me vs hell

I believe that when we die, we will either spend eternity with Jesus in Heaven, or in Hell. I believe that this final destination is not based on how well we perform here on earth, but based on repentance of our sins and acceptance of Jesus' gift of salvation. As a believer in Jesus, my eternity with Him is firmly and permanently settled. Here's something else that I believe- and this is based solely on my personal experience and my interpretation of the book of Job in the Bible- while we are on this earth, Satan will do his best to make it as close to hell as possible in order to draw us away from our eternal hope. Our lives here on earth may not be horrifically awful all the time. But as a Bible believing Christian, I do believe that my life here on earth is as close to hell as I will ever get.

By the time January of 2011 rolled around, Sam's eating habits had deteriorated. Looking back, it's possible that his constant vomiting had so damaged his esophagus that he was manifesting a psychological reaction to the physical trigger: drinking a bottle. I kept count of his wet diapers. I tried everything to get him to drink. I took advice. I tried organic all natural supplements. I tried elimination diets. I tried formulas; they elicited a worse reaction than the breastmilk. I tried putting cereal in his bottles. I tried a myriad of prescription pharmaceuticals- nothing worked. I resorted to force feeding. Squirt a little in his mouth while he screams, wait for him to swallow, repeat. Feeding him a bottle took a solid hour or more. Being a small baby, he still ate about 8 times a day. Doing the math, I was spending a good 8 hours a day trapped with him in his room or on the couch, crying while he screamed at me. This became my hell. My life was a living nightmare. My baby wouldn't eat. And he was hurting. No one could help me. His pediatrician didn't even believe me at first- until Sam started dropping weight. I exhausted every avenue that I could find. We saw pediatric GI doctors, did barium swallow studies, almost moved in to our pediatrician's office, asked everyone I knew that had a baby if they had any ideas. I googled and googled and googled. I read forums about reflux. I couldn't find anyone that was living with our complex bag of symptoms combined with Sam's surgical history and special needs. I was still pumping every three to four hours. I was exhausted. And then the Rage came.

When your baby looks like this, doctors don't readily believe that he has trouble eating.


I am Carrie. I am Firestarter. I have tasted madness and it is bitter. I never understood (before this) how anyone could shake a baby. My eyes were opened. It has to be one of the most frustrating things in the world: to try to feed a hungry baby that refuses to eat. My one motivation was Sam's health and keeping him off an IV but he refused to cooperate and JUST EAT. "Just swallow. Please. Just swallow. Please, Sam." I would plead with him and cry and my body would become tense and stiff while I held him and he fought me- rejecting the bottle that was full of health. He would scream and scream and arch his back and become ramrod rigid against me- and I would have to put my screaming baby down on the floor, close the door, and walk away. I had to walk away so that I wouldn't hurt him. I can't even admit it without crying in shame, but it's true. While he screamed on the floor, I would scream in my bedroom so loudly and deeply that I would become hoarse. There are times when it's best to walk away. When the rage consumes your body and you can feel it- like you've been hooked up to an IV filled with a hot liquid and it's coursing through your veins, filling your head with a buzzing, burning anger and tingling out through your fingertips. I felt like a cicada in the midst of shedding season- my outer self becoming hard and brittle and then suddenly splitting down the back to let my inner monster out. I was afraid of myself. I was so angry. For the most part, I was angry at myself. I couldn't escape the feeling that I was failing- that there must be something I was missing or doing wrong. I was incapable, insufficient, and inept. Why had God given me this baby when I was clearly not a fit mother? There are breastmilk stains all over our house; they are on the ceiling of my bedroom because I slammed a bottle down on my dresser so hard that it exploded, spraying milk all over the room. My kitchen utensil drawer is broken because I slammed it repeatedly over and over. There had to be an outlet- and there was none. So I slammed bottles and the occasional drawer and cried so hard I got headaches. The rage would consume me- and then it would drain from my body leaving me feeling limp, drained, empty, and so very unfit for my assignment. And I would go back to my baby, wipe his tears, clean his vomit, and try again. When your baby won't eat, when doctors give up, when well-meaning advice fails, when you are the only one that can succeed in getting your baby to drink enough to barely wet a diaper, when you sleep in 1.5 hour segments on a good night, when you are cracked and bleeding from pumping around the clock and no one understands: this is hard. And Molly needed me. The pressure was intense. I tried to get back into running a little bit. Running is normally a great form of stress relief for me. Just on the treadmill, when I had 15 minutes to spare. I felt guilty taking that much time for myself.

