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A Letter To This Little Girl

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Dear Jessica, (I know you probably thought I was writing to Kayci)

You are three years old and are a very lucky little girl.  You have an amazing family and La La treats you like The Little Princess (Shirley Temple…you’re favorite movie.)  Life is simple.  You are living the way I wish you will always live: positive, happy, grateful, and live for the present moment as at your age the future is not yet possible to understand.  Well, a lot is going to happen throughout the next thirty years: things your mom and dad never thought would happen or were possible.  The biggest life change to happen to you happens about ten years from when this picture was taken.  A few days following your birthday, June 7th you took your bicycle (the cutest pink cruiser ever!) for a bike ride to a video store.  It is very difficult to find video stores nowadays as the internet has literally taken the world by storm.   Anyways, you got to the video store which was in the town you lived in, rented a movie and bought some candy.  You were very excited to get home and start your summer off with a movie and some candy.  Middle School was right around the corner and you were both excited but scared as you were going into a brand new school and knew no one.  However, once again you were still at a point where you were able to live mostly in the present moment.  On the bike ride home, about half a mile from your home the bag carrying both the movie and candy hit the front wheel of your bicycle causing you to fall into a stone wall.   The right side of you fell into the wall and when you opened your eyes a car was pulled over and a random person was yelling: “Are you okay???”  Unfortunately, you had zero clue what had just happened so between ignorance and just you being stubborn you said: “No thank you, I’m ok.”  I will give you a little hint: you were not okay.  You thought you had just broken a few bones because you were unable to move your right arm and had a mild headache so you walked home, yes you walked home.  All you wanted was dad but he was not home once you arrived so you decided to watch the movie you rented.  Oh Jessica.  Some time went by and I believe you fell asleep.  Dad woke you up and said something, many things of which I do not really remember and took you to the nearest Emergency Room.  The two of you waited and waited and waited until you were checked over and given a sling for a broken collar bone and some bandages for various injuries on the outside of your body.  Coast was clear and they said we were good to go home.  Halfway out the door, you began puking so they wanted to give you a Cat Scan to make sure nothing else was wrong.  Jessica, ten minutes later you were in an ambulance being rushed to the best trauma center closest to where you were.  You needed immediate brain surgery as your brain had been bleeding since you had fallen off that pink cruiser.  The last thing I remember is saying bye to dad as they wheeled you into surgery.  A day later you awoke in what is called ICU hooked up to a feeding tube, catheter, and had lost half of your long brown hair.  Dad was sitting next to you and stayed in the ICU until you were discharged into a real hospital room.  They let dad sleep in the kids playroom each night on a cot.   You stayed in the hospital for quite a long time and everyone was there.  Your room was filled with balloons, flowers, stuffed animals, cards, you name it.  Once home, you had to stay on the living room couch for about a month and then you slowly got better on the outside and actually were able to enter seventh grade.

I wish I could tell your first year in middle school was fun or even happy but it was a very scary, sad year.  You were the new girl and you did not look “normal” (Jessica, please know there is no such thing.) Half of your head was shaved, you had marks different places and because you were on the poorer spectrum of the town you lived in definitely did not dress or wear the items that were “cool.” People made fun of you every day to the point that you ate lunch in a bathroom stall just so no one could see you.  I wish I could hug you little Jessica but I promise this hell is going to teach you how to be an empathetic, amazing person who never allows people to make fun of others.  Lindsay was the one friend who was there for you then is remains a sister to you.  I wish I could tell you now that it is never the quantity of friends but the quality.  Plus, the only reason children make fun of others is because they are hurting inside themselves.  But, here I am in 2015 at the age of thirty three so I cannot tell you any of this.  All the hardships of this year will give you a lot of attributes many people do not have and although you cannot see it now this pain both physical and emotional will serve a purpose one day.

So, now is when I tell you things get better right??  I so wish I could and more importantly I wish I could go back to you then with the knowledge and wisdom I have now.  What could be worse than brain surgery right?  Hmmmm…..living in constant physical pain that is not visible to anyone because your hair grew back and the scars are hidden.   The next few years are some of the hardest years of your life.  Now, they have a term for what you were experiencing and it is finally getting noticed but back then the diagnosis: “chronic pain” was not common.  In fact, for many years you go on a quest to find a cure to the physical pain you are feeling.  We are not talking about seeing one neurologist or having one MRI, we are talking about seeing hundreds of doctors over the course of several years.  I’m sorry Jessica.  I wish I could have held your hand each time one of the surgeries did not work or when a doctor swore this or that medication would ease the pain.  I wish I could hug you for each time you drove fifty minutes from your house for procedures, all the while balling your eyes out in your car.  I can tell you this: you do not give up easily.  I can also tell you that we have a dad who stood by us through each surgery, procedure, car ride, hotel room, the side effects from medication, and although difficult for men through all the tears you shed as the years went by and the pain got worse and no doctor could find a cure to what we now know is “chronic pain.”

