(This is a piece for my church in the season of Advent) As you can probably guess, so much of my time is spent waiting: for a doctor visit inside or outside the hospital, for a bed in the ER, for a bed in the hospital, for the nurse to bring medicine, for the medicine… Continue reading On Waiting
Today marks 100 days in the hospital for 2019. (actually 101 because an ER only visit was not recorded.) Honestly, it feels disheartening to have reached a negative milestone. I know the exact numbers don’t have specific meaning but the accumulation of 100 days when we still have 2.5 months left in the year just… Continue reading 100
Hey y’all! I know I’ve been slacking with my writing. I want to share my understanding of hope from my circumstances. Hold me accountable to write. You have my permission to lay on the pressure 🙂 Just don’t be too mean. On Wednesday I had a port placed in my right chest. It became an… Continue reading Update: 25 July 2019
If I had made it to today, I would have been out of the hospital for 7 weeks; but…I’m back. We (mom, dad, me) finally had a chance to go to a concert in Arlie Gardens. It was raining but the event was on. We wrestled our lawn chairs, snacks and umbrellas in a sweet… Continue reading Update: 8 June 2019
Thanks, Facebook! Four years ago, on March 6th (yeah, I know I’m a little late – I have excuses) I started receiving formula through a feeding tube. This was a huge step for me, and my doctors. Don’t get me wrong, I never “wanted” a feeding tube or formula instead of eating but I knew… Continue reading Four Years
Hey y’all, I’m sitting in bed at NHRMC this sunny Monday morning, thinking through my priorities for the day – shower, daily prayer practice, read, update you… Today is day 16! here and I don’t have much to show for all this time here. I am grateful for the outpouring of encouragement from friends and… Continue reading Update: 25 Feb 2019
I’ve struggled to write this post, to answer this question, to be vulnerable to you – my friends who ask this all the time. Humbly I share my needs with you. Please do not feel obliged. I put this out here for the people looking for ways to help – mentally, emotionally, financially. If you’re… Continue reading How To Help?
I LOVE the snow, the feeling of it beneath my board, the glare of the sun and the curves made as I flow down the mountain. My illness has tried to hold me back from snowboarding, but I’m not (totally) letting it. My feeding tube has frozen on the mountain soooo many times and the… Continue reading Snowboarding Tips / Tricks
Why am I here tonight? What led me to create this blog? In January 2015, I got sick – not sure why but we’re working on that. Hopefully there will be an entry one day with an explanation. Basically, I can’t tolerate enough food / drink to stay nourished / hydrated. This led to the… Continue reading Why?