Perspective- Lessons from Luna

on Mar 5, 2022

It occurred to me, while I was walking Bahni through our city streets, and got a glimpse of dear Luna…Isn’t it kind of crazy that I can stand on my street and see the moon in a mid day sky, but I can’t see the next town over?I understand why of course, in a logical sense, but isn’t that just interesting to think about?It reminds me that if we only look at a phenomenon from one point of view, we can easily miss all the factors and layers of other stuff that could be in the way of us seeing something clearly.The next town over is certainly closer to me right now than the moon, but the angle from which I’mstanding provides me with this particular line of site. One window of seeing vs another.At this place, where I’m currently standing, there are things in my line of site between me and the next town over that prevent me from seeing it.Distance, in the case of the moon, actually...

on Feb 21, 2022

Feb 19, 2022 My little baby brother, Colton, would have turned 30 today. I don’t know why it’s hitting me a little extra hard this year or this morning, but it is. I think there’s something around him being 30, a milestone birthday, maybe. I don’t know. It can be hard to understand the mysteries of heart and grief and feelings. What I do know, is that when I ride them, instead of fight them, they move and change and offer their gifts.  I find myself wondering extra this year, “What would you have grown up to be like?”. “What and who would you love?” “What would have made you laugh and smile? ” “Would you have liked school?” “What would our relationship have been like?” I so want to know more about the man you would have become. What would our family have been if you had lived? I think I would have really loved being your big...

“Salt In My Soul, An Unfinished Life”

on Feb 5, 2022

I just finished reading “Salt In My Soul, An Unfinished Life” by Mallory Smith.The book was completed and compiled by Mallory’s mother Diane, but taken mainly from Mallory’s writings.I began this book this past summer, but it really took me some time, I had to wait until I was ready to be with it and take it in sections.It came into my life when I was ready to do some healing, some opening up of old deep in places that were ready for some light and some shared perspective.I began to write here a few times about the places I was touched from Mallory’s shares and experience. A number of times I found myself talking to her, talking to me, feeling my other friends who have passed coming back in through memory and with presence.I actually finished the book last night, on Peter’s anniversary (one of my dear loves who had CF). There was something so fitting about this. Gave me some time to...

Big T Pow Wow- Versary!

on Feb 1, 2022

Yesterday was my two year Trikafta-versary.In some ways it’s hard to believe it’s been two years. I’m still in the learning curve of learning how best to work with this “new to me” body with my Trikafta super powers.In other ways it seems like pre-Trikafta was a lifetime ago.I still label every single one of my days on it with a number. My daily count helps remind me of the number of days, the time I have so much gratitude for.(Not that I didn’t have gratitude for my life before Trikafta.  I did and I do. The whole big beauty-full crazy thing.)It certainly has not been an easy or seamless transition, but wow, to be where I am at now, at this time in my life, coming out of a MAC treatment that it seemed I might loose to. This. This feels like, this is, a dream I didn’t even know how to dream come true.Thank you Big T.My Pow Wow!💜

on Jan 26, 2022

I was on a quick walk with Bahni B today and realizing-  I’ve learned to see the sky like I do the ocean. I’ve come to intimately know it’s vastness, and to feel into my own, as I open up to the space above.… behind, below, on all sides.When I look up into the curve of the sky, I’ve come to be able to feel into the round ball of our planet, opening to a glimpse into the forever of space beyond.Looking up has come to help me to know spaciousness, remember spaciousness.Finding the sky has become a salve for my being, a way to restore, reset, even within the city streets and surrounding concrete.I’m so grateful for this ever present access point.Thank you Big Blue.

Appreciating Now

on Dec 8, 2021

Nov 22, 20 21 Feeling so much love in my heart for my sweet girl today.  I mean, the love is always there, but it just feels extra amplified today, like so in love, like adoring her extra in that way that just makes the day better and my heart feel so open and unbound when I see her. Watching her sleep is giving me extra peace, hearing her snore brings a smile to my heart. Seeing her eyes meet mine, lights up and offers both space and goodness to my being. I always love her, but today, I just feel so in the goodness of what that is. I’ve been sitting in, and sorting through, some of my fear around what my recent bleed might “mean” and my fear and/or apprehension around having to face suffering or pain. But, the truth is, now is ok. If I’m letting now be consumed with worrying about the potential suffering to come, then I’m actually extending or bringing...

Hoop Dance Life Line

on Nov 26, 2021

Nov 15, 2021 I feel like I’ve been a bit under water the last few days. Body, mind, and spirit. I’ve had a hard time pulling myself up out of the vortex of blue. Tonight, when I started to feel myself slipping deep down to that seemingly irretrievable place,  I decided to do something different.  I put on music, which led to an opening to a hoop desire, which led to me getting myself down to the studio below us, hoop in hand.  I made a promise to myself and my body to be gentle, but to see if I could find myself a bit with my hoop, feel myself again in the music and dance. I stretched.  I tested the waters.  No bleed or cough, so I went for it. Gentle, loving, but also a little defiant and taking the time I needed to let some of my emotion just move through my system. Tears and feels and swirls… and somewhere in between the tears and feels and swirls I found an...

Hemoptysis

on Nov 17, 2021

Hemoptysis (First episode began Nov 12th 11:40pm) *Warning- I talk about blood in this entry.  Don’t read if hearing about blood is not your thing. I had some hemoptysis (bleeding from my lungs) last Friday night. This is my first episode since beginning Trikafta (Jan 31,2020) and starting MAC treatment (Feb 2019).  It was quite a shock. Even though this was a more regular part of my life for long stretches at a time, I was in no way ready for this one.  Except, I suppose I was, because well, it happened. I laid down to go to bed and immediately coughed that very different kind of cough. I could feel the fluid movement in my chest and a clot come up with fluid in my throat. I ran to the bathroom in disbelief and saw that I had in fact coughed up a clot and bright red was continuing with my following coughs. That first little burst was maybe a teaspoon. Including blood and clot,...