Wednesday, October 10, 2012
Tomorrow will mark the one year anniversary of the passing of a very special little girl, Ainsley. Ainsley was diagnosed with a 1p36 micro deletion chromosome disorder after she was born. Another very rare chromosome disorder. She was an amazing fighter or overcame many obstacles before she finally went to heaven and got her wings.
Before Ainsley was born, I didn't know her mother or father. It wasn't until they began working through the maze of services that I met them. I remember the first time I spoke to her mother, Crystal, on the phone, my heart just ached for hers. I was optimistic and tried to encourage her the best I could. I remember meeting her Crystal for the first time and seeing sweet Ainsley in the PICU at UVA. I admired Ainsley's strength and her willingness to survive. She was simply amazing. It took me back to the memories of Marissa laying in the same crib with all the wires. I never thought we'd be able to leave, but I knew that if Marissa could survive the odds than so could Ainsley.
On October 10, 2011, we were at UVA for Marissa's pre-surgery appointment for her spinal cord surgery that was on October 21, 2011. Ainsley was in the PICU and we had planned to go see her and her parents. I remember Steve's face when he came into the room and said that Ainsley had taken a turn for the worse. My heart sank. It wasn't until the next day that she had passed. Ainsley's passing was not in vane. She brought change to a hospital that no one else could and is making a difference to this day. Because of Ainsley, children will be saved and an old practice has now become new.
Crystal and I now share a very special relationship. I admire her in so many ways. She is one of the strongest women and mothers I know. I am honored to be her friend and honored to have loved her daughter. Every day I am thankful that she allowed me to a part of their lives.
On December 14, 2011, another special child, Darnell, went to heaven as well. Darnell was one of my "kids". He made such an impact on my life and I was grateful to have worked with him. I have a special place in my cubical at work dedicated to him. He changed me. I miss him every day. But the one thing I know is that Darnell and Ainsley are having a blast in heaven. I know they are playing together and I can't wait to see them both. Sometimes when I miss them both, this is what I think of, them just having fun!
Tomorrow balloons will be flying over the sky of Central Virginia and other areas to honor and remember the passing of Ainsley. Each balloon will hold a message for Ainsley. As I was explaining this to Marissa tonight, I asked her what message did she want to send Ainsley on her balloon. Marissa looked at me, very confused, because she knows Ainsley is in heaven, not sure what to say. I then told her that the balloons were going to carry messages to Ainsley in heaven, she said, "tell her I love her".
Ainsley, we love you! Watch for your balloons, they are going to heaven!