
Friedreich's Ataxia
"The only way to make sense out of change is to plunge into it, move with it, and join the dance." -Alan Wilson Watts
Valentyna's POV
Mama and I had just landed. It had taken half of the night to get to the connecting Airport.
"Mama. Why did we leave?" I asked her, very tired and tripping over my words.
"To get you help. If the doctor back home can't figure out what's wrong with you, then surely a doctor here can find out what it is that keeps causing you to pass out," She told me. I stayed silent.
We went up to the counter for the people to check our passports. When that was done, Mama exchanged all of our money for American dollars, and we went up to a different counter where Mama brought out a lot of papers.
It was both of our birth certificates as well as other papers. The people at the counter gave us both other papers and I was astonished by what I could understand of it, which was very little. What I could understand, was that these were papers to make us American citizens. These made it clear to me. We weren't going back to Fedir.
"I never got to say goodbye to them..." I whispered, but I knew Mama had heard what I said.
Still, I filled out the form, and helped Mama fill out hers. Two hours later, we were sent on our way with very official looking cards proclaiming us US citizens. We had collected our luggage before we went to the passport counter, so we both made our way to the front doors. I was exhausted from having been awake for it all. I was completely out of breath by the time we got near the doors.
Suddenly my eyes rolled to the back of my head. My body tilted back to hit the floor, and everything was whisked away by total darkness.
(ノ◕ヮ◕)ノ*.✧++✧.*◝(◕ヮ◕◜)
(This is Jonathan and Joshua. Protect!)
When I woke up, it was to the sound of beeping and a constant drip. There was low talking and I could hear muffled crying.
I was a bit surprised to find that I could understand the low talking.
"I'm very sorry, ma'am. I can't even begin to imagine how hard this must be for you. But, there are certainly options we can look into," a man spoke. His accent sounded American though.
"She's just a girl. She's my baby girl. Why her? Why her?" I could hear Mama whisper. Her voice sounded thick, and I realized that she was the one crying.
"It is a pretty rare disease. Has anyone else in your family had issues like her's? Fainting, shortness of breath, heart problems, muscle weakness?"
There was a pause as Mama thought about his words. I suddenly got a headache and groaned, hearing Mama gasp right after and rush to my bedside.
"Valentyna! My baby girl, are you alright?!" Mama hurriedly asked me as I sat up, with a bit of difficulty due to the tube that was entering my arm, the source of the dripping sound.
I could only think of what the man had said. Now that I could see him, he was a short, very dark skinned man with a small bit of stubble on his chin forming a small beard. He was wearing a doctors coat, and the tag identified him as 'Dr. Oliver Homes'. He looked like an outsider looking in, unsure really of what to do at the moment.
"What's wrong with me, Mama?" Was all I could really manage, out of the hundreds of questions flowing through my mind at the moment.
Mama didn't answer. Instead she brought me into a hug, and I could feel my shoulder start to get wet from her falling tears. Dr. Homes just took that as his que to leave the room. As I looked around it, I saw there was another bed next to my own. This one was freshly made, no occupant in it's sheets.
I looked around and saw a label on a white board near the door. 'Metro-General Hospital' it read.
I finally returned Mama's hug and after a few minutes, Mama pulled away and brought her hands up to hold my face. Mama was actually quite young, only 32. But right now, her eyes red with tears, I saw a woman battered with work and pain and sadness.
It was the look Mama had a few days after Papa died, after she had to stop being numb to the world.
"Mama. Please tell me. What's wrong with me?" I pleaded her. I didn't want to make her sad. I wanted her to be happy.
Once more, she looked absolutely devastated. I could tell she didn't want to say it.
She was saved from having to when a woman entered the room. She was carrying a tray of an assortment of medications, and had me eat one of each, before handing Mama the bottles that held them.
As the woman left, the Doctor came back in and called Mama to him.
I couldn't really hear what they were saying now since they were whispering. But I saw Mama nod a bit, and when the Doctor continued she brought her hand up to her chest and more tears fell. Mama allowed the doctor to come closer to me and he took a breath before speaking.
"You want to know what's happening, correct?" I nodded. Of course I would want to know. I was just worried because it had made Mama cry.
