Chassedy Wilson

English 131-J6

March 6, 2018

Reign of Invisibility

        To reign means one oversees a people or place and makes the rules.  Invisibility is the ability to not be seen by the naked eye.  Another form of rain is just that, water.  Have you ever had to pull over in your car in a downpour and turn off the wiper?  You know what it looks like, blurred images in the distance.  My story is one of all three.  The servant yet a master, invisible yet still there and unable to see for the tears running across my eyes.  I am a parent of a child with an uncommon, invisible illness.  As a parent I should be the master, but when you have to serve the rules of the public school system and the doctors who are supposed to be trusted and listen to you and believe you,  you become the servant.  Thus, you are invisible.  So is my daughter.  Then, the tears fall blindingly across both our eyes and cheeks.

        In November of 2014, we had moved to a new town because we felt the school district would be a good fit.  We watched a video of the principal and other staff dance to a current popular song.  You know, those you see on YouTube then hear about all the good deeds a teacher has done.  How well they are loved by the community and kids.  We failed to look into that part.  We went on what we saw:  smiles, laughs, hugs, dancing.  By watching you could just feel the upbeat rhythm of the song and how much fun it looked.  It put smiles on our faces and a good feeling in our guts.  That good ole gut feeling.  It failed us.  

What I endured, what I had to watch my daughter endure, was pure hell.  Come Christmas she started to get sick.  I watched her curl up in a ball on an air mattress on the floor.  I slept on the couch so I would be there when she woke up in pain.  Her head hurt and no matter what I tried, nothing relieved it. Her stomach was the worst part.  I tried to get her to eat and drink, but she would tell me “Mom, it hurts worse when I do.”  She described it as the feeling you get after being punched in the stomach.  Those needle-like after effects that shoot through your abdomen like fireworks and seem to take forever to go away.  Only they never went away, they lingered.  She would feel so hot curled up next to me and I would take her temperature. She would have fever spikes that were seemingly endless. Having been a nurse for ten years I felt like a failure and would cry in the bathroom. I would google on the computer and look through my old nursing books.  I couldn't help her.   Finally, I took her to the ER.  I dreaded it as I knew what would happen.  Since all hospitals and doctors are now ruled by one entity, the doctor and nurses are not free to treat anyone.

        The first ER of many, of what, hundreds? explaining the history of the last couple weeks and then months. Sometimes explaining three and four times in one visit.  Watching her go through the  first of what now seemed like thousands of needle sticks, blood draws, vial after vial of that deep dark gooey blood.  I cringed each time I had to see her go through those needle sticks.  I held her hand and each time felt the bones in my hand grinding together.  I endured the pain as best I could because I wasn't going to let her see the pain in my face.  The tears in my eyes. Then, the pushing and pressing of her abdomen each and every time.  I wanted to scream at them to leave her alone, that we are telling you the truth! But this is where that Reign I mentioned comes in.  I had to remain strong so she would not be afraid. I never lie to my girls.  If it will hurt I tell them.  Eventually, I didn't have to say a word, she knew without saying anything.  I saw it in her eyes.  

        Each visit for six to eight weeks was the same.  Indigestion, but no burping or your typical heartburn.  Nothing wrong with her. On the way to see a trusted and favored pediatrician I had to call the school.  Another ruler in the game of life.  I was ambushed with rude threats of a truancy officer by the office staff.  I couldn't hold back the fear or tears as they flooded my eyes,  distorting the road ahead of me.  She heard the entire conversation and saw my reaction.  I felt like a failure again.  I am supposed to stay strong and be the bigger person.  I am her mother.   The pediatrician pushed and prodded. I saw her holding her breath and knew it hurt.  I said to let her know it hurts, that it was okay.  The doctor went to the counter and eventually slammed the chart down on the counter and told my daughter to go with her.  She was put in the next room. After the threat of truancy I was panicked, thinking I’m going to be accused of child abuse.  I should have said something and not let this doctor do what she did.  I sat with my mouth open and feelt the red hot heat shoot up into my cheeks.  My hands started sweating. My heart began beating seemingly out of my chest so hard I could hear the blood rushing past my eardrums.  This doctor told me nothing was wrong, that Kat was seeking attention, that I couldn't sleep in the living room with her anymore and my girls were not to sleep together anymore.  I just shook my head.  No real thoughts other than get my daughter and leave!  

