Bradley and I were coming back home after our second trip to get Serial casting done. Out of the blue, Bradley asked me, "Mom, have you bought me a grave yet? I said, "No." Have you bought me a casket?" I said, "No, why do you ask?" He said, "I was just wondering, that's all." It just breaks my heart that these things are going through his mind. I guess he knows that his lifetime will probably be shortened by this disease. I was so stunned by these questions, I am realizing now maybe I should have talked to him more at the moment. I don't want him to dwell on these things and I certainly hope he doesn't think anything will happen soon.

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Lisa,
I think that just because you didn't discuss it in detail at the moment doesn't mean you can't revisit the subject. My oldest daughter is 9 (and mature for her age) when we first learned of Riley's diagnosis we told her a little and waited to see how she would react before going into more detail. Although it is not Riley asking me questions, it is his sister, I reacted the way you did when she did asked the tough questions about death. I gave myself some time to think about how I wanted to approach her questions and the best way to respond. I later told her that I had been thinking about her questions (and that I know it is weighing on her mind) and I wanted to talk to her more about it. She was more than willing to bring it up again. I think that we are more afraid of the questions and the subject than our children are. I'm not sure that having a 'right' answer is as important as just letting our kids talk about how they are feeling about it. It may not be the best method, but when she asks tough questions like 'Will Riley die' I usually respond by asking her if that is a fear and what she thinks about death. This way, I am not giving a concrete answer (which I cannot possibly know the answer anyway) I am just allowing her to talk about it and letting her know that it is ok to talk about with me. Although it is always against my best judgement to 'give advise' I think that Bradley will be relieved if you bring it up again and ask him what he is thinking and feeling about death. It is just a thought, but he may be more worried about your feelings than his own.

I hope this made sense. And I hope it helps to know that you are not alone addressing such a tough issue.

Rhi
Thanks for sharing your thoughts and experiences with me. Tonight I asked him if anything was bothering him and he said he was worried about what he would do when Stephanie gets out of high school and he is there all alone. (she has 3 more years of high school-the buildings are also close together so they see each other some during the day and ride the bus together).

I don't know if he forgot about the questions he asked earlier.....or if he sensed at the time I was uncomfortable about the questions he asked and didn't want to bring it up again. Maybe I should just bring it up when there is a good moment to talk, let him know I have thought about the questions he asked me and wanted to know what his feelings were.
Lisa I think you handled it wonderfully. I have had to discuss these things with Christopher my oldest one that passed away in December 2007. He knew at any moment any of us could be taken away. Christopher knew from an early age everything that was happening to him, because I let him, make alot of choices (choices that are hard to make) am I dieing, my answer yes, but we all are and any of us could die at any moment, (car crash ect...) that would open the question about DMD usually, and we would discuss the prognosis and also the most recent research that they have been doing. I always would just out right answer his question, but always end with a positive. Even when Chris got older, we discussed his burial and explained the choices. Grave or Urn, Chris choose an urn and wanted it to remain at home with us, that way he knew he would always be here with us. So we got him a dolphin urn and this is where he is. Just remember the way you handle it will be right for your family. I just recommend us parents do talk to them when they are older, I have been around parents that haven't told their children the truth and they have had real emotional issues, because they were not upfront. You just have to answer their questions, and give more details when you and they are ready. I hope this helps you, I only shared the information about Chris, to let you know how I handled it, I hope it was not to much information for you.
Take care.
Tanya,
It's not too much information. I appreciate hearing how you handled things with Christopher. We have talked about death in general for all of us that any of us could die anytime. He is aware a few of his MDA camp friends have passed away also. So I know he is aware of those things and that he could die earlier than the average person.
Reading this makes me so sad and angry! (not at you Lisa!!) No mother or father should have to discuss this with their child! It is just so unfair and so heartbreaking. Lisa, I think you have been given some great advice. I think it is important to take your cues from them and tell them what you feel is appropriate at the time. I like the idea that it is "okay" to revisit a topic--if I blow it the first time, which I'm sure I will, I can bring it up later--it doesn't have to be a one shot deal. I know if I was the one with dmd, I'd want to have my questions answered, and not be all alone with just the thoughts in my head--I would want someone to be "in" it with me--sad, happy, scared, etc. I just don't want to give too much info. when it isn't what they really want. Wasn't there a post on the old msg. board about a kid who said he hated having weak muscles, and the parent was thinking, yikes, not ready to discuss this, and the kid hated it b/c of something like having to go the the doc. so often. Walking that fine line is going to be difficult, so am so grateful for all of the advice given to help pave the way.
Tanya, I think it is wonderful that you had such an open relationship with Christopher and were able to discuss things with him that were obviously weighing on his mind. I hope I am able to be strong like that for my son! I am so sorry that you are now having to live through the things you spoke of. I am amazed at your ability to share and help others--very inspirational! Thanks for sharing.
Jill
Thank you, I am sure you and all us parents will be strong enough when it is called upon you to do so. I never thought I could discuss things like death with anyone for that matter, much less children. But you will be surprised how easy they (the boys make it). I like your thinking, that if I have DMD I would want to know, and if people tried to hide it from me it would make me more angry than if they would just share it with me. The crying, screaming, caring are all part of helping them through it.
My boys and I actually play a game, where when really upset by it all, we look at eachother with teeth clinch together like a monster, and Say real loud Muscular Dystrophy EGHHHHHHHHH!!!!!!!!. We do that about 3 or 4 times and feel so much better. I am glad Jill you thought me sharing my story with you and everyone is inspirational, because that is why I am sharing.
Here comes another epic tale from the Land down Under (I can hear the groans from here!)

