Planning a year from now, a month from now or a week from now isn’t always an option. I make and break plans constantly because my child’s health can turn on a dime. We spend our days changing bandages, fiddling with medications, with needle pokes, blood draws & infusions and we measure milestones with wound healing and high red cell counts. One would think that after 20 years and 2 bankruptcies I would be used to this hellhole of a place where Insurance companies dictate the life and death of people, but, sorry, it still makes me mad. Quiet people live internally a lot. They write their feelings out. They also learn to listen, which is a wonderful quality. Look, I was not happy with the election results, but I care about my health too much to spend my time badmouthing, name calling or insulting others who don’t think theyRead More →

When my son was born there were no research trials, no further treatment of any kind. No pills, medications or hopes to be had. No one can prepare you for having a rare child. It’s a lonely place to be. I am a special needs parent. I got this. When I feel grief wash over me, when I am tired of fighting, when I feel isolated or exhausted, I can almost hear another special need mom telling me “you got this”. Some people are just toxic. Don’t feel guilty for taking them out of your life. If they don’t care about you enough to return a message or say something nice and only spew hate, let them go. You’ll be better for it. So much in life is out of our control. If there is nothing I can do to remedy the situation, giving myself a heart attack solves nothing.Read More →