In Gratitude…

On the heels of our American Thanksgiving Day, the day we celebrate what we are most grateful for – friends, family, abundance of all things that sustain and nourish us – to this I add one more thing.  I am most thankful for my very own commitment to myself, the voice of my deepest Self that I understand, now more than ever, to be the only guide I could ever need in this life.  You may call it the voice of god,  the voice of intuition, the voice of spirit.  For me, it is best to leave it nameless.  But following it has brought me to this most important, most powerful, most satisfied position in my entire life.

Twenty years ago I remember gathering for a Thanksgiving feast with such a heavy heart.  I lived with so much fear.  My daughter, then such a tiny little girl, was asleep in my lap late in the evening as I watched over her like a hawk.  She had just been released from the hospital after having had a horrible status seizure in the middle of the night a couple of days before.  She was drugged up on such a large dose of anticonvulsant medication that she was comatose for the better part of two days.  As she came back to consciousness, she could no longer walk or talk as her normal four-year-old self.  She was crawling, confused, and lethargic.  I didn’t know if it was the seizure that had caused more brain injury or the cortical-suppressing side effects of the medication.  Either way, it was heartbreaking and horrifying.

That was the weekend that I read the book, “What to do About Your Brain Injured Child” by Glenn Doman cover to cover.  The whole thing.  As Haylie slept in my lap, I earmarked page after page and slowly the terror left me.  Terror for her future, for my future, began to dissipate and what slowly seeped in to take its place was a feeling of relief and excitement.  This book made sense to me.  And it helped my daughter make sense to me.  It was liberating and hopeful.  It was the beginning of a new era of my life, an era that has lead me to my now.  My now moment as a healthy woman with a healthy, capable, passionate daughter asleep in the next room with an agenda for changing the world in her own inspiring and powerful ways.

Tonight, I am a content woman with a powerful voice who feels so proud of herself for marching down this long, long road – sometimes with a lot of help, sometimes very alone.  And, I did it.  I am so deeply grateful that I had the courage, the fortitude, the persistence, and the insight to follow this path.  I followed it even when people I loved and respected and thought I needed criticized me for it.  I did it when they said I was crazy.  I did it when they said I was wrong.  I did it while they rolled their eyes and talked about me behind my back.  I did it when it was fun and the progress was clear.  I did it when it was fucking hard and I was groping in the dark.  I did it anyway.  I followed that inner voice.  And that, tonight, is what I am most profoundly grateful for in this life of mine.  That is something that can never, ever be taken from me.  It is the thing I intend to serve the world with now.


So, let me say this: to the mamas and papas out there who have hurt kids, I know how much it hurts your heart when your kids are not ok, when they are not as you want them to be.  And I know how much it hurts to feel alone in that, when the people around you just don’t understand.  But you must never give up.  You must never lose hope.  I say this as much to you as I say it to my past self, sitting alone and afraid on a couch that night two decades ago, wishing I had something more to be thankful for.  You can do this hard thing.  Believe in yourself and believe in your child.  Believe in your inner voice to guide you there, to the dreams that are alive and waiting for you.  And, be thankful for this gift.  The one that shows you what you are really made of, after all.


P.S.  I am also very thankful for you, my readers.  Thank you for following me and supporting me and asking about my book.  Thank you for sharing your stories with me.  I look forward to sharing more of our story with you in the hopes that it help and inspire as many people as possible to dare, not only to dream, but to put one foot in front of the other in pursuit of that dream.  If you know a family that would benefit from this information, would you be so kind and generous as to share this blog with them?  Let’s work together to spread this important information: brain injured kids can get well.


Happy Thanksgiving,


That ambulance went screaming away into the night…

Recall that Haylie came down with spinal meningitis at just twelve days old and was rushed away to Riley Children’s Hospital in the middle of the night to try and save her life.  The ambulance driver had distinctly told my stepdad not to try to keep up with him.  He advised John to follow the speed limit, and to check in at the emergency room when we got there.  The young doctor promised us that he would do his best, but really, he made us no promises.  Haylie’s condition was bad.  I knew it.  Everyone knew it.

It was a long, quiet drive up State Road 37 in the dark.  We had to stop once for John to get some coffee and for me to pee (I’m still known for having the smallest bladder in my family).  I bought a small package of peanuts and ate them slowly in the backseat of the car, sucking the salt all the way off of each one before biting into it.  I washed them down with a diet coke.  What the heck, I thought, she’s not even drinking my breast milk now anyway.  I had become hyperaware of the effect that my food consumption had on Haylie’s digestion, and on subsequent diaper contents.  When I ate broccoli, it gave her gas every time.  I was not taking any chances with the caffeine.  Well, not until now.