Mitchell asked the same sort of thing this year "will I live to be 100?" As a result I sat down with him and we had the talk (a counselor had told me a long time ago that our boys ask the questions when they are ready to hear the answers....) we had already addressed this issue of “will I die from this” and given the answer we all seem to favour – “probably, but everyone does from something eventually – no-one lives forever…….” But now I realized to my horror that this shopping trip had just taken an unexpected turn, and Mitchell was at the point where he needed to know more, and I was going to have to have the talk I had been dreading for 4 ½ years.

Mick and I had been really skeptical about telling Mitch the "full" story of DMD, as we didn't want him to give up and adopt the whole "why bother" attitude - but then the counselor gave us a different perspective on it - she reminded us that by offering Mitch the whole truth, he would have a better understanding of why we did so much therapy, why he had to take his meds, why we were so intent on living for the moment - she even went as far as to say he may be more compliant with all these things once he knew the truth.

We were still skeptical but she added one last thing that I had not even thought of - most people diagnosed with a terminal illness want time to do the important goals they had set for their lives - she gently reminded us that there may be goals Mitch wants to achieve, and we had to allow him time to do it while his body was still semi compliant......

Since I had the talk with Mitchell he has not become negative, he has in fact done exactly what the counselor predicted (hate it when they are right). He is more compliant, setting goals and living life knowing exactly where he stands. He still even dreams about if he lives long enough to get married and have children.

So that’s our story. I don’t' think there is a right or wrong time to tell your children. Some families never have the talk, some like us, do it when the children are young enough that living until you are at least 30 seems "really old"

I also think that technology has taken a lot of the decisions away from us - now our sons can Google Duchenne, and find the gory details on their condition..... I just figured that if Mitch was going to know the truth, I wanted it to come from us, in a gentle but honest way, not the way his dad and I learnt about it - on a website that had at the bottom of it : "DEATH BY 20" – (which of course is now completely inaccurate)

