Wednesday, September 10, 2014

Cranio Girl Power

Blogging Friends.... Did you know....? That September is Craniosynostosis Awareness Month?! Well. It is!! In honor of my birth defect--and everyone who was born with it--here is a Blog post from an adult survivor's ever-evolving perspective!! {Mine, of course!!} Whoops, that sounded so very self-obsessive!! Carrying on. Love you later.

Sorry for not posting on Beautifully Unique since--gasp!!--August 30th. That was purely unintentional. Truth be told? My heart has apparently not been into Blogging lately. Plus this post wasn't yet ready!! But writing? It keeps me sane!! So I have written nearly every single day!! Now. Do not worry about me. I am fine.... I'm not experiencing any minor mood swing-infused pity parties!! I have just simply found myself in a prolonged season of soul searching regarding living with folliculitis decalvans. Life is good!! And I am happy!!

{These facts were taken from my Life Story!! Which, originally? They were taken from--if memory serves me!!--The Jorge Posada Foundation!! He has a son who was born with my birth defect.}

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.

Craniosynostosis. Over thirty years ago, I was born with a head of curly brunette hair. And I had craniosynostosis. Translation? I was born without any soft spots!! 1 out of 2,000 babies are typically effected by craniosynostosis. There are five different forms of this birth defect. Unicoronal. Metopic. Bicoronal. Sagittal. And, the rarest type of craniosynostosis. Lambdoid. It affects 1 in 100,000 births. Since I'm fairly confident that--according to pictures--my form of craniosynostosis was sagittal, I am 1 out of 2,000. You know what? I have grown to really love that statistic!! 1 out of 2,000!! Although. 1 in 100,000 would have been even more awesome!! My skull had been horribly disfigured--Mom said that it protruded from the forehead and back--when Dr. J. entered our Lives. He would perform twain separate reconstructive skull operations. Together, these surgically-created scars form an upside down "T". My "part"? It is twain craniosynostosis scars!! As a matter of fact. Dad even teasingly referred to me as "Frankenbaby" due to these scars. Yes, Frankenbaby!! But it was spoken lovingly, of course!! Ha. And Dad was not kidding. I have seen pictures. I did resemble Frankenbaby!! "Surgery will be just like setting a broken arm," Dr. J. confidently told Mom and Dad. However. If I--an adult "Cranio" survivor--were to describe the operation in three words, it would be this. Invasive. Terrifying. Miraculous. See, Dr. J. removed parts of my skull--and at one point threw some forehead bones away!!--then "rebuilt" it like an intricate, detailed Lego creation!! Not once. But twice!! Dr. J. said that my craniosynostosis was "severe", and he had never seen such a bad case!! Shudder!! I had also been apparently suffering from painful migraines because of skull pressure and I'd stopped sucking Mom's breast milk, unbeknownst to her. See. My mouth had latched onto Mom's breast. But I was not sucking any milk. That figures. Even back then I was putting on "brave acts" during times of suffering!! Was this an inborn trait?! I cannot help but wonder. See, I was a different case of craniosynostosis. Because while this birth defect--best as I can tell from research--is not in any way, shape, or form, fatal, when Dr. J. surgically repaired me, he saved my Life!! Yes, without his hard-earned skills and God's Amazing Grace, I would be dead!! Craniosynostosis, for the most part, only affects male infants. I am, most assuredly, a girl!! Although females can be--and are--born with craniosynostosis. It just is not as likely to occur. Any Google-search of craniosynostosis will--honestly!!--spin in this direction. A concerned mother expressing that her son has just been diagnosed with the neurological birth defect. It is seldom ever daughter. There are even craniosynostosis awareness Websites that manufacture onesies, bibs, and T-shirts which feature the phrase: "Chicks dig scars". Why yes, they do!! This I can personally prove!! So, I am a girl, who was born with craniosynostosis. I broke that medical rule. Thus, as per usual, I am exempt!! Which can only mean one thing. I was born a rebel!! Yes, it is my birthright!! Being a rebel!! I shall call this "Cranio Girl Power"!! You know what? That has a nice ring to it!! "Cranio" Girl Power!! 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. Uh-oh. I was also born with congenital diaphragmatic hernia and Wolff–Parkinson–White syndrome!! Well!! I do have a nephew, "J.", who was born with craniosynostosis!! Not sagittal, though. And they told my oldest sister that it was not hereditary?! Hmmm.... However, most cases of craniosynostosis occur in a family with no history of the condition. See. It is by "chance" that infants are ever born with craniosynostosis. Like the rolling of dice. Or some gambling game. I--among every other individual born with craniosynostosis--am like Heaven's poker game with chips, cards, and money bet. I must have been "chosen". For reasons beyond anybody's--beyond my own--comprehension. But not God's. I didn't know until recently that my craniosynostosis was "severe", or I'd been suffering from painful migraines and stopped sucking Mom's breast milk. However. I have always known this. Mom and Dad accepted Jesus Christ as their Savior because I was born with craniosynostosis!! See, I had been scheduled for operation number three. Dad complained to a co-worker about our problems. "Take your daughter to my church," he boldly suggested, "There she'll be prayed for. She'll be healed!!" Which is exactly what Mom and Dad did!! They drove to his Pentecostal foursquare church {Which, sadly, no longer meets there!!} I was prayed over, and God healed me, for I no longer needed operation number three!! Thanks be to God!! You know what? I believe this was a triple miracle!! Dr. J. reconstructed my skull!! God healed me!! Mom and Dad became Christians!! Yes, I have always been aware of our family's testimony!! But I never looked at that positive. Why? Because, as resulted from being born with craniosynostosis and having my skull reconstructed {Twice!!} I live with unwanted premature short-term memory loss. And that is what--for far too many years!!--I chose to focus on. The negatives. But my premature short-term memory loss {This learning disability} is what I lost through being born with craniosynostosis. Look at everything I have gained in Life despite having been born with craniosynostosis!! Because today? I am thirty-years old!! I have owned twain beautifully unique mutts--first Shadow Sunshine and now Rose Elizabeth!!--since I was nearly sixteen years old!! I just wrote my thirteenth--13th!!--fictional book!! I have twain adorable nieces under the age of three, "Amethyst" and "Opal"!! Wow. None of this--and then some--would have ever occurred sans Dr. J.'s hard-earned skills!! Not to mention God's Amazing Grace!! And now? Over one year ago, I was diagnosed with folliculitis decalvans. I am losing my beautiful hair. Eventually I will be completely bald. In a matter of time, I'll unveil those twain hidden craniosynostosis scars. And lately? I have felt self-conscious--ashamed even--of my craniosynostosis scars!! And during the rare, fleeting occasion when I delve into feel-sorry-for-me thoughts/feelings/emotions? Honestly? I think that somebody such as myself should not have folliculitis decalvans. Somebody such as myself should not be losing her hair. But complex thoughts/feelings/emotions set aside? Until my diagnosis of folliculitis decalvans, I was never grateful for any of the positives that have arisen from being born with craniosynostosis/Dr. J.'s skills. And now? Although, I do continue to feel self-conscious of my craniosynostosis scars. I am actively working on that!! When I think about my Frankenstein-like craniosynostosis scars? I am thankful for them both!! Because I'm so very glad to be alive!! Question. Why did it take a journey with folliculitis decalvans for me to truly become thankful for my craniosynostosis scars?!