As we got closer to our destination, in downtown Indianapolis, the city lights twinkled up around us.  I looked out the window, wondering what other people were doing awake at this time of night, thinking I had seen way too many of the wee hours these last two weeks.  Haylie would be two weeks old tomorrow.  Then my focus shifted from the lights on the buildings in the distance to my own reflection in the dark window.  I looked much the same on the outside.  My eyes were puffy though, and my long hair was escaping its shabby updo, falling out around my face and neck in unruly wisps.  The deeper changes occurring were not yet visible.

By the time we found her, Haylie was quarantined in the Newborn Intensive Care Unit in critical condition.  We had to put on big yellow paper ponchos and masks to be allowed in to see her.  She had been given a large “bolus” dose of Phenobarbital to stop her status seizing and was completely unconscious, lying flat on her back, tubes and wires coming out of everywhere.  I spent most of the night alone in that room with her, sitting in a chair in the corner.  She looked so small and helpless now, and somehow I knew this was all out of my hands.  Rubbing the single white newborn sock I had found in my pocket like a talisman, I got real with myself.

The truth was that I hadn’t felt ready to become a mother – not now, not like this.  I had never admitted to anyone how scared shitless I was about this whole thing.  How disappointed I was with myself.  How much I missed my guitar-playing, window-tapping, movie-watching guy and carefree nights on a rooftop.  How I felt that whole parts of my future life and possibilities had simply collapsed in front of me, where the entrance to the tunnel of Single Motherhood simultaneously opened.  Perhaps this was a gift.  Perhaps I was about to be relieved of this responsibility bestowed too much, too soon.  And I felt guilty for feeling that way.  Maybe I was being punished for feeling that way.

I’m sorry, I said.  I’m sorry I didn’t really want you.

But that wasn’t completely true either.  Here I was, a Mother.  The transformation had already happened.  I absolutely loved this little being with every cell in me.  She came from me.  I made her.  It was done and it was beautiful.  And whatever happened now, she was a part of me.  Literally.  The research shows that fetal cells continue to circulate in the mother’s system for years after birth.  There was no going back, and I didn’t want to anyway.

So, I did what any sleep deprived young mother would do in the middle of the night in the Newborn ICU.  I had a long talk with God.  I came clean about my ambivalence about becoming a mother.  I confessed all the mixed feelings I had been so ashamed to have.  I confessed my thoughts about trying to somehow get out of it and, now, my total change of heart.  I promised that if I could just keep her and have the chance to love her with my whole heart, that I would do anything, anything at all.  Please, God, just let me keep her.  I love her so.  I chose twice to become a mother – once when I found out about the pregnancy and decided to go through with it, and again that night in the hospital when I made that deal with her and God to be all in.

Sometime the next afternoon, the White Coats tracked me down in the long corridor outside the NICU.  I remember the conversation so distinctly.  My mom and John were there as well as one of his sisters – I remember because at the words “brain damage,” she gasped just a little and grabbed my mom’s hand.  Some of the other words were “epilepsy,” “learning disabilities,” “visual problems,” “motor problems,” “cerebral palsy.”  My mom asked a lot of questions.  They replied with a lot of, “We just don’t know’s.”  I stood very still and listened with my whole body.  I even listened with my knees.  This was all happening on the surface, like waves.  It was a very wavy moment.  And at a deeper level, was a strange stillness.  All I knew was that something was happening.

 The infection had caused the lining of Haylie’s brain to swell so much that it broke blood vessels all over the place.  There were several areas of profuse bleeding on her brain that they could see with the CT scan, and I remember the taller doctor pointing to his own head to demonstrate.  Occipital Lobe (in the back), Temporal lobes (on the sides), and Frontal lobe (now tapping on his own forehead).  The good news was that, at this point, she seemed to be mostly out of danger.  In other words, she wasn’t going to die.  But she was going to stay in the hospital for at least a couple of weeks.  There was the course of antibiotics to finish, first of all, and she would be going through some testing to see how what was left of her brain was functioning.  There were still many unknowns.  Still no promises.

When my mom and John left that evening to head back home to Bloomington, he stuck fifty dollars in my hand and reminded me to get something to eat.  I hugged them goodbye at the front doors of the hospital, popped in the cafeteria to grab a chocolate chip cookie, and made my way up the elevator, alone, to spend another night in a hospital chair.


Haylie sofaToday, I sit here at my computer as rain soaks the whole grey world outside, watching Facebook for likes to my most recent blog post and watching the numbers on my WordPress stats rise.  Wow, I’ve just been read in Ireland.  And Romania.  Technology is amazing.  I have time for social media stalking on this soggy morning because the young woman who I usually study geometry with at this time of day, my daughter Haylie, is sound asleep on the couch with our beloved four-legged furry on guard next to her.

