Tuesday, July 31, 2012

Putting my fear aside?

Today I got a phone call from the project manager for the Tri-State Childrens Health Improvement Consortium. They are looking for a parent of a child with medical needs to do a presentation and to sit in their board meetings and give a parents perspective of things.

Out of 18 states there were 10 grants awarded for a 5 year project. West Virgina recruited 10 pediatric practices to provide care coordination. There will be a care coordinator at each practice.  So it's a pretty big project and a big deal!

What they want from me is just hear our story. They want me to go to the meeting in September and do nothing but tell Lynlee's whole story. And in that show how care coordination would have helped or helped up.  Luckily Pittsburgh Children's has a care coordinator. I can honestly can say we would have been lost without her. She had set up all of Lynlee's supplies, meds, etc for us to bring her home that first time. She made our lives easier!

So what's the problem I'm sure your thinking.. Why wouldn't I jump at this? Not only does Lynlees story get out but it brings more awareness to her Urea Cycle Disorder and to Organ Donation. I would maybe be making a difference. I could possibly be helping another family get the help they wouldn't normally get. I could help another special needs mom life be a little easier maybe...And not to mention the difference you can maybe make sitting in on the board meetings.

 Well I'm  ashamed to say I'm scared to death of public speaking. The thought of me standing up and giving a presentation to 30 plus people makes me want to vomit my computer right now let alone actually do it. If I could write my story and send it to them I would but that's not what they want. Ryan reassures me I can do this! That I need to do this. That no one else can tell our story like I can. That we've been through so much I should do this to help others. He says I can put my fear aside since it's something I'm so passionate about and its just part of a bigger plan that we are supposed to be apart of..

If only I had confidence in me. I know I need to make a decision soon. So that I give them plenty of time to find someone else if I say no. And if I say yes we only have a few weeks to prepare for a power point presentation. 


  1. You have already faced the worst fear a Mother can face!!!Everything else will be easy! Trust yourself!

  2. Let me know when it is and I will go with you! I know your will find the courage to move forward as no other mother could. Put it on paper and start practicing. let's get it done!!!!

  3. I do presentations for a living. The first few were terrifying! To say the least. I found strength in knowing that without my presentations, the way I present the information, and the information in the presentations, community members and professionals alike would still be completely clueless about the drug problems in our state. I have worked in the hospital setting as a patient advocate and I can tell you that nothing is more important than YOUR VOICE and YOUR STORY. No one knows your story better than you and you can and will change things for a family or many. I would love to help you put together a presentation if you need the help, and I am sure you wouldn't be alone. God bless you! 304-629-8447 Elizabeth (Gillispie) Shahan