I have 3 brothers who are all successful and when Benjamin was 1st diagnosed with DMD I recall them telling me "Don't worry we've got plenty of resources just figure out what needs to be done and we'll help you."The first 2 years they did just that.They'd take him to physical therapy,to the movies,to restaurants,picked him up from MDA camp,went with me on doctors visits.Then Benjamin became wheelchair bound and things changed rapidly.None of them come to see him anymore except for his birthday and even then they don't all show up-we all live within 10 minutes of each other.When I've asked them to come see him or take him somewhere they always say they will when they get time,but they seem to have plenty of time to go out with their friends.Yesterday I asked my dad why this was happening and he said "Let it go,I asked them about this and they said if they took Benjamin somewhere and he had to go to the bathroom,they would have to clean him,and that was something they weren't comfortable doing."This is just the latest thing,in the past they promised to help me get the bathroom done and to get a van for Benjamin,only to say the cost was to high.Then when I asked if one of them could go with me on Benjamin's final visit to Philadelphia on the PTC trial,they said my sister in  law was opening a business and they all had to be there.Ironically,they still take my daughter to do things sometimes twice in a week.In fact my younger brother has offered to pay for her to go to a Christian private school at a cost of 430.00 a month plus fees and books,but when I asked about helping with Benjamin's needs,they say they're doing what they can.The private school is a nice gesture,but right now we sure could use some help on Benjamin's needs.When I asked my dad why they were turning a blind eye to Benjamin,he said that Benjamin's situation was so hard and so heartbreaking to deal with that everyone just stays away.As far as helping with his expenses,they felt it wasn't their problem.Maybe it's not their problem and they're certainly entitled to all they have,but in the long run how am I supposed to feel about brother's who have the ability to make Benjamin's hard life a little easier,but choose not to.

 

 

 

 

 

 

 

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My son is only two, so I don't have experience with this, but I wanted to say I'm sorry you and your son are going through this. It must hurt so much to have them basically reject your son. :( It's not something I like to think about, but I'm sure there will be people in our lives who separate themselves from our family as Max's DMD symtoms become prominent ...
Thank You Veronica,I hope that no one here has to experience their own family rejecting their child.

Veronica E. said:
My son is only two, so I don't have experience with this, but I wanted to say I'm sorry you and your son are going through this. It must hurt so much to have them basically reject your son. :( It's not something I like to think about, but I'm sure there will be people in our lives who separate themselves from our family as Max's DMD symtoms become prominent ...
I read your discussion shortly after you posted and it took me this long to respond. I think most all I have to say is... I feel sorry for them! It is their loss!!! Everything happens for a reason, but it's our responsibility to figure out what the reason is. Our boys live life to the fullest! Every boy/girl with duchenne that I have met comes across as being so wise, yet simple... something many of us envy. It's too bad for them to choose not to have a family relationship and someday they will regret it. I am sorry if I offended anyone, but this is a very emotional decision to make on their part. Do they know?

Naomi
We have lost friends who have told us that they,"just couldnt handle the emotional toll Justins disease takes on THEM
. we have also had family members tell us that they just couldnt get close to Justin because they knew they might lose him early and that would be too hard for them. My view on it is, their loss. I do not have time to worry about how other people feel. Justin is an amazing young man and those who choose to not be part of his life will never experience what an amazing person he is or what he can teach them.
Tom, I'm sorry to hear your brothers are not living up to your expectations or to their promises. If I were you, I'd call them together and have a straight forward/eye-to-eye discussion with them. (Yes, I know it is probably a hard thing to do, but you need to to it). Just lay it all out and get to the bottom of it. Explain what you are going through with this and how you need their support and your son needs to feel their love and attention. I don't understand their problem and why they can't figure this out already. Let it all out. they may not realize what they are doing. I just don't get why they are doing things for your daughter and not your son. You didn't say how old your son is. Why they could not help your son go to the bathroom if they take him somewhere is just not understandable to me. What's the big deal? Just have a discussion with them to get to the bottom of this. If they can't do that for you, tell them you are disappointed in them and tell them if they can' deal with your son they should not deal with your daughter either. My son is 10, so I may not be where you are yet. But he's kid who happens to have "muscle problems" but other than that is just like everyone else. It's not like he can't communicate or something like that. it's just puzzling that all of your brothers are acting like this. Just get it all out there and let them know what you are feeling. Don't ask your dad -- ask them. Time for a heart to heart! I'm sure they will feel bad. Lots of luck to you. Hope to see you back here to report on your "talk". Patti Frank
My guess... I would say they are afraid of your son. They only see the disorder now and to them it is too much. If they spend more time with him they will again see through the disorder and have a constructive, loving relationship again. One I think they will regret not having if they don't make the leap. I agree a heart to heart is in order otherwise they will regret it later.


MarcosDad said:
My guess... I would say they are afraid of your son. They only see the disorder now and to them it is too much. If they spend more time with him they will again see through the disorder and have a constructive, loving relationship again. One I think they will regret not having if they don't make the leap. I agree a heart to heart is in order otherwise they will regret it later.

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