She is sleeping off a seizure hangover.


When I wrote the introduction to my book, nearly four years ago now (read it here), I wrote that Haylie was seizure-free.  That was the truth.  At that time, she had not had a seizure for more than six years and I had almost completely forgotten about the last one that she had had.  To think of it still gives me shivers.

She was about eleven years old at the time.  It was early in the morning, and I awoke from a strange dream that Haylie was being slowly covered with water. I could hear the steady echoing trickle of it filling whatever strange dream-vessel she was floating in.  But then, she began to sink and her face was becoming completely covered, air bubbles escaping out of her nose.  I rose right up out of bed and instinctively went straight into her room to check on her, only to find her in the midst of a seizure.  She was facing the wall, her hands and arms clenched up tight to her chest, face pulled tight into a grimace as she rocked violently in her bed with rhythmic muscular contractions.

I knew what to do.  I grabbed a reflex mask and pulled it over her head, putting it into place over her nose and drooling mouth, first giving a quick wipe with the pillow case to her sticky wet face which was puddled up in her own saliva.  At this point, her breathing was so shallow that the mask didn’t move at all.  But within a few seconds, it began to fill with her own exhaled carbon dioxide that she would now re-breathe, causing the blood vessels in her brain to dilate and receive more blood supply, carrying much-needed oxygen and nutrients.  Within a few more seconds, the violent seizing stopped and she became flaccid and restless.  Long arms and legs flailing about, long dark hair framing a face that was now relaxed and beginning to mumble.  After a few more masks, her breathing became full and deep and her color returned from pale to pink.

I needed to continue the masking regime to fully bring her back to her normal self, but first I had to pee.  Knowing that she wasn’t in any danger, I left her there wriggling in her pink floral sheets, breathing more deeply now, neurons coming back online slowly and surely.  From my seat on the toilet, I could see across the hall into her room, and I could see her beginning to stir even more, trying to get up into a sitting position.

As I realized, it being first thing in the morning after all, and I am very regular, that I had to do more than pee, I called out to her, “Haylie, just lie still.  Stay right there, honey.”  She kept up the fight against gravity, however, and got herself upright in the bed.  As my bowels began to move I was seriously caught between one kind of emergency and another.  I mean what could I do?  She was getting up and I could not, not just yet.

“Haylie,” I called out, sounding comforting at first but my voice getting sterner now, “you stay right there.  Do not get up.  Stay put.”  My pleas turned into commands as I tried to finish on the toilet, and I looked up to see her struggling to stand up and take a first wobbly step.  After a seizure, it always took a while for all the neurons in her cortex to connect properly again, and her speech and mobility, being cortical functions after all, were the most affected.

“Oh no no no no no, honey!  Oh no just stay right there!”  Her balance was unsteady.  She stumbled like a bad drunk, first forward and then a little sideways, throwing her arms up for balance, but they weren’t taking orders so well from her cortex right now either.  Oh shit.  Literally.

Just as I was done and grabbed my pajama bottoms up so I wouldn’t trip and fall, I dashed for her as she was getting close to the doorway of her bedroom on rubber legs, teetering this way and that, teasing gravity with her long lanky, growing body.  I was too late.  It happened all too fast and in slow motion at the same time.  Gravity won.  She fell like the leaning tower of Pisa straight over into the doorjamb, hands coming up to her rescue a couple of beats too late.  She smashed face-first into the trim, her forehead making a sickening thwuck as it met with the unyielding wood.  Down she went, still no help from the hands, into an awkward linear lump onto the floor, just as I reached her.

So, that went down in my memory as “the last seizure she ever had.”  I never actually thought that I would ever tell another single living soul that story.  It’s simultaneously hilarious and horrifying.  Mostly horrifying.  The image of her smashing face-first into the wall haunted me for a long time.  I had big time Mom Guilt for that one.  Luckily, aside from a pretty good knot on her forehead, she was not seriously injured.  Some people do get hurt when they have seizures, but that is something that I never really had to worry about.  You see, Haylie’s seizures always happened in her sleep – either as she fell asleep or as she emerged from it.  That has always been the case for her.  Every single time, without exception.

Back in the early days, her seizures were strange and hard to identify.  We even sat in a pediatrician’s office one morning with little toddler Haylie non-responsive on my lap, her head turning eerily too far to one side, eyes at such an angle that they almost disappeared into her head, tongue making a repeated smacking sound.  The doctor did not know what to make of it.  She wasn’t even sure if it was a seizure.  This was the leading epilepsy specialist in these parts at the time.  Her solution was to increase Haylie’s medications and add a new one.  Little did I know at the time that it was the cortical-suppressing nature of these drugs that actually made the seizures so bizarre and long-lasting.

