The Past Memories (One Day Left)

"Please, don't let her die.... I need her to live. You don't understand how much I really need her in my life." I look up to the stars and plead. I wish that a shooting star would jet through the sky and give me my heart's desire. I hope and I pray even though I have no religion. I have not lost hope even though my daughter has Hutchinson-Gilford Progeria Syndrome (HGPS).

Lilith is only twelve and she looks so frail. HGPS is a rare disease found in children that makes them age rapidly, dying from a normal heart disease found in adults. What makes it abnormal is the fact that my precious daughter will die at the approximate age of thirteen; maybe fourteen. It seems that time has come sooner though. She has undergone treatments, the doctors have prescribed, but they can only manage her condition; she will still die. I know that I've been lucky to hold on to her this long but she is so close to dying. I stepped outside of the hospital because I needed a break from the sterile smell, and the pitying looks that all the nurses gave me. The sight of my baby lying in the hospital, the life seeping out of her. I couldn't take it; I had to get out. I am so tired of giving her hope when I can see that she has none. Yesterday, she yelled at me, "Stop telling me lies! It's not helpful, it just makes it harder you know?"

She cried and my heart broke as I saw her become so weak in mind, spirit, and body. I know that many people have told me that they are sorry. The few friends I have are sorry that my husband couldn't handle the pressure and left. My parents are sorry that I won't be able to watch my daughter grow up. The nurses that tend to Lilith are sorry that I have to be in the hospital so often. But I'm not sorry; I am glad that I've had at least twelve years with Lilith. She has such an appreciation for life and she notices things that no one else would; the very first bloom on the Magnolia tree outside of her hospital window. The very first ray of light to produce a rainbow after a thunderstorm. I'm so glad that I've got to see who she has become. I know that life hasn't been the easiest for her but she is one of the strongest people that I have ever had the chance to meet.

I've had to homeschool her because the kids at her school were "getting nightmares". When she found this out, she said, "Well, not everyone can appreciate the beauty within." Everyone sees her and backs away; she has no friends. Despite the world's opinion though, I still find her beautiful. I still love her smile, her laugh, and how she has a passion to live. She is my baby and I would move heaven and earth to keep her here with me forever. I mean, I'd take her place any day if it meant that she would be able to live a "normal" life. If it meant that she would be able to grow up, go to a homecoming dance, fall in love, get married, have children of her own. If it meant that she would experience a different pain, a different sadness, a different weight to bear.

I have thought to myself often, did I cause this? What did I do that was so wrong that my daughter will never get to live a full, happy, and healthy life? I can't remember. Maybe it was the fossil that I stole on a class field trip in third grade. Maybe it was the fact that I cursed at my mother when I was younger. Maybe it was the fact that I burned my Bible when my best friend died in a car accident. Maybe it was the fact that I married a man who I knew was an alcoholic.... Even though all of my mistakes mount up and mount up, I still don't know why my daughter had to be the one getting hurt.

When I think of my dearest Lilith leaving this world, I know that everyone will tell me to move on, that they are praying, that they will be there for me and that they are sorry for me once again. I want them to remember the Lilith that I will, though. Remember the girl so full of light and happiness. The girl who could make me laugh at funny jokes she came up with on her own. The girl who knew she was going to die and, despite that fact, still lived her life to the greatest extent that she could. I just hope everyone remembers Lilith for who she was and not for what she had. I know that it's a hard concept to grasp but I have managed to come to the realization with Lilith still in this world.

I just wish that I knew I would be okay after this is all said and done. I just wish that I knew I would be able to remember my daughter and not forget her face. Her height, and her weight. Even the pale white color of her head that would never grow hair. I just wish I knew that her death wouldn't be an earth-shattering blow to me. Or if it is, that I will be able to "move on" and remember why I woke up on certain days and how Lilith will always be a part of my heart. I just wish that I knew I would be okay.

As I head back into the confining hospital walls, I pray that I have one more day with Lilith so I can memorize every inch of her. Memorize every detail so that I won't forget the child that I brought into this world. Then, just before I enter the automatic-opening doors, I look up one last time. At that precise moment, I see a shooting star and I breathe out, "Please.”