Fifty Percent

Blogging Friends.... I hereby behold my Top-Secret Quest!! Drum roll, please.... No. Seriously. I love, love, love rhythm!! It is self-titled: OPERATION Beautifully Unique!! Sorry for the delay in "publishing" this. Once-a week Blog posts will not be some regular occurrence!! I promise!! 

 "Hero". This is a grossly overused word in the current culture for which we reside. And one that I do not freely throw around. I can admire somebody for diverse reasons, but this doesn't necessarily make him/her my "hero". However. When somebody profoundly changes my life, this very well may qualify him/her as being a "hero" to me!! But. Does it count when this certain somebody is a fictional character brought vividly to life by Robert Downey Jr.? I think so!! Tony Stark/Iron Man is my hero. There. I said it!! Tony Stark/Iron Man is my hero!! This has become a recent self-discovery of mine. What can I say? Tony Stark/Iron Man has left a lasting impact on my life!! All because of one scene in "The Avengers". One line. "It's a... terrible privilege.". Well? It has been nearly nine months since my ears first heard Tony Stark speak those words. Nine months. Meanwhile, God has been teaching me--slowly--that everything regarding my life is, in fact, "a terrible privilege". I was born with this neurological birth defect called craniosynostosis. Wait. What?! Craniosynostosis. It means that I was born sans any soft spot. If memory serves me right, over time, the back of my scull became malformed, making a "point". Craniosynostosis--according to medical facts 29 years ago--mostly affects boys. And I am female!! 1 out of every 2,000 live births are affected by craniosynostosis. 1 out of every 2,000 live births. The cause of craniosynostosis remains unknown. It is, for the most part, sporadic, happening by chance. Thus, God has been teaching me--slowly--that these statistics are "a terrible privilege". My craniosynostosis was surgically operated on. Twice. Dr. J. even removed bone from my forehead!! He threw it away, like some useless piece of junk. The scars form a "T". My part? It is a scar!! We were scheduled for operation number three, but, miraculously, God healed me!! Meanwhile, I was also born with another birth defect. Congenital Diaphragmatic Hernia, or CDH. Wait. What? Congenital Diaphragmatic Hernia. This is an extremely life-threatening illness. It means that I was born with a hole in my diaphragm. Yep. And I was a more milder case than most. Amazingly enough!! While CDH causes "part of the organs from the belly (stomach, spleen, liver, and intestines) to go up into the chest cavity near the lungs also forcing the heart to move", my little body was spared of that!! For which I am grateful. If memory serves me right, my spleen was displaced. Plus. One of my lungs collapsed as resulted from CDH. And, while many children reherniate, I've never heard any stories which indicate that I did. One out of every 2,500 live births are affected by CDH. One out of every 2,500 live births. Approximately 50% of babies who are born with this condition do not survive. Approximately 50%. God has been teaching me--slowly--that these statistics, too, are "a terrible privilege". Our surgeon operated on this medical problem, sealing up the hole in my diaphragm. Oh yeah. And they also severed my appendix. To evade further problems!! As resulted, I now have one long scar across my abdomen. So. Time to be proactive with Tony Stark's message of "It's a... terrible privilege.". Thus, announcing my Top-secret Quest!! I am in the process of Google-searching Blogs authored by Mothers who either gave birth to children born with craniosynostosis, or CDH. Leaving comments. Then, reading these Blogs forevermore. I began with craniosynostosis. My comment to Moms of girls is this:

 

I just discovered your Blog. I, too, was born with craniosynostosis, among other birth defects. I am now 29 years old. I love, love, love to write!! I do live with learning disabilities. Unfortunately. But, I'm slowly being taught, that, in so many ways, as Tony Stark/Iron Man said in "The Avengers", "It's a... terrible privilege.". Everything is. It's my cross to bear. ;)

(Specified name) is beautiful!! No, wait. As my phrase goes, she is Beautifully Unique!! ;-D

Keep posting. I want to watch (Specified name) grow up!! ;)

