What breaks your bones,
is not the load you’re carrying
What breaks you down,
is all in how you carry…
– The Fighter by The Fray

March 1990 — Part 1/ Infant was born. She was premature by eight weeks and only one pound, but complications forced doctors to deliver her early. She wasn’t getting the nourishment she needed in the womb. Doctors were hopeful though. Premature labor gave her better chances at growing, even if her lungs were barely developed and she couldn’t breathe on her own. Her parents had decided to call her Shannon.

March 1990 – Part 2 / Shannon had abnormal swelling in her head, making it larger when compared to her small frame. Doctors presumed she had a condition called Hydrocephalus, which is an abnormal buildup of fluid in the brain. They were checking for other conditions such as Spinal Bifida because she had an abnormality of the spine, as well, which is often found patients with Hydrocephalus, but not always. Surgery was inevitable. Shannon’s father persisted, rather rudely, that she didn’t have the condition. He refused to let doctors place a shunt in her head to control it. They proceeded with a Ventriculostomy to release the access fluid from her brain.

June 1990 / Shannon was released from the hospital. She had good vitals and was four pounds in size. Her parents were ecstatic to finally have her home, but they were concerned about the hole in the little girl’s heart, which was also discovered soon after her birth. Doctor’s reassured them it should disappear over time on its own.

November 1990 / Doctors thought Shannon might have had a mild form of retardation and suggested her parents take her to group therapy for families of birth-defected children. They reluctantly agreed since she had yet to hit the milestones most babies her age should achieve such as sitting up on her own and crawling.

April 1992 / Shannon’s sister, Megan, was born only a month ago and already she’d began to develop and grow in ways that Shannon didn’t. Shannon, now able to talk, was surprised by this new revelation called ‘the little sister’. She was no longer the center of attention, as is normal for most children to feel uncertain about, and was something she’d have to get used. But there was more. She was beginning to notice, if not necessarily understand, the differences between the new baby and herself. Megan was a big baby, with light, light blue eyes and white-blonde hair growing in tufts on her head. Shannon saw that she was small, almost smaller than the new baby, had darker curly hair, and was less pudgy than this baby. Regardless, Shannon smiled in delight at having a sibling.

August 1994 / Shannon circled what felt like miles around the house in search for her mother, so excited her face was sore from all the smiling but she couldn’t stop. A Kermit the Frog book was wedged in the crook of her little arms. She had taught herself to read and she wanted the world to know it, but especially her mother. She finally found her in the front garden, rushed her inside, and sat her on the steps leading to the second-story of the house. She read the book to her again and again, almost as if she had memorized it. Long after her mother had returned to the garden, she still had the book in her grasp. She could read. She felt normal.

September 1994 / Shannon had to get glasses. They had to be specially made to fit the frame of her tiny face, but her parents reminded her that that was normal for most children as was everything else in her life. There was nothing wrong with Shannon, no sir, and the little girl smiled, believed them, and put on a brave face for them even if she realized something that couldn’t possibly be normal. She couldn’t see through both eyes when the doctor asked her to look at Mickey Mouse while he tested her. Shannon left the eye doctor as she did every year after that: confused.

August 1995 / Shannon’s mother had signed her and Megan up to take dances lessons. It quickly became apparent to everyone, Shannon included, that unlike her sister, Shannon was more prone to forgetting steps and losing her footing than the rest of the students. Shannon noticed, but took it in stride because she still got to wear the frilly costumes and take lots of pictures. “You’re just a little clumsy,” her mother reminded her. “You’ll grow out of it, someday.”

May 1998 / Shannon’s teachers had started to nickname her “The Girl Who Called Home.” For days at a time, Shannon would trudge into the office, complaining of flu-like symptoms, headaches, and pains that shoot up and down her arms and legs. All of them disappeared upon having gone home and taken an over-the-counter supplement. Every time Shannon complained, her mother insisted the pains were a part of growing older, taller, and wiser. Shannon shrugged off the excuse, because she didn’t feel as if she was growing at all. She just felt the pain, and she didn’t know why it was there.

June 1998 / Shannon tried her hand at playing the piano by convincing her father to pay for lessons. Megan went too, because if Shannon wanted to play, she did too. It was obvious to Shannon, like with dancing, Megan was faster at learning how to play and that made her jealous. She’s also frustrated because she just wasn’t getting it, each key should be somewhere, but she’s pressing the wrong ones. This made the teacher mad too. Shannon saw it in her red face, in her stiff posture, heard it in her voice. Shannon gave up lessons after that. Playing piano just wasn’t her thing.

