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How is it possible for my dad to even have such a rare disease? No one has ever heard of Creutzfeldt–Jakob Disease, more commonly known as CJD, outside of a neurology wing. Strokes are common. At first they thought my dad had suffered a stroke. I wish it had been a stroke. Why couldn’t it have been a stroke? Why did it have to be this stupid, incurable, and incredibly rare disease? I don’t have the answer to these questions. No one does.

Mom, Beth and I are driving to the hospital. This is the second one he’s been at. The first one was close to our house just over in Middletown, NY. Westchester Hospital is in a town called West Plaines, just north of New York City. It’s a long drive, but we make it almost every other day. We try to talk on the way there, but there isn’t anything happy to talk about so we sit in silence. I know what they’re thinking because I’m thinking it too. Dad is going to die. That’s it, game over. He’s already gone. His heart may be beating but he isn’t there anymore. That’s what CJD does to you, it shuts down the brain. The fog is dense today. Only the tippy top of the Tappan Zee Bridge is visible. I can barely see the car in front of me at this point, but more importantly mom can’t see any better than I can. The traffic is about as fast as a slow crawl, or as my Grandma would say, it’s slower than molasses in January. No matter how you slice it this drive seems never ending. The bridge is exactly 16,013 feet long so this is going to take a while. Finally I can see the castle like structure that is Westchester Hospital. Mom hates paying for parking here, but it’s the only way to see my dad and to her that makes it all worthwhile.

How many times have I been to this place where my dad has come to die? Sometimes it feels like I never leave. Sometimes I wish I didn’t have to. I know I have to go to school and do homework, but those things don’t seem nearly as important as spending time with my dying father. I walk in perfectly straight lines, and turn at ninety degree angles into my next straight line. It usually drives my mother nuts, but she’s too busy thinking about Dad to care about how I walk. People probably think I’m crazy, but walking is one of the few things I can control. There are so many uncontrollable aspects of my life. I have to go to school, do homework, eat with the family, finish chores, and help clean up the dinner table. I’m just a child. I have to do what my mother says. I could fight with her about these things, but I know she’s having an even harder time than I am. Consideration for her feelings is as important as consideration for mine.

My train of thought ends there. We have arrived in the hallway that my dad’s room is off of. Mom grabs my hand, and I realize it’s shaking a little. As much as I hate the hospital I wish I could come here every day, just to see his face one more time. There’s no way of knowing when I’ll see him alive will again, so I am taking as many opportunities to come for visits as possible.

His room reeks of same awful smell that the rest of the hospital does. You know the smell if you’ve ever been in a hospital before. If you’ve never been in one that you can remember then you’re luckier than you know. Hospitals smell like everything has been sterilized, but the air is somehow stale, like it’s museum that no one visits. He’s laying there in bed, and I have to fight back the tears. I squeeze Mom’s hand, she squeezes back. It will be okay as long as we have each other.

“Hi Daddy.” I say under my breath. In my heart I know he can’t really hear me, but the conversations we have are really just my coping mechanisms. If he ever responded verbally I don’t know how I would react. Today it’s not just Mom, Beth, and I in the room like it usually is. Two of Dad’s brothers, Ed and Dave, are also here. They let us know when they were coming so that we could make sure to be there at the same time. Mom says that Uncle Dave and Uncle Ed are vultures, and that they aren’t getting anything of Daddy’s. If that is what they want it will never come to fruition. I know my mother and it will never happen. Uncle Dave looks like a vulture, wrinkly and cautious, as if he’s always watching and waiting for a moment of weakness to arrive. Uncle Ed doesn’t look anything like a vulture. He’s plump and kind with an easy smile. I think he just wants to visit his brother, but not Uncle Dave. Mom is right about Uncle Dave, he’s a vulture. I am sure of it. The proof is all over his face.