        I pulled into the Target parking lot and parked away from everyone under a tree.  I had to do it.  I had to question her.  Even though it went against every fiber in my body.  My gut told me I knew my child.  This girl loved school, loved learning, and loved to read books.  She had friends at school.  All of this had faded away as the pain grew.  I did it.  I asked the dreaded questions as the tears rained down over my eyes so heavily I couldn't see her face.  She replied that she was telling the truth as her tears started to rain down her pretty tiny face.  She told me how scared she was when the doctor pulled her out of the room.  I told her I was sorry for not being stronger and it scared me also.  I then took a deep breath and told her we never had to see that doctor again.  I told her I was going to search and search until I found a doctor who would listen.  I dropped her off at home and headed to the school.  The rulers.  I had to face them, and did not know how I was going to do it.  I was shaking, you could hear it in my voice.  I faced the dean of students and explained everything.  That I knew my daughter and she was sick! He simply sat behind his desk staring at me.  Those cold beady ice blue eyes.  Nothing.  I was told the office staff was told to treat parents like I had been treated.  I left mortified and more scared than ever! This was a Wednesday.  

        Friday night she was boiling hot against my hand.  I took a deep breath and told her lets go.  Back to the first ER and I demanded to speak to the house doctor.  My heart pounded in my chest again and again and again. This doctor confirmed a bladder infection and suggested we see a pediatric gastroenterologist.  Finally the breath left my lungs!  I finally felt like I was seen!  That my daughter was seen! We left with a plan,  but I had no idea how difficult the following Monday would be.  

        I started calling all over St Louis.  I googled and googled for doctor of GI.  The earliest appointment was three months away!  I begged. I rested my head in my hands rubbing my face so hard.  I was lost.  Again invisible.  Again a servant.  I took a deep breath and googled the distance to Springfield.  Two-hour drive.  I called anyway. I mean, all those movies you see where parents drive three states away, I should do the same thing right? Finally!  Wednesday!  I was so happy!  I told Kat who was in so much pain now, and she didn't react.  For months I had watched her body slowly fade away, that tight ball getting smaller and smaller, the color gone from her cheeks and she didn't seem to care.  How could I have let this go on for so long?  I am a nurse! Her mother! I should have done this two months ago!  I trusted the rulers that reign over us, and seemingly overlooked the ones who reign over the school.  I decided to call that doctor office.  I left a note telling her what we found out on Friday.  Nothing wrong with her though, right?

        Wednesday I found out she had lost 16 lbs.  How did I not see this much of a weight loss?

This nurse practitioner pressed a bit but nothing like in the ER or pediatrician’s office.  He sent us to X-ray.  He came down to read it himself.  He sent us to the urologist across from his office.  They cared!  They listened! For the first time in months we felt like they saw us!  Be damned with the ones who reign over the medical field!  We went home with the orders of a bowel cleanse.  Miralax, five scoops, in 64 oz. of fluid.  She had to drink 8 oz. every 15 minutes until gone.  The pain subsided for only 24 hours.  Again! She had to go through it again! My younger daughter needed picked up from school and as I walked towards the door I heard a weak voice say,  “Mom, I threw up! All of it I think!” I panicked, what was I going to do? I had to pick one child up and needed to be home! I can't leave! I have to leave! I made sure she was okay long enough for me to get my younger daughter.  I drove like a maniac, praying the whole way that no cops were around!  I didn't care about a ticket, but the time it would take up from getting home! I cut in front of another parent in the parking lot.  Feeling horrible not only for leaving Kat in the bathroom but for forgetting about her little sister and being late to pick her up.  

        She still had the headache, and was very weak.  Sunday she spiked 104.2 fever.  I called the urologist as told.  She said to get to the ER there in Springfield as soon as we could.  The ER! Again? No! We were past this!

        The ER doctor came in  and I ran through the story, the history.  I begged him with those tears building up in my eyes about to spill over and fade my vision.  My heart starting to pound and a knot in my throat so large I could barely swallow.  “Please, don't make us leave until you figure out what is wrong, please.”  He looked at us, so young looking, and replied, “No, I will not let you leave here unless it is to be admitted.  We will figure out what is going on. I promise!” He looked at my Kat squeezed her hand,  and said again,  “I promise!”  She was admitted to a room by 2 am.  