So, now is when I tell you things get better?  I’m sorry Little Jessica, trust me I wish they did.  I do not know how but you graduated high school with great grades and went to college against your inner wisdom.  You were in no way able medically to move away from home and go to college full time.  Both your best friend Lindsay and dad drove you to Monmouth University and you cried the whole car ride.  You were rubbing your head, taking Excedrin to the point your stomach was on fire, and in so much pain physically that you could not handle a full course load and moving away from the one person who knew what you were going through and the one person who believed you: dad.  You were so not ready but you wanted as all teenagers do to fit in and follow the “normal pattern of growing up.”  Jessica, let me tell ya this: you have always beat to your own drum and no cannot go back in time to tell you this but you will soon learn to trust your inner wisdom.  So, welcome college: drinking, full class load, all new people, and many girls who were sorority obsessed (polar opposite of you with or without pain.)  I’m not sure how but you did well academically but were suffering physically to a point that gradually got worse and worse.  The only pain relief that worked was drinking with your friends which obviously is what a lot of kids do in college so it worked, until it didn’t.  Your friends and classmates drank for fun which to an extent you did as well but you drank more so because it was the only time you did not feel the physical pain as alcohol numbed it.  And better yet, hangovers people understand and although no one gets flowers for a hangover, one does get understanding and pizza.  You are going to reach a point soon after your final surgery that you hit rock bottom.  This is the surgery in which I could have been with you little girl.   A surgeon specializing in some kind of pain management cut various nerve endings inside your face.  We had to be awake in order to tell the doctor where we felt this or that.  It was a living hell Jess and I want to telll you it helped but it only iincreased pain levels.  Worse, out of desperation and ignorance we went back and tried it again: yes made pain worse and this was the moment you gave up.

You probably will not believe me but you are so broken, in so much pain, and hopeless, you do something no one would expect from us. A coulple mornings later you used every last penny in your bank account and bought a plane ticket for Denver, CO. You told just one friend, dropped out of school and moved to Boulder. All you did was party, best college town to do so and not look like you had an invisible illness. You begin to hate yourself more and more as you unravel realizing your goals and dreams would never come true due to chronic pain. You had same dream forever: to be a mother and have a family. You wanted to be a writer but the biggest dream you have always had, motherhood seemed totally impossible. Pain got worse, you party more, cry more, and sadly hit a point of truly wanting to end your life. Chronic pain had changed you into a person I now do not recognize. Your closest friend saw and heard you. He knew you would die if you did not find some help for chronic pain. He drove you, on a whim to the Mayo Clinic in Minnesota where you ended up staying for about three months.

So, is this the part of my letter to you little one where life gets better….yes. Not right away but your life changes from the month you left for MN to now. Did you find that cure to chronic pain you wanted, needed thought would die without? No. Jess, I promise I did everything I could. So how did it get better? Well, you had to accept you have chronic pain and had to learn how to live a good, happy life despite pain.

Well little one, we are now thirty three! Sounds old right? Its not. You have a daughter, Kayci who turns three in a couple days. You got your degree in Social Work but have now finally pursued your dream: to be a writer and help those with chronic pain. You love exercising, yoga, juicing, health, motherhood, and turns out you can live an amazing life with chronic pain, naturally even. Ok, so it is not always easy but Jess you are alive, strong, and making your dreams come true. Yes, you have some limitations and live differently than most and many people do not understand you or pain or why you live the healthy, regimented life you do. However, you do not really care because you know you are doing best you can and you are following your highest truth. Life is not what you planned and yes life would be different had you worn a bike helmet that day or had not gone for that bike ride. However, you will be proud of yourself and become very wise. You appreciate things many take for granted. You are making dreams come true.

I look at you in this picture, my inner child and see Kayci. I wish I could be there as the adult you through these tragedies but clearly you made it. I love you.

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2 thoughts on “A Letter To This Little Girl

  1. Thanks for the good cry!

    I hope you’re feeling really brave and strong and superhero-like having accomplished all of this. I struggle with the decision of whether or not to become a parent, mostly because of the chronic pain, but am comforted by stories like this that make me feel like it’s doable.

    Please consider participating in my project aimed at putting faces on so-called “invisible illness”: http://migrainebrainstorm.com/2015/01/17/the-spoonieselfie-challenge-2/

    Lovely to have found your writing,

    Anna

    • Awww….being a mother is actually greatest distraction from pain
      I wld write something up for u but I cant do a pain face….goes against my method tobtrain my brain to n ot think abt pain
      Ill give ya before n afyer pic tho!

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