November 2, 2019 – Ribbon Cutting for the 1st Inclusive Playground in Anderson County, TN

Thank you for coming today.

When Amelia was born, she was beautiful baby, who looked perfect and complete – 10 fingers – 10 toes.

In the coming weeks and months, we would learn that she was very different from a typical infant. Not only was she missing the piece of her brain that serves as a super conductor, but her brain wasn’t growing. David and I struggled to make sense of the limited information doctors were able to tell as about Amelia’s conditions. For her first year, the severity of her disabilities wasn’t outwardly obvious to people. As we coped with the diagnosis and gained an understanding of how it would likely impact her life, we knew we had to advocate for her and others like her – we had to be a voice for those, who all too often aren’t heard.  

As parents, we wanted the best childhood for our girls – we wanted it to be filled with all the joy and fascination that every child deserves. We went to festivals, played in pools and went to playgrounds. The playgrounds we visited weren’t enjoyable to us as a family. Yes, it was fun to watch Fiona run, climb, slide and swing, and usually one of us accompanied her, but as a family we were separated. It was difficult for Amelia’s wheelchair to traverse the rubber or wood chips on the ground; there were seldom swings that could accommodate and support her small frame; and there wasn’t any equipment that would allow our girls to play together.   

We searched out opportunities where our family could enjoy the outdoors by putting Amelia in a pack, so she could go wherever we could go and could see whatever we saw – so we could enjoy activities together as a family.

Amelia profoundly changed our lives and quickly became our touchstone. In seeing all the difficulties she had enjoying the simple pleasures of life and seeing all the pain that she endured due to her brain not functioning fully and properly, it was obvious to us – how much we had to be grateful for and were truly blessed. We found ourselves learning from her, which fueled us in advocating and fighting harder for those underserved.

At a NODCC conference I attended in Boston to learn more about Amelia’s neurological disorders, I attended a lecture given by Dr. Warren. I was still at that time struggling to accept the realities of her condition. His presentation was powerful to me as a mother of a child with multiple disabilities and considered medically fragile. Here is a quote from Dr. Warren:

“For it is…a common assumption that blindness, deafness, deformed or injured limbs, and the like exclude the sufferer from more than a very, very limited set of possibilities.  And this has often been treated as if it were a fact of nature.  What is thereby obscured is the extent to which…the obstacles presented by those afflictions can be overcome or circumvented depends not only on the resources of the disabled…but also on what others contribute, others whose failures may be failures of imagination with respect to future possibilities.  What disability amounts to, that is, depends not just on the disabled individual, but on the groups of which that individual is a member.”

Amelia passed at the age of 5. She was enjoying the best health she had ever had. She was still unable to walk or even support herself in a chair. She wasn’t able to speak. She couldn’t do anything independently. She was happy and had glorious squeals and giggles. Everyone could see her joy when she was in a swing. When she was in a swing, she was like every other child. With her passing, we channeled our grief through continuing to advocate for children with disabilities. Our mission to create environments where all children interact, and their differences disappear started with the goal of installing swing banks in the community and it quickly grew into the goal of an inclusive playground. However, after 3 years, our mission seemed almost out of reach until Christina McNally and the Clinton Lions Club approached us. Christina was the spark that ignited the community to act. Christina, thank you for your tireless work and your passion for all children. Neal Vaughn and the members of the Lions Clubs, thank you for the work you continually do in giving of yourselves for the betterment of others. Thank you to the City of Clinton, the State and the County. Thank you to all the organizations and individuals, who have given so much of themselves to make this the 1st inclusive playground in Anderson County. We are so very grateful.

In closing, I have to say thanks be to God for the blessings we are granted each and every day. And in memory of our sweet baby girl – Mission accomplished!

 

IMG_8829-2.JPG IMG_8834-1.JPG IMG_0553-002-0.jpg

Email Me

Author Name: : Natalie Erb