Confused
My son was recently diagnosed with DMD. It has been very hard on my family and also Ryan (my son). But today was the hardest of all days, my son asked me today if he was gonna be in a wheel chair. I didnt know what to say and I still dont as if it wasn't hard enoug to recieve the news of his diagnoses but how do you tel your son yes baby one day that will happen. my heart broke all over again. I need to know will I ever find peace in this will I ever stop blaming myself or always wondering why me why my baby. Any advice would be great.
Replies to This Discussion
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Permalink Reply by Sherri Looper on
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Hi Jennifer, I am so sorry to hear about your son's diagnosis. How old is your son? He sounds likes he's really smart. Sometimes they handle things or information better than we do. And who knows when he may enter a wheel chair, they are making strides in research and development all the time. As for guilt and feelings of helplessness, you've come to the right place. This is an awesome website, with people fighting the same feelings and fighting for our children. Please just know there are others who know what your going thru. We are all here for you. Hugs!
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Permalink Reply by Andrea Cleary on
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Dear Jennifer,
You are still in the shock of the early phase. It does get better, but it's a roller coaster ride of ups and downs and sudden swerves around corners that you didn't see coming. Hang on! You are allowed to feel and think anything that arises, and you are not bad or weak because of it. As the shock wears off you will come to see all the paraphernalia that comes with DMD as aids to help our sons live their precious lives to the fullest.
The tough questions they ask us don't always have to be answered entirely on the spot. I think of it as an on-going conversation, where we can bring up other aspects that come to mind, even weeks later.
When our Simon was 7 (12 now) he asked me if he was going to die of Duchenne.Yes, I almost had an instantaneous heart-attack! I told him that there was research going on all the time, but that because there was no cure yet, it meant that he would have it for all his life, that he would die with it (because it was right in his DNA), not necessarly because of it. I pointed out that people with cancer die sometimes, despite there being treatments available. He was satisfied with that response. A few days later we discussed how none of us know when we are going to die, that I could be hit and killed by a bus on the way to work that morning, and so the important thing was to live and enjoy in the moment. Now our son is at an acceptance level where he says things like, "When I have to use a wheelchair", or " my wife and kids will have to help me". He's not going to let the details stand in the way of his living.
The guilt part really sucks. You are not to blame, no one is. It just is what it is, and may seem like you are trapped in a nightmare, but one day soon you will come to see it as a beautiful and tender learning opportunity for your family.You will deepen your connection beyond your wildest (good) dreams. Why not you? Why not us?
Blah, blah, blah.
It gets better, and you can do this Jennipher (I like the spelling).
Take care of yourself, stay in touch and stay in the moment as much as possible.
Andrea
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I would love to help you . My son ,Jonah, was diagnosed April 3rd 2008 with dmd. Our lives have been upside down ever since. My youngest son ,Carter, was just diagnosed on August 26 of this year. I can only tell you my experience, although my bet is mostly common among dmd parents, is tragedy. I thought I was coping but knowing for four years now that I really haven't been.( i.e. crying everyday is not coping or healthy). I have decided to get help dealing with it and have found a wonderful doctor. I could write you a book of what we've been through in the last four years , not sure it would help though. You didn't say your son's age, but my son is going to be thirteen in October and is just starting to use a scooter. I know it's hard to deal with the questions and any help I can give you I would be more than glad to. Just remember it is nobody's fault and you still have today.
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Permalink Reply by Jennipher Poffenberger on
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Hi Sherri,It is so nice to wake up this morning with responses to my post. My son Ryan is 6 and yes he is very smart. I am very glad to be on here with you all. I talk with friends and family about my feelings and my pain and they say they understand but I always feel like they dont completely get it and now reading that other people really are out there and understand it's such a good feeling of relief. Also very sad to know that so many are effected by MD.
Andrea,
I feel as if you took everything straight from my head. This is very new to me I have a feeling things will get easier for me once I acctualy accept that this is real life. Every day is different some are hard like when I wake up and forget for a moment that this is really happening remember it is real are my worst days as if I just found out all over agian. like I said to Sherri I am so glad to be on here and know I am really not alone and there are people who have made it past where I am right now and that gives me hope I can do this. For that I thank you all.
