NOTE: On June 19-20, the Children's Hospital Association held our ninth annual Family Advocacy Day in Washington, DC. Fifty-four amazing kids came to Washington to advocate for better health care for kids, including Lily Blackburn. In this post, Lily's mom Chrissie shares her thoughts on the experience. (Click here to read Chrissie's previous blog post.)
No words can describe the grateful feelings and the level of energy that spread over all the families, children, hospital staff, and CHA staff at the Speak Now for Kids Family Advocacy Day. I can say that I honestly feel that sharing Lily’s and all the others children’s stories impacted how the Ohio and several other state’s Congressmen and Senators will consider Medicaid coverage for our medically fragile children. They have all been through a great deal and many will continue to need continuous care at the amazing pediatric hospitals all over the United States.
I want to thank Rainbow Babies and Children’s Hospital, Heidi Gartland, Dr. Lolly McDavid, Maureen Clark, Elizabeth and Christine Click, and Michelle Snyder in providing the support for Lily, Charles, and I to be actively involved in such an important initiative for children. I am sure all the families that were present are grateful for participating. We are all so proud of our brave and courageous children in the challenges they have had and will face in the future.
I also want to thank Senator Brown, Senator Portman, Congressman Renacci, Congresswoman Kaptur, Congressman Jordan, Congressman Ryan, Congresswoman Fudge, Congressman Gibbs, Congressman Latta, and all their staffers for taking the time out of their busy schedules for meeting with us to share the experience, strength, and hope of the life and journey we are living with our amazing daughter Lily. We are counting on you, everyday, to provide children with the care they need with Medicaid coverage and the specialized training that pediatric physicians need to continue researching and loving our nations children.
Thank you to the Children’s Hospital Association for such a wonderful party, an amazing expereince, and the gifts for Lily. She sleeps with her Yo Gabba Gabba “Brobee” every night. Upon our return I asked Lily, “Did you have fun in Washington DC?” her reply, “It was special Mommy.”