Beautifully Unique : Jayden

Friday, April 4, 2014

Jayden

Blogging Friends.... I know I owe you all a story about Rose. Looking back at my Blog post archives, I realize that it has been several weeks since I last wrote about Rose!! But never fear. Rose stories will come, I promise!! I actually plan to write one up today!! Love you later.

C.D.H. is, I think, much like a raging forest fire. Children born with it are fragile yet strong trees. Sometimes. The raging forest fire of C.D.H. can burn its trees, scalding them badly. These such C.D.H. children then live most of their lives with unwanted health issues. Sometimes. The raging forest fire of C.D.H. can merely singe its trees. Such as in my case. Then the only sign that there ever was a raging forest fire at all is very visible yet beautiful scars. And tragically. Sometimes. The raging forest fire of C.D.H. can burn its trees to ash. As C.D.H. children are still dying. But I have personally witnessed something miraculous firsthand. Even trees that have been badly burned grow back afresh!! Never lose hope.

Just days after I posted this--on April 2nd--the "raging forest fire" of congenital diaphragmatic hernia, heartbreakingly, took another "tree". His name was Jayden. I visit a dear C.D.H. Mama's Facebook page, "Raising Healthy Congenital Diaphragmatic Hernia Children"--and am the "outsider looking in"--so, as I read about Beautifully Unique Kindred Spirits, I "knew" Jayden. Best to my knowledge, his Mommy never Blogged. I haven't a clue what he looked like. But I "knew" Jayden. I read all about his brave battles against C.D.H., how severe it was, complications, trials and triumphs on Facebook. I "knew" Jayden. And I, along with everyone else in that Online community, prayed for his survival.

This is taken from my private Word document journal upon reading the sad news. It's real and uncensored. For those of you who have issues with that, go and have a chat with my raw emotions. They will win the argument.

It hurts to be a survivor of C.D.H. sometimes.... It hurts like hell.... It hurts so damn hard.... I am alive.... My heart is beating within my chest.... Blood flows fluently through my veins.... I just wrote my ninth "book".... And yet.... Another precious Beautifully Unique little dude just lost his life today.... My Kindred Spirit C.D.H. Buddy's name was Jayden.... Rest in peace....

6 comments:

Unknown said...: How terribly sad. RIP sweet Jayden and we will pray for his family. Sometimes Fate can be so cruel.
Best wishes Molly.; April 4, 2014 at 10:22 AM
Mary Lou said...: Molly....
Thank-you for the comment, Friend!!
"Sometimes Fate can be so cruel.". I can't but agree.
Jayden's family will appreciate your prayers.; April 4, 2014 at 11:00 AM
Sketching with Dogs said...: I am so very sorry to hear about Jayden, hugs to you Raelyn.
Lynne x; April 5, 2014 at 12:06 AM
Mary Lou said...: Lynne....
Thank-you for the comment, Friend!!
"I am so very sorry to hear about Jayden, hugs to you Raelyn.". Thanks.... Extend your virtual hugs to Jayden's poor grieving family, too.; April 5, 2014 at 7:03 AM
Ruby said...: So sorry for you and for his family. A very hard situation. They'll need lots of prayers.; April 7, 2014 at 10:53 PM
Mary Lou said...: Ruby....
Thank-you for the comment, Friend!! I truly appreciated it!!
"So sorry for you and for his family. A very hard situation. They'll need lots of prayers.". Indeed.; April 8, 2014 at 7:11 AM

"It's A... Terrible Privilege"

{Taken from "The Avengers"}
Tony Stark: 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]
Tony Stark: This stops it. This little circle of light. It's part of me now, not just armor. It's a... terrible privilege.
Bruce Banner: But you can control it.
Tony Stark: Because I learned how.
Bruce Banner: It's different.
[Banner tries to read the computer screen, but Stark slides the data aside with his finger so the two can see face-to-face]
Tony Stark: Hey, I've read all about your accident. That much gamma exposure should have killed you.
Bruce Banner: So you're saying that the Hulk... the other guy... saved my life? That's nice. It's a nice sentiment. Save it for... what?
Tony Stark: I guess we'll find out.
[Banner and Stark get back to work at their respective computers]
Bruce Banner: You might not enjoy that.
Tony Stark: You just might.

Raelyn:

I am a 31-year old American woman. I was born with multiple birth defects. Craniosynostosis. {I did not have any soft spots.} Congenital diaphragmatic hernia. {I had a hole in my diaphragm.} And Wolff-Parkinson-White syndrome. {I had an irregular, rapid heartbeat.} All three birth defects have been surgically repaired!! I live with "developmental delays". Learning disabilities, if you will. Such as--unfortunately--premature short-term memory loss. Oh, and I have attention deficit disorder, as well!! I do not like to evade such an issue as my learning disabilities. No. It hurts sometimes to be different. I was also diagnosed with a condition called folliculitis decalvans. {I am more than likely going to lose my hair, go bald, and unveil twain Frankenstein-like surgically-created craniosynostosis scars. Permanently.} But God is gradually teaching me that we are all, as my phrase goes, Beautifully Unique!!