Wednesday, December 12, 2007


I remember, as I was growing up, reading books about children who died of cancer at an early age. I was always saddened by the stories, but I think they gave me a good grasp of reality. It's so easy to read just what you want - ie. the good endings - and ignore what really might happen.
I've also had a closer brush with infant mortality that I care to have. When my dad was in Bible college in 1990-93, one of his younger classmates, Rene, got to know us kids (I was 5-8 during these years). She was out babysitter more than a few times - and we were thrilled for her when she announced she and her husband were expecting their first. At six months, Rene had a strange reaction to a food allergy and went into cardiac arrest (Ladies, please stay away from foods you know you are allergic to, especially while pregnant, you never know how you'll react). By the time the doctors stopped trying to revive Rene and save her unborn child, Jessica who was 6 months in utero had died too. Rene's husband Doug lost his beautiful wife and only child in the same few moments. This happened when I was 9. This was my first brush with death - and it was hard. It was my first funeral too.
A year or two later a woman in my church discovered she was expecting an anencephalic baby (the brain and skull don't grow beyond the eyebrows and the child dies quickly after birth). Their little girl Leah was born around 28 weeks, and died 6 minutes after. I was at her funeral with my parents. I was so heartbroken to look at such a tiny white casket and here as the mother's letter was read aloud. She said, "Don't say, 'You can have another one,' because I don't want another one - I wanted Leah!" Her words stayed in my head over the next 10 years - I never forgot them. I began to understand how heartbreaking it must be - but without the real knowledge.
I lost my great-grandmother at 13, and my grandfather at 16. We watched as our friends Seth and Tarah lost their beautiful son Gideon in January of 2006. I was so distraught for Tarah - I was 7 months pregnant at the time - and knew to some small measure how heartbroken I would be if I'd lost Oceana at that point. Last year our friend Rik died at the early age of 33 - with only 3 months warning. He had multiple melanoma and he passed into the arms of Jesus just 12 days before the birth of his second child. Earlier this year our friends announced that their son had made it to birth without being diagnosed with Trisomy 13! J.J. lived long enough (on life-support) for his father to be flown home from Iraq. I believe they had 6 days with him. Just a month later, I was pregnant.... and wondering what that Trisomy 13 "thing" was....
I've always wondered what my life would be like - if I would have a strange disease later in life, or if I would lose my husband (especially after Rik passed away), or if I would lose a child. I've had panic attacks linked to the idea that I was going to lose Oceana in the last year and a half.
But never in a million years would I have "dreamed" this up - an encephalocele. A neural tube defect. Truth be told I wasn't even aware of a neural tube defect until early on in this pregnancy. I was online at my mommas-babies internet group and a few ladies started talking about early testing - nuchal testing, amniocentesis - and I remember saying, "I won't do those tests, because it's not like I'll abort anyways." Wow... who knew that I was carrying a child that needed those tests to determine whether he'd live or die? (Just to shoot the air out of my pious balloon - I've had an amniocentesis done since then...)
All this to say - I've been around a fair bit of death, even early death - but I'm still in a numb reality. I was thinking last night about "Numb" and what it is. I mean, don't get me wrong, I can burst into tears about just about anything. In other words, yesterday I burst into tears because I wanted to get my room clean (nesting!) finally, and just minutes after I started cleaning and organizing my father decides (his house, not mine) that our ENTIRE room needs painting and that I need to get my husband to push everything in the middle and cover it with plastic. Two weeks ago, when they painted the living room they didn't even want me in the house - but when they paint my room (fumes) they didn't even give us a day's warning. We had to sleep on the living room floor last night because of the fumes (they're horrendous! it smells like a rotten animal in my room - something's wrong with that paint). So I spent a fair while crying my eyes out - because I "couldn't clean my room". Oh good grief. Obviously it's all linked to Joshua - but just presenting in other ways.
I also lost it over my daughter getting pen on her brand new shirt and oil or grass stains on her brand new pants. There I was swearing and ripping her pants off her in the backyard,because I'm so numb in regards to Joshua that I freak out about other unimportant things. Like grass stains.
Is that what "Numb" is? I can't figure it out. I wrote a bunch of stuff down last night about how I felt.... but I only got halfway down a page. Usually writing's not the hard part for me... but last night I couldn't even begin to think what to say. Is that "Numb"? I don't know. I'm not going to try and figure it all out - because everytime I figure something else out, it changes on me. I have no control. I'm probably a control-freak - so this whole scenario is beyond irritating - because I have NONE.

Thank you everyone for your kind comments, your emails, and your non-stupid remarks. I've heard a few over the last few months - and I'm so glad that at least here - on my blog - I escape the stupidness. "If he won't survive - why not just abort him?" "They can't stuff brain back in his head! He'll die!" "You can have more, you're young." Anyways. Don't get me started there.
- Xo - Susie

1 comment:

  1. Hi Susie, I just commented to an old posting earlier tonight, so it's me again... I have saved you to my "favorites" on my computer and silly me didn't realize that you have updated your blog. I was still stuck in November's postings; my computer took me back to an old page of your blog. I have had you on my mind since I found your story. I feel compelled to pour my heart out to you, but instead I'm usually the one who just writes "thinking of you." I have been through this diagnosis. I wanted you to know that although this is unheard of to most people (was to me too until 2006) it is something I know too much about. I just wanted to let you know that I check on you & pray for you. I will revisit your blog, and leave my simple message. Please know that what I really mean to say is that I sincerely care and that I am praying for your family.