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Permalink Reply by Thomas Hoel on May 7, 2012 at 7:41pm

Yes, like being in a fishbowl with everyone in the room watching you swim.  I get a little worked up over this subject because I lived it.  You have enough struggles ahead without allowing others, who can’t fully empathize the awesome responsibility you have on your shoulders raising a son with DMD, to second guess how you should be feeling, coping, or accepting. Or tell you how to care for Jacob.  Let the peanut gallery be judgmental and miserable.  You be positive, confident, and have hope.

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Permalink Reply by christopher lundy on May 7, 2012 at 7:52pm

Thanks, my wife told me about this site and she was
right. It feels great knowing there are other people
out there going through similar situations.

Thomas Hoel said:

Yes, like being in a fishbowl with everyone in the room watching you swim.  I get a little worked up over this subject because I lived it.  You have enough struggles ahead without allowing others, who can’t fully empathize the awesome responsibility you have on your shoulders raising a son with DMD, to second guess how you should be feeling, coping, or accepting. Or tell you how to care for Jacob.  Let the peanut gallery be judgmental and miserable.  You be positive, confident, and have hope.

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Permalink Reply by Jason G on May 8, 2012 at 11:43am

Right on.   This is by no means an easy road to travel, but the last thing my son needs is a miserable father!

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Permalink Reply by Anna Mossiat on May 19, 2012 at 5:59pm

I get the very same reactions from some relatives and from the medical professionals! Which is why i stopped telling people about Dylan's condition.  Because Dyl has virtually no symptoms yet and is still improving (he's only 6), I chose to "ignore" the condition for now, because of his current physical condition and because I don't see what talking about it all the time will achieve.  Most people around me keep asking me how I'm coping, and I reply, coping with what? Dylan has as of yet no limitations, does his stretches and takes his supplements. There should be nothing else to it right now except keep going with a normal happy life.  What happens tomorrow happens tomorrow. When I questioned his medical professionals, and was going to stop seeing them, people thought I was in denial.  When all I meant was that I was going to find other ones more competent. When we went for his last check up, a lady who runs a support group came to me with the almighty compassion talk, and when I told her I was looking to get another team of professional, she looked horrified.  2 days later, she called me to ask me how I was dealing with the whole, thing, was I in danger putting his health in jeopardy and that I could go to conselling!!! I replied again that I never meant for dylan never to see a doctor again and that I was doing pretty well actually!  Do what YOU think is best and forget about what people feel you should be like, you're completely right, why being miserable and waste whatever time we have? Be happy for today, enjoy your days and tomorrow is another day. It works for us anyway!

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Permalink Reply by Thomas Hoel on May 19, 2012 at 10:56pm

Hi Anna, I had to do a double look at your reply.  For a moment, I thought I wrote it and forgot I posted it!!  Amazingly similiar story to mine.  They are the ones in denial.  You are doing a wonderful job with Dylan.  It still fascinates me after all these years to see young boys with DMD blest with such loving and caring parents.

Anna Mossiat said:

I get the very same reactions from some relatives and from the medical professionals! Which is why i stopped telling people about Dylan's condition.  Because Dyl has virtually no symptoms yet and is still improving (he's only 6), I chose to "ignore" the condition for now, because of his current physical condition and because I don't see what talking about it all the time will achieve.  Most people around me keep asking me how I'm coping, and I reply, coping with what? Dylan has as of yet no limitations, does his stretches and takes his supplements. There should be nothing else to it right now except keep going with a normal happy life.  What happens tomorrow happens tomorrow. When I questioned his medical professionals, and was going to stop seeing them, people thought I was in denial.  When all I meant was that I was going to find other ones more competent. When we went for his last check up, a lady who runs a support group came to me with the almighty compassion talk, and when I told her I was looking to get another team of professional, she looked horrified.  2 days later, she called me to ask me how I was dealing with the whole, thing, was I in danger putting his health in jeopardy and that I could go to conselling!!! I replied again that I never meant for dylan never to see a doctor again and that I was doing pretty well actually!  Do what YOU think is best and forget about what people feel you should be like, you're completely right, why being miserable and waste whatever time we have? Be happy for today, enjoy your days and tomorrow is another day. It works for us anyway!

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Permalink Reply by Anna Mossiat on May 20, 2012 at 5:14pm

Thanks very much Thomas!

I have to say I feel so much better to see that i am not the only one to think that way, it was hard sometimes to convince myself i was doing the right thing, and sometimes I was wondering whether maybe I really was in denial! I have very close friends as well as my mother and my GP who share my attitude, which is a relief because if I do need to talk about things, they will not look at me with the annoying tilted head and sympathy pat on the back!  As for the others, I say NOTHING! At the end of the day it is just myself and Dylan at home so I decide how to raise him! :)  And I don't care what Dylan's "specialists" say, I strongly believe some form of treatment or even a cure will be out there In their lifetime. If they can get a paralysed woman to control a robotic arm with her thoughts only, I think we'll be ok!
Thomas Hoel said:

Hi Anna, I had to do a double look at your reply.  For a moment, I thought I wrote it and forgot I posted it!!  Amazingly similiar story to mine.  They are the ones in denial.  You are doing a wonderful job with Dylan.  It still fascinates me after all these years to see young boys with DMD blest with such loving and caring parents.

Anna Mossiat said:

I get the very same reactions from some relatives and from the medical professionals! Which is why i stopped telling people about Dylan's condition.  Because Dyl has virtually no symptoms yet and is still improving (he's only 6), I chose to "ignore" the condition for now, because of his current physical condition and because I don't see what talking about it all the time will achieve.  Most people around me keep asking me how I'm coping, and I reply, coping with what? Dylan has as of yet no limitations, does his stretches and takes his supplements. There should be nothing else to it right now except keep going with a normal happy life.  What happens tomorrow happens tomorrow. When I questioned his medical professionals, and was going to stop seeing them, people thought I was in denial.  When all I meant was that I was going to find other ones more competent. When we went for his last check up, a lady who runs a support group came to me with the almighty compassion talk, and when I told her I was looking to get another team of professional, she looked horrified.  2 days later, she called me to ask me how I was dealing with the whole, thing, was I in danger putting his health in jeopardy and that I could go to conselling!!! I replied again that I never meant for dylan never to see a doctor again and that I was doing pretty well actually!  Do what YOU think is best and forget about what people feel you should be like, you're completely right, why being miserable and waste whatever time we have? Be happy for today, enjoy your days and tomorrow is another day. It works for us anyway!

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