Sometimes I find it so easy to let my “used to be” (you know, the me without God) speak to who I am now. I wallow in my shame, sadness and loss. That’s not the greif that God desires for us or that Jesus made possible for us. Again, that’s the old way and the [...]
Every once in a while I will share more about me and my family so this becomes more of a community. Today I want to share about Duchenne Muscular Dystrophy. My guess is you have no idea what it really is and it brings Memorial Day Weekend & Jerry Lewis to mind. After reading this, you will have a responsibility to share what you know, to get the word out so we can save our boys!
Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Duchenne results in progressive loss of muscle strength and is caused by a mutation in the gene that encodes for dystrophin. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties. Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation.
What’s my stake in Duchenne? In April of 2008 my 2nd oldest son was diagnosed with Duchenne Muscular Dystrophy. Caleb is 9 this year and an amazing boy! He’s smart, dedicated, loves math & video games. He really cares for the people around him.
Caleb goes to the MDA clinic twice a year as well as going to a pulmonologist and cardiologist twice a year. Last summer he got a wheel chair that he has progressively spent more time in as it has become harder for him to walk. There are some scary prospects for the future that have to be address but he is also full of life and we are all about living. There are also amazing things happening in research right now. Here are a few of the cool things going:
Finally, “We will end duchenne, but we have to do it together.” Pat Furlong, Parent Project MD.
My last post ended with the idea of having a testing ground for where God is growing me. I shared that often I was testing in unsafe waters and getting burned, but there is a way to test in safe waters.
The process of living in community with others began for me a few years ago, as I shared in this post, when I took the risk of sharing my issues with finances. That event is a good example of safe waters for risk. I met my friend, let’s call him Joe, through church. He was the leader of the small group my wife and I started attending at our new church and we had known each other previously through Boy Scouts. So, we had shared interests and had started the process of knowing each other through our weekly small group with our families and another small group revolving around mountain biking. Before I took the risk of sharing a big thing, we had both taken risks in small things – this laid the foundation.
When I shared with him about not handling my finances, Joe didn’t do any of the things I thought he would: laugh at me, make light of my situation, reject our friendship. He did do a few things that surprised me: he something, he understood my difficulties, he accepted me where I was. This was the start of a weekly meetings that have continued for the last 4 or 5 years where we have spoke into each others lives and been amazing support for each other through some difficult times.
The main lesson for developing “safe waters” is that you have to seek them out. You may need them right now, but if you have cultivated intimacy, transparency, memories in your friendships you will not have safe places to be yourself. Start today! One small risk can lead to all kinds of grace, understanding and good times.
One of my favorite authors and great minds of the world is CS Lewis. While going through some of his works I came across this quote:
Eros will have naked bodies; Friendship (Philia) naked personalities. – CS Lewis
It’s quite easy for me to think about the eros side of things – naked bodies, pretty easy for anyone to get the idea of nakedness and all that entails (I’m not trying to go down a sex, sex, sex road here), but Philia (friendship) doesn’t bring that same sort of image to mind, that image of nothing covering anything. Should it?
I say yes! For a person to be a “friend” there is a requirement of intimacy and intimacy means, Masks Off! If I can’t have a naked personality with my friends then I’m not sure they could be called my friends or rather, maybe I’m not able to take the risks required of friendship or choosing people who are able to take those risks either. Letting down my guard and letting all the things that I try to hide: weaknesses, the questions I have, not being up on the “cool” thing (sports, movies, etc), my inadequacies; is just what is required of both parties in a friendship. Not that full disclouser is required from the get go, not at all.
It is a series of risks that both people take and are either releaved that they were supported (or still liked) or dissapointed that they were let down. This process might be the norm for most people, but it’s a process I only really started to experience 4 or 5 years ago as I set out to share one of my most embarassing failings with a friend, finances. I just knew he would laugh at my inability to manage my own house and send me on my way, but I had to talk to someone, I was desperate!
He didn’t laugh, he understood. He didn’t send me on my way, he reached out his hand and pulled me up to a standing position. It was a milestone in our friendship, one that has brought on many more risks from both sides. Oh, and did I mentioned that we’ve both failed each other in those risks? We have, but more than those failures we’ve come through for each other many more times.
I’ll let part of a letter I received from a friend end this post:
But searching for the real is worth it because we want folks to be in relationship with ourselves, not with our masks anyways. And honestly, the closest people in our lives deserve that kind of transparency and truth. And we owe it to ourselves as well.
[note: blog post two for the National Blog Writing Month. Now I'm back on track.]