Once Haylie was under the care of The Institutes for the Achievement of Human Potential, and we finally got her weaned off of all of the anticonvulsant medications, her seizures became much bigger and more effective, and therefore much shorter and much less frequent.  You see, a seizure is a life-saving mechanism designed by nature to accomplish something very important to the brain – acquiring enough oxygen for cell survival.  You’re going to hear a lot more about this from me in posts to come.

In the meantime, suffice it to say that I am no longer afraid of my daughter having a seizure.  I understand what is at the root of them and she understands how to live in such a way that makes them unnecessary and, therefore, very unlikely.

But, this morning was a rare exception.  I walked past her room after she had just gotten up and noticed that she was wrestling with a pair of pajama pants.  She was putting them on over top of her pajama pants.  Yep.  It was like her normal morning dressing routine but with a kooky twist.

I poked my head in the doorway and chirped, “Whatcha doin?”  She looked up at me like I had three eyeballs and had just asked the most ridiculous question she had ever heard.

Her glare replied, “What does it look like I’m doing, you idiot?” but when she opened her mouth what came out was like, “Whur whor wa wa ba ma suh,” in that all-Haylie seriousness.

Oh my.  I went in closer to get a better look, or listen, or something.

“Honey, why are you putting on more pajamas?  Over your pajamas?”

Again, she shot me the “mind your own business, mom” look but again she murmured something completely unintelligible.

Yikes, I thought.  This is so weird.  That is exactly what she sounds like when she’s postictal (just after a seizure).

Oh my!  She is postictal.  She must have just had a seizure before she woke up!

She gave me a serious “why-are-you-so stupid” look when I handed her the reflex mask but, with only minor incoherent grumbling, she took it from me and put it on without much trouble and reached for the timer on her cell phone, which she did struggle with.  She was setting the alarm instead of the stopwatch and was pissy that it wasn’t doing what it should.  So, I took over and sat with her through the seizure masking protocol we had learned from IAHP.  Within a few minutes she was back to her old self and could remember what day it was, understood the timer, her speech was clear and coherent, and her mood was much improved.  Suddenly, I was no longer such an asshole but a comrade again.

As is typical when a seizure happens in the morning, she lasted long enough to eat some breakfast, but soon enough the headache, nausea, and lethargy became too much and in no time she was back on the sofa, falling asleep.  Seizures come and go very quickly for her these days, if they come at all (which is related to her hormone cycle, nutrition, exercise, sleep, and stress), but they do still leave her with what we lovingly refer to as a “hangover.”  She slept for most of the day and was very quiet and introverted when she was up, preferring solitude and no focused activities whatsoever.

Tomorrow I expect her to be back to her normal bouncy self, ready and raring to go on geometry first thing in the morning.  It’s funny, you know I used to be able to predict when she would have a seizure.  I could feel them coming in her behavior and, like thunderstorms, in the fall of the barometric pressure.  But not today.  It was a total surprise, which makes me realize just how much she has matured neurologically.

And, having been on constant alert, I almost always heard them.   But again, not today.  That makes me realize how much things have changed for me as a mom.  These last several years we are far more like roommates than parent/child.  She is an adult, after all.  In many ways, she takes good care of me now.

Anyway, regarding the seizures, when I heard a bump in the night a couple of years ago and went in to find Haylie on the floor, wedged between her bed and desk, in the midst of a grand mal, I realized that my toilet panic morning, lo those many years ago, was not the last seizure I had ever seen.  Dammit.  And so, I stopped writing for a while.  I thought that without that victory of her being forever-more seizure-free, that I didn’t have a story to tell.

Maybe I should just keep quiet.

But no, now I don’t think so.  Now more than ever, I feel it is important to put our story out there.  To tell people how she manages to be healthy and happy and successful and mostly seizure-free without being medicated.  Neither of us is afraid enough of a seizure to want her to go back on those horrible medications with their insidious side-effects.  You see, it’s hard to be afraid of something that you understand.  Seizures sure can look scary, but they are simply a message from the brain.  The brain is doing its best to get what it needs and if we want to eliminate seizures, then we need to eliminate the brain’s need for them.  It really is that simple.  It all goes back to treating the cause.

