I feel like I shouldn't even be saying this in print but I think I am angry at God. It seems like he cured alot of things so why can't he cure DMD? Plus, I got turned off by our local parish because they are always seeking out money for some project or something. When I advertised a couple years ago for Darius, no one bought tickets. We live in a good area of Seattle and the parish is very well off. But, it is like a club if you know what I mean. I am very disappointed with the lack of empathy as well. Does anyone have any suggestions? Do any other parents feel mad? We are Catholic and I feel guilty for even talking about this....but I would welcome imput from others. Plus, I know it's important for me to give my son the gift of faith to lead him through trials of life.
Char Burke

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You know there are times when I get angry at God....and I too understand what you mean when you stated it was like a club, all churches have their clicks too ( just like in high school years )....either you fit in their group or you don't....shouldn't be that way amongst people that call themselves Christians!

Even Christians that I have turned too in the church I used to attend regularly didn't understand the pain we Duchenne Families go thru...it used to bother me that they seemed to care for the cancer families more....and what turned me off was when I turned to our Senior Pastor for some inspiration and maybe a door to open to where some of the members could offer to come be with Adam to give me a break once in awhile as I was going thru a caregiver burnout....he said because I was living a sinful life is why I was going thru this rough time....excuse me there is such a thing as caregiver burnout and God didn't create it to punish individuals such myself and others caring for terminal children that he instilled his trust in us to care for......he create caregiver burnout as a sign to individuals such as you and me to let us know we can't do it alone and we need to reach out and be open to receiving some help....and we all are sinners whether you are a Christian or non-christian.....I wasn't having premartial sex, wasn't even dating anyone at the time, didn't drink, smoke do drugs....so, I couldn't see why God would want to punish me in such a way...so, I left the church.
I still plead with God and say when are you g oing to answer my prayers and the prayers of so many parents since Duchenne has ever been discovered and given a name....ask and you shall receive...in God's timing....you would think that it should have been answered in someone's life living with Duchenne by now.
I still tell God that I don't want to stay down here without my Adam, he is my only child and my life, I still cry at night ( I did last night ), I ask if you give the researchers that are working so hard to find the CURE the miracle they deserve for the long hours they have been trying to find the CURE for our boys, and just allow Adam to live longer even if he still can't walk I would take this. I would just like to see my son, get out of that wheelchair and walk besides me so, I can see how tall he is.
It is hard this Journey called Duhenne!
That's too bad, you should maybe search out a church family that is supportive and loving. I don't think I've been mad at God but I know that it is natural and it happens. My son was recently diagnosed so I am just getting started. My take is that the only reason we are on this earth is because of God and because He loves us so much and wants to have a relationship with Him. We have to remember that this life is only temporary, our lifetime cannot even compare to what eternity will be like. So our main goal in life should be to grow in the Lord and share His love and His message on how He loved us so much He sent His Son to die for us and our sins. We need to accept that we are sinners and that Jesus being sin-less took all of our sins upon Himself and took the punishment we truly deserve. So now that I have a different perspective of life and so will my son Noah, that we don't have lots of time here on earth and we don't want people to spend eternity in hell, maybe my son Noah having duchenne will be able to communicate God's message in a different way than someone without a disability.
You need to know that not all churches are like that...I will pray that you will find a supportive and loving church family. And know that when people and churches let us down, God won't...he will always be there to support us and love us with His unconditional love.
There are always going to be hypocrites in churches but not all churches are like being in a club and clicky-you need to find a supportive and loving church.
And I don't believe that God is punishing you or any of us. We live in a world that is very far from perfect, we have been given free will and that is why there are so many bad things in the world. And since it's not a perfect world there are terrible, terrible diseases. And I do believe that God chose special people to be parents to these beautiful boys with duchenne.
God is there and doesn't want to see us going through this, I believe He is sad and cries with us and for us and even better He is with us and can and will help us every step of the way...we just have to not try to do everything by ourselves, we must rely on Him.
When we rely on Him, He will provide the things we need, including a church family to love and support us, and help when caregiver burnout strikes. If we put Him (GOD) first in our lives, He will guide and help us and love us with His unconditional love.
So when people and churches let us down, He won't, He will always be there, even when we get angry at Him.
Amy Sienkiewicz said:
There are always going to be hypocrites in churches but not all churches are like being in a club and clicky-you need to find a supportive and loving church.
And I don't believe that God is punishing you or any of us. We live in a world that is very far from perfect, we have been given free will and that is why there are so many bad things in the world. And since it's not a perfect world there are terrible, terrible diseases. And I do believe that God chose special people to be parents to these beautiful boys with duchenne.
God is there and doesn't want to see us going through this, I believe He is sad and cries with us and for us and even better He is with us and can and will help us every step of the way...we just have to not try to do everything by ourselves, we must rely on Him.
When we rely on Him, He will provide the things we need, including a church family to love and support us, and help when caregiver burnout strikes. If we put Him (GOD) first in our lives, He will guide and help us and love us with His unconditional love.
So when people and churches let us down, He won't, He will always be there, even when we get angry at Him.
Thank you Amy and Cheryl for your responses. I know it's not God's fault that our son has Duchenne but it would be good if He could help us all out here with a miracle or two....I know He can because He sure performed many in the Bible. Remember the one where He challenged Abraham to give up his only son and then when Abraham was going to follow God's will, an angel came and told him not to. Man, I do not have that type of faith - I just couldn't do that. Thank you for praying for me to find a faith community. That means alot.
Char Burke
I some times wonder what God's big plan is through all of us, watching my 12 year old suffer more and more each day really takes a toll on our whole family. I feel like I'm a failure as a mother because I don't know how to do deal with some of the day to day issues. Not does my son just have DMD, but has ADHD, anxiety, slight autisim, and a major learning disability. My son Tyler has really had a hard time sleeping at night, trying to get comfortable in bed since he can't roll over or adjust his own legs to get comfortable he cries at night for me to come help move him. I get so frustrated since it wakes up my other children also. I just feel like I'm not doing a very good job, I should have more patience with my son, for he didn't ask to have all these things wrong with him, it's not his fault. I often ask God "why so much thrown at my son" Why does he have to suffer through so much, I just don't get it. My faith and family support is really the only thing that helps me keep going each day, but some are just so much harder than others to get through. I just wish I knew what else I could do and not always feel so frustrated with how demanding my son can be. Any one have some ideas on how to help make this any easier????
Holly
Hi Holly,

