked like at her end, and no reassurances by preacher men and preacher women, even when they are that child's parent, can fool me. I've seen Death. So have you. But those are the pictures we've been given as fodder for the dark. Daisy was, when vibrantly alive, nothing but light.
Anyway, Joey's Dad just about drove me insane in Joey's last months. How dare he? A man with scientific gleanings and leanings, he was, and will be again, a believer in miracles. L.I.T.E.R.A.L.L.Y. To such an extent that I prayed for Joey to please die. I did that once, because as you know, that's the extent of my praying -- if, in the great crap shoot, he's aware of such needs; if, indeed, such needs even matter, then praying once to omniscience and omnipotence ought to square things.
I don't believe Joey's Dad ever slept. He kept on working, too, for many reasons, I imagine, insurance coverage likely topping the list. But his devotion almost bordered on abuse, to me. To me, I say. He was pure love to his son and his son reflected pure love back, but you could also see in his wizened yellow face that he had had it. But they clung, so... Well, isn't this an old tired story?
Anyway (the best of segues), he posted something tonight on CaringBridge and I want to pass it on, for those of you who may have followed Joey's story at the reserved distance of an odd blog. Note that you don't hyperventilate while reading him. Note that he's in a place I cannot imagine -- but then I cannot imagine any of the places he has had to traverse in the last five, six years.
I wrote him a comment, something I rarely do on CaringBridge, particularly when the parent or person blogging there is very religious, as my propensity to say something perceived as uncaring becomes an insulting danger that I just don't want to risk. "You write well," I said. I told him that I hoped he would keep at it.
Of course, this was also a ploy to not have to go to Facebook to follow the foundation doings that are getting underway in Joey's honor (Legos, what else!?). I hate Facebook like I hate telephones and their bad news and their insinuations, like I hate the noise of the mall. I prefer CaringBridge and the illusion of intimacy.
Nick, the dad in question, has shortened Joey's "Story" on CaringBridge to this:
Joey lost his battle to medulloblastoma November of 2012. I wish I could list the stories and testmonies of all of us that were inspired to live better because of watching Joey's short life. His positive attitude was contagious and he wanted to encourage everybody he came into contact with. He inspired Elizabeth and me, more than words could ever say. Joey's attitude, faith, and generous spirit lead to the creation of TEAM JOEY, a not for profit (501c3) organization dedicated to getting Legos into the hands of every child battling cancer, and funding research to END pediatric cancer, once and for all. See link below:
And of the many fantastic photographs they captured of their son, Nick and Elizabeth chose this one to head the new page:
This is what Nick blogged about today, and, again, if anyone wishes to hook up with CaringBridge, it's an easy site with which to register --
Written 2 hours ago
I'm not sure if anybody reads this anymore. Many have told me they miss us sharing and asked that when we had a moment, to share a few thoughts. The support and prayers we got from this site (all of YOU), when we were going through the darkest and ugliest experience I could have ever imagined, was unbelievable. We jumped on tonight for several reasons, the main one being to thank you all for your prayers. Throughout Joey’s battle, when we got good news, you were there, praying and celebrating. When the doctor said, "It's all over his brain again," you were reading and following…and praying. And even as Joey suffocated in our arms, you were praying for Elizabeth and me. Thank you. Even now, we read messages from those who understand...who get it. The pain doesn't go away. It just doesn't. Elizabeth and I were talking the other night that we don't think we'd ever want it to. It's the most unbelievable dichotomy. To remember him (which is at least every 5 minutes) brings incredible joy and memories that are so good…I get caught in public thinking of him...and smiling....and then intense, searing pain through your heart. He is gone. How did this happen? Our son, our life in so many ways is gone. We were at dinner with some really amazing people the other night, and we were explaining how it really wears us out to hear people give the typical pat answers, albeit maybe true comments, just not necessarily encouraging ones. Our friend at dinner said the pain and loss you feel is proportional to the love you had for him. I do feel bad for the people who just don't understand why we can't just move on, suck it up, and “get to work on God's calling for our lives.” Not sure they'll ever get it. When you love someone, really love someone, you give them your heart. Your commitment to always be there for them, to ALWAYS do what's in their best interest, and to never leave them or forsake them. I wanted nothing in life more than to be a dad. A good dad. You wouldn't believe the books I had read, before and after Joey was given to us (born)....the small group studies at church on fatherhood I had gone to...the literally stacks of journal notebooks I have in my office, filled with my handwritten notes from books by Eldridge, Morley, and Dobson, on how to be a dad that God will be proud of. Nobody wanted to be a good dad and took the job more seriously than I did. I can say from seeing it first-hand, no one wanted to be a great mom than my wonderful wife. Why did this happen? How? Of course, there is some solace in knowing where he is and that he can't suffer any more. And we know we'll see him again. Certainly, knowing how happy he must be in heaven makes us smile. But we are here. This is now. And as long as I'm alive, I'll be without my son. My family tells me that when I was little, I was always laughing and having fun. That every picture in our albums from childhood shows a big smile on my face. I do love to have fun and always have pushed the envelope when it comes to pursuing it. My body has the broken bones and neck, a four level spinal fusion, and scars all over to prove it. I told a buddy of mine the other day, when trying to explain how I felt (he asked), life just isn't fun anymore. The joy is gone. Oh, I can put on a happy face with the best of ‘em, but on the inside, we are still very torn up. I am not too proud to ask for your continued prayers.
I changed Joey's "My Story" on this CaringBridge site. Elizabeth's been after me to do this for some time. We are excited about TEAM JOEY and the kids who are and who will be touched because of Joey’s amazing heart and vision. We did our first "Lego give" at Peyton Manning Children's Hospital a couple of weeks ago, and RileyHospital is next week. We are excited. Joey would have LOVED shopping for the kids, handing out the sets, visiting each room, and praying for the kids. He was so much younger in “years lived” than I am but about 50 years older than me in spiritual maturity terms. What an old soul.
I also wanted to let everybody know that, as far as updates for TEAM JOEY and Heroes Foundation, you can find us on Facebook. We don't have to be Facebook friends for you to "like" the TEAM JOEY Facebook page and receive that latest updates. I know there are some circumstances, HIPPA considerations, professional restrictions, and other good reasons where people can’t be FB friends, you can still plug in to the TEAM JOEY page. We are contemplating a TEAM JOEY website; but frankly, most people communicate and get a large part of their social information and interaction from Facebook. I think, all Facebook asks for is just an email address. And they never send you anything. It's about as safe as could be, YOU control what is shared. Get an account, and follow TEAM JOEY on Facebook! Look for: “TEAM JOEY, A Heroes Foundation Program”
Many have told me that I should continue to blog on here. It got me through some really difficult times, and I'm sure would prove therapeutic now. I gotta be honest, I wasn't gonna say all that tonight; I was just going to sort of point everyone to the new Facebook page. We'll see how things go moving forward. Living without Joey is really tough. Some really thoughtful families and friends invited us over for Easter. For several reasons, we just wanted to kind of hole up and rest and shut the world out on Sunday. We started off strong, then there were TV sermons and shows about Easter, and then the memories of past Easters...nine of them…and I found myself sitting alone on the couch, holding an 8x10 of him, just blown away...he is really gone. This is permanent. I can’t hug him, or rub his bald head, or talk to him, or hear his laugh or him singing the Ninjago song. We used to have some of the most amazing talks. He would ask me questions that were so complex and deep, that I swore I was talking to an 80 year old man. All that said, I AM grateful for Easter because it is truly the hope that I have that I'll see my buddy again. I would be lying, however, if I told you it was a good or easy day for us.
In a day and age where everybody’s selling the illusion of control, I knew this posting wasn't going to inspire anybody. But I had to be honest, and I do thank you all for asking about us, for asking us to continue to share our journey, and, most of all, giving us the space and grace to grieve. We do, still, have MUCH to be thankful for. At the top of our list is all of you. Talk soon!