But now, before I get too carried away with this, you might be wondering, “So, how did all this happen?” and I promise to finish telling you.  Remember, Haylie came down with spinal meningitis at just twelve days old and was rushed away to Riley Children’s Hospital in the middle of the night to try and save her life…

Pausing to reflect…

As that ambulance raced away into the night with my tiny, sick, unconscious daughter in it, the daughter that had still been inside me just twelve days before, I was as present as I have ever been in my entire life.  I felt the emptiness of my warm hands that had passed my baby on to complete and utter strangers in the dark of a humid August night.  I felt the concrete firmness of a hospital sidewalk, so seemingly solid underneath my feet.  I felt the tears drying up on my face, leaving the skin of my cheeks taught and my tongue salty.  That moment, so many years ago now, lives on in me.  It makes strange, eloquent reappearance in other moments, like when I am sitting next to my grown daughter in her now strong, healthy, vibrant woman’s body and I hear her laugh.  I become suddenly and completely filled with gratitude and an overwhelming sense of timelessness, an acute awareness of the gift of her, the gift of each moment with her and that they are like a long silk ribbon, not stretched out, but rather gathered up in overlapping folds and a needle pushes through them all at once.  I am suddenly present with layers of moments and, simultaneously, I can feel them all.

Like today.  Today I went with Haylie to the Indiana University Kelley School of Business to meet with her idol and mentor (through a series of online videos that she watches religiously), the well-known, wise, successful Dr. K, chairman of the Johnson Center for Entrepreneurship and Innovation.  Needless to say, she was star-struck.  Haylie’s dream is to study in his program and to change the world through paradigm-shifting work in the health care industry.  She plans to revolutionize the way geriatric patients receive care.  She wants to employ the same methods that allowed her to heal from her brain-injury with Alzhemiers and Dementia patients to help them heal their brains.  The fortuitous turn of events that led her here, on this bright May day, are long and involved but she met the right person at the right time and secured herself an hour in this man’s busy schedule.

She was literally floating through the glass doors of his suite as I followed her with amusement.  As she reached out her hand to shake his, and smiled so sincerely as she looked into his eyes, happiness literally oozed out of her, filling the room and its glass walls with a radiance that made tears come all the way up into the back of my eyeballs.  As she sat and visited with this man, who has revolutionized the way she sees her path in life and the way she handles the obstacles she meets upon it, he seemed every bit as genuinely delighted as she was to be having this friendly conversation about paradigms and questioning minds and leaning into possibilities.  His battle cry is “the next small step” and my daughter really resonates with it.  As he steadily explained his philosophy, which she was already well familiar with, about the importance of having a big shining dream out in front of you, calling you forward, but focusing on just the next small step, I thought to myself: buddy, you have no idea how right you are.  small steps.  creeping, crawling, patterning, masking, brachiating, running, biking, swimming, day in and day out. so many small steps that have added up to her being capable of sitting here in this moment, in this way.

And as I sat next to her, so enchanted with this human being who is so gloriously alive with futures swimming out in rippling circles widening all around her, I felt that I was as present as I have ever been in my entire life.  I am the head of a needle pushing through silk, feeling another moment added into the folds of this ribbon of life.

Looking back on that night when Haylie was transferred to Riley Children’s Hospital and the kind, dark-skinned ambulance doctor told me that he didn’t know if she would even survive the journey but that he would certainly do his best, I can now see so clearly how my daughter’s purpose was already in place – her determination, passion, drive were already there within her.  And although I was quite emotional in the face of that “tragedy,” I cannot say that I was afraid.  People say to me, “Oh, how terrified you must have been!” and my own mother would later lament, “I just don’t know what would have become of you if she hadn’t made it!”  But to be completely honest, I actually never even considered that.

Something was happening.

Something very important and poignant was happening to me.  My life was being transformed in a way that has taken me a long time to understand.

This is the story of that transformation, mine.  And, it is also the story of how I have simply been the doorway for a beautiful, powerful being to come into this world, a being who brings changes that so many will benefit from and, in fact, already have.  She does not know, yet, exactly what shape her future will take, but she has some ideas, she has a dream.  She has a fierce loyalty to that dream and to the seedling place within her from which it comes.  She has an infectious enthusiasm and a laugh that can light a room on fire, like it did today.  And, she has a strong sense of purpose.  This girl came here for a reason and I’m tellin ya, she ain’t messin’ around.


Haylie & Dr. K

I think that I’m beginning to find my gifts.  I have lots of them.  I also agree that the purpose is to give them away.  Not because we have to in order to fit in but because it feels good and is fun to give.”    ~Haylie Anna Hawxhurst, May 16, 2016

From Bad to Worse (a book excerpt)…

So again, all day Thursday, I sat next to that incubator with my hands in the space portals to stroke her head full of black hair and pat her diapered bottom, watching my daughter sleep.  She was sleeping now.  The Phenobarbital had knocked her out and was apparently doing its job of stopping the seizures.  I watched her tiny little bare chest, all polka-dotted with leads attached to multi-colored wires, barely rise and fall.  I listened to the steady beeping of the monitor and watched the green zigzag of her heartbeat bounce across the screen.

