This feels like an inappropriate place to post this thread, but the "coping" section is gone, so I'm not sure where it should go.

I am having trouble reconciling the person I am now with the person I used to be. There are good things about how I've changed, to be sure - I don't get as worked up about the little things, try to enjoy daily life more, etc.

But on the flip side, I feel like my coping resources are already stretched so thin that as soon as something comes up - conflict at work, issue with the kids or the marrige, etc. I immediately feel like curling up the fetal position. I just feel fragile all of the time - I don't have the ability to take on additional stress because I'm already at my limit.

Does anyone else have trouble with this? How do you deal with it?

Thanks,
Mindy

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Mindy said:
That's very kind of you - I really appreciate it. I will definitely be in touch. What area of the country are you in?

I am in South Louisiana between Baton Rouge and New Orleans.
Mindy...you really deserve a big hug! {{{{{{{{{{{{ MINDY }}}}}}}}}}}}}}}}}}}}}}

Yes...many of us mom's will feel this way and it may be a long time and it may be a short time. It all depends who takes ownership of that feeling...you or the depression.

Its common for you as a mom to feel this way. And honestly, its nothing to be ashame of or feel guilty about it.

I suggest if you can, please go and talk to someone. Whether it be your pastor or a counselor. Sometimes, by talking to someone you may not know very well, can help you with those coping issues. It may be just having someone to talk to and have a feed back, like you are doing here.

Just know...you are NOT alone on this!
I know the feeling and all i can tell you is in order to cope and help the situation try to focus on what you have and what stage you are and enjoy your children and what they can do to the fullest as long as you can The worst thing you can do is start thinking ahead as far as the progression of the condition, it will drive you nuts, have always a positive attitude even if your heart breaks you are going to be their example of courage. Live one day at a time like if it was your last enjoying every moment. We have an advantage that other parents dont have we have time to care and show our angels the true meaning of love and commitment. I have being coping for the last 16 years with my son Ismael 21 and now with my grandson Gabriel 31/2 and it is very hard on everybody. But we need to step up and fight back and dont let this duchennes get the best of us dont let it be the center of your world deal with it and get well inform so you can help your son but live your life the best you can . In reality tomorrow is not promise to any of us and I have met so many parents that had lost children on car accidents or have being killed or died suddenly living them with regrets and emptiness. When you feel weak look into your'e children eyes and see their smile this will give you strength to go on don't let anyone feel sorry for you, you need encouragement not pity. The fight to a cure continues we have lost many soldiers but we haven't lost the battle and some sweet day we will end this duchennes. Keep the hope alive and trust in GOD if it wasn't for Him I wouldn't be able to write you all these. Pray a lot even when you're angry,on distress or despair there's power in prayer.

God Bless
Thanks again everyone. Happy Thanksgiving.
We are living during a time where we are witnessing a bio-medical revolution. What we used to call drugs is ancient technology. We live during a time were we can "play God", scary as it is, it gives us the knowledge on how we are built and how we can be fixed. I'm not sure if this is a good thing or bad even if it does cure my son someday, at what cost to our civilization - we don't know - and that is frightening. Will we engineer our kids, pick from a menu when we are ready to be parents? Will many generations of this kind of "ala carte" genetics cause the gene pool to deminish to a manageable number of genes so we all look and act alot alike? This is all feasible with the technology that will cure our kids someday.

On the bright side we may actually live to see the cure for Duchenne. Something that my first neurologist balked at stating a cure is impossible - that was only 2.5 years ago. Now people are realizing that technology is moving rather quickly and it is exponentially getting bigger as more is discovered - no different than the industrial revolution. The technology is being worked on from all angles, not just by Duchenne researchers, but cancer, diabetes, every genetic induced ailment feeds into this revolution. Another 2.5 years will be totally different than today, alot different, 5 years you couldn't even imagine it now what it will be like and what they will have discovered.

This is something that you can hope for, something that is not science fiction but fact, we will cure Duchenne, no doubt about it.
Hey Franco - always enjoy hearing from you.
Take care,
Mindy
Leave it to you Franco to pick me up on a really bad day when I needed it most:)

MarcosDad said:
We are living during a time where we are witnessing a bio-medical revolution. What we used to call drugs is ancient technology. We live during a time were we can "play God", scary as it is, it gives us the knowledge on how we are built and how we can be fixed. I'm not sure if this is a good thing or bad even if it does cure my son someday, at what cost to our civilization - we don't know - and that is frightening. Will we engineer our kids, pick from a menu when we are ready to be parents? Will many generations of this kind of "ala carte" genetics cause the gene pool to deminish to a manageable number of genes so we all look and act alot alike? This is all feasible with the technology that will cure our kids someday.

On the bright side we may actually live to see the cure for Duchenne. Something that my first neurologist balked at stating a cure is impossible - that was only 2.5 years ago. Now people are realizing that technology is moving rather quickly and it is exponentially getting bigger as more is discovered - no different than the industrial revolution. The technology is being worked on from all angles, not just by Duchenne researchers, but cancer, diabetes, every genetic induced ailment feeds into this revolution. Another 2.5 years will be totally different than today, alot different, 5 years you couldn't even imagine it now what it will be like and what they will have discovered.

