I'm sort of in the process of just working on what is speaking to me at a particular moment. That's very common for me right now. --Bruce Springsteen, January 9th, 2014

Monday, February 3, 2014

"Made For Each Other"

Blogging Friends.... This is officially my first fictional children's story that I have written as a thirty-year old!! Cool!! It is also my first fictional children's story that I have written with a head cold. Not. Cool. We all know that February is a month when Valentine's Day occurs!! So that being mentioned. Have yourselves a craniosynostosis-themed love story!! Apparently, I am quite the romantic!! Enjoy!!

"Creating beautiful mosaic artwork" with the broken, shattered pieces of my dream to be a published author....

I was born with craniosynostosis. Based on research. Craniosynostosis is when an infant’s sutures fuse too early and it affects the growth of the brain. Often, the end result is an infant with an abnormally shaped head. An infant’s brain begins to grow before birth and continues to grow throughout the infant’s first three years of life. At birth, an infant has 40% of his/her adult brain volume and this increases to 80% by three years of age, and to 90% by seven years of age. An infant’s skull consists of bones that are separated by soft joints called 'sutures'. The 'soft spot', or fontanel, is where the sutures meet on the top of the forehead. As an infant’s brain continues to grow, the sutures continue to grow. Throughout an infant’s first three years of life, an infant’s sutures will close or 'fuse' in sequence. Craniosynostosis may involve the premature closure of a single suture or multiple sutures in the case of a syndrome. Craniosynostosis, if left untreated, can cause severe and permanent damage. An infant may have increased intracranial pressure, seizures, neurological deficiencies, eye problems, malalignment of the spine, and cognitive and developmental delays. Also based on research. There are five different types of craniosynostosis. Unicoronal. Bicoronal. Metopic. Sagittal. And, the rarest type of craniosynostosis is Lambdoid. It affects 1 in 100,000 births. The cause of craniosynostosis is unknown. It is sporadic. It can be present at birth (congenital). It can be hereditary. The hereditary form often occurs with other defects. However, most cases of craniosynostosis occur in a family with no history of the condition.

Note. I infused myself, plus very personal thoughts and feelings into the main character, Julian. I did not expect that!! It felt so weird, like I was having an out-of-body experience. For as I wrote, I was not me, but Julian!! Or was Julian me? It depends on your perspective, I guess!! But as it turned out? Writing this fictional children's story was quite the therapeutic and healing experience for me in my ongoing self-acceptance journey!! Also. I was being symbolic with twain subtle hints of purple in this story, as that is the craniosynostosis color!!
 
"Made For Each Other"

Sometimes things and events in life seem connected. Because they are woven together like a unique blanket. Some might call it "fate". Or "destiny". Either way, when things and events in life seem connected, they are, without a doubt, "meant to be". Because whether it is "fate". Or "destiny". Either way, it has been written, like some story, from the very beginning of time. By God Himself. And then, sometimes things and events have a way of bringing two people, two paths, together. Just like that.

Thirty years ago, Julian was born with a rare birth defect called craniosynostosis. What does that mean? Julian was born without any soft spots. What does that mean? Julian had an unusually hard head. And it was not round like a healthy baby's skull should be. No. Julian's head had quickly become more of a "football" shape. Craniosynostosis. What a big word for such an infant so tiny. Julian's head needed to be cut open and reconstructed, or built again, like some broken Lego creation. So his loving parents, Randolph and Eve, gave him up to this skilled surgeon named Dr. Johnson who performed the operation. It was a success!!

However. Because Julian was born with craniosynostosis and needed surgery, he has had developmental delays, or learning disabilities, his whole life. See. Julian has short-term memory loss. Sort of like Dory from Finding Nemo. Julian always has found it difficult to remember things, even as a boy growing up. Memorizing Bible verses in Sunday school? He could not do it. At age thirty? Julian often forgets what he was saying while talking to friends. Moments like that can make him feel embarrassed. Julian sometimes does not remember people's names. He accidentally forgets promises that were made. Having short-term memory loss can sometimes make Julian feel stupid, frustrated, old, and very, very, very sad.

All I want is to be "normal", whatever "normal" is, Julian has often thought, If some crazy purple genie in a shiny golden lamp were to give me three wishes, I would ask away my short-term memory loss.

Sometimes things and events in life seem connected. Because they are woven together like a unique blanket. Some might call it "fate". Or "destiny". Either way, when things and events in life seem connected, they are, without a doubt, "meant to be". Because whether it is "fate". Or "destiny". Either way, it has been written, like some story, from the very beginning of time. By God Himself. And then, sometimes things and events have a way of bringing two people, two paths, together. Just like that.

One Monday morning, Julian drove to work at Wal-Mart. It would be an ordinary day. Listen to the boss. Do his job. Drive home. Or so he thought!! But while at work that Monday morning, Julian's life would change forever!! Because there he'd meet a beautiful 28-year old woman!! Her name was Juliette. Julian had never seen this woman before. Juliette may have seemed new at Wal-Mart, but to Julian, it felt as though he had known her all his life!! Somehow. Julian just could not wait to meet Juliette!!

That afternoon, he got his chance!! Because both Julian and Juliette's work hours were over. It would soon be time to drive back home.