Bob,
I am so sorry to hear about your sons. My son is 6. We just found out in July about Ryan. I also have another son who is almost one and I am getting him tested next month. It is very scary. I have not done genetic test yet $$. But MD does not run in my family so I am praying that its is just a "fluke". good luck to all of you
Sherri Looper said:Hi Jennifer, I am so sorry to hear about your son's diagnosis. How old is your son? He sounds likes he's really smart. Sometimes they handle things or information better than we do. And who knows when he may enter a wheel chair, they are making strides in research and development all the time. As for guilt and feelings of helplessness, you've come to the right place. This is an awesome website, with people fighting the same feelings and fighting for our children. Please just know there are others who know what your going thru. We are all here for you. Hugs!
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Permalink Reply by Sif Hauksdóttir on
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I am so sorry to hear about your son.
My 3 year old was diagnosed a month ago, and my younger one who is 2 was diagnosed 3 weeks ago.
This is hard and i just wanted to send you a hug!
I have already told my son once when he saw a wheelchair on tv that one day he would get one, and i tried to sound excited, like it was a good thing.
This is not in any way your fault, there is nothing that you could have done diffrent! Hugs to you and if you want to talk or anything you can talk to me. the very very best of luck to you and your family!
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Permalink Reply by George Lossmann on
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My sons were 3 and 1 when we found out that they have DMD, that was 26 years ago, they didn't even know what caused it yet. We have come a long way in that time, I think your sons may not have to experience the worst effects of this disease. One thing I do not regret is not letting the disease slow us down, we gave our sons as many experiences that we could manage, our life would have been different without DMD, but we also met and experienced love from people we would not have. My sons are very optimistic about life and were planning life like any other person , I think that our optimisum rubbed off on them. We can win this battle!
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Sif, So sorry to hear about your sons. and thank you for responding it is in an odd way amazing to not feel alone anymore and that addvice is just a mouse click away. thank you
George, how are your sons doing now if you dont mind me asking? My son is 6. Is there any addvice you can give me? We are still in the first stages every visit is something new, recently I met with a genetic counseler and I still have to do genetic testing just dont have the money for that yet.
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My oldest son Michael passed 2 years ago at 26. Advice, I would say to reach out to as many programs as you can, depending on what is available in your state. We signed up for a program that took us 10 years before we were able to get on but it paid us $1500/mo for each, which came at a time when we needed it for supplies and equipment. Get involved in a local MDA clinic, they have doctors that can give you prescriptions for therapies and whatever they need for there ages. My sons loved the camps, it was achance to play with kids and the counselors were great, we still keep in contact with a few. Be vigilant with your school, my sons both had school supplied aids, they also supplied physical therapy. Your eligible for Make-a-wish, or charity, we had a golf outing to help buy a van big enough for two wheelchairs. Hope this helps a little,
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Permalink Reply by danielle on
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My son is 7 and he was diagnosed at 4. Right after he was diagnosed i went thru thinking it was all my fault bc it came from me. I blamed god and everyone else. But now i realize all that matters is that my son is happy and healthy or as healthy as he can be. He uses a walker now and has braces. The only advice i can offer is get involved and be ur sons best friend. But don't let him give up trying.
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George so sorry to hear about your son. I am slowly becoming more involved not to sure what is all out there. Im in contact with the MDA andI have applied to make a wish and heard back just waiting to hear back again. If there is anything that could help I would loved to be involved. I live in a smaller town not to small just small enough that I have never met anyone localy that has suffered from of knows someone with DMD. my son seems to be ok he walks and runs but he gets tired and his legs start to hurt. I dont know when things start to get worse how long it takes? is it different for every boy? I have so many questions andhopefully soon willl be answered. Thank you so responding.
Danielle I know exactly what your saying I still feel the same way. Sorry to hear about your son also. Does he have a more worsening case? I just thought that boys could make its to older ages before needing assistive devices. thank you for your advice I am so happy to hear back thank you
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My son showed signs since he was a baby. He never crawled he never ran. We have been on predisone since he was 5.
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