--Raelyn

And, much to my tearful delight, there have been responses!! From Julia's Mom: Thank you so much Raelyn! It’s always great to hear from someone with experience! I really appreciate your post. Julia is a sweet little girl!! She has an affectionate laugh!! I watched a video!! From Alayna's Mom: Raelyn - Thanks for commenting! And thank-you, I think my Alayna is beautiful, too. :) Alayna has a huge, rather mischievous personality!! Girl after my own heart!! From Rollin's Mom, in a comment on Beautifully Unique: hi! thanks for following our blog and my son Rollin who also has craniosynostosis! hope you are well, love the photos of your precious doggies! Rollin certainly likes superheroes!! He looks ready to assemble The Avengers in his Captain America costume!! From Ainsley's Mom: Thanks for your comments Raelyn. It's great to hear from someone who is an adult and has been through some of the same things as Ainsley. Ainsley is both developmentally and physically disabled. But that does not keep her from smiling!! What an example.... And, last, but not least, From BB's Mom: Thanks for visiting us. BB has taught me one thing, that life is precious with all kind of abilities or lack of thereof. He has taught me to slow down and enjoy the march of ants

Good Luck in everything you do. Do not let anything slow you down Cheers. BB is a beautiful boy!! Beautifully Unique.... They all are!! Then. I Google-searched Blogs authored by Mothers who gave birth to children born with CDH. I had previously educated myself on this birth defect's breathtaking statistics. And, while researching them, I was--emotionally--punched in the solar plexus. Hard. It is very disconcerting when you realize that you're a survivor, and could have died. For I am.... The other 50%. Furthermore disconcerting? When you Google-search CDH Blogs, and the first two Web sites found are about children--one an infant, another six--who died. Victims. "Angels". All on account of a birth defect which I conquered!! Oh, this has touched and overwhelmed my deepest emotions!! My deepest emotions. I am not sure what to make of this. It's as though CDH is some terminal disease!! Like cancer. I'm conflicted right now as to whether or not I should be grateful for my life which was spared, or feel a strong, palpable sense of "survivor's guilt". Perhaps I can experience both emotions. Honestly? I do not even have anything to offer to Mothers who lost their children because of this life-threatening birth defect. For I am still here!! Eventually, I did discover some Blogs authored by Mothers whose CDH children are alive. Several, actually!! And, my comment to Moms of boys is this:

 

I just discovered your Blog. I, too was born with a diaphragmatic hernia, among other birth defects. I am now 29 years old. I love, love, love to write!! And, I enjoy singing. It sets my soul free somehow. People say that I am good.... ;)

(Specified name) is adorable!! Beautiful in more ways than one. No, wait. As my phrase goes, he is Beautifully Unique!! ;-D

I will be praying for (Specified name's) continued good health!! ;)

Keep posting. I want to watch (Specified name) grow up!! ;-D

"I (we) shouldn't be alive... unless it were for a reason." ~Tony Stark. ;)

--Raelyn

I feel such a kindred connection to these kids!! Their faces. Their stories. I cannot get these children--many on oxygen still struggling to become healthy--out of my mind!! The same feeling applies for kids born with craniosynostosis. A kindred connection. Especially with the girls!! I did not expect that. Now for a different kind of "kindred connection". Between Rose and me. Whenever I stroke my little girl's velvet-soft fur, she often rolls onto her back, exposing stomach for a belly rub. Which, of course, I happily give. One afternoon, my fingers traced along Rose's abdomen scar from when a veterinarian spayed her. And, suddenly, I felt this deep sense of correlation with Rose!! We both have abdomen scars for different reasons!! Which, seems befitting!! Rose is my Heart Dog, after all!! You know what? I do not need any reminders to glance upward and thank God for my existence!! No. I have a very physical reminder across my abdomen--in the form of a scar--indicating that I'd not be alive without surgery. And yet. What have I done with this life? What? I have wasted away several years on account of mood swing-induced pity parties!! Oh. I realize what I am doing with my life. That's a no-brainer. But the real question is: What am I not doing with my life? "It's a... terrible privilege.". Hmmm.... I should have these words tattooed on my left forearm. What do you think? Or. I should write Robert Downey Jr. and share how by playing Tony Stark/Iron Man, he has profoundly impacted my life. What do you think? Ummm.... Both notions freak me out!!