Survivor's Guilt

"Why should I be spared when anybody else would?" --Robert Downey Jr.

 

{Taken from my Life Story!!}

 

Next, I Google-searched congenital diaphragmatic hernia Blogs. I repeat. This was huge for me. Revealing that I had been born with C.D.H. . Again, it was a cosmic leap toward self-acceptance!! Yes, a cosmic leap!! Tragically, the first two consecutive Web sites that I discovered were about children who passed away. Yes, passed away. One was an infant. The other a child. This yanked at my heartstrings, profoundly touching many conflicting emotions. They died because of medical complications which resulted from a birth defect that I survived. I survived. And, sadly, sweet children are still dying. When I delve into it, on a deeply psychological level, this fills my heart with immense survivor's guilt. Yes, survivor's guilt. Why? Because I am alive. They are not. But on the other hand? It also makes me ever more grateful for my life which was spared. Yes, ever more grateful. Because, by God's Amazing Grace, I am alive. Because of surgeons' skills, and 1980's medical technology, I am alive. And because I'm stubborn, plus "hard to kill", I am alive!!

 

What a huge, huge unshakable, twisted feeling. I oft wonder if any other survivors share these deep, deep, deep emotions with me....

 

My Blog gained a new Follower last week. For which I am grateful!! Her name is Shelly, and she had this Beautifully Unique grandson--named Jayden--who was born with a congenital diaphragmatic hernia. Yes, you read that correctly. Shelly had this Beautifully Unique grandson named Jayden who was born with a congenital diaphragmatic hernia. Tragically, he passed away. Jayden would have been--should have been--three years old by now. But, alas, he was born with my birth defect. And this precious little boy made the other fifty percentile. Confession. Although I can't evade the C.D.H. mortality statistic, I do, however, attempt to dodge Blogs and Websites written about such kids who didn't make it. Not because I am running from reality. Although, I'm very, very, very good at that!! But the emotions, feelings, plus psychological thoughts which would be involved, if I did reach out to still-grieving families. I mean. What have I to offer these Moms, Dads, Grandparents, Aunts, Uncles, Cousins, Friends? I am so very sorry for you loss.... But I'm pushin' 30 in January? I cannot offer them hope, because they already outlived a child. Well, yesterday, I left this comment, in an effort to thank Shelly for being my new Follower. I wrote these words. Shelly.... My throat is dry, and deep, deep, deep emotions are rushing through me like a river as these words are being written. I am so very, very sorry for your loss of sweet, precious, Beautifully Unique Jayden. A Kindred Spirit CDH Buddy, who, unlike me, did not survive. Such conflicting feelings are twisting through my head regarding Jayden not being alive. Feelings best kept from this comment box. Please accept my most heartfelt condolences. Thanks for following my Blog!! You are number 43!! --Raelyn. This was, perhaps, the hardest comment that I have ever written!! Actually. I know it was the hardest comment that I've ever written. And, although I haven't yet memorized every detail of our C.D.H. experience, it was not nearly as dramatic as most stories. {Funny. I could recite our craniosynostosis journey in my sleep!! It impacted Mom and Dad much more profoundly.} Let's see if I have this right. Doctors were unsure, exactly, of what was ailing my long, skinny, birth defected body. So. They watched me closely. It was the freakin' '80's, after all. They must have known very little about this life-threatening birth defect. Because I had the best doctors and hospital on this planet!! {Yes, I am a bit biased!! Deal with it!!} That's right. Doctors did not repair my C.D.H. immediately, as they should have. But I repeat. They must have known very little about this life-threatening birth defect. Eventually, my left lung collapsed. Oh. And my heart was enlarged. Oh. And my liver was displaced. Okay. After my lung collapsed, Doctor C. repaired the congenital diaphragmatic hernia. He stitched that hole right up. Dr. C. re-inflated my lung. {How, I would love to see!!} And he put that wanderlust liver in its correct location. There were zero complications, amazingly enough!! Doctors and nurses did not even put any narcotics into my system!! Is it no wonder that I tolerate pain? I do not think so!!  

 

"I shouldn't be alive... unless it was for a reason. I'm not crazy. I just finally know what I have to do. And I know in my heart that it's right." --Tony Stark

Oh, sweet, sweet Jayden. I dedicate this post in memory of every child who did not survive congenital diaphragmatic hernia. My birth defect. Your families know who you are.