spinal tap

[and we return to our story]

That night I would have the first of many conversations with Juniper's neurologist, Dr. Luke - who happened to be the neurologist on call for CHOA that evening. Dr. Luke would turn out to be a savior for my family. She would also have the pleasure of repeatedly telling me the most difficult news of my entire life. This one was par for the course.

We didn't have this conversation in person, but rather over the phone at the nursing station. I stood there amongst the medical professionals as they dictated their patients records.

"Juniper has Generlized Myclonic Epilepsy" Dr. Luke told me, as if she was giving me a diagnosis.

Epilepsy? That doesn't seem so bad, I thought. Isn't that just a bad case of the seizures?

Dr. Luke went on: "We are going to start her on 1.4mls of phenobarbital. We start by giving her a loading dose of 10mls tonight."

10mls? Does she even have that much blood in her tiny veins? And what is phenobarbital?

Yes, she does have that much blood in her veins and phenobarbital is a class C barbiturate, an old school heavy tranquilizer that can cause respiratory failure if given in high doses.

I was silent on the phone.

Dr. Luke knew better than to ask if I was still there. She continued. "We will have to run a series of tests to find out the cause of Juniper's Epilepsy." I quickly learned that Epilepsy is more of a set of symptoms than a diagnosis. "We will need to run some blood and urine tests and a lumbar test." "What's a lumber test?" I asked. "We will need to take spinal fluid," she explained.

"A spinal tap?"

"Yes."

Tears began to stream down my face.

A few moments later, I hung up the phone and returned to the room. It was one of those walks where things get too much to handle so your brain turns off everything but the motor skills to take a few steps forward. 

The nurses loaded Juniper with phenobarbital and she slept quietly in her "nest" in the middle of the large hospital bed, wires still protruding from her head. I stared at the peaks and valleys on the EEG monitor like they were steep mountains for me to climb.

I did my best to catch sleep here and there, but I was terrified of what the future may hold. It's hard to keep your mind at peace in times like this. The closest thing I can compare it to is the feeling I got when my granddaddy got cancer, or when I was told we needed to put down my childhood dog. The future has to come and you can't always control what it brings, but damn it's hard to sit still and let it happen.

The next day Dr. Luke visited us as Juniper slept, high on all the drugs with gauze and wires on top of her head. Juniper looked like a little robot recovering from having circuitry ripped out of its head.

Dr. Luke didn't look like I had envisioned her when we talked on the phone the night before. People never do. She was a small-framed, younger woman with thick, oval-shaped glasses. She spoke with the academic confidence and directness of a fellow fresh out of her residency. She also had an energy about her that made me feel confident that I could trust her. Ultimately, I had to trust her with my little girl's life.

She reiterated what she had told me the night before. I distinctly recall the part about how this could "just be seizures" or something far more serious. I recall hoping for the former, but expecting the latter. I am the type of person that prefers to think of worse case scenario in order to prepare myself. If it's better than the worse possible scenario then I can be pleasantly surprised. At the time I didn't realize how accurate my expectations would be.

For the next few days, Dr. Luke visited us on a daily basis and talked to us about hypotheticals upon our request. Nurses came and went, drawing blood and catching Juniper's piss in little clear plastic bags.

When they came for the spinal tap, Coley and I left the room. I was told she would never be able to associate my face with the pain, but I didn't want to associate her face with the pain anyway. And in the off chance they were wrong, I didn't want to be the boogeyman in Juniper's mind.

Coley and I spent half an hour of a sunny spring day in a colorful courtyard, as the doctors dug into Juniper's spine.

A small child played in the garden, plucking petals from flowers and setting them to sail across a little fountain, as his mother spoke on her mobile phone. The boy's mother was very distracted. I was sure she was telling a relative some tragic news about one of the boy's siblings.

Coley smiled and played with the boy, working hard to distract herself. I worried that Juniper might never get to set little leaves and petal sail across a little fountain. In my mind, in those moments, Juniper would never be capable of achieving the boy's curiosity. I am not sure why, but that was where my head was at the time. I was like a cold old man to the boy. Like some kind of cynical, pissed-off alcoholic dying from liver cancer without a single soul by the bedside. I avoided the his efforts to engage with me.

Normally Coley would have said something, but she let me grieve.

 

what are the odds?

Juniper's genetic condition is extremely rare. 

Dying in a plane crash, getting struck by lightning, winning millions in the lottery, getting your heart carved out and eaten by a deranged serial killer kind of rare. 

Often when this kind of a thing happens, our first thoughts are things like "what did I do to deserve this?" or "why did this happen to me?" I'm no different from most people. Those horrible thoughts crossed my mind. But I was able to transcend them quickly and here is how my thought process progressed: 

  • Perspective 1: How has this happened to me and what did I do to deserve it?
  • Perspective 2: Maybe this happened to me because I am the right person to handle it.
  • Perspective 3: This didn't happen to me at all. It happened to Juniper. It's not about me. It's about her.
  • Perspective 4: Nothing happened to me or to Juniper. Juniper was born this way. She formed this way. Nothing happened other than the birth of a unique and beautiful human being.

I make it sound easy. 

It wasn't. 

But if I think about that last thought now, it makes more sense than the others and that is what is most important for me (and everyone else) to understand.

I've learned a lot about triumphing over trauma over the last few months. One of the first things I learned was to diligently and vigilantly focus on the learning process itself.

Learning can be one of the greatest of gifts.

[next week, we will return to our story]

event: rhythmic bursts

I spent that entire night awake in the children's hospital by Juniper's bedside, in a Google-induced panic - searching the internet for diseases and injuries that could cause Epilepsy. I felt that I had to stay awake because no one at the hospital was monitoring her for seizures.