        They ordered a third bowel cleanse using an NG tube through her nose into her stomach,  IV fluids going in so fast I was afraid she wouldn't make it to the bathroom in time.  Two different antibiotics going.  As I was waiting for a CT scan of her belly I emailed from my phone the dean of students and the principal.  Then my phone rang.  It was her homeroom teacher telling me to be strong as I started to cry, again.  I couldn't see anything in the hallway.  Only blurred images like that windshield in a downpour.  She said to keep her personal number and text her daily.  I said thank you too many times to count.  She was the first and turned out to be the only school staff member who showed any concern.  

        Daily I emailed the dean and principal.  I texted the teacher, she replied, the other two men, not once.  Wednesday was my first experience with being on the other side of a surgery.  I paced.  I teared up.  I paced more.  I became angry at the two head of staff at the middle school for being so cold to a child. Teachers are supposed to care about their students.  It seems these days that the tables have turned so much against school staff members that the good students are hurt almost daily.  Kat asked every day if they responded.  I don't lie to my girls.  After surgery the doctor came out and told us they took a biopsy of her stomach and bowels and that the lining in her stomach was inflamed.  We could go home, but the look of panic she saw in both my eyes, and I’m assuming her dads, and told the doctor we were afraid to leave.  I explained how long this had gone on and that we lived two hours away.  She said stay another night.  

        Thursday.  Her headache had not changed.  The stomach pain was gone.  The floor doctor asked if an Orthostatic Blood Pressure  had ever been done.  I said no.  Keep in mind how long it taken us to get to this point in time.  Got it?  The nurse came in and this blood pressure procedure takes about 15 minutes.  Five minutes after that the doctor came in smiling and said Kat had a condition called POTS.  I wanted to keep her there another day to see the neurologist and cardiologist.  The latter came in, prescribed a pill, and that night the headache was gone.  Happy Birthday!  Her 13th birthday and she was pain free and in a hospital!  We went home the next day.  By this time we were all so so happy!  Smiling ! She was eating!  You would think this was the end of the whole Reign of Invisibility.  It was not.  

I planned a last minute sort of birthday party for her.  She was still very weak.  Only two of her friends came.  I got a sinking feeling in my gut that wouldn't go away.  It only twisted more and more over the next 24 hours.  Tomorrow was her first day back to school.

I dropped her off with the hope that my gut was wrong.  After school I found I was justified in my gut feeling.  Her friends at lunch refused to sit with her.  Another girl told her they said, “She doesn't look sick, she is just trying to get attention!” Flashback to that pediatrician.  I was hurt for my daughter, how could I take this pain away?  I couldn’t.  I got angry and wanted to call these mothers, but figured it would do no good.  I emailed her teacher.  Response as to be expected: the girls said nothing was wrong.  She spent the last two months at school alone.  Now she wanted to be invisible.  She couldn't even read a book at lunch.  

I started googling about POTS.  Postural Orthostatic Tachycardia Syndrome.  Whew!  Never heard of before now.  I read about the disability, 504 plans, kids in wheelchairs.  I felt overwhelmed.  I think I called the state of Illinois Department of Education.  Nothing helpful.  I started to look into this 504 plan.  I finally felt hopeful in defeating those who reigned supreme at the school!  I tried three times in a week to get a response form the person in charge of these plans.  No response from either the dean or principal!  I was getting angry!  I asked her dad to send an email with his employer's letterhead:  Federal Bureau of Prisons.  I felt invisible again. I got a call that same day.  Why?  Why does it take humans to refuse to respond until possibly threatened? Or worried about their job?  

A meeting was set up and I was able to get almost all that I needed in place.  The increase in water and salty snacks, and she could keep her phone on her.  I felt relieved finally.  They were still going to make us get doctor notes because of the ten-day rule of absenteeism.  I fought! I got it! No notes necessary.  This remains in effect today.  Every year we have a meeting.  The high school here is completely wonderful! They show concern and respond almost immediately!  I couldn't wait for my younger daughter to be in eighth grade as it was at the high school.

