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.
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 ...
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.