Families have to make a lot of tough decisions when DMD enters their world, and there is no answer that is “one size fits all” but if you follow your heart, and do what you think is best at the time that is best option – seek advise, look at other opinions, but always make the decision that fits your family best –because at the end of the day, no-one knows your family like you do.
I forgot to update you all. Tom was alone in the car with Bradley one day and he brought the subject up. He asked Bradley what made him ask those questions. Bradley said he didn't really know. He just wondered. Tom asked if he was worried about dying. And Bradley said he wasn't worried. Tom told Bradley that any of us could die at anytime and we just have to live each day in the best way we can. He also talked about our Christian beliefs and how important it is to be ready because any of us could get into an accident or anything. He also told him we were doing everything we could to get him the best care and he told him there was a lot of promising research going on. Bradley said he knew that and he was okay.
Do any of you here have a son who is nearing the age of nine? I can't seem to find anyone who has a child this age whose just been diagnosed with DMD. Our son had few at best symptoms of this horrid disease. He ran slower than his peers. How could we have missed this? Our son never toe walks, does not fall down, runs - not too fast, but does run, jumps, swims, rides horses. He doesn't have trouble with getting up the staircase, although takes two feet per step, and gets up sometimes in gower and sometimes not. Someone please help me to understand why these symptoms NEVER showed up when Liam was four or five or six or even seven. He was diagnosed at eight!!!! I am still new at this game and all I wrote above was Liam before taking any steroids. He is now on Deflazacort, which, in my opinion, beats Prednisone ten to one. While on Prednisone, Liam was so so hyper and ate live a truck. He gained nearly four pounds in a month. Then we switched to Deflazacort and the hyper activity went totally away and his appetite is much more like normal. Liam still does all these things I mentioned before. But the difference is not night and day here. We see little changes in that he is a bit stronger when he wrestles with his dad and he goes up stairs faster. The biggest change would have to be in Liam's attitude. He now wants to try more stuff, it seems that his confidence is boosted. But Liam could do all this stuff before. Please HELP me understand this. I know I sound like a whimp and I am, but Liam is my only child and I love him to pieces, so much it hurts so badly at times. Do I still get him braces? Do I still send him to the best schools I can? I mean what is the point if I keep reading on the internet that DMD kids only live into early 20s? Since our son was diagnosed later, does that mean he will live longer? The best cure for me is to have Liam outlive me. :ast summer I watched both my parent die of cancer within three months of each other and now I get the pleasure of watching my son waste away. Will there be something to help further slow this progression in the next few years? I just don;t know how to handle this. All of our friends who come in contact with Liam just cannot believe he's got MD. Do I still hold the same hopes and dreams for him? When do the steroids stop working, one year, five years, 10 years?????
I have not been on this site in a month or so, but I know it's the best place to come when I am overwhelmed as I am right now!!!!! Any response would help about now!!!
Noreen
Lisa,
Mike ALWAYS used to ask questions when we were least prepared to deal with it. We were always exhausted, ready for bed or had had a glass of wine/beer. We have always been very open and honest and had to start preparing for the next possible question. Preparing and looking just a little ahead gives you and your spouse a chance to think things through together and have a gameplan prior to the questions.

Mike started out asking "Is this disease going to kill me?" Our response was that everyone dies, no-one really knows how long they have. It led to a really nice discussion on faith.
As he got older and became more mature, the questions evolved into This disease will shorten my life?.
Now it is more of statements. I do not want to outlive my younger brother. What do we tell Danny (our youngest, 10, does not have the disease). I do not want to have spinal fusion because I am more concerned about quality of life now., etc.
Sometimes the conversations are brutal, but now that he is 17 there is no trying to soften it. Andy had his big "oh shit" moment about 2 years ago. He does not discuss it with us too much, but has a great psychologist he works with. Both boys have built good relationships with psychologists which helps them get through the highs and lows. The expectation is not that anything can be corrected or solved, but to help the boys develop tools to deal with all of the changes which are a constant part of their life.

We started our youngest with a counselor last fall when he was 9. It has done a world of good getting him used to discussing his feelings. I do not believe he understands what is coming his way. It is going to be a difficult change going from being the baby to the only child. I am so glad we started him early talking things out.

Our approach has always been about being open and honest and prepared for the next steps without getting to far ahead.

