Yesterday I had the opportunity to participate in a wonderful conference put on here in the Phoenix area by the Nick and Kelly Heart Fund for children with congenital heart defects. It was a fantastic experience. A lot of wonderful information and a great time seeing so many of my fellow Heart Moms.
I decided to choose the panel "Redefining Palliative Care" mostly because Alexandra's cardiologist was in it and I truly believe there is so much palliative care can do in medically complex children. Its not 'end of life' care anymore, it's quality of life care.
The panel discussion members didn't really have a particular agenda, and had heard me and Alex's cardiologist talking and then the palliative care doc and her cardiologist says "Let's talk about Alexandra and use her as an example."
Of course I said yes. I have never been afraid to share our story. Sharing stories helps the next-generation of families who will be diagnosed with these conditions.
I went through a brief history of Alexandra while her cardiologist talked about her reasons for transplant denial and how we are trying to give her the best quality of life by her supplemental GTube feeds, PT and OT and continued constant blood thinner therapies.
I watched as the fellow people in the rooms jaws dropped. They couldn't believe there was this lady - this Mom - having this medically intensive conversation with several doctors and a psychologist.
And I felt proud. Because I fought hard to become this person. I researched and researched and became the person who essentially diagnosed Alexandra with Abernethy Malformation, where doctors had missed it on radiological reports.
I thought of MedX and how it has even more given me that fire to be an active and engaged participant not only in her care but in the reform of healthcare practices.
I felt alive.
When I advocate, when I participate in these discussions, I feel alive.
We talked about the good, the bad, and the ugly of Alex's situation and people where floored. We used her situation to understand why a palliative care doctor should be involved in medically complex children because it means a better life for that child - no matter what the quantity is.
I was going to give up advocacy. I didn't have the time to do it and work a job. We need the money and I couldn't devote myself to it full time. I thought it that it just wasn't in the cards for me. And maybe it's never going to be my job - and that's okay.
It is my passion. It's what makes my mind think critically and theorize different ways we can improve lives.
It's my true heart.
Thank you to MedX for helping me find that passion.
I have found what makes my heart burn.
And it's wonderful.