Guest Blogger, Maureen Beach, Colin’s Mom
It seems the holidays are always a time to reflect on the amazing experiences that the previous year brings. This December, I’m thankful for a trip of a lifetime — to represent Dayton Children’s Hospital during Family Advocacy Day in Washington D.C. earlier this year.
We are so thankful at this time for the opportunity Dayton Children’s Hospital and the Children’s Hospital Association has provided us. The trip was so quick…but we did get to manage a few free hours to wonder around our nation’s capital — see sites like the Lincoln, Korean and Vietnam memorials. But the highlight was advocating for children’s hospitals – by telling our story at Capitol Hill. Colin has had such a journey with cancer over these 13 years. We can only hope that we provided the legislators with a better understanding of what childhood illness looks like in the healthcare system. Complex medical conditions require health care that can cross state lines, coordination of experts, physicians, therapists and hospitals. Most do not know what that system looks like until you experience it. Our hope was we could be part of more innovation solutions to improving medical care for medically complex children, like Colin.
Part of the adventure is meeting other families like us. We were thankful to meet other children representing their hospitals. Where the disease or illness name may be different, our journeys and challenges are so similar. Colin got to see how other children get around their complicated lives. I sat in admiration of all these young children…who showed up wanting to make a difference in their world. We got to spend some time with the families representing other Children’s Hospitals from the great state of Ohio. What a great group.
The Beach family was thankful to all the legislators who took time out of their busy schedules (and let me tell you they were busy!) to meet with Colin and listen to his story. Senator Sherrod Brown; Speaker of the House, John Boehner; Congressman Mike Turner; and the staff at Congressman Jim Jordan’s office. Each click of the clock was a memory and time as a family we will cherish. We can only hope that children get a voice in this process of bills, laws and philosophies…that they do not get lost as a statistic. Children have such different needs, they are not just little adults. We need pediatric specialists, programs like The Children’s Hospitals Graduate Medical Education (CHGME) Program that support and protects children’s access to high quality medical care by providing independent hospitals with funding to support the training of pediatric providers. What these hospitals do to support the families and their lifelong journey through disease and illness is absolutely amazing! I hope no one ever has to go through what we have, but I sure am glad we have a place to go to — for Dayton Children’s we are eternally grateful.