Ed
Hi Irishgirl,

Our son just turned 10 a couple of days ago. He wasn't diagnosed until 10 mos ago. He walked slower than others and had trouble riding a bike but even my nurse friends didn't recognize his DMD symptoms. Even his ped, who had been there since birth, didn't see it until recently. I think that not seeing it is part of the nature of this terrible disease, along with Dr's who are sometimes focusing their practice on vaccinations instead of rare diseases. Sometimes our boys look more normal than DMD. I asked our neurologist, Kevin Flanigan at the Univ of Utah, if the "late onset" shows an opportunity for a better prognosis and he said he didn't know, no one does, because duchenne is extremely under-studied. While this completely shot down my wish for good news I still remain hopeful, and I examine the latest research weekly. The world of duchenne appears to be right on the verge of better treatments and nearer a cure. If you consider how long muscular dystrophy has afflicted humans - since the beginning of time - then zoom in to what is happening globally today it becomes clearer your son and mine stand the best chance ever of living longer more productive lives and perhaps even seeing a cure.

You are under a much more intense pressure cooker than some of us, since losing your parents to cancer! I can't imagine how painful all of this is for you. I am so sorry your parents are gone. I do understand how you feel regarding your son's health. Try to take it 5 minutes at a time, try to take care of yourself- for your son. In this painful time don't lose sight of dreams for your son, hang on to them tighter. Get your son his braces, send him to the best school you can, make his day a little brighter if you can. Try to savor every moment even the more bitter than sweet ones. It's all we have, all of us.

If you give up he certainly will and he's already got a load to carry.
take hope,
cheryl

irishgirl said:
Do any of you here have a son who is nearing the age of nine? I can't seem to find anyone who has a child this age whose just been diagnosed with DMD. Our son had few at best symptoms of this horrid disease. He ran slower than his peers. How could we have missed this? Our son never toe walks, does not fall down, runs - not too fast, but does run, jumps, swims, rides horses. He doesn't have trouble with getting up the staircase, although takes two feet per step, and gets up sometimes in gower and sometimes not. Someone please help me to understand why these symptoms NEVER showed up when Liam was four or five or six or even seven. He was diagnosed at eight!!!! I am still new at this game and all I wrote above was Liam before taking any steroids. He is now on Deflazacort, which, in my opinion, beats Prednisone ten to one. While on Prednisone, Liam was so so hyper and ate live a truck. He gained nearly four pounds in a month. Then we switched to Deflazacort and the hyper activity went totally away and his appetite is much more like normal. Liam still does all these things I mentioned before. But the difference is not night and day here. We see little changes in that he is a bit stronger when he wrestles with his dad and he goes up stairs faster. The biggest change would have to be in Liam's attitude. He now wants to try more stuff, it seems that his confidence is boosted. But Liam could do all this stuff before. Please HELP me understand this. I know I sound like a whimp and I am, but Liam is my only child and I love him to pieces, so much it hurts so badly at times. Do I still get him braces? Do I still send him to the best schools I can? I mean what is the point if I keep reading on the internet that DMD kids only live into early 20s? Since our son was diagnosed later, does that mean he will live longer? The best cure for me is to have Liam outlive me. :ast summer I watched both my parent die of cancer within three months of each other and now I get the pleasure of watching my son waste away. Will there be something to help further slow this progression in the next few years? I just don;t know how to handle this. All of our friends who come in contact with Liam just cannot believe he's got MD. Do I still hold the same hopes and dreams for him? When do the steroids stop working, one year, five years, 10 years?????
I have not been on this site in a month or so, but I know it's the best place to come when I am overwhelmed as I am right now!!!!! Any response would help about now!!!
Noreen
All I know is that we cannot predict the future of our boys, so don't live with the thought of 10 years from now, you have to focus on the here and now. One day at a time. I always get upset when I think of the future, that is why we need to focus on the here and now, it will kill you if you don't. I have already lost a Son and have two more to watch go through this. I will handle it for them, I have too, they are always looking to me for the answers and if I don't have them, I tell them I don't and let them know I will find out. I have cried with them and laughed with them, screamed MUSCULARRRRRR DYSTROPHY IS MEANNNNN WITH THEM TOO. Keep your chin up you can do it!!!!!!

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