On All Things Rare And Unique

I've always been a rarity.

When I was born my body didn't react the way that medical personnel expected. The doctors told my parents that statistically speaking my parents were more likely to win the lottery than have a child born with my blood disorder.  I've been told that my whole life and it is one of the ways that I have always felt unique, for better or for worse.  When I would be admitted to the hospital every doctor would say "I've never seen anyone like you."  And they didn't ever know what to do with me.  Medical students would ask to see me, because it was a once-in-a-career opportunity.  And it was fun to dazzle them with my "rareness".

I have also been blessed with the unique opportunity of looking different than anyone else.  That difference has been the start of many awkward and not-quite-as-awkward-but-still-a conversations and relationships.  I am one of the only people that I know who is stopped on a regular basis and asked "Why do you look the way you do?  Are you ok?" Usually these questions are asked out of concern or out of curiosity.  Rarely they are asked with malicious intent.  Regardless, they put me in the unique position to divulge more personal information to complete strangers than most people usually do.  I also get the unique opportunity to be told by friends and family exactly "how I am looking" today.  As in "You look good today, not as yellow as normal, are you feeling better than normal?" or "You don't look so good, you are looking extra yellow today, are you feeling sick?"  Again, these comments are said by well meaning people, but they have been a constant reminder to me about how "unique" I look and what little control I have over the way I look.  I think it is a fairly unique problem, you don't hear many people telling people in wheelchairs "You look like maybe you don't need your wheelchair today, are you feeling better?" or "You look like you need your wheelchair more today than normal, are you feeling sick?"

I have never wondered what to say when as part of an activity to introduce yourself is to say something unique about yourself.

I am also unique in my religious beliefs.  I am one of 14 million Mormons in the world today.  That may not sound very unique but it is only .002% of the population of the world today.  Pretty rare.  And we as religion embrace our uniqueness we are taught about individual worth, to be "in the world but not of the world" and many quotes like:

"Dare to be a Mormon.  Dare to stand alone.  Dare to have a purpose firm.  Dare to make it known." - Thomas S. Monson

"Two roads diverged in a yellow wood and I- I took the one less traveled by, And that has made all the difference." - Robert Frost 'The Road Not Taken" as often quoted by President Hinckley

I have lived most of my life in Utah where being Mormon wasn't very unique, but I will soon be moving to Pennsylvania where it will be quite unique to be Mormon.   Part of the Utah/Mormon culture is getting married at a young age and then to start popping out kids as soon as possible. I'm a twenty-something year old woman and I am not married.

I'm still a rarity.

It's not that I don't want to be married.  I'm a romantic, I've always loved the cheesy love stories, the Jane Austen novels, the fairy tales, the love songs and have imagined my "happily ever after".  I would be lying if I said that the older I get, the more bittersweet those stories I used to love have become.  I see friends and family, who I love dearly, and I see them getting their "happily ever afters" and I am really happy for them.  But I would also be lying if I said there wasn't a small part of me that was a little jealous as I wait for my own "love story".  And I hate that jealous little part of me, because I know that jealousy is not becoming or helpful to them or me and I should just be happy for these people I love and rejoice in their happiness.  I am happy for them.  I just long for that love, acceptance, and companionship that they have achieved and that I can see and admire in real life and as I keep in touch with them with Facebook and blogs.  Sometimes others "happily ever afters" seem to come so easily and beautifully and perfectly in a way that mine hasn't.  And it is a little hard to be optimistic and have faith in my future happiness when I feel like the culture I live in believes that:

"If you don't have two kids by twenty-one, then you're probably gonna die alone. At least that's what tradition told you." - Katy Musgraves Merry-Go-Round

But tradition and culture is not always right and sometimes being the rarity, being unique has it's advantages. I have been able to get my education with relatively few other concerns.  I have had the opportunity to serve others in unique ways, mentoring teenagers and playing with children, developing skills that will be useful in the future.  I have been able to travel a lot since I graduated college and I am about to embark on an adventure that probably would not be possible if I weren't still single.  I am being given the opportunity to establish myself in a career before taking on a marriage and family.  It may not have been what I always imagined, but I know I'm going where I need to be and doing what I need to be doing.