"You have a very rare disease. It is known, as Spinocerebellar Degeneration. It also goes by the name Friedreich's Ataxia. I'm truly sorry, but there is no known cure for Friedreich's Ataxia." He turned so that he was addressing both Mama and I. "There a certainly options that you can look into. The medications that you were given will help counteract some of the symptoms. There are surgeries, but they aren't recommended." He turned back to me. "Can you please tell me when you first started to experience the symptoms. Fainting, shortness of breath?"
I looked at Mama and felt terrible for lying to her. Then I looked back to the doctor and spoke. "I was around 8 when I started passing out. I was maybe 7 and a half when I started being unable to catch my breath quickly."
The doctor nodded before writing it down and turning to Mama. "She should stay here, at least for a day or two. This way we can screen her to see if she has any other medical issues. We should also scan you as well, to be sure."
Two days went by, filled with medical test after medical test after medical test. Through the testing, we found out that because of my Friedreich's Ataxia, I also had developed Heart Disease and Diabetes. Mama spent a lot of the pig money paying the bills, but she was able to pull it off.
She rented us a very cheap apartment. It was small and there was really only one room that connected to everything. Just like home. But this place had running water, and a small kitchen area, the ceiling were high and the floor was shiny wooden panels. It had it's own stove, refrigerator, microwave, two sinks, and a dishwasher, somethings we had never had back home. There was a closet too.
This was in a place called 'Hell's Kitchen' near a hospital since the man had said that it would be good for me to have regular check ups, and Mama used all but $50 of our remaining money for the place. We put our things there and Mama reminded me to take my medication. There were eight different pills I had to take twice a day.
Mama had gotten a job at a dry cleaners, though she still didn't now any more English than I did.
A week after we moved into our house Mama walked us to a large building that had many kids around. It was midday and so people noticed us walking up. I could see an even larger building attached to this one.
It read 'Midtown School of Science and Technology'. The smaller part that we were headed into had a similar sign, 'Midtown Middle School of Science and Technology'. From what I could understand of it, this was a school. When we got inside, Mama depended on me to lead her.
We made it to a door labeled 'office' when a bell rung. Other children flooded the halls and were going down into different doors. A school. I saw a little runty boy with brown wavy hair talking excitedly with another boy, this one with brown skin and short black hair. Something about 'Legos'. I noticed him because he seemed to radiate cheer.
Another kid, a tallish boy with brownish skin and wavy hair brought his hand up to cheerful and shoved his head down as he was passing.
"Watch your head Penis! It got in my way!" Well I know he's a mean kid.
The other boy just shrugged it off and continued to talk with his friend about legos until he was down the hall and both walked into a room. I turned away and Mama and I walked into the office.
There was a happy looking man talking to a woman to the desk.
"Sharon, how are you, hows Oslo?"
"Oh, I'm good Stan, but Oslo just had leg surgery. He's still a little handful though." The woman replied back.
"Yeah, he's the most rambunctious pug I've ever met."
The woman saw us then. "Oh! Looks like we have new people." Mama and I walked up to the desk.
"And who might you two be?" She asked Mama.
"Valentyna. She is Zoya, my Mama." I replied. I knew that Mama was still a bit bad at speaking English.
"Are you here to enroll?" She asked.
Mama nodded and the lady smiled.
"Oh! I almost forgot to ask, is english your home language?"
I shook my head and she started looking through the papers while speaking again.
"What language do you speak at home then?"
"Ukrainian." I answered her. She found the papers she was looking for and handed them to us. It was in Ukrainian.
"When you're done filling it out, we'll transfer it into an English copy." She smiled and then went back to talking to the man. He had a lanyard on that identified him as 'Stan Lee' the librarian.
Mama and I filled out the papers and around an hour later, I had my picture taken, and an ID was given to me, signifying me as a student of Midtown Middle School of Science and Technology or MMSST. The lady behind the counter was a bit surprised to know that I had Friedreich's Ataxia(FA) and had to take so much medication for it.
I got a schedule that placed me in one class for the beginning of the day to learn English better. Mama and I were taken on a tour of the school, the middle school block that is, and I was told I would be in grade 6 rather than 7. I didn't mind though. It was a Friday, so I wouldn't go to school until the weekend was over. When I was shown the class I would go to after lunch, I noticed it was the same door as the cheerful boy and his friend. The bully also had gone into this door though. I could always try and start 'Drop Stretch' if he tried to bully me.
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