Goldfish

4 pm

Miss Lucy and Dr. Singh are letting me visit my house tonight! Normally I get to go home for twelve hours on holidays, and an aide comes with me to monitor my equipment, but today is different. It’s not a holiday, it’s not my birthday, it’s not even the weekend— but I’m going home! Mommy says Lily will be home too even though she goes to college in Iowa. She’s coming home just for me for my special visit. And Daddy says we’re getting my favorite food ever which is Chinese takeout from The Golden Dragon. I never get to eat Chinese in the hospital. The cafeteria is okay… they have ice cream all the time and pizza usually, but never Chinese. I don’t know why. Mommy says to pack my favorite jammies and my stuffed gorilla Nala because tonight, we’re staying up late in our jammies and watching my favorite movie! This is the best day ever. 

5 pm

Miss Lucy is my favorite nurse. She’s worked at St. Anne’s since before I was born! That’s what she told me anyway, obviously I don’t remember if it’s true because I wasn’t born yet. But she’s good at telling the truth, so I guess you can believe that fact. Sometimes doctors don’t like to tell me the truth. They think I will be scared, since I’m only seven and a half. But I think that’s stupid, because I’ve lived in the hospital most of the time since I was a baby, and I’ve had sixteen surgeries since then. I know what it’s like, and I’m not scared— I’ve probably been to more surgeries than they have anyway. Sometimes doctors are too serious. But Miss Lucy always tells me the truth.  We made an agreement when I was four to always tell each other the truth, with a pinky promise. You actually can’t break those. 

For example, last year when I had to get my stoma bag for the first time, she squatted down next to my bed so I could see into her eyes, and she said very serious: “Now Tilly, you need to listen closely, this is very important. Are you listening?” She was using her doctor voice— the one she uses if there are other people besides me listening— so I nodded and put on my serious-doctor-listening face. She told me,

“This bag is a highly specialized piece of medical equipment. It’s expensive, it’s top-of-the-line, and you’re very lucky to have it. I’m here to teach you all about it. This bag, it’s going to fill up with your… poop.” I tried very hard to keep my serious face but it was just too funny! I laughed so hard when Miss Lucy told me about my stoma bag, and she laughed too. She was just pretending with the doctor voice. That’s why I like Miss Lucy. She tells me the truth.

6 pm

Miss Lucy and I are watching Mr. Roger’s Neighborhood while we wait for Daddy, and I am too nice to tell her that it’s actually very boring. I guess maybe she likes it a lot, because I can see her sneaky tears while we watch. Sneaky tears are a special kind of crying grownups do where they look up and touch their eyes a lot so people can’t see the tears fall down. Mommy and Daddy use sneaky tears when the doctors tell them something bad about my body, but they don’t want me to be scared. Lily uses sneaky tears when she calls me from college because she is sad she can’t be here in person with me. Miss Lily only uses sneaky tears when she tells me that one of my hospital friends has “passed on”. That means died— they don’t ever say “dead” at St. Anne’s, even though kids die a lot. I don’t know why. But now she is using sneaky tears for watching Mr. Roger’s. I’m not trying to be mean, but it really is not that sad of a show. He just sits there and talks and sometimes there’s puppets. Today’s episode was about his dead goldfish. I guess Miss Lucy would say “passed on” goldfish. I mean really, it’s not that sad. But I watch it with her because I guess she must be really tired if she’s doing sneaky tears about a goldfish and she probably just needs someone to sit with. 

7 pm

Finally, Daddy is here! He talks outside of my room with Dr. Singh and they have serious faces on. I should tell Daddy that he doesn’t have to use the doctor face because actually he is not a nurse and he doesn’t have to pretend that he’s not fun like Miss Lucy does. Dr. Singh gives Daddy a hug before they come into my room. Wow! Dr. Singh is very serious and I don’t think he ever hugs anyone. They walk in and Dr. Singh sits in the chair by my bed while Daddy waits in the doorway. 

