"It feels like chaos"

Today's title is from the song 'Whatever You're Doing' by Sanctus Real

Time to face up
Clean this old house
Time to breathe in and let everything out
That I've wanted to say for so many years
Time to release all my held back tears

Whatever You're doing inside of me
It feels like chaos but I believe
You're up to something bigger than me
Larger than life something Heavenly

http://www.youtube.com/watch?v=06AgY5Xoavw

I haven't even picked up my guitar since my son's funeral, when my wife and I played the old hymn "What are They Doing in Heaven Today" at the service - it's been sitting on the floor of the basement, along with all of his stuff from his college dorm and his room here. It's been over 6 months now, and it was only today when we heard that song on the radio that I thought "I want to learn that - and maybe my wife and I can play it in church sometime for special music".

That's a huge step for us, believe it or not - to even think of doing something like that again. Music was such a big part of his life, and it was something we shared. In many ways, I felt like he helped keep me from just being another 'old fart'. We listened to Audio Adrenaline, Jars of Clay, Relient K - and then on to P.O.D. and Toby Mac - stuff I probably wouldn't have really considered had it not been for him.

So when we heard Whatever You're Doing for the first time, it reached in and pulled me out of a very bad place - a very sad place - and reminded me of what he always used to say about his ongoing struggle with cancer - "It's not about me"....what an amazing young man he was, and what an example he left us.

Friday we had the final Schwartz round at the hospital - for those who don't know:
http://www.theschwartzcenter.org/programs/rounds.html - it is a safe place for hosptital staff to gather and talk about how they felt about a patient's care, and how they think things could be better for everyone. This was the second round concerning our son, and the third in an ongoing fall series about adolescents and young adults with life threatening illness.

We have been lobbying to have them start an AYA program at the hospital (Adolescent and Young Adult) modeled on the Lance Armstrong Foundation Young Adult Alliances work. Amazingly, we learned on Friday that many meetings and talks have already begun on this very issue - and in no small part because of who our son was and how he touched so many people at the hospital while he was there. And of course, our own efforts to bring these things to their attention - but it was their love for him that made it so that everyone wanted to work together to make this a reality. It will take time, but folks on both sides of the fence - pediatrics and adult oncology are on board and see the need to help the transition (as their paper now says) "...from their status as a child needing parental input around life choices to the status of an independent adult.

Everything from working on ways to provide Internet access to young people whose lives revolve around that medium of communication, to helping to explain the difference in care and treatment protocols. People were amazingly grateful to us for coming and sharing our perspective, and encouraging them to move forward. It is a wonderful legacy that he leaves - and most amazing, his name isn't 'officially' a part of it as some kind of 'memorial' - but it is something everyone owns and is excited about simply because of who he was to them.

I'd be lying if I said it wasn't hard to be there - but there seemed to be a special grace surrounding us for that hour. Later at home we were very sad again, and even tonight as I listened to the song, tears started falling again. Working on the house is the hardest part - I want so much for us to finish the room he dreamed about having for visitors, but each step is full of emotional weight.

Our counseling sessions are going well - one almost 'silly thing' we came to last week was that it would be OK to get rid of his car - perhaps give it to one of his friends or someone who could use it - and that it wouldn't be disloyal to him to do so. It holds so many memories of him. He loved that car so much, but he held it lightly - there was at least one other person in the dorm who had a set of keys and if anyone needed a car or a ride someplace, they knew they could count on him. That's just the way he was....

Sometimes people warn you that if you lavish love and attention on your child, they will just end up spoiled and selfish - but in his case, I think nothing was farther from the truth. It is as if he typified what God tries to make us understand - that He loves us and gives us all things, so we can freely give and share. I often wonder if kids don't become 'spoiled' because perhaps ALL they get are material things and lack the love that goes along with it, so they are never satisfied; because of course those things can never fully satisfy. Its worth thinking about anyway - he was so generous and open - but he had boundaries and knew when to say no, and when he was being 'played'. Its so hard to believe someone like that is no longer with us on this earth....

Anyway, just about a week before he knew he had relapsed again, his car was stolen out of the parking lot at school. The police found it later, but by then he was back in the hospital, as it turns out, never to leave. I told him we'd found the car, and that the insurance company was getting it fixed (it was damaged in the theft) and he just looked at me and said "The car is the least of my worries right now".....and now finally, I understand that it is time for us to let it go as well. It is a beautiful, fast car (an Acura Integra) but it needs a lot of work - body work, muffler work, and some other minor repairs. As our counselor reminded us, it's a lot like he was - sharp, fast, cool - but also falling apart and in need of serious work.

So, we'll call some of his friends and see if anyone can use it - maybe someone handy like he was who will work on it and lovingly get it back into better shape.

Its been such a long time since I've been able to trust God, or to even expect that He really understands how I feel - but with that one song I am beginning to hope again; and hope is the most important thing to have. Losing hope is why people choose to end their lives, or at least live quiet, desperate lives of darkness and sorrow.

So thanks God, and for your servants Sanctus Real - sometimes, you just never know when the next grace is going to come from - but keep your eyes open, it's always just around the bend waiting for you to notice it. (or for you old Deadheads - as Phil Lesh said in Box of Rain'...maybe you'll find direction, around some corner where it's been waiting to meet you..')

"Time for a milestone
Time to begin again
Reevaluate who I really am
Am I doing everything to follow Your will
Or just climbing aimlessly over these hills
So show me what it is You want from me
I give everything I surrender...

To Whatever You're doing inside of me
It feels like chaos but somehow there's peace
It's hard to surrender to what I can't see
but I'm giving in to something Heavenly"

Amen.

Please keep praying for us - it's still a very long road ahead.....