At some point, someone brought me lunch (my favorite, a Wendy’s chicken sandwich)  and I accepted the nurse’s offer to take a quick shower.  I was a funky mess.  Not far down the hallway was a small shower room, well, shower closet would be more accurate.  It was private, if not a little creepy.  But it was clean and tiled and I had my sample-sized soap in a wrapper and a thin, white hospital towel.  My mom was with the baby, doing her Grammy thing, and I took a few minutes to take care of myself.

I undressed and stepped into the stall and the stream of warm water, being careful not to get my hair wet, and pulled the green plastic curtain closed.  I didn’t really know how, but I knew I had to express some of the milk that had built up over the last couple of days of not nursing.  The pressure and the weight of it were killing me, and I was super paranoid that my body would stop making milk too soon.  So, I pressed and squeezed and somehow found a rhythm that actually worked to make thin streams of white spray from my nipple into the shower water raining down from the rickety faucet above.

Ok, now for the other side.

I emerged feeling better and a little more relaxed.  I redid the ratty bun on top of my head, traded out my pajama top for a clean shirt, and headed back down to the room where my mom and my daughter were passing the late afternoon together, under the watchful eye of the nurses.  Every so often, they would come in with a little vial of something and feed it into the pump that was flowing fluid through the tubing that led into the IV in my daughter’s scrawny newborn chicken leg.  Suddenly, I had a flashback of a book that I had read as a little girl in which Louis Pasteur’s miniature army of antibiotic soldiers, all wearing red coats and holding black rifles over their shoulders, marched through a syringe to fight the gruesome brown army of bacteria monsters.  I realized that Haylie’s tiny, fragile, sleeping body was that battle ground at this very moment.  Silently, I cheered for the good guys

I really want the good guys to win.

Afternoon faded into evening, and Haylie’s shivering started up again.  Another, this time larger, dose of Phenobarbital was administered.  It kicked in and seemed to quiet things down for a while, but then I noticed, with my hands in the incubator, my fingers outstretched for Haylie’s little fists to wrap around, a subtle squeezing like she was gripping my fingers harder.  She was clearly unconscious, though she was definitely frowning.  The squeezing on my fingers became rhythmic and then it spread to her arms.  Oh shit.  She was having more seizures and they were getting bigger.  I pried myself away and hollered for a nurse, who called to consult with the pediatrician on call.  The problem was that they had already given her as much Phenobarbital as they could.

Now what?

            One of the possible solutions, to use another anticonvulsant that could be mixed with Phenobarbital relatively safely, was risky because this doctor had no experience administering it to such a young baby before.  But, something had to be done, so he decided to try it.  The nurses got busy, calling around for the drug, which they did not have in our hospital. We had a brief moment of celebration when they found it in Martinsville; it could be here in about half an hour.  Then, we hit another serious snag when it was discovered that the glass tubing required to administer this drug was not available in the right size for a newborn.  Our hospital was just not equipped to deal with situations like this.

By now, the doctor on call was standing there in the room, scratching his head, looking at me with a calm, resigned demeanor that completely unnerved me. There was nothing more he could do.  My baby was now pulsing all over, large rhythmic convulsions from her naked little torso all the way through her arms and legs.  The seizures themselves are not pretty, but what they indicate, he explained, is the real problem.  The swelling and the pressure on her brain were getting worse.  She was in grave danger.

What happened next is a bit of a blur.  There were a lot of people coming and going and, in the hustle and bustle, phone calls were made in hushed tones.  Finally, someone announced that the decision had been made to send this baby to Riley Children’s Hospital in Indianapolis, an hour away.  A special pediatric ambulance with a highly-trained team of doctors and nurses was already on its way from Riley to retrieve my little one and transport her to a facility that had the equipment, and the expertise, to deal with the emergency at hand.  Everyone was now rushing around getting her, and all her records and equipment, ready to go.  We had to stay out of the way now.  So, I went out into the hallway, sat in a chair next to my mother, and cried.

From the minute we got the news of the transfer, my mom got busy trying to get my step-dad, John, on the phone.  This was around eleven o’clock at night, and he was sound asleep at home, oblivious to the sound of the  phone ringing, and the sound of my mom’s voice coming through the answering machine in the next room, pleading, “John, wake up, wake uuuup!” We were going to need a ride up to Riley since there would not be room in the ambulance for anyone but the medical team, not even me.  That is what finally shattered my tough lioness shell.

