Politicians: I took the day off work today to attend an advocacy training at The Children’s Hospital Colorado (they are awesome)! and learned all about how congress people have to balance the party, the constituents, and the politics of decision making. While it didn’t make me all that sympathetic to politicians, it did make me wiser about how to communicate with them about children’s health issues. Also, PLEASE make sure you’re registered to vote since children cannot vote for themselves!
Doctors: I heard five amazing doctors speak to a crowd of practicing doctors and doctors-in-training and me. The first pediatrician spoke about how he learned at age eleven during the Great Depression how and why the under-served mattered in medicine and he built his career on those values. Then a pediatrician who helped create the Let’s Move program for America’s kids along with other health improvement policies. Finally, a panel of doctors advised the doctors (all pediatricians) about how important it is to advocate for their patients and how to do it. Of course I asked a question about how they can recruit and work with parents . . . Amanda never passes up the chance to ask questions.
Nurses: It was a great day, made even greater by the fact that my article about nurses was published on Scrubs Magazine today. Check it Out: http://scrubsmag.com/what-nurses-taught-this-mother/
What it all means: I’ll be honest, some days a part of me wishes I could just walk away from all the advocacy and fighting I do. Then I could write some escapist fluff or poetry and not combine streams. Of course, I never would stop, because my kids are in that mix, but sometimes it feels like I’m biting off too much trying to represent all the parents who were NOT at this meeting or writing articles and books. Then, I have a week like this week that ended with today and started with two special emails.
I’m not going to name them to protect their privacy, but last weekend some lovely readers sent me the nicest note that my book Heart Warriors, helped them prepare for the birth of their baby who was then born yesterday!!! They emailed me this morning to let me know about the arrival, and it was a huge honor that they took the time to tell me at all. The baby will have surgery next week, so please say a prayer or send good thoughts to the family and the baby. God knows where to direct them.
Second, an adult CHD survivor, who is a true heart warrior herself, sent me a similar email the day after the first family about how the book helped her cope with her impending surgery. That made me so happy to know that she was helped by Liam’s story.
I wanted to be a writer since I was seven years old. I started writing in the fifth grade and never stopped. I started volunteering and doing advocacy of various forms when I was fourteen years old. I feel so blessed to mix my talents and my passions, but sometimes the stress of trying to promote a book undermines the very reasons I wrote this particular book (and its sequel that I’m working on now). I wrote Heart Warriors because I live to write and I love to make a difference.
Good friends, new friends, and strangers who will become friends are showing me every day that I did make a difference and I can continue to do so. This gives me the strength to keep writing and to keep fighting and setting an example for my own family that advocacy and following your passions matters.