This summer I have observed people who received their "happily-ever-after" exactly as they wanted it, and yet they are not happy after all.  I have come to understand more fully the sacrifices and the responsibilities that come along with "happily-ever-after" and while I still want those blessings, I'm content to wait a little longer and continue to explore the world on my own.  Once you become a wife and mother you can't go back, and I don't want to take on those responsibilities until I'm absolutely ready.  I still have so much to learn and so many ways that I need to grow and prepare myself before taking on such serious and wonderful roles.

Maybe while I am on my adventures enjoying the freedom and independence and privacy that comes from being single I will find that oh so rare "happily ever after".  Maybe not.  Maybe I'll find that "happily ever after" in a unique way and time than what other people think is right for me or anyone else. Maybe not.  But no matter what happens:

I'll always be a rarity.

Lexington, VA

We went on a day trip yesterday to Lexington.  There we saw VMI (the Virginia Military Institute), Stonewall Jackson's Cemetery, and ate at Macado's Restaurant.  The VMI is a beautiful school that looks like it's a cross between a prison and a castle.  We visited a chapel on the campus that was located above the schools museum.  I didn't take any pictures because I didn't want to be disrespectful but it was beautiful. There was a huge painting of soldiers in battle above the stage.  I thumbed through the hymnals and the prayer books left in the pews.  It was very cool to see.  The museum was cool to see as well, with more paintings and a display of huge class rings.
Then we went Stonewall Jackson's cemetery.  The cemetery was very beautiful with huge trees and old tombstones.  For a little background on Stonewall Jackson, he was one of the generals for the Civil War and is arguably one of the best US was generals ever.  (You know, except for the fact he was on the wrong side...)  Another fun fact, his arm is buried at a farm house near the battlefield where he died.  It was amputated eight days before he died.  He was killed by friendly fire.  He ate lots of fruit and one historian argues his favorite fruit was lemons.  People still leave lemons at his grave, although evidence now shows they weren't his favorite fruit.

I thought it was really interesting that there would still be Confederate flags hanging through out the cemetery.

Stonewall Jackson and the Confederate flags and lemons left at his grave.

Close up of lemon and Confederate flag.

"He did what he had to do for where he was"

We ate at Macado's which was super yummy.  It's a local sandwich shop that has a huge menu full of yummy foods like the Mona Lisa, the Titantic, and the Julius Cesar.  It was super fun to see.

Things I Haven't Posted Yet

It's been a while since I've blogged.  I guess I've been too busy living to blog.  Which is definitely a good thing.  Anyway, here are the updates:

• I went to Arizona and was a mother for a week and a half to three children.  What a crazy week and a half!  But I'm so glad that I got to hang out with Sabrina and her adorable children!
• I have been working EFY this summer.  I worked three weeks in Utah and I'm now in Virginia for four weeks!
• I will be moving to Pennsylvania to do a Child Life internship (in the middle of nowhere) sometime in August or September (date still up in the air).  Getting that internship was an EFY miracle.  And it is obviously where I need to be now.
• I love Virginia.  It's so green and beautiful.  And the fireflies!  Oh the fireflies! I am officially obsessed with fireflies!  I had no idea what I was missing but I'm like a little kid when I see fireflies!  And the food!  Oh the yummy, huge portioned, unhealthy food that tastes like a sinful heaven!  I love it!  I'm going to be so fat at the end of this month.  Except for the huge hill (mountain?) that I have to climb several times a day to get back to my dorms.
• And yes I've been wearing yellow all summer.  And I wore a bright pink sparkly headband today.  It's a strange world we live in.

Now for picture overload:

Happy Fathers Day!

For the second year in a row I'm spending Fathers Day away from my Dad which makes me sad. In honor of him here is a list of the wonderful things I have inherited from him:

• My awesome rhyming skills (see the subtle rhyme above of dad and sad).
• My awesome dancing skills (just ask my EFY kids. I can assure you there was no sarcasm at all  when they told me last week what a great dancer I am.)
• My obsession with les miserable. He and my mom took me to the play and I'm pretty sure he was the one who wanted to buy the cd. And he played it all the time. Especially the master of the house. Which swears. And I didn't know (I wa an innocent/oblivious young child) and I would sing the swear words at the top of my lungs. Maybe that's why he would play it? That's where I got my nasty swearing habit. ;)
• My love for the beach boys, Elton John, and Billy Joel. 
• My need to be fifteen minutes early to everything. 
• My inappropriate sense of humor.
• My awesome jokes.
• Any talent I have working with kids (although I got that from mom too).
• My love for reading (by providing the books I was surrounded with in childhood.)

