To Fear or Not To Fear

I refuse to live my life in fear. Fela Kuti World, welcome to life with ALS! Stuck inside your house? Check! Hours spent with only the ones you love? Check! Already binged every worthwhile Netflix series? Check! Worry about catching a respiratory infection that fast turns to pneumonia and you drown in your own mucus?Continue reading “To Fear or Not To Fear”

How do you love someone who is dying?

“When someone loves you, they don’t have to say it. You can tell by the way they treat you.” Unkown I know what you guys are thinking…Wait! What? Matt’s not dying. You guys are so positive. You say he will beat this disease. There is so much coming for ALS in research and therapies. HowContinue reading “How do you love someone who is dying?”

It’s not you, it’s me

Of all possessions a friend is the most precious. Herodotus ALS steals more than our loved ones body. It steals time, friendships, relationships.I am going to forget your birthday. I will definitely forget your kids birthday. I won’t text you back in any sort of timely fashion. I will turn down your offer to hangContinue reading “It’s not you, it’s me”

Does Wonderwoman know she’s Super?

“Love is the only engine of survival.” Leonard Cohen People tell me they admire me. It’s a very weird experience for me. I am not comfortable with it. I’m not a particularly admirable person. I’m really quite average. I was thrust into an extraordinary situation and am dealing the best way I know how. SoContinue reading “Does Wonderwoman know she’s Super?”

Who comes first?

“Sometimes it’s the smallest decisions that can change your life forever.” Keri Russell When we decided to try for a second child within a year of our first, my friends in Minneapolis asked, “Why?!”. Not because they knew of Matt’s struggle but because our firstborn tends a little to what some might categorize as ‘crazy’.Continue reading “Who comes first?”