Replies to This Discussion

Permalink Reply by Rhiannon Traigle on September 16, 2008 at 11:44pm

Lori,
I think anything in this life can easily distract us from God or his will....we focus on material objects, our jobs, money etc. I often 'catch' myself running around feeling absorbed and distracted by life's worries and 'responsibilities'. DMD is just another one of those things that takes hold of our focus and causes us to lose sight of our devotion to God and his will. I too try to remind myself where my focus should be when I am obsessing with dr. appointments, PT, school issues, this site (lol) and everything else with DMD. I find that I get confused sometimes whether I am not putting my faith in God by taking on all the worry, but I have always felt that God will provide if we meet him half-way, so I go back to running around and obsessing again to almost 'show' God I am trying my hardest. Make any sense? I guess what I think is that it is not WHAT we are obsessing about or focusing on...but it is WHY. I try to ask myself, "Am I doing this for me or because I believe it is God's will for me?" So, maybe it IS God's will for us to focus on DMD? Maybe it's in his plan that we obsess about it so that we can not only change our own son's lives, but change the lives of others too. Let's be honest, there are thousands of people and parents with DMD that just accept this fate and do not focus on it, maybe we are the ones that are obsessing because it is in God's plan that we fight for them too. This is just the way I make sense of it. I think the true demon in DMD would be losing our faith.

On a personal note about you...I know that it is God's will for you to be a little more 'focused' on DMD than some other parents. When I first learned of Riley's diagnosis, I was so lost to say the least. My husband was questioning his faith and was very angry with God. I was searching like a crazed person to make sense of this and I felt a true dispair that I have never felt before...I had lost sight of God and his love for me a long time before this too. The first parent I had contact with was you. You were so positive and hopeful and when I hung up the phone I went on and on to my husband and family about all of the hope we now had. I felt like a weight had been lifted. You gave me (and all of my family) the hope we needed and although we were still aware of the reality, I knew I wasn't carrying this burden alone. When we hung up the phone I just kept saying to myself "Thank you God for sending her to me!" Now, I'm not a parent that will just sit and wait for my son to die like the doctors wanted me to. Now I have the power to make a difference in Riley's life AND you lead me to a place where I can do that with the support of others! My life and outlook on DMD completely changed the day I first talked with you. If that isn't the will of God, then I don't know what is!!

Permalink Reply by Gretchen on September 16, 2008 at 11:47pm

Lori,
You are definitely in my thoughts and prayers. As a life-long Catholic, I must confess that I've missed an awful lot of masses since I've had kids. (And while I'd love to blame it on the DMD diagnosis, it's more just me and our family dynamics, and it's my cross to bear!)

We have no control over our genetics and what blessings/challenges our offsprings are born with. God knows we'd not wish upon our children the obstacles they've been dealt. What we can offer them is strength, courage, support and a blisteringly raw sense of humor with which to deal with those cards. And God speed! :) Gretchen Egner, Wisconsin

Permalink Reply by Lori Ware on September 17, 2008 at 12:03am

Rhi,
Thank you for your sweet words of wisdom! Maybe you are right; my sister often tells me that it is amazing how God is using Seph and me through DMD. Maybe this is just Gods way of making sure that I remember HE is in control of this (and me) and that DMD is not in control of any of it.
Anyway, thanks for your thoughts, it certainly puts it in a different light.
Lori

Rhiannon Traigle said:

Lori,
I think anything in this life can easily distract us from God or his will....we focus on material objects, our jobs, money etc. I often 'catch' myself running around feeling absorbed and distracted by life's worries and 'responsibilities'. DMD is just another one of those things that takes hold of our focus and causes us to lose sight of our devotion to God and his will. I too try to remind myself where my focus should be when I am obsessing with dr. appointments, PT, school issues, this site (lol) and everything else with DMD. I find that I get confused sometimes whether I am not putting my faith in God by taking on all the worry, but I have always felt that God will provide if we meet him half-way, so I go back to running around and obsessing again to almost 'show' God I am trying my hardest. Make any sense? I guess what I think is that it is not WHAT we are obsessing about or focusing on...but it is WHY. I try to ask myself, "Am I doing this for me or because I believe it is God's will for me?" So, maybe it IS God's will for us to focus on DMD? Maybe it's in his plan that we obsess about it so that we can not only change our own son's lives, but change the lives of others too. Let's be honest, there are thousands of people and parents with DMD that just accept this fate and do not focus on it, maybe we are the ones that are obsessing because it is in God's plan that we fight for them too. This is just the way I make sense of it. I think the true demon in DMD would be losing our faith.

