Reply #5: As the primary caretaker of my chronically ill son....

[Justitia]

In the immediate, it meant coming to grips w/the fact that I will most likely outlive my child.

I also came to the realization that you never know what is really going on in other people's lives. You go to work everyday, greet your neighbors, you never have any real idea what they are suffering through or what they must go through just to live every day. I never make judgments about anyone's physical appearance, what they "should" be able to cope with, their attitudes or behaviors, etc.

My dad has a terrible habit of judging large people on their weight. Then he saw his thin grandson literally mushroom overnight due to prednisone, he could only walk w/a cane - & he's 23. I pointed this out to my dad: "Dad, you would have seen my son and said, look at that young guy, he's made himself so fat he can't walk w/out a cane, do you feel differently now?" And he does.

And of course, how EVERYONE is a single catastrophic illness away from destitution, I don't care how much money you have in the bank. My son's first month in the hospital cost $100,000. His care costs between $6 - 9,000 per month (he's on dialysis). To say that adds some stress is quite an understatement. Who could have seen that coming in the life of a vibrant 23 yr old young man?

I have always been a compassionate person, but I have become an incredibly grateful AND compassionate person. So many people have helped us, from the medical professionals to the social workers to the folks at Soc Security & Medicaid, to the hospital administrators to our pharmacists and even the maintenance workers in our building. I am so, so grateful to all of them, even the little things they do for us mean so very much.