Pappy, of course, arrived just in the nick of time, and we all went in a procession through the winding midnight hallways, down in an elevator, and out into the bowels of the hospital, where we followed another long corridor that finally opened up into a garage.  There were several Bloomington Hospital ambulances parked there, and at the far end, a large garage door was open, revealing the dark humid night and a different looking ambulance, the one from Riley Hospital that had come especially for Haylie.

As we approached, there were words and documents exchanged quickly, equipment arranged, and finally her little incubator cart was wheeled up close to the step at the back of the open ambulance.  They were ready to take her out of it in order to move her directly into the special bed waiting on board. There was a brief moment when the nurse paused mid-task and looked me in my tear-filled eyes.  Instinct moved me.  I stepped in, reached for my baby and lifted her up and out of that incubator, bringing her to my face where I could smell her and put my lips on the smooth skin of her clammy forehead.  I kissed her gently and inhaled her as deeply as I could for the one beautiful moment that I had the weight of her body in my own two hands.  Then, I laid her on that bed.  It went up and in as the doors closed, swallowing her up, and that ambulance went screaming away into the night.

As the Day Went By (a book excerpt)…

As the day went by, Haylie was obviously more and more distressed.  She was whimpering and, as evening came on, she began to shiver.  Little shivers that grew more intense.  This was totally disconcerting, especially because there was nothing I could do but to report it to the nurse, who was not as concerned about it as I was.  The incubator was temperature controlled and she assured me that everything was ok.  Then why is my baby shivering? 

By now, I was also very uncomfortable because I had not nursed all day.  My breasts were full of milk and they hurt.  I had a panic thought about my milk drying up suddenly (you know, the whole supply and demand thing).  Then, Haylie’s IV accidentally came out as the shift changed.  Now, we had a new nurse on duty who was admittedly straight off of a week-long road trip and was exhausted.  She was there for the night shift.

Things went from bad to worse when she tried, unsuccessfully, several times to start a new IV, and the baby was now screaming, and the monitor alarms were sounding off, and there was quite a bit of blood.  Even my mom was starting to lose her cool.  We fetched some help, and another nurse was able to get things back under control.  But, the shivering continued and intensified through the night, and our nurse was continually nodding off to sleep with her chin propped up in her hand, as she was supposed to be keeping a very close eye on the monitor stats.  This baby was in bad shape and everyone knew it.

At some point, I don’t remember exactly when, the results of the blood culture had come back, testing positive for Group B Strep, and an antibiotic was started through Haylie’s IV.   Though the results of the spinal tap were not back yet, it was assumed that the same bacteria would be found present there and treatment, therefore, began in earnest.  I remember being given a list of warnings for the side effects.  Gentamicin is toxic to the auditory nerve and to the kidneys.  It was also known to be the most effective treatment for bacterial neonatal spinal meningitis, an infection of the tissues lining the spinal cord and brain. Meningitis causes swelling and inflammation of those tissues.  That explained the strange back-arching.  She was in a lot of pain and trying to shorten her spine to relieve the pressure there.  Meningitis also puts a lot of pressure on the brain, which causes seizures.  That explained the shivering, only our nightmare night shift nurse didn’t know this.  And neither did we, yet.

When our pediatrician came in to check on Haylie early the next morning, he diagnosed the seizures and started her on Phenobarbital.  I remember my mom asking him how long she would need to be on it, to which he replied, “Oh, I don’t know for sure…maybe three or four.”

“Three or four what,” she asked, “days?”

“Oh no, three or four years,” he replied.

We just looked at each other, my mom and I, eyes wide, mouths agape.  What?!

 It was sometime that morning, Thursday, August 5th, that the pastor of my grandparents’ church came into our hospital room.  Grandma and Grandpa Higgins were actually out of the country at the time, visiting friends in Norway, and didn’t know all this news yet, but somehow the word had gotten out and a local prayer chain was started.  So, this very kind and gentle man came by to do his godly duty and look after us.  I always liked him and the sound of his voice, having visited my grandparents’ church from time to time, especially on Easter and Christmas.  He was in the room for only few minutes, getting the details from my mother, when he looked at me and asked me if I wanted him to perform last rites on my tiny baby daughter in her little plastic incubator.  I’m not sure if it was the look on my face, or what, but my mom grabbed that man by his white-robed arm and started walking him toward the door, assuring him that Haylie came from good, strong stock and that it wouldn’t be necessary but thank you so very much.  She done good.  I was about to offer him his last rites and send him off to meet his savior, up close and personal.

