Day 1 without Lily: warning-this may be rough to read Everyone tells me to keep writing. From my experience as well as Matt’s, writing only comes from a certain place way down deep inside that right now, is empty. That is just how I feel without Lily. Empty. There are many other emotions that I am definitely in touch with in this grief process, the uncontrollable heavy sadness, the tears that I sometimes cannot stop and still quiet of my heart as well as my home. Yes there are noises…but they are white noises. The noise that my heart longs for are the very familiar sounds of Lily. I long for the sound of Lily yelling “Grandma” every 5 minutes from her room. The many conversations from me as well as from Matt and Devin about how Grandma wasn’t required to get up and come see what she wanted every 5 minutes. That Lily could actually walk into my office and ask me what ever she wanted. And I think when I say the word “office”, I send a different picture to everyone reading so let me clarify that. I have back problems as many know and my “office” has become where I spend almost all of my time. It has a big screen tv, a fridge for drinks and seating for 3 not including me. So my “office” is not your typical office. It is where my family gathers. It is where Lily and I hung out, played games, and sometimes ate. When anyone comes to see me, my office is where we go. If you get hungry, I may at any given time be able to magically pull out a snack for you and there is always a huge jar filled with candy. Most recently Lily’s favorite, Kit Kats. If I do get something to eat from the kitchen, it usually gets carried up to my office to be eaten. If Matt walks in with dinner from a restaurant it is common to holler as he comes through the door “are we eating up there or down here”. My office is where we all hang out and the first place my family looks to find me. If they are looking for me and I am not there, there is almost a panic in their voices as they ask “where’s Mom”. So, from “my office” I sit here longing for the sounds of Lily. Lily would be brushing her teeth with her electric toothbrush across the hall, singing as she does so, every time. You can’t stop her. We’ve tried. We didn’t try too hard as we already knew that her singing couldn’t really be stopped no matter what the situation. Many times she made up her own songs. We were used to that. So the sound of Lily not singing here now is the equivalent of quiet. The house can be filled with noise but the sound of Lily not singing is deafening to our ears. I have typed a page and a half without interruption. I keep waiting for one but it doesn’t come. My reality is that now it’s possible that I could be left alone in here for hours before someone “needs” me for something. Then invariably someone will need to know where something is and I will tell them but they won’t be able to find it. Then normal protocol for my house is for me get up and to find it for them. That’s just the way my family rolls. Then I again will return to my office to the quietness of life with no Lily, where I will sit and remember all the times she would come into my office and ask me to play a game, bake cookies with her, watch a show on her ipad or read her a story. I tried very hard to put everything aside to do those things with her and I think I did a good job of that but I am haunted by the “one that got away” so to speak. The night before she died she asked me to teach her how to play monopoly. And I didn’t. It was late and my back was hurting. She had gone to occupational therapy on Thursday and her therapist Erica had given her a monopoly game. A regular monopoly game….not some junior version. So teaching her was going to be no small feat. But Lily was so excited to learn and so excited to play the game. But I put her off. Tomorrow I said. I will teach you tomorrow. She still insisted on playing that game without me so I helped her open it. I showed her what all the pieces were for, explained and set up the money and I left her to play in the hall outside of my office…just a few feet away. She came back to me because she didn’t know where to put the houses and hotels so I got up and went out there to show her where to put them. I did everything but actually play the game. A few minutes later she got bored with playing alone and began to clean up the game. I helped her get baggies for each of the pieces and she cleaned up the game putting everything away perfectly as I would have done, all the while with me promising that I would teach her tomorrow. And that was that. Soon it was bath time, bedtime and time to feed the fish so the game was put aside until tomorrow when we would play. Tomorrow came but the game remained untouched. It was a typical morning of no school. Lily was up early as usual but this time before I was. She woke Grandpa up and wanted to cuddle. He scooted over on the bed as he had done so many times before but since I was still in the bed, she insisted on being in the middle. So there she sat, between us, watching her ipad with headphones on. Eventually Grandpa got up and went downstairs leaving Lily and I on the bed. Typical of Lily, she started singing not realizing, with headphones on, that I could hear her. She woke me with her singing to which I was not too thrilled. So I woke up and said “LILY” in a not too stern voice but one that let her know I was not thrilled to be awakened. Lily immediately realized that she had been singing and the room immediately began to be filled over and over with sounds of “I am sorry Grandma. I am so sorry, I am so, so sorry, I didn’t mean to wake you”. I just got up, saying nothing else and continued my morning rituals. I didn’t yell at her but I also didnt tell her it was alright. I said nothing more than that one word…Lily. Because my back pain is crushing in the morning, there are things that I must do when I get up which Lily was aware of. But normally I make sure to get up at least a couple hours before she does so I can be ready to care for her needs. With there being no school and Grandpa and Devin home I knew I wouldn’t have help with Lily that morning so I slept a little longer than usual, leaving Lily’s breakfast and her meds at 7am to them. I had no idea that within 4-5 hours Lily would be gone from us. The morning continued as normal with all of us home and Lily being with each of us at varying times. At some point Devin came up to my office and asked where Lily was because it was quiet. I found Lily in her bed where she had crawled up to nap I suppose. Devin came into the room. I rolled Lily over, pulled her hair from her face and checked her breathing. She was fine. I checked her for a fever because she had one the day before. She was fine. She was sleeping deeply, but fine. Devin and I left the room to leave her sleep. I really don’t know how much later it was, it could have been an hour or it could have been 15 minutes but suddenly something told me to check on Lily. I immediately got up and went to her. She was already gone. A year of training with her seizures has taught me to be calm in emergencies so I tried to remain as calm as possible. I checked for a heartbeat and found none. I scooped Lily in my arms and ran to my bedroom. I yelled for Matt who immediately ran upstairs and called the squad. I immediately started CPR until Matt got off the phone and took over. The rescue squad was there in a couple minutes and they did the same things I did. The paramedic quickly checked her then scooped her up in his arms and ran with her from our home. Our nightmare had begun. Now here I sit in my office 10 days later. My daughter (grand daughter technically) is no longer singing to her ipad. Her clothes are still on the bathroom floor from her last bath. Everywhere you turn your head in my home are Lily footprints, toys, clothes, artwork and crayons…everywhere. The bed where she died has not been made. The blankets are just rearranged from the different family members who have slept in the spot that we lost her, in a futile attempt to hold onto her. Flowers fill the house, which Lily would have loved. Other than that, our world here is intact. As if she was here. I don’t know when we will pick her clothes off the bathroom floor. I don’t know when we will make her bed or pick up her toys. I just know that for now, none of us can. And that monopoly game …is missing. It was here, just like Lily was here. Then it was gone, just like Lily was gone. And all that remains is a deep dark heaviness that none of us can shake. That empty feeling in the pit of my stomach that nothing can ease. And as silly as it may sound, even to myself, the thought that my baby girl is down the street in a cold dark hole in the ground is almost unbearable. Is she safe? Is she warm? Is she scared of the dark? Of course she is none of those things. She is in Heaven, running and dancing with perfect legs, seeing with perfect eyes and singing with the angels, like an angel. I believe if we could see Lily, if we could just get a two minute glimpse of her…that we would want her to be where she is…that we would choose that for our baby girl. But right now, as I sit here with Matt on New Year’s Eve, with the rest of the world celebrating, I am thinking of what we “should” have been doing. There was to be excitement, joy, giggles, laughter and lots of cuddles. I promised Lily that if she couldn’t stay awake until midnight that I would wake her up to do what all my kids did on New Year’s Eve. Run around the yard banging a pot with a wooden spoon and screaming “Happy New Year” as loud as she could. We would have snacks and watch the ball drop while cuddling on the 7 foot bean bag chair. We would have had so much fun. But at this moment, my heart aches for a Lily hug…a full body, chest to chest, wrap her arms around my neck ending with kisses on her cheek and a hugs mugs on her nose. A Hugga mugga is something she got from watching Daniel Tiger, where you rub your noses together…sort of like an Eskimo Kiss and say…hugga mugga. So as I am writing this Tina, Jeremy and Zack come in my office. They are going to the cemetery in a few minutes. They are going to bang pots and pans at midnight with Lily. I can’t hugga mugga her anymore but this I can do. I can stand in the cold at midnight on this New Year’s Eve and bang a wooden spoon on a pot over my baby’s grave…just like I promised her I would. And I can tell her how much I love her. She won’t hear me…or maybe she will. Happy New Year’s everyone. I guess I am going to a party after all.
Posted on: Thu, 01 Jan 2015 03:44:52 +0000
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