There was a conversation recently about this blog, that I have infrequently updated, regarding the purpose. This blog has been a homage to an amazing human who is living her best life, despite a life changing diagnosis, which continues to play a role in her life and how she will have to navigate the world. This blog has also been a place of communication for family and friends to update them on our life. It has also been geared for other families in the world with a similar diagnosis, to provide hope that it is possible to live a life that is still full of joy and inspiration, even on the days that feel dark and heavy.

This year I have provided a few updates, but essentially stepped away from the blog and most social media, due to the natural concept of creation of content, and the innate creative energy that it requires. I have, most honestly, been at a loss of motivation, due to the overwhelming nature of all the medical changes, my own dissatisfaction in my work life, and seeking balance in all other aspects of my life, has left me reeling in discontent and longing for the life that we were creating in Colorado. Being uprooted for medical needs, moving back to a place where culturally my roots ran deep, felt deflating, because I felt like I grew in many ways, and the fit of my old life, no longer fit, my perspectives have shifted over the years.

Sitting here, I ruminate on the words that are before me. Some time ago, a friend reached out to share some philosophical teachings of J. Krishnamurti, “…truth is a pathless land and you cannot approach it by any path whatsoever, by any religion, by any sect.” He goes on to discuss the illusion of organization and how childish seeking validation is for growth, but the truth lies is when we can see past, as well as the current pretense of the future and live in the infinite balance of the now, to truly live freely. How can we live in the now? How do we seek the truth, and not get lost in the business of the world around us? I am exploring that notion, daily, rumbling with thoughts and musings, that are neither too far in either directions.

In my now, I live currently to allow Kayla to live her life on her terms, to explore the world, develop a strong sense of self and place, learn self-reliance to manage her medical conditions, and to be inspired to see the beauty in the world around her. Maybe along the way, this will also give others hope that their children, themselves, or simply that they can shift their perspective on how to live life, which will give them a sense that they can just live, be inspired by the greatness in the next sunrise, your best friends smile, or all the miracles that surround us daily.

It is easy to get caught up in the perceived notion of what it looks like to be successful and have a happy life, through the normative lens of our society. However, if you are reading this, toss that notion out, and live your truth, chase the experiences that bring you joy. Remind yourself and your child to breathe, take in the day, seek the beauty in the world, and live in the moment that you are in.