We learned later that day, however, that the baby in the room next door, who was three months old and also had spinal meningitis, didn’t make it.  She had just died.


Two Nights Later (a book excerpt)…

Two nights later, we had a very bad night, the worst one yet. I was getting used to waking every three hours to feed Haylie and change her diaper, but I was new at this and sometimes it was a little rough. Tuesday night, though, was terrible. Haylie was crying more than usual and louder than usual. It wasn’t quite the “I’m hungry” cry, and it wasn’t quite the “I’m wet and poopy” cry, and it was a bit more intense than the “I hate it when you change my diaper” cry.

After changing her and trying to nurse her, I was perplexed that she wouldn’t eat. She was arching her back, leaning away from me instead of curling up and latching on. But, when I laid her down, she stayed in that strange arched position and just continued to cry louder. I talked to her, I burped her, I rocked her, I walked with her. Eventually, after the sun had come up, I called in the backup.

My mom said I could bring the baby over and she would take a turn, so I could try to get some rest. I gathered her up and delivered her to her doting grandmother, who was happy to oblige, while I curled up on the edge of my mom’s bed to try to sleep.  That was early in the morning on Wednesday, August 4th, 1993. What happened next was the beginning of a whirlwind of events that swept me up and forever changed my life, setting it on a course I could never have imagined.

My mom took Haylie, and soon noticed that she was beginning to moan little moans as she exhaled. Instinctively, she got the thermometer and took her temperature. It read 103 degrees rectally, which is high by any standards, but especially for a newborn. She burst into the bedroom and said, “Darci, sweetheart, get up. You need to call your doctor. This baby is sick.”

This was before the pediatrician’s office was open, so I dialed the pager number, listened to the directions, waited for the beep, entered our call back number, and waited anxiously. The phone rang a few minutes later, and it was the good doctor himself, a middle-aged gentleman with a stout build, a warm smile, and a jolly voice. I liked him. He liked babies, you could tell.

I blurted out the situation and he told me to come straight to the hospital, bypassing admissions, and to meet him at the nurse’s station on the third floor. He would be there waiting, as he was already at the hospital making his morning rounds. I nodded to my mom as she mouthed, “Hospital?” And as I thanked the doctor and hung up the phone, she was already getting my stepdad and moving toward the car.  We didn’t even take the time to transfer the car seat from my car to theirs.  I just held Haylie in the backseat as she arched and moaned, and John drove us to the hospital, dropping us off at the main entrance.

We moved quickly down the main corridor, toward the elevators, and I smashed in the UP arrow. Third floor. Come on, damnit.

At the sight of us rushing through the glass doors of the pediatric wing, the nurse at the front desk stood up, and my mom and I both started talking at once (which was not the first, or the last, time this would happen, by the way), telling her what the doctor had said about meeting him there. They were expecting us and she led us down the hall to a room on the right. She took Haylie, confirmed the temperature, strapped an identification band on her ankle, and started some paperwork. The doctor had already ordered some testing and within a few minutes my tiny baby was on her way to do a spinal tap to “rule out” spinal meningitis, they said, a common cause of high fever in young babies.

As we waited there in that cold hospital room, I realized that I hadn’t even brushed my teeth and that I was still wearing my pajama top. I hoped this wouldn’t take too long. I was still completely unaware of the precipice we were teetering on.

In the meantime, we were able to talk to the doctor, who explained about the spinal tap procedure, including how painful it is. They stick a long needle deep into the back to extract some spinal fluid in order to test it for bacteria growth. It takes a couple of days to grow the culture and confirm the results. Simultaneously, they would also do a blood culture, which was quicker, and the baby would need to stay in the hospital for observation. This was serious, potentially very serious. By now, John had parked the car and found us, but he was promptly dispatched again to retrieve my toothbrush and some food. We were going to be staying for a while.

Eventually, Haylie came back in an incubator. She was stripped down to her diaper and had leads and wires all hooked up to a monitor keeping track of her vitals. She had an IV in her foot to administer fluids and something to bring the fever down. I sat down next to the incubator and put my hands through the two holes on the side that looked like space station ports so that I could touch her, and pat her, and comfort her. It was very disturbing to see my tiny twelve-day-old baby this way and to not be able to hold her close, particularly because she was in that very awkward arched-back posture and was clearly not comfortable at all. Her brow was furrowed, her eyes closed, but she was not asleep. She was moaning. We spent all day in that room and took turns putting our hands into Haylie’s incubator to touch her and let her know that she was not alone.

Mommy and Grammy and Pappy are here.  Hush little baby, don’t say a word.  Mama’s gonna buy you a mockingbird.