One of the very hardest things for me, about losing Grace, is this. I wasn't there. My baby didn't die in my arms, surrounded by love like almost every single other baby I read or hear about. I don't know anything at all about the day my daughter died. And it kills me. I wanted to be there. I want know about her day. My daughter died around 2:45 pm and I don't have a clue what at all transpired between 9 am that morning and when she died. When I spoke to her nurse around 9, she just told me that Grace was fine, that she was being a little fussy but that she was looking at herself in her mirror. She told me that they planned for an ECHO that day (which i knew) and that she had had a lot of diarrhea overnight (that i was not aware of) I knew the nurse she had, and the nurse had taken care of her before, but she was not one of her primary nurses and she didn't take care of her very often. I knew she was competent but I also knew that she was not going to do anything extraordinary for my baby. I knew that if Grace was wanting to be held for hours, she wouldnt do it. I knew she wouldn't take the extra time to be sure Grace had a matching bow and chapstick on.. She wasn't bad, she just wasn't the type to do that. I remember texting Adam that I felt like I wanted to go there, and all day long, I had an uneasy feeling. I just felt like I should go. I remember thinking a few times that I would call my mom and see if she wanted to come with me and the boys. But then I didn't. Because of logistics with the boys and Adam and her, and gas. My daughter died alone partly because I was worried about gas costs.
A few days before Grace died, a family member told me that maybe the reason she wasnt home yet, was because of my sons. She said, that they were a lot to handle, that they were not doing well with me and Adam always being gone, and that Grace had nurses to care for her, and I needed to be spending more time with my boys. That maybe if I made our home better with my boys, Grace would come home, because being around the boys was going to be stressful and hard for her. She wasn't the only one who had said that, it was said to me in a few different ways by a few different people.Nurses, and family both. I wonder, if everyone who said that, thinks it was better this way, because this wasn't a place for a sick baby, and I wasn't the mom who could handle it all.
Because of that, I stayed home.I did all of Graces laundry so I could bring it that night. I filled out soccer sign ups for my kids and I put them on the counter, to go register after I had put dinner in the oven and pumped. Because my kids had eaten so much pizza, spaghetti, mac and cheese and hot dogs over the last few months, I set to make them a real dinner. I breaded chicken drumsticks in panko to bake. They had liked it before and called it "Viking chicken".. I figured that it would bake and be good reheated for when Adam got home, and I left. I thought, he could feed them, without much work and then go to the pool.. All day long, I fought the urge to call and check on Grace because I didn't want to be a bother. I didnt want to annoy her nurse or the clerks. I pushed every single concern to the side and told myself that I was being selfish for spending so much time with her and with her on my mind. I told myself that everyone was right and I needed to be home. And then I got the call.
I was so dumb, I didn't realize at first that there was any urgency. However, when I hung up the phone, I knew my daughter was either dead or was dying. I remember screaming to my boys to get their shoes on and they did. I called Adams cell and he didn't answer, I called his direct line and he didn't answer. So I called the general line and it was his boss that answered and I remember being panicked by that point. At work, he was an hour and a half away from the hospital at least. He never saw it coming.
I know every last detail of my day that day. I can't forget a second of it. And yet, I know almost nothing about my daughters day. The nurse who had her that day, never came around us. Dozens of nurses and Dr's stopped by and said goodbye to our beauty girl and cried with us. Not her. People shared with us, stories of her and made us know they loved her too. But not the last person to touch my daughter alive. Months later, we stopped into the NICU while we were there for the walk to remember. There was a nurse at the desk and she told us that the nurse was there, she said "let me go tell her youre here, she can come say hi" and she never came out. We stood and talked to others for a few minutes but she never came out. She knows everything about Graces last day alive and I know nothing. Instead of me being the last person to touch my daughter alive, it was her and does she even remember her? I dont have a clue. Was the last touch my baby felt, alive, a loving one? She died in a swing, how long had she been in there? Did she wonder, where I was? So many quesions swirling around. Someone said it has to be very hard to be the nurse caring for a baby who dies and while I would agree, I just cant help but 4 years later be hurt that we were ignored. I would love to hear about my babys last day.Would a "im so sorry, she looked beautiful this morning" have been so hard. A sympathy card even.. I would love to know that it was good. or maybe it wasn't.Maybe, her day was rough, and maybe her nurse was concerned? I have no idea. Did she truly and honestly have a great day with no issues and suddenly just die? Out of nowhwere? God, I just want to know. Some people have said that it was good I wasn't there because "can you imagine how hard that would be?" well, its killer to have no idea. To go from planning on seeing your baby in a few hours to all of a sudden she's dead with nary an explanation hurts far more than it would have to have held my daughter and told her I loved her as she flew into heaven.
I know this is a little different from anything I've shared before but its weighing heavy lately. It is simply one of those things that I need to work on getting over, I suppose, because what good does it do me?
