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!!
That is such a lovely and moving story Raelyn. They say you should always write from something you know and you are certainly very knowlegeable about craniosynotisis. I learned a lot just by reading your introduction. It is so brave when someone can put aside the thing they were born with and live a happy and productive life. I wish you every success with your writing.
ReplyDeleteLynne x
Lynne....
DeleteThank-you for the comment, Friend!!
"That is such a lovely and moving story Raelyn. They say you should always write from something you know and you are certainly very knowledgeable about craniosynotisis. I learned a lot just by reading your introduction. It is so brave when someone can put aside the thing they were born with and live a happy and productive life. I wish you every success with your writing.". Thanks, Friend!! I have somehow always known about craniosynotisis save medical terms and such. When I wrote my Life Story, I researched the birth defect. I learned a lot!! The facts in this post's intro are taken from my Life Story, which were taken from retired Yankees baseball player Jorge Posada's Website, as he had a son born with craniosynotisis. ;op
Lovely! So proud of you for being brave and honest! So neat to see God using you to bless others. See? He created you a special way, knowing that someone, someday would need your special love, wisdom and encouragement. The kind you could only get by going through what you went through for the last thirty years. You are exactly who you are supposed to be in Him! I wouldn't take you any other way!!!!
ReplyDeleteRuby....
DeleteThank-you for the comment, Friend!!
"Lovely!". Thanks!! I am glad that you liked this story!! ;)
"So proud of you for being brave and honest! So neat to see God using you to bless others. See? He created you a special way, knowing that someone, someday would need your special love, wisdom and encouragement. The kind you could only get by going through what you went through for the last thirty years. You are exactly who you are supposed to be in Him! I wouldn't take you any other way!!!!". Wow. Way to touch my deepest, most heartfelt emotions, Friend!! You are so sweet. ;op
It's a... terrible privilege!! ;-D