Love for Lilee-Gone

11 days after she was gone, I posted some of the most intimate moments I will ever have with another human being; watching someone’s life leave after being the first one to see that life arrive is an indescribable privilege and devastation. These moments, the rest of the moments that night, are not just ingrained into my memory, they are ingrained into my soul. They are who I am, not a moment, not an experience. September 6, 2013 is shaping me. It is the very bottom of the person I am, woven in to everything I say and do. I was afraid that she would be a memory, that she would be something I would be reminded of, but it is so much more organic than that. She is a part of me. And even if I feel like I can not hear her voice, even if I close my eyes and strain to see her eyes and nose and lips and cheeks, even if i fight to pull up a memory of a day or a moment, She is still within me, like her very first moments of existence, but instead of growing in my belly, she is now in my heart, nestled, protected. Always and forever, she will be who I am. And I will be who she was.

September 17, 2013…

Friday, September 6th, 2013 4am. It was dark when I woke, yet I was wide awake. Not that I had gotten much sleep over the last 10 nights, but this felt different. I turned toward Lilee and listened, like I had done every day and night since she was heavily sedated on Monday. But It was different. Her breathing was fast and strained. I called out Andrew’s name, he listened too. The nurse came in and said it’s another change, it’s another step closer. I got as close as I could to her, one hand on her chest to feel her heart, and the other holding hers. I closed my eyes. Then the apnea started (A temporary suspension of breathing). We knew it was possible she could have apneas for up to 5 minutes, but to witness one was an experience I wouldn’t wish upon the devil himself. Her breathing was getting shallow, her lips were turning blue, then she stopped… Her eyes half opened, body sunk further into the bed. I stared at her in disbelief. In devastation. My heart started to race as the seconds slowly passed. My chest was tight, the tears involuntarily starting to form,then *GASP* she breathed in so deeply as if she had risen to the surface of the ocean. The shock was indescribable. My heart was pounding, my tears were freely flowing and my whole body was shaking. I watched her die and come back to life and it broke me. Every 10-20 minutes she would do it again. We learned as we watched her body that there were signs that showed when she would start breathing again, so the shock was less severe. But every time it happened.. She stopped breathing… we would look at the clock and Watch her, Wondering if she will take another breath.

When we first arrived at Canuck Place we asked what our timeline could be. The doctors gave us their best guess, but along with it this advice: From their experience, especially with children, people die indicative to how they lived, to who they are. They have seen a mother lay with a child 23 hours and 58 minutes out of the day, with a 2 minute bathroom break, and the child chose those 2 minutes to pass. Children will pass when they are most comfortable, when they are most peaceful. And sometimes, they will pass at a time that protectes you, the living. So as Andrew and I sat and watched Lilee stop breathing, then take a breath, for hours, we wondered what she was waiting for; what she needed from us to make her transition. Our nurses throughout the week had asked if we wanted to hold her, but because she was still waking up, moving her would definitely be uncomfortable to her, so unless she was heavily sedated holding her would only be for me, not to make her feel better. So I didn’t unless we were changing her sheets. On Friday, however, as the pain was increasing, the meds were as well. Our nurse had asked a couple times if I wanted to hold her and I just couldn’t bare the thought of moving her and giving her pain just so I could hold her. I had spent the majority of 4 days at this point curled up next to her so I was at peace with the fact I would never hold her again. But, at around 5pm when our nurse asked again if I would like To hold her I just said yes, without a second thought. Andrew sat beside us, strumming his guitar softly, and Lilee took her last breath. She was waiting to be in my arms, for her last moments on this earth to be just like her first… Curled up, safe in my arms. I brought her into this world.. And after an extremely short 2 and a half years, I helped guide her out of it. The moments that followed are fuzzy now… The anguish… The beauty… The incomprehension. We dressed her in a pink, sparkly dress that was hand made especially for her, and she truly was a princess. With crossed ankles and her hands in her lap, she laid in
her bed. Still and Perfect. Andrew and I left the room to make our phone calls, unsure whether we would go back or not. When we got word that the transportation was going to take longer than expected to get there, we decided to go back down where she lay. I can honesty say, it was the best decision I have ever made. The incredible people at Canuck Place had made the 2 beds Andrew and I had stayed in, the lights were dimmed, everything was tidy and crisp. All the beautiful flowers we had received were arranged on tables at the foot of The bed where lilee remained unmoved. just beside that was a single bouquet of flowers, and a candle in a vase, it’s flame flickering with life, paying tribute to the loss of Lilee’s. The warmth and beauty of that room extinguished any fear I had of going back there and Once more, I curled up On to the bed next to her. I kissed her perfect little face, softly caressed her perfect skin and whispered gently in her ear. But then it was time. Time for her body to go into the back of the white van with no windows. Time for her body to be just a body. As Andrew walked away with her, I pictured him in a tux, and Lilee walking along beside him. I pictured her turning around and waving to me, telling me she loves me and blowing me a kiss. I pictured her walking down the grand stairs of Canuck place, out the front door, and I pictured the look on her face when she saw her very own horse and carriage waiting to escort her. I Pictured princess Lilee-Jean’s final journey away from this world, dignified, glorious, PINK and SPARKLY. My little girl taken away to become a true Princess, always looking down on us sending love, laughter and RAIN to dance in.

My heart is broken. And my head is foggy. As each day goes by, the pain increases. Each day I miss her more and more. Time will make it worse before I find the tools to help me cope, and I struggle to allow myself to reminisce, or to let the pain take over. I struggle because I’m afraid I won’t recover. I know I will have to revisit my entire journey when I start writing my book, I know I don’t have control over what feelings I will feel. But I am so afraid of them. I was given the gift of understanding the deepest love that exists on this planet. And it was torn from me. I’m afraid that the strength and courage I demonstrated was also tied to the physical presence of Lilee. I’m afraid of who I could become.


Broken and fearful, Chelsey.

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