This morning Marian had an ultrasound. Sounds pretty painless, right? If I were to chat with someone casually and they asked what I did today, I'd say, "Marian had an ultrasound this morning," and if asked how it went, I'd say, "fine." But, like everything, there are so many little things that are enveloped, hidden, and left unsaid inside those words, ready to be forgotten and put behind us.
Marian's last ultrasound was the day after her NPC diagnosis. I barely remember it. Well, I actually remember it very well, but I don't like to remember it.
Today we, Marian and I, drove through traffic with Marian, crying and fasting. I was singing along to Elizabeth Mitchell's "Don't Worry About a Thing" while simultaneously honking my horn at someone who wouldn't let me over. I started the song over after that since I figured that wasn't very zen of me.
We arrived at the hospital and marched over to radiology. Our time comes to be called back. We entered the ultrasound room, dim lighting with a bed in the middle, a tv in the corner playing Super Y. Six months older and stronger than last time, so very grateful, but also more aware and more afraid.
Marian shook her head no and cried and cried clinging to me. Rolling around the bed trying to get off. We sang songs, played music, told stories. I lay on the bed and she lay on top of me. That didn't work. Screaming. She eventually stopped fighting. She cried as the monitor was pressed into her swollen belly, sending waves to measure, how big is your spleen. How big is your liver. Are there any growths on your liver? Because, by the way, kids with NPC are at risk of liver cancer over time because of the constant liver regeneration. Are there any cholesterol and fat deposits visible in your liver? Where are your other organs since your spleen is about the size of a ten year olds and pushing things around.
We eventually ended up both on the bed, Marian laying on her back leaning towards her left side towards me. I sat by her hips. She reached out each of her hands and held my hands. Gripping them. She lay there whimpering. She looked me in my eyes the whole time. Eyes wide. Trying to be brave. She stopped crying but her lips were quivering. Her eyes filled with tears and a single tear escaped and rolled down her face. I looked down at my big hands holding her little ones, her fingers and my fingers together.
I thought how beautiful she is. How much I love her. How many people are rooting for her. And how she can live. How she should live. Could live. To please live. We fall sometimes into the lull of normal life, she is doing so well, we are so grateful, it briefly can escape the mind that this is still real. This is still happening.
I haven't written about this because it is heart breaking, but last month I went to a funeral for a beautiful little girl with NPC. She was five. The coffin was so small. Her dad held her hand like I was holding Marian's. Except Marian is here with us and she is no longer.
Today after the ultrasound Marian sat up and climbed into my lap. She ate her snack and the fear evaporated, she was happy and calm. The ultrasound tech gave her three stickers that she carried proudly out of the room. She wanted to walk slowly through the hospital pointing to this and that, the butterfly on the wall, the painting of the flower. We rounded the corner and saw a huge inflatable snowman on the other side of a window. Marian pointed "that" "that" and power walked over to it, shifting her weight left, right, left right as she motored over, beaming.
We walked into the garden decorated for Christmas complete with Sesame Street Christmas Carolers. Marian spotted them clapped her hands and shouted "yayyyyyy" and hustled over, saying "Ella" "Ella" for Elmo and "Roarrrrrrrr" when she saw the bear and then turned around and said "cheeeeeeese" for a picture in front of the Christmas tree.
When we got home she asked to go "ni-night" and I checked my computer to see an adorable child with NPC died on Sunday. He was five.
So that is what we did this morning, Marian got an ultrasound and it went fine. Results pending. I believe in my heart Marian will live. At the same time, I fear she will not. There is so much hope, research, support, therapies in development, therapies that can be developed with more funding. It is possible to live. She is so loving and loved. She should. But so are all the NPC kids who are lost. Emily asks all the time, "when I am five, Marian will be three," "when I am seven, Marian will be five" "when I am nine, Marian will be seven." And we say, yes, that's right. That's right.
