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.
We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. – 2 Corinthians 4:8-10
This was the key verse in a sermon on Resilience at Mosaic.
I was caught by this verse from the very beginning because I so often think on just these things…
I am pressed on every side
I am perplexed
I am persecuted
I am struck down
I am defeated …
Whoa!! Is that really how I see my life? Not always, but quite often, it is. I must have a pretty hard life right? No, I have a good job, I have great friends & amazing kids and family. Is everything peachy? No, of course not, I live in the same fallen world as everyone else.
It really comes down to where I focus. Do I focus on the “bad deal” I’ve gotten or do I focus on the “amazing gifts” I’ve been given? Do I focus on what I can’t do or on what God is doing?
With that slight change in attitude I find:
I am NOT crushed . . .
I am NOT in despair . . .
I am NOT abandoned . . .
I am NOT destroyed . . .
I AM NOT DEFEATED . . .
Even through all of the pain and hardness of life I have victory because of Christ and even more. I have the privilege of carrying Christ crucified to the world, to all those within my sphere and even to be part of the “reveal” of Christ to those same people.
Not a bad deal if you ask me!
Mosaic is the church community where Erwin McManus (author of Soul Cravings & The Barbarian Way) serves as the primary communicator and cultural architect.
Mosaic is a community of followers of Jesus Christ, committed to live by faith, to be known by love, and to be a voice of hope. Most of their sermons are available through their podcasts. I encourage you to spend some time at www.mosaic.org and related endeavors.
As I think about the different factors that led me off the path God has been showing me it’s easier to speak to the externals (isn’t that always the case?), so I will force myself to deal with the internals first.
The work required towards healing wounds and walking the path God intends can be tiring, fearful and hard at times. With all the rest of life: family, work, friends, church, kids, etc., it can be easier to just look away and try to just make it through today. The short sightedness of this attitude is not lost on me. When I am exhausted and scared of what may be, it is an indicator that I’m attempting to climb a rock face by myself; without Jesus, without the fellowship He has put me in, without encouragement. Often, it has been with great reluctance that I have stepped back into the fray alongside brothers and sisters. Whether out of embarrassment or arrogance or fear the end result is the same.
I am one of those people that want it done now . . . I want to be done with this part of my journey (of walking into wounds and dealing with them) and on to the part that I am living out of wellness, taking my part in His story. This distraction is, maybe one of the worst. I get so caught up in wanting to be done instead of doing the work to be done, the work where I learn how to live.
Sometimes I just wasn’t ready for the next step. This isn’t really a hindrance in the way other factors might be, but it can still be frustrating because I want so much to be in a different place. I love that God has so much grace for me, that He does not want me to step out into what could be devastating for me and brings me along in His mercy. As I come to realizations and ask the question, “Why didn’t I see that back then?” the answer always comes clearly that I was not ready. This response is always acceptable to those walking with you and not being ready can become a hindrance for them. I’ve found that it’s best to be honest about where I am and count that my fellow travelers will be given peace – if not, then, in many ways, they aren’t walking with me and they are not allowing grace for my boundaries.
That’s a nice segue to the issue of how pressure from others have been a factor. The hardest part is I am where I am and just because others might want me to be in a different place doesn’t mean it should be. The best I can do is to communicate as best I can, give as much grace as I can and rest in the hands of my Savior and God. If those around me are working from their own expectations and can’t accept the path God has me on (and where I am on that path) there really isn’t anything I can do about that.
All of us have habits, memories, thought patterns ingrained in our brains. It’s the way we were taught by the hard things in this world; how we trained ourselves to make our way through life. Some of those patterns in habit and thought are positive traits we learned from our families, peers, faith, schools that help us to live productive, happy, open & free lives. Some of these patterns are what we “learned” from interacting with those same groups – for example, I learned that if I was “vulnerable” I would be taken advantage of, used, hurt, so I taught myself ways to avoid being vulnerable with anyone while still giving the appearance of being/having close friendships that I so deeply desired.
I have all kinds of rules that I have learned and taught myself. As God has been growing me many of these “rules” have been confronted and I haven’t always liked my “rules” being messed with. I mean, these rules have good reason to be here, they protect me from a very ugly world and have kept me safe for 30+ years. True, they have kept me safe – safety by surrounding me and caging me in – keeping me from the life that I was designed for. I remained safe from the things that could hurt me, but I was also kept from all that could help me – life, love, relationship, grace, intimacy . . .
My “rules” were learned from the frame of reference that I had to make it on my own. What God was teaching me is that I can’t make it on my own . . . He is there at the worst and best to help me through; He has sent/ is sending His strength, His Spirit, His people to hold me up, walk with me, to live life to it’s fullest.
When I began to understand what God was teaching me, that the rules were what I came up with to help me survive on my own, I was able to take responsibility for how I chose to react to external stimuli. Then I was open to hear what God was saying and to walk in the direction He was pointing me.
I am speaking in the past tense. I have been through this process, but I am also going through this process each day. Sometimes it is easier to see what I have built as a jail cell and sometimes it takes much more to see the prison around me. The process is me, trusting in God to sustain & support me, stepping out of whatever “cell” I am dealing with and taking a risk. Sometimes my rules have been confirmed, I think because I am testing without using discernment and test in unsafe waters. The time for testing in unsafe waters will come, but it’s not the best place for testing in the beginning. What is the best place for testing? That will be the topic of my next post.
The past three years have brought much change in my life, some really good times and some really bad times. Through it all, God has been working on me; sometimes in a focused area and sometimes in many areas at the same time. Often the new that God has brought me came with great struggle and pain on my part. Other times the “new” that has come was not in line with the path God had me on.
As I look back and review the struggle and pain, I think there are many factors that contributed:
Another factor in the pain were externals that were pushing me in areas I just was not ready or able to begin striding in. It has often been difficult for me to think beyond the end of the day much less a year, or five years in some of these areas. Yet, I was continually being asked to commit in these areas and didn’t have the tools necessary to respond.
We’ll spend the rest of the week exploring these factors further.
[note: blog post one for the National Blog Writing Month. Had it in my head Monday was the 1st - oops]
