Saturday, October 13, 2012

1 Out Of 2,000


Blogging Friends.... This post is a "work in progress". Of the sorts. I feel ready to write this, however, I'm still dealing with and sorting it out....  

Statistics. They back up factual information. Serve as significant tools when learning about a subject. Significant tools. Such as 75% of canines which enter shelters nationwide are mutts. Beautifully Unique mixed breeds. Canines like Rose, my "Mystery Dog". A potentially random-bred Beagle/German Shepherd cross. My mutt. My Heart Dog!! I happen to love statistics!! As a "journalist at heart", an artist who "paints with words", they fascinate me. Immensely. Several months ago, in June, I wrote a Blog post about how Tony Stark's line from "The Avengers" ("You know, I've got a cluster of shrapnel, trying every second to crawl its way into my heart.
[Stark points at the mini-arc reactor in his chest]
This stops it. This little circle of light. It's part of me now, not just armor. It's a... terrible privilege.")
has left this lasting impact on my life as somebody who lives with an unwanted learning disability. A lasting impact. Especially those final three words. "A terrible privilege". Because. My learning disability--being born different--is, in fact, "a terrible privilege". This has since become more than just some movie line. More than just a quote by Tony Stark. Yeah. It has evolved into something far more beautiful than that!! Far more beautiful. "A terrible privilege" is now some mantra of mine, this silent chant which I repeat whenever I'm feeling sorry for myself. Throwing yet another pity party, wishing I were "normal". How motivational those three words!! "A terrible privilege." They resurface within my mind, like some fish's little head in water, at the most appropriate moments!! Every time!! Such was the case several days ago. I threw myself a pity party. They come on quite suddenly, those pity parties, like some surprise enemy ambush. And I am rendered defenseless. There were tears, mood swings, excessive hours of low self-esteem. Because I am different. My "baby sister" is much more capable than me. Why am I not "normal"? Blah, blah, blah. "'A terrible privilege". 'A terrible privilege'. 'A terrible privilege'. 'A terrible privilege'. "A terrible privilege'." I softly chanted to myself. The mantra proved useless. I was still basking in self-pity!! Oh, if only I were not different!! If only I didn't have premature short-term memory loss!! Which, most likely, is resulted from craniosynostosis. Wait. What?! It is a birth defect. Craniosynostosis means I was born sans any soft spot. Twain separate scull operations--one of which he removed bone from my forehead--is probably responsible for any and all "developmental delays". Not that I am blaming our skilled neurosurgeon!! He did save my life, or so I have been told. Our Dad teasingly referred to me as "Frankenbaby" because of sutures that are now scars. Ugly-looking scars which prove as indelible reminders of my unwanted medical past. Dad was not joking!! I have seen pictures. I did look like a Frankenbaby!! Craniosynostosis, according to medical facts 28 years ago, mostly affected boys. Based on some Web site that I recently found, this still stands accurate. And I am, most assuredly, female!! That is a terrible privilege. According to an Internet research study, one out of every 2,000 live births are afflicted with craniosynostosis. I highly doubt that this statistic has changed throughout the course of 28 years!! Statistics are seldom ever altered!! That is a terrible privilege. The cause of craniosynostosis remains unknown. It is, for the most part, sporadic, happening by chance, according to one recently updated Web site. I was "chosen". That is a terrible privilege. So. I suffer from premature short-term memory loss.... And have my entire life. But. I can relate to and easily befriend 40-50-60-70-80-90-something people whose memories have weakened. Older beings with lifelong wisdom--and should my stubborn ears listen--I glean from. That is a terrible privilege.  

 

 

 

 

 

 

 

 

 

 

 

 

20 comments:

scotsmad said...

We all have pity parties at times. It helps us move on and get stronger.

XXXOOO Daisy, Bella & Roxy

Molly The Wally said...

Oh my we did not know any of that. What a difficult start you had. But you are here and well. Have a super Saturday and enjoy the weekend.
Best wishes Molly.

finnhoward said...

I hope you can use this blog as a platform to help others learn about craniosynostosis. I did not know what is was.

Raelyn said...

Daisy, Bella & Roxy....
Thank-you for the comment!!
"We all have pity parties at times. It helps us move on and get stronger.". Very good. I shall keep that in mind!! ;op

Raelyn said...