“Matilda,” Dr. Singh says, 

“I just want to tell you that it is an honor to work with you, and I hope you have a great trip tonight. It’s going to be so fun.” His words are happy, but his face is sad. I think maybe when you grow up you get confused about your face, because everyone is doing the wrong ones tonight. I whisper to Dr. Singh, 

“I’m getting Chinese food, and Lily is coming over,” and he doesn’t even pretend to not cry. Maybe he’s confused. 

“Dr. Singh, Chinese food is my favorite and I actually like Lily! I was telling you a happy thing, not a sad one.” I smile big so he understands, and he tries to smile too, but one tear falls out of his eyes. 

“That sounds wonderful, Tilly,” he says and actually gives me a hug too before he walks out of the room. Daddy walks over to my bed and says,

“Ready, Til? You get Nala?” I smile big and hold up my gorilla— I would not forget Nala ever! She went to every one of my surgeries with me— even the ones before I can remember. My grandpa bought her for me when I was born in the hospital. Daddy picks up my yellow duffel bag and I climb out of the bed to go with him. 

Before we leave, Miss Lucy kneels down and gives me a very long hug. It’s nice of her, and I hold on a little longer because I think she is sad today. I feel bad for telling her about all the fun things I get to do tonight because if she is sad, that’s kind of mean. 

“Have the best time, Tilly. I’ll see you tomorrow. I love you,” she says, and I smile as I pull away from the hug. 

“I love you too, Miss Lucy. See you tomorrow—I hope you feel happier by then!” Daddy takes my hand and we walk out to the elevator together. Right before the door closes, I see Dr. Singh and Miss Lucy hugging. Miss Lucy is crying, a lot— not sneaky crying, but the real kind. When I get back, I’ll have to tell her: “no more Mr. Roger’s,” because no one should ever be that sad over someone else’s goldfish. 

8 pm

I fall asleep on the ride home, but Daddy wakes me up when we get there. Lily runs up to the car and carries me inside. I actually am able to walk by myself, but I let her carry me because it’s fun. Mommy has already set up the dinner table: there’s rice and egg rolls and chicken and red sauce and fortune cookies! Yum, yum, yum. When we’re all sitting down, I pick up the four fortune cookies and very carefully hand them out to each person. I get to pick who gets which one, and it’s funny to hear the fortunes everyone gets. I always pick right. 

9 pm

I’m getting very sleepy because normally my life is not this exciting! I usually eat at the cafeteria and then do my coloring book before my evening treatments. Then Miss Lucy will help me get ready for bed and that’s it. Tonight, there’s dinner and Lily and a movie with popcorn and candy! I have to stay awake because it’s so fun. Lily lets me sit in the middle on the big couch, in between her and Mommy, and Daddy sits next to Mommy like always. We have popcorn with Reese’s Pieces melted on top— my favorite. Mommy turns on The Lion King, and me and Lily sing the songs really loud when they come on. Lily lets me sing Zazu’s parts because they’re the funniest. I snuggle into Mommy when the scary part comes on, but I know it’s okay because it’s just a movie and anyway I’ve seen it before. I still don’t like it when Simba’s daddy dies. It reminds me of when my hospital friends “pass on” and then their families are so sad. I don’t ever want my family to feel like them or Simba. I still love the movie though. 

10 pm

Mommy said for my special night I can stay up as late as I want, and I don’t even have to do my night treatments. This is good because they take a long time and are actually very boring.  Lily says she’ll take me on a drive if I want, which is the best idea ever because she has a convertible. A convertible is a kind of car with no roof. Wow! I am feeling very tired and achy, but I don’t want to tell Mommy because then she won’t let me go in the convertible with Lily. I choose to go to a special gas station that makes milkshakes and never closes, and Lily lets me ride in the front! She buys me my favorite and then we sit in the driveway looking up at the stars while we drink our milkshakes. Lily tells me about the constellations, and how when we die, we get to go be a star. I actually gasp because I never knew this before, and I point at my favorite constellation: Orion. 

“I’m going to be a part of the belt when I die. I’m telling you because you won’t recognize it with an extra one and I want you to be able to find me.” Lily pulls me into her lap so I am sitting in the front seat and says,

“I’ll always be able to find you, Tilly.” 

