I guess some quick background would help first. My son turned 14 in Aug. Who knows why but he is doing very well for a boy with dmd for his age. He is still waking, uses a scooter in school, and his travel chair for distance. Last night after getting him to bed I was sitting watching tv. He yelled "mom" from the other room. It sounded kind of strange so I thought geez what's wrong. I went in and he asked if I could help him get his shirt untucked from his pajama bottoms. He then said " I can't do anything, I can't even get my shirt out of my pants by myself". I didn't know what to say, I just bent down and held him for a time. Of course a dozen things were going through my brain about what I should be saying or doing. Do I say " oh its alright, or something like well look at all the stuff you can do blah, blah blah, or tell him that I am there to help him. Does he want to hear all that? What does he need or even want to hear? I wanted to make him feel better but what on earth would I say that would make it better? Of course I'm also thinking as I'm holding him that this is one of many of these times that will come along the way. One of those moments that have come many times before, just slightly different. It just hurts so much sometimes. So after I held him for a bit I left and went in the other room and cried quietly, and thought about what I should have done different.

Thanks for listening,
Janine

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Replies to This Discussion

Hello! My son is now 17 and has been in a wheelchair since he was 8. In their lives frustration is always going to be there. I asked my son about your situation and what he said reminded me of how forgiving and understanding him and boys with duchenne are. He said: Mom it wouldn't have mattered what you would have said, you were there. There has been many times when I wondered why I didn't have the wisdom or the words to make him feel better. I have learned there is no right answer, we are just human!!
Take care!
Laurie
Laurie,

Thanks for posting what your son had to say, it does help me to feel better.
Janine,

Karen Jones here. How are you and your son doing? I just saw this and wanted to let you know that no parent really has the answers. We all are just trying to love and support our sons. There is no wrong or right answer. You know in your heart, that whatever you do or say is from the love and devotion who have for him.

I'm thinking of both of you and praying as well.
Jordan is 14 and still walking. He started high school 2 weeks ago and went to his first high school football game Thursday night with 3 of his best friends. They had a great time but he was completely worn out afterwards and very, very quiet. I asked him about it but he doesn't want to talk. I think every time he does something like that he realizes how his limitations affect the things he will be able to do and he gets angry that a cure hasn't been found yet. He's shutting me out and it hurts so much because I do everything I can to help him...I don't know how much of that is just typical teenager and how much is duchenne. My heart just breaks for him...being a teenager is hard enough and having this horrible condition makes it so much worse.
Hi Donna,
We have a 21 yo son who was a good football player and conf champ in the high hurdles for 3 years. Our 18 yo son Jacob who loves sports more than his brother went to all of his home games and many of his away games. I can't tell you how hard it was to manage the conflicting emotions. What I can tell you is my oldest who has the world by the tail had what I now know is anger out bursts at his siblings and me for soemtime dumb things. Its like even with all his physical activites there was testosterone bouncing off the walls. My husband is very laid back so I was not used to this. My friends sons had the same issues. Jacob began to have some of the same issues except he did not have sports for a release. Tthen he grades went from staright A to D's. Some of it was due to the fact he has a stop codon and was told he was going to get PTC 124 then after going off gent per Dr Wongs advise was told he would not get the drug. Jacob is the boy Paul Wellstone met and be friended and inspired Paul to author the MD Act. Then Paul died in a plane crash but if he were alive he would be fighting for Jacob to get this drug to save his life. Often when Jacob would see Paul on national TV he would say theres the man whos going to save my life. At the same time he was was noting increased rate of decline. We got him on antidepressants and he has been seeing a pychologist for over 2 years and this fall we have finally noticed a change. Good Luck!
Hi, my son 11 years old.right now he can't do anything, he must to use wheelchair. i don't know what can i do. i just can say to him that i will be near every he need help.

Did anyone reply to this at the time Janine?

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