I didn't know when I would be able to talk about the day Lila left. I still can't believe she is gone. How is she gone? my partner in crime, my constant companion, how is she not with me?! I think I am still in shock. Everyday I wake up is like awaking to a nightmare. For a brief moment, every morning I forget she is gone and I start to think about my day with her and Ruby then it all comes crashing back. Every day I long to hold her and breathe in her sweet smell, kiss her cheeks and try to make her laugh. This hole in my chest is excruciating. I am struggling to understand how I will ever continue to live like this.
Lila had a cold. That much we knew. While in the hospital every test and culture was coming back negative. The hospital said they weren't doing much for her so if we wanted to we could take her home. I was nervous, her electrolytes were all over the place and her potassium especially was in flux. But the idea of all being home as a family was overwhelmingly appealing. We made the plan that Lila could go home with the idea that a nurse would come out through home health and draw blood to check her levels. That was Tuesday.
Lila seemed happy to be home but not well enough to think we were out of the woods. Although I really just thought she had a bad cold. She was still lethargic and throwing up but I thought that we were controlling it rather well from home. On thursday we had scheduled family pictures at thanksgiving point to be among the tulips. I debated whether to cancel but i really wanted pictures of lila in the gorgeous tulips. That was where I got my last smile. We were done with pictures, of course and I was laying Lila down to change her diaper in the back of the car when she has a huge smile and small laugh. I started to laugh with her and told her what a stinker she was that she didn't smile for the camera. That was the last time I remember my baby smiling.
Lila was sick enough that I kept her in my bed at night. I wanted to be sure that if she needed my help I would be able to hear her subtle cues. On Friday night we snuggled as I read to her the BFG she fell asleep before the chapter ended and I softly kissed her goodnight. I remember going out of the room to talk to Quinn and asked him if he ever thought that this might be it. Could Lila really be this sick? She didn't seem as bad off as she had in the past but at the same time she usually never threw up for days on end. Quinn reassured me that he thought we had years to go yet with our angel.
Saturday morning. I awoke to my little girls breathing. She was awake before me and patiently waiting for me to wake. I rolled her to her side and rubbed her back. I kept telling her how much I loved her and how gorgeous she was. I got her meds and food ready and turned the pump on so that she would receive everything slowly. Quinn came in and kissed her and told her he would see her after work. She threw up. I changed her out of her soiled clothes and took her into the family room on the couch. I thought I would give her tummy a second to calm down before I refilled her feeding pump and syringes of medication. Ruby woke up. I brought her out and we said good morning to sister as we do every morning. I fed Ruby and we played on the floor next to Lila so she could hear us. Then for some reason a thought came over me and I turned to Lila and started to cry. I kissed her and told her that I loved her so much and that I always would. I told her that I wanted her to know just how amazing she was and that if this life ever got too hard or too painful that she could go. I told her I would never be ready for her so go but that if she was in pain that it would be OK if she did. Lila and I have had these talks before, but they are usually followed with a plea from me to not go. This particular morning I didn't ask her to stay for some reason. Not that I was in any way alright with the idea of her leaving me, nor did I really think that she would, but for some reason this discussion was more peaceful more simple than the ones in the past. I kissed her one final time before Ruby became fussy and I told Lila I would be right back I was just going to go and put Ruby down to bed. While putting Ruby down I felt very sentimental and nostalgic. I was looking through pictures on my phone of Lila. Her sweet little smiles and how much she had grown just in the last year. There was a very calming presence with me. I didn't know it at the time but I am sure it was because my home was silently filling up with angels coming to get my little girl. I put Ruby down and walked back into the family room. As soon as I turned the corner and looked at my girl I knew. She was pale and silent. I went to her side and softly put my hand on her chest. Nothing. Panicked I started to say her name but I knew it. I knew to my core that my girl had just left me. I hystarically started to scream her name and that she needed to come back. Please. How could I ever live without her. She looked just like she does when she is sleeping and I kept hoping that I was somehow horribly wrong. I called Quinn at work and blurted out the words, She is gone! I'm so sorry, she is gone! It wasn't really real until he got home and I watched as this strong and faithful father scooped up his tiny daughter and crumbled into a heap of frantic sobs. We held each other and Lila and cried so hard that every inch of my body ached.
Our families came and one by one held her and cried. It was like a dream, so surreal and yet I thought at any moment she is going to open her eyes. The worst part was when the mortuary came. They brought in the stretcher and we laid my little girl down. I tucked my baby blanket that my grandmother had crocheted for me around her small and tiny body. They zipped her up in a body bag and I thought, she doesn't belong in there. When they took her out it felt like the comfort of that morning, went with her. I felt so cold, confused and horribly empty. How could my little girl never be in this home again?! How could I never care for her within the walls of the new home we moved to for her! ? How could I ever even continue on without my perfect and sweet baby lila?