Able-bodied, just not able-hearted

[lost*in*cyberspace]

Most people won't give you a second glance. Don't worry about what other people think anyway; I can never understand why people care about what other people are doing anyway. Have a great trip.

 

[ammag]

Just sending some hugs you're doing a great job taking care of him and his needs and I hope you have a wonderful trip!!!!! If anyone bothers him tell us here and one of us will go find the offenders and hurl Mickey bars at them.

 

[piccolopat]

We will! He is homeschooled, and helps me with the shopping sometimes, so he'll get lots of practice!


Great suggestions!! Thank you!!


Will definitely remember this! He is certainly able to transfer, just the walking is a no go for him.

Can I just say how wonderful and helpful everyone is on this board? Our family has really been trying to adjust to our son's new reality, and not many people understand that he is truly disabled now. Heck, my dad forgets and has asked my son to help move furniture more than once since his diagnosis. I've reminded my son to politely refuse. My son looking hearty and hale really throws people off.

Our reality is that as my son's condition progresses (it almost always does, it will never improve, only get worse until a heart transplant is required) we may have to look into purchasing a scooter for everyday. He may have to obtain a handicapped placard for his car. He may have to go on disability at some point. We have have to modify our home or move to accommodate him. But for now, we are living every day as it comes and enjoying every second of the days he is given.

Thanks again everyone for your kind and honest input. It makes me feel so good to know that there are still good people in this world.

Not sure if this is correct, but my brother filed for SS disability for his son before he turned 18 because if he waited he wouldn't get the same benefits. You should check into this as it sounds like your son will qualify now.

 

[seashoreCM]

Suggestion for tee shirt: Anatomical diagram of organs but with some blood vessels ending at an empty space where the heart should be. Caption above: "If I only had a heart."

 

[Marlea98]

I'm sorry your son has to go through all of this. I had three MIs and two SCA's within an hour earlier this year. My MIs were so massive that even though I was already in ER when they occurred the damage was great. I'm being investigated further for VT/VF and my cardiologist is thinking of an ICD implant. It's very humbling to know that strangers saved my life and that I died 5 times that morning but I know that there are people out there who have it worse than I do.


I wish you and your family a wonderful trip. We are going back in December '16 so I'll be investigating the possibility of an ECV if my heart strength isn't up to lots of walking. I'm young-ish with two children and not overweight or have any visible disabilities so I worry, too, that people will judge me as being 'lazy'. On my bad days at home I use my walker around the house but never in public because of the looks I've received on the one occasion I went out in public with it.

Good luck and enjoy your trip

 

[wunkmom]

Just sending some hugs you're doing a great job taking care of him and his needs and I hope you have a wonderful trip!!!!! If anyone bothers him tell us here and one of us will go find the offenders and hurl Mickey bars at them.

Thank you! It's great to know I have folks rooting for us!

Not sure if this is correct, but my brother filed for SS disability for his son before he turned 18 because if he waited he wouldn't get the same benefits. You should check into this as it sounds like your son will qualify now.

Thank you for this info, I will certainly look into it for him.

Suggestion for tee shirt: Anatomical diagram of organs but with some blood vessels ending at an empty space where the heart should be. Caption above: "If I only had a heart."

Excellent idea! He has already had a few other shirt ideas. We have plenty of time until the trip, some of these shirts may become a reality.

I'm sorry your son has to go through all of this. I had three MIs and two SCA's within an hour earlier this year. My MIs were so massive that even though I was already in ER when they occurred the damage was great. I'm being investigated further for VT/VF and my cardiologist is thinking of an ICD implant. It's very humbling to know that strangers saved my life and that I died 5 times that morning but I know that there are people out there who have it worse than I do.
I wish you and your family a wonderful trip. We are going back in December '16 so I'll be investigating the possibility of an ECV if my heart strength isn't up to lots of walking. I'm young-ish with two children and not overweight or have any visible disabilities so I worry, too, that people will judge me as being 'lazy'. On my bad days at home I use my walker around the house but never in public because of the looks I've received on the one occasion I went out in public with it.
Good luck and enjoy your trip

Oh my goodness! You definitely had some angels looking out for you! Please feel free to message me privately if you have any ICD questions. Maybe our paths will cross in December 2016!