Other favorite things we enjoyed with Grace were listening to Norah Jones and classical lullabies; counting the number of steps to and from a diaper change; washing her hair and putting on lotion after a trip to the spa; laying cheek to cheek and stroking her beautiful face and hair; and reading Dr. Seuss books.

Despite the effects of the disease Alysia and I were very in tune with Grace and could read her subtle cues to interpret her reactions. Grace loved Dr. Seuss and we would read it to her endlessly. We could tell that when we started a Seuss story it would register with her and she would pay attention. Her favorites were “One Fish, Two Fish…” and “The Alphabet Book.” We also read several others to her. We read them so much we memorized them and often wouldn’t even need the book. It got to the point where even snippets of conversation that reminded us of the text could launch Alysia and I into simultaneous recitation.

In early February Grace developed a high fever and began having labored breathing. I never thought that we would use the oxygen canisters but we hooked her up. We kept alternating Tylenol and Motrin to bring her fever under control. It was just a brutal and exhausting day. Our dear friend, a pediatric ICU nurse, stopped by after work. I told her what was going on and she said, “Oh no, she has pneumonia.” Despite all of our suctioning, we could not clear the secretions and Grace sounded awful. After already working a twelve-hour shift, our friend stayed with us until the middle of the night. She surprised us with a wonderful gift -materials to make hand and foot molds. We were able to make molds of one of her hands and one of her feet. The detail captured by the molds is amazing, seeing her fingernails captured in the mold made me cry when I first uncovered it. We will treasure them forever.

We made her as comfortable as we could and Alysia, Grace and I went to sleep. I honestly thought that Grace would not be there when I woke up. Fortunately, she was and her fever broke a few days later. This was one of several times we thought we were close to the end only to have Grace rebound. Such a resilient, amazing, and beautiful girl! After a while I looked at her and told her that when she was ready she would know it and that I wouldn’t be able to figure her out so I would stop trying. I was just going to enjoy her for as long I had left.

Grace’s condition made even dressing her a challenge, as moving her arms made her uncomfortable. In the winter this was very depressing because we could only put her in clothes that fastened in the front and because of her fevers, this often meant t-shirts and a diaper. As Grace grew, we couldn’t find t-shirts big enough to properly fit her. We were so happy when it was warm enough and we realized that little girl tank tops that easily slide up made pretty dresses for her. It was a huge morale boost to see our beautiful girl in pretty dresses. It also meant that each new outfit would have to have it’s own “fashion shoot” with Alysia snapping away with the camera as Grace modeled her new clothes.

Time passed and we adapted as best we could and were better able to keep Grace comfortable. We spent long hours holding her in our arms, telling her how much we loved her, reading Dr. Seuss books and telling her stories, and playing dress up. Alysia and I began going into work less and less and were grateful for the flexibility our managers gave us.

One day, in early May, while I was at work Alysia called very concerned and said that Grace was breathing strangely and held the phone up to her. I was alarmed by the sound of her breathing and raced home. Although we had thought it was “it” in the past, this was different. From our description of Grace’s breathing pattern to her doctor, he guessed she had from hours to a day or two to live. We cried and cried. We knew she would leave us sometime but we would never be prepared for that day to come. It was then that I stopped going back to work and the three of us spent the next five weeks at home together. They were some of the best weeks we ever had. We got to spend time together as a family and there was a new sense of contentment that grew between us. We didn’t know how long we would have but we appreciated every minute we had as a family and Grace seemed very comfortable.

Grace’s birthday rolled around and we knew we had to celebrate one year with our sweet, beautiful girl. Alysia bought her a birthday tiara and beads for her to wear and a cute birthday dress (to be honest she bought five, we tried all five on and took multiple pictures in each). Grace’s grandparents came as did her doctor and some friends who helped care for her. Grace’s Grammy homemade and decorated two cakes. There were balloons and presents and it was a wonderful day. Grace knew that many people loved and cared for her.

Two days after her birthday, a Friday, Grace developed a fever and began having a lot of secretions. Her breathing was also much faster than usual. We started our fever plan to bring down her temperature and suctioned her to keep her clear. Saturday her fever was still high and was not responding to the medicine. Her breathing continued to be fast. We kept her in bed with us most of the day worried that holding her might make her warmer. Late in the afternoon I gave her a bath because she needed one and because I thought it might make her more comfortable. Baths usually soothed Grace.

After her bath and lotion, Grace’s breathing began to slow down. Downstairs in the usual spot, Alysia held Grace and told her how much she loved her. I then held Grace while Alysia cooked dinner. We ate together as a family. While Alysia was in the kitchen cleaning up, Grace’s breathing slowed further and I called her into the room. I told her that I thought Grace had stopped breathing. Alysia came into the room and looked at Grace lovingly and said, “No she didn’t. Hey, sweet girl. Hey, sweet Grace.” Upon hearing her mother’s voice Grace opened her eyes wider than I had seen in months to look at her and she breathed again. We gently transferred Grace to Alysia’s arms. She took one last breath and slipped away.

Throughout Grace’s life, we were blessed with the enormous privilege of loving, holding, kissing, reading to, and caring for our angel. We miss holding her hands and rubbing her cheeks and beautiful long hair. These pages are a tribute to the life of our Sweet Baby Grace.

We love her forever.

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