4 comments:

Molly The Wally said...

We understand that it is so difficult for you as you have had more than your fair share of troubles if that is even the right word. We think you deal with things wonderfully and if it is any consolation you have an impact on all of us in a positive way. We always leave here on a positive note and realise how lucky we are. Virtual hugs to you. Have a tremendous Thursday.
Best wishes Molly

Raelyn said...

Molly....
Thank-you for the comment, Friend!!
"We understand that it is so difficult for you as you have had more than your fair share of troubles if that is even the right word." Yes. It is the right word!! I have had my share of troubles!! However. I am at last learning how to not victimize myself!! ;)
"We think you deal with things wonderfully and if it is any consolation you have an impact on all of us in a positive way. We always leave here on a positive note and realise how lucky we are. Virtual hugs to you." Awww, thanks, Friend!! ;op

Ruby said...

This is a great post. I don't know why it took all of this, but it did. Just be thankful and at peace that He grows you. Sanctification is a process, and one He is in control of. He knows what you need, and when you need it. His timing is always perfect.

Also, you are not your own, so maybe someone else needed to see you go through this, and see you handle it so well (you really are!), to know Him better and see Him working in you.

Raelyn said...

Ruby....
Thank-you for the comment, Friend!!
"This is a great post." Thanks, Friend!! I am glad that you enjoyed it!! ;)
"Sanctification is a process, and He is in control of it. He knows what you need, and when you need it. His timing is always perfect." Amen!! ;-D
"Also, you are not on your own, so maybe someone else needed to see you go through this, and see you handle it so well (you really are!), to know Him better and see Him working in you." Awww.... ;op