The first time a physical therapist showed up on my door step to evaluate Christina for services, I’m fairly certain I was as warm and welcoming as glacier ice several miles thick in January. She had worked with special needs kids for blah blah…and at that point, I was lost and gone. I did not have a special needs kid. I had a developmentally delayed premature baby. Get it right lady. Out came the check list. Was Christina able to do this, this, this, this, or this? No, no, no, no, and no. What did that prove anyway?? Clearly, there really was no extensive problem here. The therapist wisely ignored me, and proceeded with the whole business as if she didn’t notice my freezing lack of enthusiasm. When Christina was somewhere around a year old, I finally floated back down to the good old reality of Earth, and was ready … Continue reading →
It was somewhere between three months and seven and a half months into Christiana’s short, but dramatic life that I remember dully listening to another mom gushing about her daughter. Words meant to be encouraging landed like slaps to my heart. “We just had a lot of faith,” she said. “We prayed, and prayed, and our daughter made it home with no ventilator, and is so much better than they ever thought she would be. You just have to have faith.” I remember smiling politely and walking away. Have faith echoed from my footsteps down the hospital hall. It chuckled mirthlessly in the silent elevator. It jeered at me from the back seat of the car driving home. We had faith. We prayed. And then we picked our in home nursing care, installed electrical outlets for a ventilator, learned to change a trach, and memorized emergency procedures for keeping a baby … Continue reading →
I don’t have anything new to write about. No really, I don’t. I have fought and fought in my mind about this blog, about writing, about whatever happened to that women five years ago who painted furniture while two healthy little girls napped, and blogged pictures to amuse invisible friends in cyber space. I have always thought the day I got my first glimpse of my squirrel sized premature third daughter, was the day the door to my former life snapped shut and sealed itself impenetrably. There was no going back to the “shall we have taco’s for dinner or go out” life of luxury style problems. Her birth pealed a layer away to a deeper view of life that once seen, can never be unseen. As if a door to another world had opened and swallows us, we found ourselves lost in a maze of terrifying scenery. … Continue reading →
The fact is, it has been one year already. What are facts when the mind seems to refuse to absorb them. The mind says that one year has lasted several lifetimes, yet it started only a second ago. What does the mind know anyway. The mind plays tricks. Yesterday it could remember exactly the feel of wispy blond hair, as soft as feather down, remember it sticking to the clothes and floating away in the air as chemo spread its poison. Today the mind remembers nothing, it only says to hurry. Hurry, clean the house, leave nothing undone. Hurry, and get ready for the phone call that will rush us to the hospital. That is a nasty trick, there is no phone call. Tomorrow the mind will laugh. It will laugh at the absurdity of anything seeming important or significant. What could possibly be important? No one is dying today … Continue reading →
Dear Senator, Thank you for your hard work and personal dedication serving our country. I am looking forward to the day when your voting record reflects the confidence you have in the courage of Americans, specifically women. I am writing to request one thing, please stop using my children as your excuse not to do this. Your recent failure to pass H.R. 36, the Pain-Capable Unborn Child Protection Act, was a tremendous disappointment to a great number of American women. I am a mom of four children, two of whom belong to America’s finest group of endangered species…babies who have had a very poor prenatal diagnosis. It is these medically complex situations that are often pointed to as one main reason, among others, that we continue to withhold legal protection for the smallest heartbeats of America’s future. By voting down this bill, you have told me, a women experienced in … Continue reading →
I barely noticed the line of cars to my right as I swept by, flashers blinking rhythmically, speedometer reading 90 miles an hour. Yes, I was speeding. No, I did not care. How many times had I done this? Peering into the black night. Wishing the miles to go faster. The pounding question.” Will Jed die today? Will I get there in time to say goodbye?” Evil does not play nice. It will squeeze the soul with fear, it will shriek its mocking questions, and it will kill a little boy. Of all the things to hit my mind at such a time, God sent this phrase to my heart from Psalm 23, “I will fear no evil”. It was almost absurd. I wanted to crash through the line of traffic when we screeched to a dead stop on the interstate, I wanted to scream at everyone to get out … Continue reading →
Jedediah “Jed” Lewis Feistel, 2 years old, ran through the gates of Heaven on Sunday, October 8, 2017. (Click the picture link below to see video) (Parent’s tribute to Jed read at his funeral) Abby: It seems a little unfair to me to let you assume that Rich and I were the main players in Jed’s life. Both Jed and Christina have had teams of medical people who not only saved their lives on multiple occasions, but who have poured their hearts into our babies. You are so special to us, thank you. Rich: The first time I saw Jed he had about five sets of hands all over him, you could just catch a glimpse of him every once in a while. The poor little guy was trying so hard to breath. The first few minutes were intense. Jed turned blue as soon as the umbilical cord was cut … Continue reading →
Clink, clank, clunk. One dollar and ten cents earns me a solid two hundred calories worth of almonds at the rest area vending machine on the side of I-95 half way between Jed’s hospital and my home. If I eat them ponderously, one at a time, this enough to keep me awake for the remaining 76 miles to home. Words fail to express the thorough disgust dripping from my stare that reflects back to me in the vending machine glass door as the blue bag of almonds dangle in midair, provokingly refusing to fall. The only thing worse than an uncooperative falling bag of almonds, is the insolence of a machine that plunks the wrong item down into the tray. Dear machine, we had a deal, I put in the money. You give me what I want. You flubbed. Try harder next time. Thanks. My phone dinged, and the text … Continue reading →
There is a certain member of this family, who, for the duration of his almost two year old life, clearly has demonstrated a moral objection to predictability or monotony in any way. He was not expected to survive past birth, and he did. He should not have made it through his first year, and he did. He should not have made it through a recent four month stint home on hospice with liver cancer, and he did. I don’t know what choice one has with such a child except to let him have his own way, and try again to do what we know to do to help his little body become healthy(ish). I am completely grateful for, and deeply admire his tenacity, although I personally feel that he may have used his “youngest of the family rights to be dramatic” a little liberally. Do you suppose it is his … Continue reading →
It was, by far, the longest August day ever recorded, the day our Christina rolled off to the operating room to get her tracheotomy tube and feeding tube placed. I had been dreading it for weeks, the weather was dismal, the plastic vinyl chairs were hard and squeaky, and the surgery more or less took several eternities. Or so it seemed. When the surgery team wheeled her back into her room, there was the usual post procedure hive of activity. People darting here and there, reconnecting monitors, getting vitals, passing off information to each other, someone’s face in front of mine telling me how great the whole show had gone. I’m sure we said the usual appropriate things. My first glimpse over someone’s shoulder of my newly improved child did not leave me feeling charmed. I was in fact, thoroughly and completely horrified to put it bluntly. Of course I … Continue reading →
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Welcome to chapter37! I'm Abby, the face behind the blog, and I'm so glad you are here! I call myself mom to four beautiful stories being written...two typical girls full of sparkles and giggles, one former preemie winning her battles one at a time, and a little man living life with gusto despite kidney failure and liver cancer. I write about the kids, the house, and all the mess in between. I hold the opinion that anything in life can be handled with God, a paint brush and a healthy sense of humor!