I have been so blessed to have this awesome man in my life. And while I can't spend this Father's Day with him I can spend part of it with my awesome Grandpa H. Grandpa H. has always been an awesome example of quite service to me. I hope someday to be as observant and quick to quietely help as he is.

The Hospital: Part Five

If I had to choose to describe my hospital experiences, it wouldn’t be a Taylor Swift song.  I would choose “Some Nights” by fun.

“Well, that is it guys, that is all - five minutes in and I'm bored again

Ten years of this, I'm not sure if anybody understands”

The Hospital: Part Four

One thing I didn’t like about Dr. Clawson is she was always admitting me to the hospital. If there was any question about my health and my blood levels she would admit me to the hospital more often than not. Normally when I am admitted to the hospital we walk across the sky walk connecting my doctor’s office to the hospital. I liked walking the skywalk and looking out over the city. I would look out and see Weber State University and watch cars pull in and out of the parking lot. Watching the cars fascinated me, I wondered about the people in those cars. Is that a doctor pulling up, coming in to save a life or perform a surgery? Is it a nurse who is pulling up after dropping her kids off to school, who will now be comforting her patients? Or is it patient who is feeling as sick as me who is parking? Is that a family member leaving after a long night holding a vigil over their loved one? There are so many people in the hospital, with so many different roles to play, so many different stories, and so many different struggles. Looking out the window was a good way for me to delay the inevitable. I would mosey across the walkway, getting in the way of busy doctors, nurses, and other health care professionals, rushing about to whatever patient or meeting they needed to get to next. My parents would urge me along down the highway towards my impending doom.

The inside of the hospital looked just like the outside, white. White walls, white tiles, with various silver medical instruments ready for the medical professionals to use on patients. Today I don’t walk down that walkway, instead my dad carries me out to the car again and drives me to the new hospital. Although this hospital is bigger than my old hospital, somehow it doesn’t seem to tower over me quite as threatening as the old hospital did. This hospital has a softer brown color to the outside of it and looks more friendly and inviting. The inside looked warm and inviting with an open ceiling that showed all the floors. The fourth floor was the pediatrics floor and was where we headed. If we had time I would sit down with my dad on a bench or a chair and my dad would feel my arms for good veins and then put EMLA crème on them and covered the crème with a Tagaderm band aid. Butterflies would fill my stomach as my arms were prepared for the eventual needle. The EMLA crème sickly sweet smell mingled with the faint dried glue smell emanating from the Tagederm. The anticipation built up with every passing moment. I hoped and prayed every time for some miracle to prevent me from having to get an IV or blood draw. I always hoped and prayed that someday they would figure out a way to deliver my medication and run tests without having to poke me. The miracle never happened.

I would be assigned to a hospital room and then lay on a hospital bed. Hospital beds are lumpy, the sheets are itchy, the blanket is itchy, and the pillow is lumpy. I like how the beds can sit me up so that I can see what is going on while using less energy. Less energy is good. A nurse comes in my room and takes off the Tagaderm and cleans off the EMLA crème. She feels my arm for a vein and after finding a good one asks me if I want her to start the IV now or after she counts to five. It was a mistake to ask me that. Now I can begin my master stalling plan. I automatically start saying “Count until five.” And then as the nurse gets ready to start the IV I continue to say “No, not yet. Count until five again. Five more minutes. I’m not ready yet. Wait a little longer. I don’t want to do it.” I would stall, whine, cry, bawl, kick, scream, bargain, hit, hyperventilate and do anything that I could to prevent the IV from being started. It didn’t matter how low my blood levels were and how tired I was the moment a needle entered my hospital room I would enter “fight or flight mode”. And as I put off the IV start, the anticipation would build more and more with every passing moment. My stomach would drop, my arms would tense and tingle as I anticipated the pain. My breath would become more shallow and would quicken. Panic always set in. To me getting an IV started was pure torture and what made it worse is that it was torture that I wasn’t allowed to fight. I would beg for the smallest needle possible and never believed the nurses when they told me they were giving me the smallest needle possible. My parents would try to hold me down and calm me down, but they always ended up telling the nurse to go ahead with the IV start regardless of my protests. Partly because I would fight so hard and partly because my veins were so tiny I almost always got poked more than one time to try and start an IV or get a good blood draw. I never trusted anyone to get my IV started or to draw my blood. Today I got my IV started with all the fight, anticipation, and panic that normally accompanied my IV starts. After my IV was put in I always kept my arm as straight as possible so that my IV wouldn’t come out.

