transferred to the PICU that same day and doctors were still trying the best they could to diagnose her. The whole day had been terrifying, seeing her struggle to breath, the room filling with people in less than a minute, and she was quickly taken to the PICU. We were trying to make sense of everything. What could be happening to her that would cause this?
I remember one of her doctors, pulling us into a room on mother's day and telling me that my daughter may not live beyond her first year. It was as if someone had punched me in the chest and taken all the air out of me. I couldn't breathe, and as the realization started hitting me, I just sat there bawling. All that joy and happiness of having a new born baby seemed so far away and for the first time during that hospital stay I felt like I was losing hope. The entire time we had been there, which by then had been only a week, I had been able to see the light at the end of the tunnel. I thought, it's probably something weird, once they find what it is, she'll be ok and we can go home and live our life normally. But now someone was telling me that no, that wouldn't be the way it would go; that her life would be much shorter and there was a possibility that they may not be able to help her and make her better. Life would NEVER be "normal" for us again.
So much has happened since then, it almost doesn't feel like it happened. I wish I could go back and be in that moment again so I could hold her and kiss her again. But I can't. Life is what it is and Leah taught me that. She was only 2 when she died, but I learned so much from her. I could sit here and cry on my bed all day, missing her and wondering why this happened. I could torture myself and ask why or what I could have done better, differently to keep her alive, and to most people that would be a completely acceptable way to deal with this pain.
But deep down, I know that I could also go outside, take a walk, enjoy the beautiful day and bask in the sunshine and just feel Leah's presence, and I would feel better. She always did and continues to motivate me. I never wanted let her see me crumble and I never let myself ever get to the point where I was so crushed that I couldn't care for her. She inspired me to be strong, for her and for myself. Even now that she's gone, just looking at her face and remembering how she was, I can't let myself get too low because I know that I still have a mission for her. I still have to tell her story and let people know about this disease because I don't want it to continue killing other children like Leah.
Whenever I wonder why this happened or what my purpose is now that she's gone, and I wonder this a lot (daily), I am reinvigorated by her to keep going. To not wither and just fade because she's gone, but to go out and make a difference for others, to share her story, to make people aware of what they don't know about this disease. Leah was and still is an example of how to enjoy life, even in the most difficult times. She had no idea that life wasn't meant to be that way, she just smiled and loved the people around her, she loved life. And although there are some days that I feel I don't want to live because the pain is too much to handle, I just need to look at her smiling face, and remember all the shit she was going through. And she reminds me to smile, to take a moment to get out of my own thoughts and feelings and just be. Be in the moment, be aware of the beauty around me, see the world through her eyes and enjoy the happiness that life can bring.
She taught me to enjoy life, and it's a very hard thing to do without her in it. But this mother's day, I want to honor her by following her lead, and enjoying the people I love and enjoying life.
Z and I went with my mom to the San Diego Botanical Gardens yesterday for the "Chocolate Festival", since my mom loves chocolate. It was a long drive and we were only there for 3 hours, but it was worth it, because I was with the people I love most, enjoying a beautiful day in nature and eating chocolate. And I know Leah was with us, she was all around us, in everything. There was one moment where I saw a yellow and black striped butterfly, and it reminded me of the butterfly from "Hope for the Flowers" (a book I've written about before). I stood there watching it and it got so close to me, it wasn't afraid of me, it almost seemed like it was going to fly over to me. But it made me think of Leah and maybe it was a sign from her, that she was there, or not. But I will believe that it was Leah and she made me smile.
I wish all mothers a happy day today, and if at the moment you are going through something sad, or you've lost a child, I hope you can find some time to take a moment and, even if it's only through memories, find something to be happy about.