What is normal?

I find it interesting the things we find acceptable.  For example, hauling around formula in a backpack or the thought that eating half a cookie was the craziest thing you’ve done in 3 months as far as PO intake.  (there is another one, using phrases like “PO intake” in a sentence – that’s normal, right?)  Or perhaps you don’t bat an eye at the thought of a dinner that can cost one to two thousand dollars dripping at 150ml/hr into a central line?

Yet it is OUR normal, and that’s ok, because we can still live, thrive and have fun with all these challenges and differences.  I remember watching a little guy pushing his IV pole, TPN swinging, all the while furiously pedaling a tricycle.  I sadly thought, “wow that is NOT something he should know how to do.”  Yet I’m told I shouldn’t be pushing mine from my wheelchair as I book down the hall to get some exercise, either!   To both of us, it’s normal.  It’s ok.  We’re doing it, we’re living, it’s fine, and I know I feel startled when somebody gives me a strange look.  I forget it’s not what is typical, because I feel so strongly that it is.  That doesn’t mean I like it, but it does mean I’m okay with it.  It’s so important to be at peace with yourself; and I rely heavily on my faith to find such a place.

GPACT, the UMDF, the Dysautonomia Connection, YouTube groups and so many more have made me FEEL like this is “normal” because of how many of you out there are living the life I am.  Three am fluid infusion take downs, 8pm TPN setups, multiple feed refills and meds a day, feeding tubes, ports, PICCs…on and on the list goes.  Thank you so much for that!

May your week be full of new adventures, even if you’re only dreaming of what you want to do next from bed!  Never give up that you will accomplish what is in your heart.

--About the Author:

Milly is a 20 year old with probable mito, GP, DTP, POTS and HMS who has ambitions to continue on to college.