On a personal note about you...I know that it is God's will for you to be a little more 'focused' on DMD than some other parents. When I first learned of Riley's diagnosis, I was so lost to say the least. My husband was questioning his faith and was very angry with God. I was searching like a crazed person to make sense of this and I felt a true dispair that I have never felt before...I had lost sight of God and his love for me a long time before this too. The first parent I had contact with was you. You were so positive and hopeful and when I hung up the phone I went on and on to my husband and family about all of the hope we now had. I felt like a weight had been lifted. You gave me (and all of my family) the hope we needed and although we were still aware of the reality, I knew I wasn't carrying this burden alone. When we hung up the phone I just kept saying to myself "Thank you God for sending her to me!" Now, I'm not a parent that will just sit and wait for my son to die like the doctors wanted me to. Now I have the power to make a difference in Riley's life AND you lead me to a place where I can do that with the support of others! My life and outlook on DMD completely changed the day I first talked with you. If that isn't the will of God, then I don't know what is!!

Permalink Reply by Jill Keenan on September 17, 2008 at 12:44am

Lori, I think a lot of us probably fall into this "trap." I think you might be being a bit hard on yourself--you are focused on dmd b/c of your son--not some material item, etc. (An idol is an idol but still...)You are focused on your son and his well-being. We love our sons to distraction and want to do anything and everything we can to help them (and ourselves) in their battle with dmd. We want to be armed with the best and latest information regarding dmd and let's face it, dmd encompasses so many varied aspects from what vitamins to take to should I let my son run down hill or not?? There is so much to know and understand to be able to provide for and care for our children with dmd ---one of God's children. There has to be balance in all things but maybe you should look at it like God is pleased that you love one of his beloved sheep so much and are preparing for and laying the foundation for that child's future. Think how pleased you would be if someone were taking such good care of your son. How would you feel? So, give yourself a big ol' pat on the back!! I don't think you will have any trouble finding your way--for me, pride is the biggest issues to overcome and by admitting and seeing that you might need to readjust might just be the msg. He was trying to get you to see! And you have!! I have found myself being consumed by everything on this board, then I burn out and come back for more--like a cycle. I am fairly new to this diagnosis (coming up on a year Oct. 15) and I think you haven't known for ages either, right? Maybe this is normal for newcomers. Not that others who have known longer don't care but I think in time they must find better balance--OR maybe they've read everything under the sun ever written on dmd and now only have to keep up with the "new" stuff that comes out;) I think God is ever mindful of our hearts and will be patient while we put our lives in order--as long as we don't take too long. I think the slippery slope becomes dangerous when we forget God--and pull ourselves away from him. He is always there but we forget to call out to him. The farther we go, the longer and harder to hike back up that slope. It sounds like you haven't forgotten God but maybe you haven't been as mindful of your relationship with him as you used to be. You acknowledged that he is your only hope for health, peace, love and salvation so I don't think you are as far down that slippery slope as you might think. I am not trying to make light of something that is obviously bothering you and making you hurt. I just feel that God is truly a loving God and will not forsake you b/c you have slipped recently. I don't know what you did before to put God first in your life, but maybe if you set aside "X" mins./day (increase from there as you see fit) to read the Bible and really try to focus and learn from what you read, you might feel that your interest and your heart are more focused on what you want it to be. I heard a story about you from Dr. Wong regarding a patient of hers from overseas---this is one reason why I think you are being too hard on yourself. Looking out for others is doing the Lords work that he can't physically do himself--he relies on us to be his shepherds and I think your are one stinking good shepherd(ess??=)! I do wish you luck in finding what you need to feel as if you are putting the Lord first--I will be thinking and praying for you and for your son. Keep us posted! Jill

Permalink Reply by Deirdre Stinchcomb on December 14, 2008 at 1:22am

I know I am a little late in reading this post but I think it came at the right time. I, too, feel that I have let DMD become my idol. I have been so wrapped up in the care of my son and DMD that I have avoided God. I know God is my only hope. I read all the responses and have noted some of the advice and kind thoughts. Thank you all for posting on this subject. It is so good to have others to relate to.

Permalink Reply by Deirdre Stinchcomb on December 14, 2008 at 1:24am

I forgot to say..I have been dealing with this diagnosis for 7 1/2 years and it still takes up so much of my thoughts and time. Deirdre

Deirdre Stinchcomb said:

I know I am a little late in reading this post but I think it came at the right time. I, too, feel that I have let DMD become my idol. I have been so wrapped up in the care of my son and DMD that I have avoided God. I know God is my only hope. I read all the responses and have noted some of the advice and kind thoughts. Thank you all for posting on this subject. It is so good to have others to relate to.

Permalink Reply by Alejandra Lagffer on July 31, 2010 at 4:00pm

Hello Lori.
One day I asked God why did this happened to us then I fall asleep I dreamed that some one say to me look first for my kingdom and every thing else will come in adition. Another thing is that in my dream I saw my self reading romans 8 28 when I wake up I read romans and it says every thing will work for good for the one who love the lord but I suggest you to read it.
So I thought from all of this God will take the best.
And if I always look for him first all will come because it will come from him. The most important thing is his kingdom.