Sunday, July 14, 2013

July 14, 2013: New Friends...


I am ready to hit the hay, but I wanted to reconnect after an a-m-a-z-i-n-g trip, because the trip has everything to do with YOU and THIS blog.

See, back in March, I got an email.  It was one of those emails I had been waiting for since my TEDx experience.  I really want to develop the expert/speaker side of my career, because I believe I will be able to reach more people down those avenues by being hired to come work with and speak with entire groups at a time.  I love my small group and one on one music therapy, but I'm on a mission to inspire and heal and teach millions, so in order to deliver on that mission, I need to be out in front of large groups!

Well, the email asked me if I'd come to speak about music therapy and pain management at two conferences for children and adults with hemophilia with inhibitors.  The meeting planner explained that this means that these patients essentially build antibodies against the primary treatment for their condition.  As a result, they are the most affected with really intense challenges, one of which being pain management.

I asked the meeting planner how she had found me, and turns out it was through THIS BLOG.  She first read Courtney and Patrice's blogs, and then stumbled on mine!  When she realized I had the professional background to discuss music therapy - a topic they had wanted to incorporate - and the personal background as a caregiver of someone with a severe disease, well...

... it just seemed... Providential. 

Well played, God.  Well played!

So, I was hired to come to their two summits this year, this past week in Seattle and in two weeks in Nashville.  I got to drum and play with the kids' camps, and do lectures with teens and adults.  Once we worked all that out, I asked if I could give a "musical keynote" on one of the nights as a value-add, because I really feel called to share our story the way I did in Chattanooga... inside the VERO model.  I feel like God wants me to share that model with special needs parents, and while he planted the seed three years ago in Nov of '10, the u of M was dangerously low on research funding, and we didn't want them to stop the progress they had made, so it was time to focus on them.  Less than 3 years later, thanks to the amazing efforts of DebRA, EBMRF, JGSF, and PUCK, the U of M has seen over a million dollars in research funds come their way.  So, having hit that milestone, it's time to move on and share our story.

The planner brought the idea to the steering committee and they liked it!  So, I got to share our story with this new community in the hopes that they could take the VERO model home with them and use it to empower how they see their conditions.  I was really nervous to see if it would resonate in a positive, motivational, inspirational way, or just hit too close to home...

About 100 people came to the keynote, and afterwards, I was inundated with kind, welcoming, and empathetic remarks and sentiments.  This community was so wonderful and welcoming.  So peaceful and supportive of each other.  So driven and committed and passionate.  They reminded me of so many within the EB community.  Bella was only with us for 17 months, and the last 3 of the months were in the ICU, so in some ways, I never felt like I got to know too many people in the EB community, and the only PCC that happened while Bella was alive took place the weekend she was admitted for her BMT.  Still, Each one of the following people in the EB community came to our aid at one point within that short period of time and walked with us:

Gerri Kelly-Mancuso
Leslie Rader
Jason York
Danial Jones
Marybeth Sheridan
Patrice Williams
Courtney Roth
Jennifer Edling
Brett Kopelan
Becky Pop
Joy Thornton
Sara Denslaw
Frank McNamara
Lonni & Jay Mooreland
Chris Pez Matthai
Kristi Bolte
Meghann Turnquist
Sally Mata
Linda Ainsworth
John Neikens

Now before I get in trouble for any omissions, we've bonded with many more since Bella died, and forgive me if your name belongs up there and I forgot.  Point being, with only being in the community for as short a time as we were, and for never having been to a PCC or Camp Wonder, the list shows that the EB community is an AMAZING support structure for itself.

That's the kind of camaraderie I was around this weekend.  It felt very comfortable to be in.  I felt right at home, and it was SUCH AN HONOR and PRIVILEGE to be granted the opportunity to share my story and my expertise with them.  I fell love with a whole new community, and can't wait to share again in two weeks in Nashville!

So, thanks, Meeting Planner (wink wink you know who you are)!  I may have shared the gift of music therapy and VERO, but YOU shared the gift of this entire community.

I think I got the better of the two deals.

God night.

P.S.  As cool as it was having a professional driver to and from the hotel... 

... this was the sign I liked seeing the best!  Thank you mommy, Ali, and Julian!  You made my day!


  1. "Well played, God. Well played!" indeed

  2. Coming out of lurker status to say that God works is mysterious and wonderful ways and I truly hope that this is just the first of many times that you share your gift with the hemophilia community. Because The Lord has gifted you mightily and I feel blessed to have learned from you.

    See you in Nashville!