• Sing a little louder

    I was in church this morning and a song was heavy on my heart. It wasn’t a song sung on the stage, it was whispered in my ear by the Holy Spirit. More on that in a moment. It’s been a while since I’ve posted my thoughts on my blog, rather than my Facebook page. Some of that is due to simplicity, some of that is because my Epilepsy + EDS were overwhelming to manage. It’s always a delicate balance, how do you put that into words without sounding absolutely fragile in the process? Honestly, you don’t. And I am fragile… but I don’t need bubble wrap, I need strength.…

  • Purpose: what’s the point?

    In January 2018 Jason and I sat down to coffee with a another couple… I was stoked. I wore my cute clothes and fixed my hair (I had a 6 month old, this was a big deal!) Upon sitting down with them and answering some ice breaking type questions where we were asked how we feel about our life… all of our vulnerability was met with “well, I want you to know that our life is a 10 out of 10, and your life could be a 10 also if you submit to the mentorship by such and such people, and do xyz. But first we need to see if…

  • Messy middle and public school

    I’ve felt a lot of “middle” this week. For those who don’t know, or are just tuning in, I am the lucky momma to a neurodivergent little girl named G. What this means for me is that most of our parenting is actually just like your parenting… we don’t know what we’re doing, but we’re willing to figure it out! (If you haven’t realized already, parenting is basically ‘Whose Line Is It Anyway: where everything’s made up and the points don’t matter’.) We enrolled G in public school while we explore what’s going on with my health, and we have been fortunate to have good experiences with her school staff…

  • Raising Autism: celebrating out of the box Being.

    I have been a parent for 5 years to a beautiful girl named G. With each additional sibling, we would adjust and maneuver our way into a new normal. It would hurt like hell, but it was OURS and we fought for that beautifully complex normal. When my oldest was 2 I began to suspect she was “different.” I don’t use that word lightly; I have worked with children since I was a child myself… I had seen this before, but in my naivety I assumed it was a nurture problem, not a nature problem. My oldest daughter was an amazing baby— as long as we kept her routine. I…

  • Skyscraper: To those with a few broken windows…

    A few years ago when I heard the song Sky Scraper (Demi Lovato) for the first time, I immediately saved it to a playlist of songs that make me feel powerful. This song isn’t an upbeat typical exercise song, but I’ve found that it’s very special. Whether you are in the midst of a difficult relapse, a flare, a deep depression, etc… it’s for you. The song opens with “Skies are crying, I am watching. Catching tear drops in my hands. Only silence has it’s endings, like we never had a chance. Do you have to make me feel like there’s nothing left of me?” In my darkest hours, my…

  • It’s time to change the dialogue around chronic illness

    I see you. You’re struggling, you put on a brave face, you are as active as your body will let you be. You don’t say much about your condition on platforms like social media, because everyone knows just enough about medicine to be dangerous (or at the very least, naively condescending.) “Have you tried___” “My aunt has ____, and she is fine.” “I bet if you just ____” “I’ve heard some people just have to eat XYZ.” “I can’t imagine, I could never give up ____” “You should look into ____, that sounds scary.” “Buck up, don’t dwell on the negative.” “Do you even want to be well?” “Psychosomatic.” Sound…