Our son is now 23, and all the emotions you are experiencing, I have learned are part of the journey. God does love you, and he loves Tyler very much. Unfortunately, we live in a broken world, and God's Kingdom is yet to be fully revealed. I'm at a loss on how to share with you the things I've learned so far in our "walk", especially without sounding "preachy". But this is real life for all of us, and sometimes we feel like David did in the Psalms "my bones are turning to powder". So how do we go on? When all seems the darkest, I've learned to offer the sacrifice of praise. It is a sacrifice because I don't feel it at the moment, and I'm angry and scared. But as I turn on look on the precious face of Jesus, and begin to list all that I have to praise and honor him for, I find myself lifted up and better able to minister to the needs of my children and my husband. Easy? No! Necessary? Absolutely. Perhaps you will gain a little comfort by seeing our son and read some of his thoughts. He has a MySpace page at www.myspace.com/zachnewman2007 . May you feel God's strong arms around you as He breathes your name.

Sandra

Holly Kimball said:
I some times wonder what God's big plan is through all of us, watching my 12 year old suffer more and more each day really takes a toll on our whole family. I feel like I'm a failure as a mother because I don't know how to do deal with some of the day to day issues. Not does my son just have DMD, but has ADHD, anxiety, slight autisim, and a major learning disability. My son Tyler has really had a hard time sleeping at night, trying to get comfortable in bed since he can't roll over or adjust his own legs to get comfortable he cries at night for me to come help move him. I get so frustrated since it wakes up my other children also. I just feel like I'm not doing a very good job, I should have more patience with my son, for he didn't ask to have all these things wrong with him, it's not his fault. I often ask God "why so much thrown at my son" Why does he have to suffer through so much, I just don't get it. My faith and family support is really the only thing that helps me keep going each day, but some are just so much harder than others to get through. I just wish I knew what else I could do and not always feel so frustrated with how demanding my son can be. Any one have some ideas on how to help make this any easier????
Holly
Sandra Newman said:
Hi Holly,
Our son is now 23, and all the emotions you are experiencing, I have learned are part of the journey. God does love you, and he loves Tyler very much. Unfortunately, we live in a broken world, and God's Kingdom is yet to be fully revealed. I'm at a loss on how to share with you the things I've learned so far in our "walk", especially without sounding "preachy". But this is real life for all of us, and sometimes we feel like David did in the Psalms "my bones are turning to powder". So how do we go on? When all seems the darkest, I've learned to offer the sacrifice of praise. It is a sacrifice because I don't feel it at the moment, and I'm angry and scared. But as I turn on look on the precious face of Jesus, and begin to list all that I have to praise and honor him for, I find myself lifted up and better able to minister to the needs of my children and my husband. Easy? No! Necessary? Absolutely. Perhaps you will gain a little comfort by seeing our son and read some of his thoughts. He has a MySpace page at www.myspace.com/zachnewman2007 . May you feel God's strong arms around you as He breathes your name.
Sandra

