On a subject that nobody likes to talk about... the end of life of loved ones.
I am writing this in January of 2026 because I just haven't been able to gather my thoughts until now. It's been a really rough year. My oldest brother Phillip had a CT scan in May and was diagnosed with yet another brain tumor. He had been diagnosed 15 years ago and the neurologist at the time gave him 2 years to live. So here he was again, being diagnosed with yet another brain tumor. I questioned that diagnoses because Phillip and I have had similar genetic brain and heart issues and we spent hours talking about it on the phone for years. There were several major differences, I had my first seizure at the age of 15 and he didn't have his until he was about 62. The approach to dealing with our health issues through the years was very different. As I said, I had my first seizure at 15 but I didn't have another until I was pregnant at the age of 25. After I gave birth to my son, I started taking seizure medication religiously. Phillip would take his seizure meds for a while and then stop and end up having a severe seizure. It was an ongoing issue for 15 years. Our heart conditions were rare and different but we were both also diagnosed with aneurysms on our aorta. My cardiologist told me about 12 years ago to expect that my aneurysm would grow 1 cm annually and I would have to have open heart surgery to repair it by the time I in my mid 60's. They have been surprised over the years to see that it has grown very little. Phillip on the other hand, had to have his whole aorta replaced because his got so big. Again, because he wasn't taking his meds.
So over the years, I have taken 6 meds daily and I spend lots of time doing research. The most important research being that of our ancestors. I am attaching a couple of websites with information.
https://www.alliancetocure.org/home/cavernous-angioma-in-depth/genetics/founder-mutations/ccm1-common-hispanic/
https://bacafamily.org/wp-content/uploads/2020/08/combinedgenealogyccm1newmexico-5.12.20-finalpdf.pdf
I tried to share this information with Phillip and his family but it fell on deaf ears.
I guess I shouldn't have been surprised that most of my family members were not familiar with the volunteer work I have done with Swan Songs - Austin over the past 20 years. It all began when my dear friend, Christine Albert was asked to sing for a friend who was at the end of life in 2005. The honor of being invited to sing at this powerful moment in someone's life was humbling and inspiring to her. So the idea was born to create an organization to act as a liaison between the healthcare and music communities, hence the non-profit "Swan Songs-Austin" was created. These intimate "musical last wishes" concerts are a blessing to both the family and the musicians. A favorite style of music is brought directly to the home or care facility and an intimate concert is held at no cost to the family. Committed to supporting live music in the community, "Swan Songs-Austin" compensates the musicians for each performance. I personally have donated a large painting to be sold at each annual "Swan Songs" fund raiser for many years and have created many slide shows for the event. "Swan Songs-Austin" is celebrating 20 years this year and has been such a blessing to our community.
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| From L-R - Craig Bentley, Jerry Don Motely, Sam Bentley, Debra Watson, Nathan Fajardo, Lynn Daniel, Christina Fajardo, Phillip Fajardo, Howard Kalish, Derek Hatley, Adriane Ethridge, and Nita Fajardo |
August 18, 2025
We had an amazing Swan Songs concert for Phillip in Round Round. Thank you Karen McElhatten, Howard Kalish, and Nita Fajardo for helping me pull this beautiful musical event together for our beloved brother. Thank you Adriane Ethridge for driving me half way to meet Nita on the journey. I love you all!
August 25, 2025
There are no words to express the feelings I have had recently with both my brother Phillip Fajardo and my friend Chris Gage in Hospice. Yesterday was a pivotal moment. Chris passed away and Phillip had a very rough night due to another dreaded brain bleed. Today it was hard to even move off of the couch. I found these photos from 15 years ago when we had a benefit for Phillip, the first time he was diagnosed with a brain tumor. The photos display how the Austin music community always come together for each other, offering pure love, light and the healing sound of music. Just remember we are all on this journey together. I'm sending so much love to everyone.