"Hi there," said Julian, "We have not met. Are you new here?"

Juliette smiled.

"Yes, I am!!" she answered, "I am so happy that you noticed me!! First days at work are always hard!! I do not know anyone yet."

Julian smiled a big grin.

"Well," he said, "You know someone now!!"

As time passed by, Julian and Juliette quickly got to know each other. They went out on dates. Sometimes it was dinner. Or a movie at the theater. Sometimes it was their favorite rock star's concert. Julian and Juliette held hands as they walked through parks together. When the two talked, it was about everything. Work. Family. Dreams. All except for one huge thing that Julian did not want to talk about. His birth defect and resulting learning disabilities. But one night at dinner, Julian knew that he needed to be completely honest with Juliette. So he bravely brought it all up.

"There is something about me that I think you should know," began Julian, "I have short-term memory loss. Because I was born with craniosynostosis...."

Julian started to explain his birth defect in medical terms, but Juliette stopped him when she laughed. This startled Julian.

I am telling her something that's very, very, very hard to talk about, he thought, Why is she laughing?

Poor Julian had a look on his face like he had just been made fun of. Which Juliette noticed.

"I am sorry," she said, all while trying to stop laughing, "Did--did--did-- you just say 'craniosynostosis'? I know all about that birth defect. Because I was born with it too!!"

Julian gasped and his jaw dropped wide open. He was speechless. Suddenly Julian understood why, exactly, it felt as though he had known Juliette all his life!! They were Craniosynostosis Kindred Spirits!! Julian's heart began pounding as though some drummer was playing on it. Thump, thump, thump, thump. His head spun like a ceiling fan. Around and around and around. After what seemed like forever, he broke the silence.

"You were born with craniosynostosis?!" said Julian, his voice sounding surprised and shocked, "Wait. What?! But you have such a good memory!! What are your learning disabilities?"

"I do not have any," answered Juliette, "The only way you can tell that I was born with craniosynostosis is by a bump on my forehead. Because Dr. Johnson took some bones out of it and threw them away. I guess my forehead had too much bone!! It looks sort of like I have been hit with something. My left eyebrow is a little bit higher than the right. You can see it when I raise them. My left eye is a little bit higher than the right. Plus I have a scar from where Dr. Johnson cut me open. But my hair does a nice job of covering it up!!"

"Dr. Johnson?" said Julian, his voice now sounding curious, "Weird. My surgeon's name was Dr. Johnson...."

"Really....?" said Juliette, "Was your surgeon's full name Dr. Dominique Johnson? And what hospital did you have your craniosynostosis fixed at?"

"Uh....," said Julian, "I do not remember what hospital I had my craniosynostosis fixed at. But the surgeon's name was Dr. Dominique Johnson. I remember that part!! Dr. Johnson cut open my head two different times."

"Wow!!" exclaimed Juliette, "Your head was cut open two different times?! I only needed surgery once!!"

"Yeah, well, not me," said Julian gloomily, "My head was cut open two different times, so now I have short-term memory loss. You know what? Sometimes I feel like shaking my fist and yelling at craniosynostosis. Whenever I hear that somebody's baby was born with my birth defect, I hurt so badly for that child. Because what if he has learning disabilities like me? Sometimes I feel like a mutant from X-Men. So different. Sometimes it feels as though nobody is like me at all."

Juliette looked at Julian, her face filled with understanding.

"But I am like you!!" she said, "We were both born with craniosynostosis. You and me!! We were 1 out of 2,000 babies chosen for this birth defect!! Yes, chosen!! You know what? It's a terrible privilege. And personally? I like hearing about babies who are born with my--I mean our--birth defect!! Because it means that I am not the only one!! Now, as for your feeling like a mutant from X-Men? Stop it. Because you are not a mutant!! You're beautiful!!"

Julian looked at Juliette, completely amazed by her good attitude toward life. He could learn a lot from Juliette!!

She is so beautiful, both inside and out, thought Julian, I think I love her!!

The next day, Julian looked into Juliette's eyes. They were a deep dark brown. Then he asked her to marry him. She said "yes"!! Shortly after their wedding day Julian and Juliette brought a baby girl into the world!! Her name was Destiny!! They were so very happy!! Destiny was wrapped tightly in her purple blanket and being held by Juliette when their pediatrician, Dr. Keller, softly knocked on the door.

"I have some news to tell you....," she said slowly, "Sweet Destiny is perfectly healthy.... But...."

Before Dr. Keller could continue, Julian and Juliette looked at each other. The proud new parents just smiled. Then they looked at Dr. Keller.

"We already know what you are going to say," said Juliette, "Destiny has craniosynostosis, doesn't she?"

"Yes," said Dr. Keller, "I'm afraid that Destiny is going to need surgery soon."

Then Julian spoke up.

"Destiny's beautiful," he said, "She is, and always will be. Even with a 'football'-shaped head she's beautiful!! Surgically-created scars? She will still be beautiful!! And if Destiny has to live with short-term memory loss? She will still be beautiful. And confident. Just like her Mom."

Juliette smiled. She felt so incredibly proud of her husband!! He had truly come a long way toward being alright with craniosynostosis!! Later, Julian and Juliette made an appointment for Dr. Johnson. He performed Destiny's surgery. And it was a success!!