Holly Kimball said:
I some times wonder what God's big plan is through all of us, watching my 12 year old suffer more and more each day really takes a toll on our whole family. I feel like I'm a failure as a mother because I don't know how to do deal with some of the day to day issues. Not does my son just have DMD, but has ADHD, anxiety, slight autisim, and a major learning disability. My son Tyler has really had a hard time sleeping at night, trying to get comfortable in bed since he can't roll over or adjust his own legs to get comfortable he cries at night for me to come help move him. I get so frustrated since it wakes up my other children also. I just feel like I'm not doing a very good job, I should have more patience with my son, for he didn't ask to have all these things wrong with him, it's not his fault. I often ask God "why so much thrown at my son" Why does he have to suffer through so much, I just don't get it. My faith and family support is really the only thing that helps me keep going each day, but some are just so much harder than others to get through. I just wish I knew what else I could do and not always feel so frustrated with how demanding my son can be. Any one have some ideas on how to help make this any easier????
Holly
Holly,
I am wondering if a bed that has a special mattress like they use for people in the hospital so that they don't get bed sores would work. I have seen air mattress where an electronic device rotates the air or sand through channels so that the muscles don't get situated in one spot. This takes the pressure off one site - to avoid pressure sores. Also, have you had your son tested for sleep apnea....? Maybe he can't sleep through the night b/c of that as well. Just some ideas. Char Burke
God is not punishing any of us in anyway. This is something that just happened to us. If anyone caused the problems and illnesses we have today, it was the devil himself, I feel he tests us each and everyday, with whatever he can, and God just allows it to make us stronger, for the things ahead. I used to get angry at God, because I have had three with DMD, but hey, I would not be the person I am today without my children. Most people in my family, put their kids last or feel they can show them they love them, by the things they give them, not me, but who is to say I wouldn't have fallen down the same path, without my children to teach me what life is all about, and that is REAL LOVE. I feel God blessed us with these children and yes we do get care giver burnout I know that for sure. Your church should understand that. Maybe it is time to get another church sweet heart???

Cheryl Markey said:
You know there are times when I get angry at God....and I too understand what you mean when you stated it was like a club, all churches have their clicks too ( just like in high school years )....either you fit in their group or you don't....shouldn't be that way amongst people that call themselves Christians!

Even Christians that I have turned too in the church I used to attend regularly didn't understand the pain we Duchenne Families go thru...it used to bother me that they seemed to care for the cancer families more....and what turned me off was when I turned to our Senior Pastor for some inspiration and maybe a door to open to where some of the members could offer to come be with Adam to give me a break once in awhile as I was going thru a caregiver burnout....he said because I was living a sinful life is why I was going thru this rough time....excuse me there is such a thing as caregiver burnout and God didn't create it to punish individuals such myself and others caring for terminal children that he instilled his trust in us to care for......he create caregiver burnout as a sign to individuals such as you and me to let us know we can't do it alone and we need to reach out and be open to receiving some help....and we all are sinners whether you are a Christian or non-christian.....I wasn't having premartial sex, wasn't even dating anyone at the time, didn't drink, smoke do drugs....so, I couldn't see why God would want to punish me in such a way...so, I left the church.
I still plead with God and say when are you g oing to answer my prayers and the prayers of so many parents since Duchenne has ever been discovered and given a name....ask and you shall receive...in God's timing....you would think that it should have been answered in someone's life living with Duchenne by now.
I still tell God that I don't want to stay down here without my Adam, he is my only child and my life, I still cry at night ( I did last night ), I ask if you give the researchers that are working so hard to find the CURE the miracle they deserve for the long hours they have been trying to find the CURE for our boys, and just allow Adam to live longer even if he still can't walk I would take this. I would just like to see my son, get out of that wheelchair and walk besides me so, I can see how tall he is.
It is hard this Journey called Duhenne!
I haven't been on ppmd website in a long time and I'm glad I found this group. I hope my little insight on this subject might help. I have two boys with Duchenne's. Avery is 11 and Matthew is 8 and I do not know if my daughter is a carrier yet. No family history whatsoever. So why? I have asked why but I can't say that I have ever been angry at God but I know alot of parents go through this. There's really not point in asking why anymore because quite frankly, I don't think God is going to come out and tell me. I know there is a reason why I was chosen to be their mother...why they were chosen to endure this illness. And whatever the reason, I know that it has to be part of God's purpose for myself and my boys. But sometimes, when I'm feeling down and out..I like to wonder about those reasons. Are my boys here to serve as a muse to someone? Is their love for laughter and life in the face of such adversity going to inspire someone to BE that person we've all been waiting for to find the cure? Was Duchenne's the only way that my children and I would have found our way to our Heavenly Father and because of that I get to spend everlasting eternity with my children? Was I chosen to be their mother because God knew how much I'd love and care for them far before I even realized it myself? Will the sight of my boy struggling to hold his cup in a restaurant going to snap someone out of their own self pity and maybe save their life? You just never know. Whatever the reasons are, we were chosen to be their parents and they were chosen to bear this burden. But you know what? I'd rather carry this burden with them than to have led a life with no struggle at all. Because of this, they are amazing children and I'm definetly the kind of mother they love and are very proud of. Hang in there...I know it's tough but we are all family here and our prayers will always be with each other.

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