And then I slept.

Finally.

The Hospital: Part Three

My dad walks down the long hallway, past the drinking fountain. Breathe in. Breathe out.

My dad carries me through the familiar door of the office and set’s me down on one of the chairs while he goes and checks in at the front desk. I don’t even try to stay upright or keep my eyes open. The waiting room was filled with other children playing with the toys making the beads go up and around the different mazes that intertwined. The red line spins around the blue line. The green beads travel along the red line and the yellow beads travel around the blue line. Some of the beads travel quickly, smoothly down the line. Some of the beads travel slowly and choppy, the line no longer smooth or something inside the bead catching along the line slowing it down. I have played that game many different times. The waiting room is circular with brown carpet and tan walls. The front desk wraps around half of the waiting room and beyond the front desk are rows and rows of shelves with patient files.

My file is about an inch and a half to two inches thick, filled with records of all my time in the hospital. My file is too big for an eleven year old girl. I go in and out of consciousness, my dad strokes my hair and a nurse grabs my file. My name is called. My dad picks me up again. Am I even breathing? I don’t know and I don’t care. I just want to sleep. My dad carries me into one of the waiting rooms. The room is white and at the very top near the ceiling is wallpaper, in some rooms its teddy bears and other rooms its puppies pictured. There are two chairs in each room, a table with paper on it, a chair for my doctor, and a magazine rack. Usually I’ll look at the magazines with my dad while we wait for the doctor to come in. But my doctor, Doctor Clawson, walked right in today.

Doctor Clawson has been my doctor since I was three or four years old. Dr. Clawson worked with my aunt Kate and lived right next door to my aunt Jane. She was a little bit older than my parents, probably in her late thirties, with pale skin, dark hair and eyes, and she was skinny. Dr. Clawson was recommended by my aunt Kate because she had worked with someone else who had my blood disorder before I moved to Utah. I like Dr. Clawson much more than I liked any of the nurses who worked for her. In my mind she would order the painful tests and treatments but she never actually performed them so she was a lot less scary then the nurses. Dr. Clawson was more consistent in my care then my nurses and took more time getting to know me then the nurses did. Dr. Clawson even gave my parents her cell phone number (back in the day when few people had cell phones) and her home phone number so if my parents ever had questions, or if I got sick, day or night, they could contact her and get her the help I needed. I didn’t realize what extraordinary care she gave me until I was much older. The first time I had to get a different primary care doctor I was shocked when he did not spend as much time getting to know me and when he didn’t give my family his cell phone and home phone number. I didn’t realize that most other people spend more time with and bond more with their nurses than their doctors because Dr. Clawson spent more time with me. Dr. Clawson was amazing. When she would examine me she would check my liver, my heart murmur, my skin color, and my blood level to see how sick I really was.

Dr. Clawson ordered my “finger prick”. I had finger pricks all my life. It allowed the doctors to check my blood level but was not nearly as traumatizing or painful as a regular blood draw. When I was younger I used to have EMLA crème put on my fingers to numb them but now I always tease my nurses and tell them that my fingers will be numb forever and they could pick any finger they wanted to for my pricks. Then they would squeeze my fingers like they were oranges being squeezed for all of their juice. After they had drained my finger of all its blood they would test it. Dr. Clawson came back to tell my dad the results. “Her blood level is at 4.8. As you know her normal level is 8. She has never been this low before. We need to get her to the hospital right now. Today they are opening the new hospital so I’ll call over there and get you admitted.” My heart sunk. That means more needles. Needles are the bane of my existence.

I don’t want to go to the hospital and be poked and prodded.

I just want to sleep.

Why can’t they just let me sleep? I don’t even care about going to the new hospital. I just want to sleep.