All You

Her mind was like a game of poker.  A stack of chips in front of you, you’re on top, you’re winning, beating the odds, what a feeling.  And then on the other hand, which there is always another hand, you don’t have so many chips on your plate, you’re down, possibly angry, you are suffering from your loses.  What you have in front of you, what is yours, determines the fate of your happiness within.  How do you get more chips — more happiness, credibility?  Could it possibly be determined on looks?  Luck?  Knowledge of the game?  And if you have none of the above? 

What shall you turn to to rely on? 

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Why do you get the hot date, the brand new Lexus, the raise, the expensive bottle of imported wine from Spain for your anniversary with your now ten year husband, or even the bad —  the anxiety he might not call after the second date, the tiny, but significant mustard splatter on your new button-down while out to lunch with the new boss discussing potential business growth,  or the news that your child is in the principal’s office for sticking up for themself out on the swings at recess.  She was not able to endure any of these things for the mere fact she was unable. 

From birth?  Funny you might ask, I became ‘this way’ when I was two. 

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You see, most people rely on the outside looks, their clothing, hair style, car they drive, the great relationship going for them with their boyfriend or girlfriend, etcetera, to obtain their happiness and satisfaction on their life.  I however, rely on my inner-self, the self most people lack, or forget they have.

It is clear people like me go unnoticed, despite all the stares and rude remarks, the intellect going on inside my body and brain are what goes unnoticed.  People assume I don’t have it in me.  People assume I am a nothing to the world.  Only here to take up space.  A mistake only here for the pity of others.  I will admit, under certain circumstances there is the  rare occasion I get acknowledged with deeper understanding.  On these rare occasions, people see me for me, a young adult growing up in the same world as them with different liabilities, a different day to day schedule.  

I am here, I am belonged to, I do have a family, friends, and workers who care for me, a school I graduated from where my work is documented, a rehab center where my work is documented.  I believe in myself, that is the only reason I have made it this far.  I believe in myself because of the support I receive from the non-judgers.  I believe in myself because I am alive.  I am well, yes I am in a wheelchair, on a feeding-tube, on a respirator during the night, I have the occasional seizure, I have a weaker immune system than most, but I am kicking.  I can stretch, scream, breath, and most of all, smile.  

Yes, my smile.  What the people loved the most.  They loved running their hands through my hair, my black, curly, short locks, they loved squeezing my over-fat hands, rubbing them, making sure they were in circulation and not up to my mouth which I loved to put them.  And similar with my feet, they massaged and rubbed those babies ’til kingdom come.  It was phenomenal, besides the fact of course that they were swollen from my disease.  I was unable to walk. When your feet aren’t used for the reason to walk, or be used really at all, they swell.  Another reason for people to stare and for my family to worry about me.


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I suppose another reason for some weariness would be the fact I was expected to die at thirteen.  This was what they, the doctors who first discovered the disease taking over me as a two-year-old, predicted.  My parents first born, their first child and I was a screw up.  I did not have all the correct chromosomes lined up.  I came out as a normal birth, a normal baby, only to realize just a short two years later and a new baby sister, I was handicapped.  I was going to need more attention and special care from not only my two parents, but from doctors, special doctors, specialists in the field, my siblings, my grandparents, aunts, uncles, any many, countless aids who would be there to help me and my special needs. 

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So then came the medicines, the tests, the scheduled doctors appointments so far in advance.  Life became very specific.  Specific hours I would need my medicine pumped into me, specific locations to place specific pillows when I slept on my side, or when I was placed on my back, specific food, a can of formula three times a day, specific doctors, nurses and aids who would work with me, specific places I could and could not go because of accessibility.  It was time wrenching, mind twisting, and I couldn’t do anything to help.  This was me, this was my parents new life.

It worked out well though.  I lived fifteen more years than the doctors once estimated, so that was a plus.  I was involved in a new and rare type of research just for being me.  I graduated high school, met many friends and their families along the way, attended some Hawkeye basketball games, something I never thought possible, I moved out!  My parents finally said to hell with me!  Not really, the family was very wishy washy with this decision, I remember.  Word of a brand new “special” home was being built and my name was first on the list.  I made sure my parents knew I was okay with this decision.  They had their time with all the medicines, arranging babysitters, hassling with getting me around, not having time to themselves really, because they had a grown baby to always tend to and worry about.  This new house would take care of that for them, and was in the same small hometown as the rest of the family.  I had plenty of visitors.  I especially liked when my puppy would run up to me, jump on my lap, and lick my face until he was scolded not to do so.  Little rascal. 

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I lived in that house for quite a few years.  Until one January evening, I was rushed into an ambulance all the way up to Iowa City.  I had one too many seizures in too small of a time frame.  Something was up.  Carbon dioxide was fillin my lungs up.  Not enough oxygen.  It was my time.

I remember hearing many visitors come into the room. I felt my mom and sister at my bedside the entire time.  I knew Dad was in the room, I knew it was extremely difficult to see his first, and favorite, daughter like this.  But that is dying. I had lots of visitors come speak their peace to me.  Comforting.  I remember my sister had stepped out, her first time leaving the hospital in the little over twenty-four hour time frame.  My parents told her to get a shower and a change of clothes back at her dorm.  She called Dad not even fifteen minutes later to see if I was still hanging on.  Dad said she had better get over here.  She must have sped and ran some red lights that crazy woman, she was back in my presence within five minutes. 

And not even a minute later I peacefully left this world and onto a new one.  Oh was it peaceful.  My beautiful mother and father, sister and aunt grasping each others hands, tears running down their faces, watching me as I floated up, up and over them now.

I am their guardian angel.  I protect my family as they did for me.  I make sure they are letting loose, having their fun, getting along fine in their days until we are all reunited again.

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