11 pm

The Chinese and the movie and the milkshakes were so fun, but I am actually feeling very bad now. I was so distracted by all the fun that I didn’t notice how much my chest was hurting, but now that it’s more calm I can feel it a lot. Mommy holds me on the couch and we listen to Daddy play my favorite song on his ukulele: Somewhere Over the Rainbow. I like it because it’s sad and happy at the same time, which is how I feel about my life. I am sad to be in the hospital all the time, but I am happy because of Mommy and Daddy and Lily and Miss Lucy and Dr. Singh and all my hospital friends. If I was normal, I would never have met some of them! Mommy gives me a sip of something— it’s bitter and I want to spit it out, but then I just feel sleepy and cozy. My eyes feel very tired and my body wants to go to sleep, but I don’t want to miss any of my fun night, so I try very hard to stay awake. 

12 am

I am almost falling asleep to Daddy’s ukulele music when I start gasping. It’s hard to breathe, and I know I need my machine. I try to tell Mommy what’s going on, but she just hugs me tighter and keeps saying,

“It’s okay, Baby, it’s okay.” It’s actually not okay, but I don’t want her to be scared. I try to take slow, deep breaths like Miss Lucy taught me, but it’s hard. My lungs don’t like to do their job, and when I get scared about that, they actually start working worse. Somehow they know… I try to think about something else so my lungs won’t hear my scared thoughts and stop working. Mommy gives me another sip of the juice and I don’t even care that it tastes so bad, because my lungs like it and they stop hurting right away. I whisper to Mommy if she can tell me a story, so she tells Lily to go pick some books. We all sit on the couch and Mommy and Lily take turns reading my favorite books to me. I hold Nala up so she can see the pictures. Daddy went to his room and I can hear him blowing his nose a lot. I hope I didn’t make him sick. 

1 am

Mommy and Lily are reading books and singing songs, but I can’t really hear the words. Everything looks blurry and too bright, and I can’t tell if I’m dreaming or awake. It’s not scary though, just different. My mouth tastes bad— I think Mommy gave me more juice. My chest doesn’t hurt at all any more. Actually, nothing hurts any more. All I can feel is warm next to Mommy and soft under the blankets, and the blurry noise of singing and reading feels nice. 

2 am 

I’m dreaming, but my eyes are open. Everything is warm and bright. Mommy is singing somewhere far away. Lily is crying, or maybe she’s laughing. I can’t tell. Daddy is somewhere close. I can’t see him or hear him, but I recognize his perfume. Actually, when men wear perfume it’s called something else… I can’t remember. He won’t have hurt feelings if I just call it perfume. 

3 am

I wonder if Orion would even let me join his belt. I’ll have to make sure to ask politely.  

4 am

“It’s okay, Baby, it’s okay. You can go.” Mommy’s voice is very far away, almost like when Lily calls me from college. She just keeps saying that: “you can go, you can go.” Where does she want me to go? I try to ask her, but I can’t make my mouth obey my brain. Actually, I can’t make any of my body obey my brain. I can’t move at all anymore… but it’s okay. I don’t want to move. I just want to sleep. This was the best night ever, and I’m filled up with happiness. The only thing that makes me sad is that I lied to Miss Lucy for the first time. I don’t think I’ll see her tomorrow after all. Mommy starts humming Somewhere Over the Rainbow, soft and perfect, and when she finishes the chorus, I go— just like she said I could. 

5 am

They are crying, all of them. The hospice lady rolls me away in a black bag. I wish they had yellow, it’s my favorite. But it’s okay. Daddy cries the most— I wish I could tell him how nice it is on this side. I hope he doesn’t come soon though, because he still has Lily and Mommy to take care of. I wish I could tell Miss Lucy that I have passed on, but I think maybe she already knows. I think she told me a lie for the first time when she said she would see me tomorrow. I think I’m the goldfish that made her cry. 

I look down at my family and wave one more time. 

“I love you,” I whisper, and I think Lily looks up. But I’m already on my way to the stars, and I don’t look back to check.