Molly....
Thank-you for the comment!!
A difficult start, indeed. But, I am alive and well!! ;op

Raelyn said...

finnhoward....
Thank-you for the comment!!
"I hope you can use this blog as a platform to help others learn about craniosynostosis. I did not know what is was.". You are sweet. And, interestingly enough, there are far more facts out there about craniosynostosis.... Creepy medical facts which I did not express on this post!! ;op

Dip-Dip and the Bridge said...

I have never heard of your medical condition before Raelyn but it is like everything, you never do know these things unless you know someone who has it.
I admire you very much and the way you make the most of every day, devote your time and love to your sweet Rose and keep a good sense of humour. I am glad to have met you through Blogville.
Lynne x

Stacey said...

oh wow, I had no idea! Sounds like such a hard start, makes you realise how thankful we're to have doctors etc!

Raelyn said...

Lynne....
Thank-you for the comment!! It choked me up a bit!! ;)
"I admire you very much and the way you make the most of every day, devote your time and love to your sweet Rose and keep a good sense of humour. I am glad to have met you through Blogville.". Awww.... You are sweet!! But. You are also "seeing" the part of me who is embarking on an incredible journey of self-discovery and acceptance!! Yeah. This is a fairly new concept for me!! ;-]
I, too, am glad to have met you through Blogville!! ;op

Raelyn said...

Stacey....
Thank-you for the comment!!
Yep!! Doctors and skilled surgeons are awesome!! Heroes, even!! ;op

Ruby said...

I have been thinking about this a lot, as I know you struggle with it. Accepting things like this can be hard, believe me I know. Only 1 out of 12,000 are born with Trisomy 13, and our son was the 1 almost nine years ago. However, I have been able to see how God used that to His glory, to really grow me and to allow me to help others. It is painful, and sometimes discourgaging, but I am now at a place where I wouldn't trade any of the pain or sadness. It has made me a better person and strengthened my faith. Hopefully we can talk more about this, as I have some (hopefully) helpful tips for you!

Raelyn said...

Ruby....
Thank-you for the comment!!
"I have been thinking about this a lot, as I know you struggle with it." Wow. Now that is God!! ;)
Only 1 out of 12,000 babies are born with Trisomy 13? I never knew that!! So. His birth. Your heartbreaking loss. It's a terrible privilege!! :-]
Warning. I am in a place of confusing emotional vulnerability right now. But this is not something negative!! For once. ;-}
I said a prayer of gratitude last night. Thanking God for sparing Robert Downey Jr.'s life. For Iron Man. For Tony Stark. For that line which has so profoundly impacted my life. For "The Avengers". Because it is all connected!! Had God not spared Robert Downey Jr.'s life....

Suka said...

Hi Raelyn,

I am sorry that you sometimes suffer emotionally due to your condition. I think we all have our cross to bear and you seem to be doing your best to live a happy, healthy life. You have a lot of love to share and Rose is very fortunate that you share it with her. :-> And we in blogville are very fortunate that you share your wisdom and struggles and knowledge with us.

Every one I have ever met, including myself, have had pity parties, so do not feel alone. I like eating chocolate during my pity parties. :->

K and Suka

Raelyn said...

K and Suka....
Thank-you for the comment!!
"I think we all have our cross to bear and you seem to be doing your best to live a happy, healthy life.". I try!! ;)
"We in Blogville are very fortunate that you share your wisdom and struggles and knowledge with us.". Good. Because I shall keep the "knowledge" coming!! ;-}
Chocolate!! Oh, no. Do not encourage me!! A have quite the sweet tooth, already as it is!! Hee, hee, hee.... ;op

Remington said...

I had no idea....thank you sharing....take care, my friend....

Raelyn said...

Remington....
Thank-you for the comment!!
Take care, yourself, my Friend!! ;op

Alison said...

We definitely all have our own pitty parties. Lord knows I had mine the last few years, struggling with weight and thyroid issues. I think you are incredibly brave Raelyn and beautiful to boot.

Your post made me think of a quote from the show Dead Like Me.
"Life is simple, it's just not easy."

Raelyn said...

Alison....
Thanks for the comment!!
"I think you are incredibly brave, Raelyn and beautiful to boot.". Oh. You are sweet, my Friend!! ;)
"Life is simple, it's just not easy.". That. Is. Perfect. ;op

KSO said...

What doesn't kill you makes you stronger, that should be your mantra because you are a very strong person.

Raelyn said...

KSO....
Thank-you for the comment!!
"What doesn't kill you makes you stronger, that should be your mantra because you are a very strong person.". Ohhhh.... ;op