And the Journey Begins. Again!

The Journey: Part I A few months ago I found out for the first time that a drug had been approved by the FDA in December of 2016 to stop the progression of my disability – Spinal Muscular Atrophy. This drug, Spinraza, was something I’d dreamed about my whole life. I found it by chance … [Continue reading…]

The Holidays are Here!

Whew! Congrats on surviving Halloween!Β  This years costume was brought to you by: a matron of honor dress from last year, the beard of a what I can only guess was a skirt of Doc’s face (I kid you not – creepy!), an old shirt, ribbon and some good old-fashioned hot glue!Β  Yay for cheap … [Continue reading…]

Minnesota Trip 2017

Minnesota was an absolutely amazing time! With each visit home I am reminded how truly important family is and how lucky I am to have the one I do. After over 3,500 miles, 60+hours and a mucho sore booty – I can say it was totally worth it! We (I say that as a relative … [Continue reading…]

Ready or Not

This last week and half has been crazy! In a few days we pack up the van (like, completely-full-to-the-brim-barely-room-for-people type pack up) and head east! We’re visiting HOME! Since I rely so much on other people, I have learned to plan ahead. It would be unfair of me to be a procrastinator when I need … [Continue reading…]

Auntie life is the best life!

Family is everything! Although I moved over a thousand miles away from mine, I savor every moment I get to spend with them! …Even if it’s just hanging out in front of the TV or playing a game of Skip-bo. My family’s love is unconditional and even if we don’t talk every day, their love … [Continue reading…]

Comfort Zones are Overrated!

I love the outdoors! I love the sunshine and being by the water. I love seeing new challenges and running them over πŸ™‚ This time, I mean literally! This post’s challenge: sand! This labor day I went to Folsom Lake. We knew from a previous years visit that I’d most likely be doing some off-roading, … [Continue reading…]

No More Hiding

I’ve gotten some comments on being surprised about the things I share on this blog. Anyone who knows me in “real life”, knows I do not often talk about my disability. Until lately, I didn’t like people knowing how “crippled” I was. I shared about my journey of moving to California (if you missed it, … [Continue reading…]