We thought she was getting better.  We were able to get rid of some Rx’s. Last year in January we ended up in the ER.  I was not as worried as in the past.  Then my world sank.  She stood up, wobbled, and would not respond to my calling her name.  Her dad was facing her and yelled “She’s out! She’s out!”  I stepped up and tried to catch her. She slid right through my arms, limp. I yelled for her dad, a big guy, to help, I couldn't hold onto her.  Once we all got her onto the bed I reached for her glasses and stopped cold for a moment.  Her eyes, always so big brown and beautiful were so deathly blank.  No rigidity to her muscles.  No response.  I stepped back recalling a nightmare I had while pregnant with her sister.  She was about two years old and lying on a bathroom floor, I stepped over her and watched as the life left those gorgeous eyes.  I awoke bawling.  

Fast forward to a month ago. I tried twice at home to do what I knew the doctor would order.  She was still in pain.  The first hospital could not get an IV in.  Six sticks later and she almost passed out before they were able to get one started.  They drew blood from that same arm.  The doctor came in and told us her labs were critically low.  Much lower and death would possibly result.  Her body was not producing blood.  We needed to go to Cardinal Glennon in St Louis by ambulance.  Leukemia.  Blood transfusion.  My mind going blank and thinking why is he saying this in front of her! I needed to call her dad! I can't leave the room.  I needed to cry, to freak out! I leave and call her dad.  I start to cry but hold it in.  Deep breaths. I couldn't let her see how upset I was.  How I was panicking inside.

Then the doctor came back and said the labs were possibly diluted, contaminated, messed up.  Another order for labs.  This time the other arm.   We were to leave by ambulance.  We arrived at Cardinal Glennon.  The doctors swarmed in, so, so many of them.  I heard mumbling, feeling like I was invisible again and being pushed out of the room by all of the doctors.  I stayed calm.  They said she doesn't look like a kid with that type of blood results.  Did you see them draw a second set of labs?  Yes.  Again and again they ask.  I started praying the second set would come back normal. The doctors asked if she had bone pain.  A new larger IV started for a blood transfusion.  How am I so calm?  Has it sunk, in you idiot?  She is dying! You know this!  I watched her sitting there.  Pink cheeks, older, stronger and used to the sticks.  She told me several times over the last 24 hours she wanted to be admitted and have the NG tube in to take the stomach pain away.  What person, let alone a 15 year old kid, wants a tube shoved in their nose so they can run to the bathroom every ten minutes? It made me proud to know she wasn't going to fight it.  She knew the routine to getting better.         

The doctor came in and ordered a third set of labs because nothing was making sense.  These labs came back normal!  I felt myself relax.  The breath exploding from my lungs!  Smiling at her!  She merely smiled back weakly, still being in pain.  The doctor asked what had worked in the past.  I explained about her very first hospital stay.  Everything I had done up to that point.  I didn't mind this time.  The doctors question about what had worked before finally, truly registered in my brain.  We had never been asked that before.  They admitted her.  The NG tube was started along with IV fluids but no blood transfusion.  Once again I was feeling happy along with my daughter about her being admitted into the hospital.  Who is happy about that?  We were.  First time was her birthday, this time Valentine’s day.

The first day to go back to school, as I was driving her I noticed she was too quiet. I looked over and asked if she was okay.  I saw the rain, pouring across her eyes and down her cheeks.  I asked her if she wanted to stay home and all she could do was shake her head.  At home she said “I'm having flashbacks to seventh grade. I  just can't deal with all the questions and looks from teachers and kids, the look that they are thinking I’m not really sick! That I’m seeking attention!” I wanted to cry with her.  I was angry at those middle school girls again.  Mad at their parents.  Then I reminded myself that the staff at her high school are understanding.  I told her she can take her time and that I didn't think it would be as bad as she thinks.  She just shook her head.  I wracked my brain trying to think of anything to help her.  

Finally, I email all her teachers about what is going on and that we will take baby steps. First day, two classes.  Next a half day.  Then a full day.  I had a slight fear that I would get resistance from the school.  I feared checking my emails.  I saw a response but waited to open it.  Nervous. Then more came in.  I finally opened the emails and everyone was so thoughtful and helpful.  The rain started again only this time, that blurred computer screen I am looking at right now, is of pure joy.