This is something that you can hope for, something that is not science fiction but fact, we will cure Duchenne, no doubt about it.
Mindy, I am getting more bitter every day.I went through few stages of coping with DMD and now I get more cynical, more bitter, I isolated myself from many people contacts with, I find toxic. It scares me that probably I would be one of the best friends of my son for long and I have to stay healthy . I have to be manually busy ( laing mosaik in the batroom or digging in the garden, cooking )to keep my thoughts far from the future. I try to live 1 day a day , but sometimes my thoughts are running away from me far and then I feel that my life would be some day empty and that is scary feeling.I am angry on economy as I feel stack with some of our plans for Jacob's best options ( change the state but when still ambulatory) . I have to posponund for who knows for how long or give up.I can feed my brain little lais about how our life can be happy and is happy but just for short times . I have to reinforse the message often. As more reinforce , I feel more sad on the end of the day and I feel like nothing will ever stop that pain inside of me.I watch my son . like his life is so different than typical kid in his age and I feel so bad that he would have to go through all of this what DMD would bring. This pain never would stop.Sometimes I feel like is 2 of me. One happy living 1 day a day, gigling at work , smailing to teachers and mom's , smailing to my son and husband and then there is second of me , full of pain , with all that knowledge what future would bring.Many people are telling me that they belive that something would happend and my son would be o'kay and I put that nice smile on the face and I say that, yes of'course and I feel for moment to scream and then sad again.I reconcile my life more often.I am on track with many things many people would like to be . I have terminaly sick son and nothing would change this.I was changing chanels today and oI stop for moment on Susie Orman. She has that show now , that people are asking her if can afford to get something they want and she tells them if they can afford. There was one guy asking her if he can afford to take his 9 years old dog to Korea to clone it for $ 100 000. Do you know what was my impression? We human kind try to find other life in the space , other planets with little green people or big and blue. We do not have to looking for in the space. Different life is arround of us , in every single house on this planet.
I wish I had an golden ticket for you because I would take one too. My son is in his 20's and not had the best of luck with health issues.

As I am typing I am avoiding him... I HATE that... but I get so angry with the situation that I take it out on him. I realize this isn't fair, but tell me one thing about this disease that is.

Mindy... best of luck... because I think at the end of the day that might just be what it comes down to... Luck.
I know we've all said it and know we realize it, but I have started living life more to the fullest. I am planning more vacations, we stay up later especially on weekends, I play the WII with the kids (I didn't use to play video games), etc. I try and actually need reminded at times that today could be the last day for any of my friends, family and loved ones. Tell folks how you feel, kiss them tons, give big hugs, give them gifts if you can, etc. A man that I work with lost his young wife the other day and almost lost his 5 year old son as well. The son was in very critical condition. A tree fell across the road onto his wife's car, a complete freak accident which probably only happens very few times. It was a beautiful evening and they were returning from a party, the son decided to go home in the car with mom and the 11 year old girl, went with dad in his car. The son did make it, mom died instantly and now, a man and his children are without mom. So, as I said, we just never know what our time will be, but what I do know, is that we have a chance to live every day to the fullest and to be as happy as we can for our children. I cry too and certainly am more emotional, but we all have to keep the strength and faith and keep up the prayers so that every year brings more help towards ending this horrible thing that our boys have. Kelvin can of course drive me crazy at times, straightening his socks 10 times and taking his shoes off each time to do so and when he acts out, but, I need reminded of what is wrong and reading postings on here is what keeps me sane. Thanks to all. Michelle
David,
Our son is almost 13, but I understand what you are saying. there are days that we get angry with Justin and avoid him to not take the anger out on him. The anger is never about HIM. Its the anger and frustration at dmd and what it is doing to him and our lives! We have to take the time to avoid him and get back to the place we need to be before we can be around him again. We get frustrated more easily some days than others. there are days when you sit down to eat or watch a movie, or just finally manage to sit down after a long day, and he needs something. He needs a drink or to be put on the toilet, or a game or a book. The days a stomach virus hits and it isnt easy to get your 110lb son on and off the toilet fast enough, or when they cant hold themselves up to vomit in a bucket. When you are running late in the morning and you still have to take the time to dress your son, put the sling under him and get him in his chair, shoes and socks on and so on.....Dont get me wrong, I will do this for the rest of my lifetime to have Justin with me, but it gets to you. You get tired and cranky, and rundown and frustrated. DMD takes so very much away from you and it doesnt stop taking it. Its like the "hunger" of this disease cant be stopped and no matter what you do, it just keeps marching on, sometimes slow and sometimes fast.

Having said that, we just take one day at a time. There are plenty of good days and days of no frustration or sadness. Thise bad days can just be hard and long sometimes.....

anyway......just keep moving forward!

--Samantha
David and Samantha - I appreciate your honesty. I feel the same way, sometimes, about the avoidance, and my son is only 5. It's good to know that I'm not the only one. There's a piece of me that knows that I'm trying to avoid the pain, not just him, but I still feel guilty about it.

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