The first week was definitely the hardest. Holly and I were faced with making the necessary burial arrangements while our wounds were still open. We had family and friends in town to attend to. And we were dealing with business matters that couldn't be ignored. So I think we both felt like we were just hanging on by a thread. I don't think it was until after the memorial service and everyone had gone home that I felt like I could really start the mourning process.
Holly and I both like spending time in her room. It's the one place we feel the closest to her. We can sit in there peacefully and talk to her or reflect on our loss. There are a couple of blankets we haven't washed so we can still smell her and feel her close to us. We keep the onsie she was wearing when she passed away in her crib. And of course all the pictures and videos. We're so grateful we took so many pictures and videos. But I still wish I had more.
Here's a video I shot on September 22. I was working in the office and she was lying on the bed behind me. I remember hearing cute sounds from her. I turned around and saw her smiling. I grabbed my phone and took this video.
I know Holly and I remember the good times much more then the bad. The way the seizures progressed and ravished her poor little body. We were talking the other night about how quickly her condition deteriorated. She passed away exactly two months after being diagnosed with EMEE. What started out as 1-2 seizures a day had progressed to 40-50 a day. Even though at the time she died we started to see an improvement, it was clearly too late. We really felt we would have much more time with Grace then we did. We never expected her life to be cut so short.
I'm so grateful we had the good times though. Of course we had bath time, and going for walks but perhaps the one thing I miss the most was our late nights together. I would stay up to 1-2:00 am to do her late night feeding. Many times I'd hear her getting restless so I'd grab her and bring her out into the living room with me. We'd lie down on the couch next to each other and snuggle under a blanket. She would often fall asleep right away but I would continue to relish in the euphoria of having her next to me. It brought me so much joy and happiness. And I know Holly had the same special time with Grace early in the mornings. I think it means a lot to both of us that we each had our own special time alone with Grace.
Today the house is quiet and to a certain extent empty. Our lives used to be busy attending to Grace. She was always in the forefront. Now there is no one to attend to other then the dog. What was once the beginnings of our family, is now back to a couple and a dog. I know this hurts Holly so much. She so wanted to have a baby and be a mother. As much as I'm hurting I know it's much more painful for Holly. There is no comparison to the bond of a mother and child. Holly so loved being pregnant and establishing that bond with Grace. It was so evident when you look at the first few pictures of Holly holding Grace. I wish there was something I could say or do to help her, but there isn't. We talk a lot. We try and put things in perspective and apply some sort of reasoning and understanding to our loss. But they're only temporary rationalizations. There is no comfort to be found.
So we go about our daily lives trying to cope with our loss the best we can. I know it will take time, and lots of it for the pain to go away. But the memory of Grace will live on in our hearts forever.