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”
Category Archives: Caitlin Blog
Be a KIND person
Love could change the world in a momentBut what do I know? What Do I Know? -Ed Sheeran Let’s take a little break from the world of ALS and my thoughts on how to live and love through this disease. It’s healthy to take a break every now and again from anything. Helps gain perspective,Continue reading “Be a KIND person”
Give a Hug
I have learned that there is more power in a good strong hug than in a thousand meaningful words. Ann Hood For some caregivers, maybe most caregivers, the loss of physical affection can be the hardest. Our loved ones, for the most part, keep their mental faculties about them throughout the entire disease. As longContinue reading “Give a Hug”
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?”
It’s Going to Be OK
“She is clothed with strength and dignity, and she laughs without fear of the future.” Proverbs 35:21 April 8, 2014…it was just a day. It was a day that had been coming for nearly 18 months. It was a day we could finally breath again. It was the day Matt was officially diagnosed with ALS.Continue reading “It’s Going to Be OK”
Tweed Thoughts 