You're in the moment now
When all that you've been blessed with
Is not enough
Here's where the ground gets loose
Here's where the devils call your bluff

Stay strong
You are not lost
Come on and fix your eyes ahead
There's a new dawn to light our day
You've gotta stay strong
You and I run
For the prize that lies ahead
We've come too far to lose our way.....

We've come through wilderness and watched
The cloud by day
The burning sky into dawn
Have you forgotten who you are?
Did you forget Whose trip you're on?
Get up, there's further to go
Get up, there's more to be done
Get up, this witness is sure
Get up, this race can be won
This race can be won

This race can be won                                     <-----------insert optional fist pump here

We've gotta stay strong
You are not lost
Come on and fix your eyes ahead
Our Father's dawn will light our day
Come on and stay strong
His grip is sure
And His patience still endures
There'll be no letting go today, no way

                   Excerpts from:   Stay Strong by Newsboys from their album, Greatest Hits

I have lost who I am. Where are You, Lord? I've heard there are rocks at the bottom of this pit- why haven't I hit them yet? It's so dark here in my darkness. It's so lonely here. So lonely.

In March, Sam started shaking. First it was just his head, then it progressed to include his whole body. After he ate, he would be consumed with mild seizure-like activity and I would hold him tight while he shook. This deeply concerned me. At a swallow study we did at a local hospital, I was told that this sounded like Sandifer's Syndrome, which is usually brought on by a GI disorder. He was in so much discomfort. I tried slow flow, medium flow and fast flow bottle nipples. I tried Soothie bottles, Tommee Tippee, Playtex Ventaire, Playtex with the bag, Dr. Brown's and Medela. I tried Mylicon drops and Colic Calm. The only thing we didn't try was Reglan. Reglan is known to completely halt motor skill developement and I wanted to avoid afflicting Sam with that side effect if at all possible. He had enough challenges to overcome.

I wanted to die. But I was acutely aware that suicide would be the most selfish decision I could make. It was painfully clear that my baby wouldn't eat for anyone but me, and barely that. I couldn't inflict so much confusion and abandonment on my daughter. This sweet baby that couldn't help his behavior, this sweet baby that was clearly experiencing a lot of unexplained discomfort: this baby had changed my life. I was isolated and surrounded by a dark madness. Eventually there came tiny pinpricks of light. I had a breakthrough of sorts with Sam. He would drink, as long as I fed him while he was sleeping. If I could just get him to sleep, he would drink and drink and I loved it. He drank without screaming, and if I rocked him and held him upright long enough afterwards, sometimes he'd keep it all down. It was a mystery why this worked. I found just a couple of accounts in online forums about babies with severe reflux that sleep-ate. Our pediatrician finally conceded that we had a problem, but only after she tried to feed him herself. He was clearly hungry, but as soon as the liquid touched his mouth, he squirmed away and screamed as if she were offering him hot lava. We began our journey into feeding therapy. We went once a week for four weeks. At the end of four weeks, our very sweet therapist told me that she couldn't help us, that I was already doing more for him at home than she could do for him. "Keep up the good work! Please let us know how he's doing! Good luck!" I sat in my van in the parking lot after that appointment and sobbed my heart out. They gave up on him and they gave up on the prospect of things getting better.

This is IT? This is as good as it's going to get? No answers? I don't have the energy to keep trying...
Running, running, but the darkness is chasing me. I feel it breathing down my neck. Still falling and this hole is bottomless...

Our pediatrician suspected eosinophilic esophagitis. So she prescribed an inhaled steroid, even though we had no proof or a definite diagnosis. I struggled with whether or not to medicate my child with steroids when we weren't sure if they were needed. My baby was not a science project. I decided against the steroids.

We traveled to UNC for another visit with pediatric GI. Another barium swallow study, but this time they did a biopsy of his esophagus to check for eosinophilic esophagitis. We stood in front of Sam and watched the big screen that showed his esophagus. We listened while the doctor showed us that there was nothing physiologically wrong with Sam's esophagus. We heard the doctor say that Sam could have scar tissue that we couldn't see- that it was possible that while his chest was open, his esophagus had been barely touched causing nerve damage, but that there was no way to medically know this for sure. Our best bet would be to switch him from breastmilk to something more elemental, something easier for his body to break down, something to relieve some of the symptoms of his reflux and ease his psychological reaction to eating. When he was 10 months old, I pulled him off the breastmilk and tried nutrition in a can. I tried several over the counter formulas without success. Our pediatrician gave us some samples of a medical grade sterile formula for children with severe eating issues... and I saw a slight improvement. Not much, but enough to warrant switching Sam over to it completely. Now that Sam wasn't drinking breastmilk anymore, I could stop pumping.

Right. And how, exactly, does one go about that?