They all talk to each other for awhile, but I don’t feel like talking to anyone. The chair legs make a creaking sound on the floor as I pull it up to his bed. I’m thinking go away if you want to talk to each other, I just want to talk to Daddy alone. I knew I wouldn’t be able to talk to him in front of other people. Whenever Mom and I went by ourselves we would each leave the room so the other could be alone with him for awhile. Eventually both Uncle Dave and Uncle Ed got calls from home and went out into the hallway to talk. Beth hates to be around Dad in the hospital. She always says that isn’t how she wants to remember him. I can understand that, but this will not be the way I remember him. Lying in a hospital bed surrounded by whitewashed walls unable to communicate in any way with tubes coming out of every orifice is not how I will remember my father. Not when there are so many better memories with him to choose from.

Mom looks at me and asks, “Do you want to spend some time alone with him? I can leave the room for a while.”

I reply, “Yea, thanks Mom.” She gives me a small smile and leaves the room. I am finally alone. I tell him about everything that has happened since I’ve seen him last. No one knows if people with CJD can hear you in these late stages of the disease. Some doctors say yes, and others say no. Most of them say try it because you never know for sure. There is no cure so there’s no one who has recovered who can tell them. It has only been two days since I have seen him last so there isn’t a lot to tell him about what is going on in my life. I work on finding a comb, and when I do I made his hair look like it usually did before the disease. He still has his solar panel; I mean bald spot, right at the top of his head. I start humming a little bit, and then softly singing. I would never sing loud enough for anyone outside the room to hear me. I don’t want to disturb anyone. I reach for his hand and continue to sing. I start telling him it is okay if he wants to go and that I will be okay if he does. I will miss him more than I have ever missed anything in my entire life. Making up lyrics as I go I just keep singing through the tears glistening on my face.

As I stand there singing my silly little made up song, and he suddenly sits up and falls onto me Being a ten-year-old girl I am barely strong enough to support a fully grown adult male. Getting him back into the bed on my own was out of the question. Crouching there awkwardly trying to keep my dad from falling onto the floor, which is my only other option to holding him up at the moment, is how Beth finds me. She starts by walking into the room but upon seeing me she starts to run towards us.

“Nurse!” she calls to the nurse standing outside in the hallway. “Nurse we need help in here now!” The nurse just laughed thinking Beth being a fifteen year old was just playing a teenage prank on her. “Can you hold him for a little longer while I go get Mom?” She questioned me.
“I think so, but hurry, please!” I retort starting to panic internally, but trying to show none of my fear to Beth. Mom and Beth hurry back in and between the three of us we get him back into the bed, and off of me.

“Are you okay?” Mom asks in a concerned voice. I nod feeling relieved, trying to wrap my mind around what just happened. Mom returns to the room with a doctor. He has graying brown hair and black geek chic glasses. His eyes glance over to me and then go to Dad. The doctor checks his vitals and then walks back to Mom.

“Why did that happen?” questions Mom. “How is it possible for him to sit up on his own like that at this point?” Dad hasn’t opened his eyes, talked, or moved at all for the past four weeks. He shouldn’t be physically able to do anything on his own. He was only alive because of the tubes that are connected to him at all times.

“I have no idea why he sat up. It should not have been possible, at this stage of CJD, for him to do that without support.” The doctor answered.

I smile to myself hiding it behind my knees. It was a miracle, but not just a miracle it was my miracle. You might think it was just some random spasm, but I choose to believe that he heard me singing to him and was telling me he loved me to in the only way he could.
Soon enough it’s time to leave. We all say goodbye to Dad and walk out the way we came in. Mom fumbles for the ticket stub on the march back to the van. The booth attendant tells us to have a good day and Mom returns the courtesy. The drive home seems shorter than the drive to Westchester. We talked about what happened and Mom agrees with me, she thinks he heard me too. I don’t know for sure if she’s just saying that or if she actually concurs. We pull in the driveway and amble into the house. It’s time for bed, I’m exhausted. The last thought that crosses my mind before falling asleep is I love you Daddy, and I’m going to miss you more than anyone will ever truly know.





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