October 1998 / It had been the week from hell for Shannon. Home sick with a persistent cough that didn’t seem to end, her mother finally took her to see a doctor. But the notion of a simple visit took a dramatic turn. A nurse came in with a gigantic breathing machine to cover Shannon’s little face. Suddenly, Shannon was overwhelmed with fear. Her mother had disappeared and she wanted to cry. Large men took her away on a stretcher. She briefly saw her aunt in the waiting room. “Where’s my mom?” she screamed, “MOM! MOM!” Her hand was grasped and her mother was suddenly at her side. She promptly explained to Shannon that she’s sick and was going to be taken to the hospital. This does nothing to calm Shannon. She hadn’t been there since she was born. From what she’d heard of it, that place symbolized that something was wrong with her. They loaded her into the ambulance and her father was waiting at the door. Both parents promise her they’d be following the ambulance. The door shuts. She was left to fight her stewing fears on her own.

November 1998 / Weeks passed in the hospital an despite her insisting that she was okay, Shannon had yet to leave it. “Your immune system isn’t fighting off the infection like it should and it doesn’t help either that when you were born your lungs were just barely developed. It makes it harder on you and you have to be patient,” they had said. Oh that again, Shannon would think. Why does it always go back to how I was born? I thought I was just born small. Eventually she was released and able to go back to school. She was diagnosed with asthma and her parents were told to monitor every cold she had from there on to prevent the re-occurrence of pneumonia and avoid another lengthy hospital visit.

December 1999 / Through her cousin, Shannon discovered the craft of making websites. She quickly became immersed, almost addicted to the thrill of learning how to add color, meaningless text, graphics, an HTML to a simple page; it was magical. It was something she could call her own where her sister couldn’t outshine her. It was something she was good at and she needed to be good at something after so many years of grasping at straws and nothing coming to surface. Despite the seclusion it brought after spending days at a time with the computer rather than people, Shannon finally felt normal again.

February 2005 / Shannon discovered that high school could be very hard. Everyone seemed to have something to say about her size, her poor grades, and her mental health. Shannon couldn’t walk through the halls without someone commenting on her height as if they’d never seen someone so short before (“Oh my God, did you see that munchkin walking down the halls? I thought Oompa Loompas weren’t real?”). They took things from her, would hold them out of reach, and occasionally pick her up and toss her around like a doll. School specialists were persistent to test her for learning disabilities and depression. Shannon refused the offer on the promise that her family once gave her, “There’s nothing wrong with me. I’m as normal as anyone. I was just born small and you can’t tell me any differently because you weren’t there!” Anger and frustration fueled this teenage denial like gasoline on a fire, but despite this, her worst nightmare was slowly creeping up on her reality and Shannon was terrified that she just may have been wrong all along.

October 2006 / Shannon slowly swallowed her pride and began to disguise her grief with sarcasm. The emotion still seeped through her face, but she would ignore it and say something witty to break the tension. Episodes like this were especially evident in times of crisis such as when Shannon started, almost randomly, having seizures: “I totally meant to take a nap in the shower…” Each one would terrify her mom and sister to the point of tears, and Shannon, to be brave despite how much the seizures scared her too, would be on the floor making jokes even if she was unbearably sore and tired. “I don’t know why you have to wheel me away on this thing. It’s not like I lost a leg…”

May 2008 / A school project about her life allowed Shannon the opportunity to open the door to her past. She found a video recording of the days she had spent in the hospital as an infant, igniting an itch to know everything about her story before she knew she even had one. Neither parent had satisfactory answers when recalling her beginning. Neither parent told her why she was dealt the cards she had in life. She searched for answers through God, but all that came back was silence and a disgruntled need to blame someone for her problems. Finally, she sought answers for herself by looking up every condition and symptom she had on the Internet. Some clarity rose from the ordeal. Problems associated with Hydrocephalus can include learning disabilities, vision problems, migraine headaches, and epilepsy, among other things. But that still didn’t explain everything…

February 2013 / Another long visit to the neurologist brought to light why, since she a little girl, why Shannon would have shooting pains up and down her arms and legs. Once again looking to her abnormality of the spine, it was discovered she had had Cerebral Palsy her whole life and the developmental delays as well as the pains are a significant indicator of that. As the doctor left the room, Shannon breathed deeply to take it all in. You are normal, Shannon. This is just normal for you and that’s okay.

Shannon Stevens