felt bad for ds, so normal yet not so much

I understand worrying. One of my son's best friends has suddenly developed a condition forcing him to give up his sport and many activities for the rest of his life. It's a lot to absorb for a teen and parents.

Misconceptions will happen at times, since friend is a "strapping young man". But @gar 's words will apply.

Your son sounds like the kind of person able to handle this. And you sound like the perfect mom for him too. You didn't wrap him in batting, instead he's out there living a full life!

@oldpeanewname, you posted as I was typing.

I was already tearing up thinking about the challenges these boys face. It's hard enough parenting the normal things without adding in medical conditions. I hope it's okay but I just said a prayer for you.

Any 'invisible' condition is difficult to live with. People make judgements based on appearance all the time and it can be hard when, like your son, you are ill but don't look it.
Is he open to his friends about his condition? They might be his strongest allies, especially through school. If they know that he might be needing help, maybe they could step in and carry his stuff for him.
Adapting to life with a long-term condition is hard; I've been there. When I wasn't allowed to lift anything heavy I would break down boxes and carry one bit at a time and make lots of journeys. You learn to adapt, and you learn what is 'normal' for you. And there are many ways around things. If/when he has children - well, he won't be doing it alone, will he. And hopefully any wife or partner will be able to support him.
Finally, baritone saxes are heavy! Can't he play the clarinet or something instead?

You sound like you are doing a great job helping him prepare for life in the big wide world, which is full of enough challenges without extra ones like this. I am sure he will do really well.

I can see that that's hard, really hard and I hope you don't think I was making light of it. I do sympathise.

I think you're a great mom for helping him through these challenges and worrying about him.  I can't imagine how hard it is to have a disability that it is invisible to others, but I would try to start guiding him to gratitude.  As he grows and is presented with challenges along the way, he can let his disability define him or not.  I would show him inspiring stories of soldiers who have lost limbs and can't pick up their children.  I would find stories of how those with disabilities learn to adapt.  Your son's heart issue may not fit society's definition of "normal" but it's his normal.  And that's a great gift.  

I'm 27 and look reasonably healthy, yet some days I can barely stand up. I can't carry a box of books.. Or my own suitcase which can be a little embarrassing on a work trip but it's something that you have to learn to live with. It can be rather humbling to swallow your pride and ask for help. Usually people are happy to oblige.

Most days I accept my limitations, but when they cause me to miss out on something I really want to do, I get angry and frustrated. I can't change it though. I have default work arounds that allow me to join in for some things, alternatives activities for others but sometimes I just have to watch.

I guess it's like living with a serious food allergy - you always have to be switched on and aware and sometimes you just miss out. One of those "life is so unfair" things

Like the pp mentioned, those folding luggage dollies are super useful - everyone had one in art school for the cases of materials and portfolios we had to drag around... Hint: if you live somewhere with snow, get one with big tires or be prepared to drag it instead of rolling it between November and April...lol

There's also a big selection of luggage that has wheels... Backpacks, duffle bags, totes, briefcase style bags... So for things like books or the mass of day to day stuff that needs carrying, one of those might work... Sports brands have some, Ecko, the usual luggage companies... One that doesn't look like a suitcase should be easy to find and that should cover him for day to day stuff...

Places like Princess Auto and hardware stores will carry rolling dollies and skids of varying sizes and strengths... You can add castors to a lot of things too... They come in different styles and sizes, and are usually pretty easy to attach to things...

I think that you guys will learn and figure out creative ways to handle stuff as it comes up

My daughter also has a CHD and a porcine valve. She's not supposed to lift more than 15 lbs. Her backpack weighs more than that. It makes me crazed that she won't get one with wheels. She knows the risk. She knows that she'll have to have surgery earlier rather than later if she continue to ignore the doctors (OHS - not fun), but she (most likely) won't have an aneurisym.

I wonder if your son could get a handicapped license plate?

I'm sorry he's going through this. It is hateful.

Hey. My kid had a heart issue, that would have eventually killed him, per the cardio, so I totally get where you are both coming from. I'm sorry he is limited due to his heart. It's very nerve-wracking, and frustrating for kids, especially when everyone else seems to be "normal". 

While the limitations suck, he is so fortunate in that following that one rule, while inconvenient and sometimes frustrating, means he can have a long and fulfilling life. Not to mention, he won't *ever* have to help his buddies move.

As for the dolly, you can get an inexpensive one at Target or Walmart. They fold up. Strap the instrument to it with a couple of bungee cords. Another idea, do they have instrument lockers at school? Perhaps he could leave it at school and you can get him a rental for home? Lots of kids at our school do this just to avoid schlepping their instruments back and forth all of the time.