3/22/2019 Spring Thoughts

Winter is long, hard usually is .. . especially for folks with a rare disease. Icy streets, cold temps, weak warmth of the winter sun. But think about the caregivers who we sometimes take for granted. These are the folks who are the “real” hero’s we need to give the shout out this spring. These are the people who take care of your child, son, daughter, sister, parents, handle all the details, doctor appointments, travel in whatever weather is thrown at them, bills, RX at the drug stores, carrying, lifting, wheeling, moving these folks from here to there. Oh yes, and what about the education part, the school system, coordinating IP’s, teachers, OP’s ~ you name it, the care givers are on IT. It’s more then A LOT. How do we help those folks stay mentally, physically, emotionally going?

I am beginning to see that it is a very under estimated part of this whole broken system. I don’t have the answers at this time. My goal for now is to educate, raise awareness of the huge undertaking and commitment that caregivers make. Give them as much support as possible, keep them healthy ~ Tell them you Love them!

jb