paradigm.shift. (part two).

Amber walks faster than most people jog. I tried to explain this to her one day as we walked around town. She had just been through a divorce, and she had lost her job. She was rightfully devastated and had moved back to our hometown. Even though it was for terrible reasons that she was so close again, selfishly I was happy to have her back. We hadn’t spent so much time together since high school.

However, I was close to useless in the comforting department. I had no advice to give her, no real world experience to pull from. The only thing I could think to say was that maybe going for a nice, invigorating run would help her shake out some anger and make her feel better. She laughed because she hates running. Also probably because I sounded like an idiot, but I didn’t know how to help. I just knew running sometimes made me feel better.

She of course, refused–Amber does not enjoy sweating–so, we went walking instead. Just to keep up with her I had to jog along beside her. How did she walk so damn fast and not want to break into a run? It physically hurt me to walk at the pace she kept. But, she plugged along, power-walking as I jogged next to her, wondering how we could be so different, yet so alike.

As I suspected would happen, Amber was back on her feet again before I knew it. She moved away from me (again). Not far–thirty minutes–but, I threw maybe a tiny little fit…(again). And soon she was in love and getting married, and we were back on track to becoming a sitcom-worthy set of twenty-somethings. We had both cleared some heavy obstacles, we had both succeeded and conquered. We had gotten through a combination of childbirths (mine), losses, a divorce, parents with health issues, lay-offs, more panic attacks than two people should really ever be allowed to have, and blending new families. And we weren’t in the nuthouse or jail, yet. Things were going to be ok.

I really do wish I could stop right there and let you all believe that’s exactly how it happened. A few bumps in the road, then clear skies. But, instead of spending our evenings recapping the names our husbands have bestowed upon our boobs over cocktails, Amber and I spend most of our time as of late catching up on our lives in the confines of a hospital room. A month ago, we were discussing our week while we tugged her twin boys in little red wagons around the second floor of a children’s hospital while I felt like shit for not being able to do this enough, and laughed about how fast she still walks.

Two years ago my cousin gave birth to two perfect, tiny, 34 gestational weeks old identical twin boys. A week later, they were being transported to a special unit in a local children’s hospital with ammonia levels in their bloodstream registering off the charts. It was discovered that they have a very rare disorder called Propionic Acidemia. (For more information, go here: http://www.pafoundation.com). They endured more medical procedures than I can remember (though Amber could give you a detailed description), while the rest of us did nothing but pray. Sometimes, that’s all you can do. I had come down with the first episode of strep throat I’ve ever had in my entire life, and I couldn’t go to the hospital as the boys lay in tiny chambers, hooked up to machines cleansing their blood of the toxic ammonia poisoning them. I couldn’t be in a hallway telling her it would be Ok. I could just go to my church, where a group called The Prayer Partners were meeting, and let them pray and listen to me cry, while I thought, This is nice, but it isn’t going to work. I had gathered what little information I could from my aunt and Amber. I had researched what I could going off what I knew. I had learned new words, new disorders. I was led to a few sites talking about metabolic disorders which could cause high ammonia levels in infants. None of it sounded good. None of it sounded curable by prayer. 

Don’t get me wrong, I’m all for praying. I do it often. And I have heard testimonies and sermons where everyone proclaims the power of prayer saved them, or resulted in some kind of miracle. I have listened to countless people declare that a desired outcome was possible through believing hard enough, or praying enough, or just doing all the right things enough, which really just means if your prayers weren’t answered, you must have been doing something wrong. (See previous blog post on my miracle ramblings here: http://stepone-denial.blogspot.com/) I realize people don’t say those things to be insensitive, but it is condescending and obnoxious to those of us who have been to the brink of desperation, out of our minds with prayerfulness and faith, only to be left wanting.

So, that day in March 2012, as I bawled helplessly for my family as they waited to see if the baby boys were going to make it, all I thought was… This isn’t fair. This isn’t fair. This isn’t fair. Over and over again. I was pissed as hell. Hadn’t our family been through enough? Hadn’t Amber been through enough? Why were some people so fucking lucky, while we kept stepping in land mine after land mine? Somewhere in the back of my mind I was aware that bad things weren’t just happening to Amber and her family. I had a vague sense of others’ suffering, but I was too angry to let those facts have time in the spotlight. I had no patience for rational thought. And the only miracle I could connect with the day, was how lucky it was that I was the one with strep throat despite never having it before, while Amber was healthy enough to be with her newborn babies, when ironically, she is the one who gets strep every single year (sometimes twice) without fail.

But, that miracle wasn’t enough. I wanted a real one. Weren’t we due for a real one?

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