I was terrified that I had caused this. Maybe I had put her down too hard or shaken her somehow. Maybe I had irreparably damaged her brain. It felt like the worst hangover of my life: I felt horrible and somehow I thought I had brought it onto myself. I spent the entire night stepping between the future and the past, wishing that I could do anything to change them. I drank coffee to keep myself awake and it kept my anxiety escalating. 

The next morning brought some of the first letters from the alphabet that Juniper would ever hear: MRI and EEG. I slept through the morning MRI as Coley went along for the ride. I felt guilty sleeping but, one by one, my systems were shutting down. The nurses had strapped Juniper into what looked like a tiny yoga mat, wrapped around her body to prepare her for entering the giant magnet tunnel. The MRI took hours. We then headed back to the room, with machines and IV bags in tow.

I saw some sick kids in the hallway and imagined the torture they had been through. I tried not think of this, but it invaded my mind before I could stop it. I imagined them fighting cancer and other horrible diseases. I imagined them screaming and crying as painful treatments were applied without them understanding why. I could hear some of them crying in their rooms as we walked down the hall, re-enforcing my thoughts.

Later that morning, a smug neurologist with a small black doctors bag and a stethoscope walked into Juniper's hospital room. I have no idea what he had in that bag. I imagined lobotomy tools. He informed us that Juniper's MRI was normal. Then, with confidence, he exclaimed that Juniper had Benign Sleep Myoclonus. He even wrote it on a white board in the room. 

I can't explain how, but I knew he was wrong.

We showed him the video of Juniper seizing. He told us that this condition closely resembled seizures. Nicole and I protested and told him that she was never sleeping when the events happened. He wrote "does not always happen while sleeping" on the white board. Yes, he actually wrote it on the white board like he was teaching a couple of elementary school children how to sound out words. Clearly Coley and I looked skeptical. He looked at us and said "well I guess we could still do an EEG to confirm." 

Yes, Doctor, let's do that.

The EEG tech was methodical. He diligently arranged adhesives, wires, gauze and leads on Juniper's hospital bed. I remember him talking about all of his healthy kids at home. His process made it seem as if he was a veteran, but his bedside manner made it seem as if he was brand new at this. He told us he had been an EEG tech for sometime over 10 years. God, all of the poor families that had to hear about his healthy kids. 

Juniper now looked like a tiny robot medusa, dozens of wires coming from her head. I looked at her in the camera that the tech had left behind, for remote monitoring. Then, my eyes focused on Juniper's brain waves.

What was going through her tiny mind? Did she feel the electricity surging through her brain? Did she think something was wrong? Was she afraid like I was? 

I glanced back and forth between Juniper and the monitor as my brain tried to process what her brain was processing. It wasn't long until the first seizure started. The first of a now predictable cluster of three fifteen second myclonic seizures. 

I watched the EEG record the electrical storm in her brain.

It resembled what it might look like if you shocked someone with a taser while they tried to draw a line with the computer mouse. Or perhaps the signature of some heroine addict on a recovery facility's electronic intake form. 

Beside the lines was an update in small, pink courier new text that read:

"Event: Rhythmic Burst." 

The waves rapidly shot up and down in deep and narrow peaks and toughs. My heartbeat began to match them. I knew the doctors knew what Coley and I knew now.

We waited for the same doctor to come back into the room and declare his mistake, but he never did. Coley and I, frustrated after witnessing three seizures on the EEG and waiting hours for a response from the hospital, demanded that Juniper be placed on medication to stop them. 

[once again, we will jump back to some lessons for the next few posts] 

fifteen seconds

I received a call from Coley the next morning and she asked me an odd question: "Have you ever noticed Juniper make repetitive, rhythmic, twitching movements?" I hadn't.  We shook it off as normal baby stuff. Nicole brought the girls home later that day. A few hours later, I settled back into my new role and began feeding Juniper. About halfway through her Dr. Brown's bottle, I paused to let her breathe. 

Juniper and I looked at one another and her eyes suddenly locked into place. Her fists clenched, her arms began writhing forward, rhythmically. All of her little limbs set into a tempo of around 60 beats per minute, for about 15 seconds. The movements were so predictable that I immediately felt my heart sink, yet again.

I felt that feeling you get when you are falling and you know you are going to hit the ground. You brace yourself for the fall and prepare yourself to minimize the damage in anyway you can. 

Coley sent a message to her friend, who is a hospital pediatrician. She told Coley not to worry too much. After we sent her a video of the next episode, she urged us to see our pediatrician. Off again, we went to their offices. 

Wouldn't you know we ended up in the damn nursery rhyme room again. The characters seemed to have empathy in their eyes. They knew what we had already been through. 

A doctor came into the room. We showed him the video and he looked puzzled. I could tell he wanted it to be something trivial. Maybe he saw the fear in our eyes or the eyes of the nursery rhyme characters. He watched the video several times and seemed to be hoping for a different outcome. 

Juniper was just 6 weeks old. Surely these weren't seizures. 

He watched it enough times to validate our concerns and recommended that we see a neurologist in the next 24 hours. And so began our next visit to the hospital. 

We checked into the ER at Egelston and were quickly ushered to a room. Back on the full sized gourney, back on the machines. 

Juniper thrashed about as the nurse searched for her veins with the IV, like she was searching for a small creek in a dense forest. 

I worked busily inside myself to keep the experience from getting in. I stared at her with the same blank, lifeless stare she wore during her seizures.  

A doctor entered the room and asked the same twenty questions we had already been asked twenty times. I may not be exaggerating. That would be like answering 400 questions. There was either poor communication and documentation at play, or they were trying to catch us in a lie. There was no other explanation. 

Maybe Juniper got tired of all of the questions because she decided to show him herself. Her body locked into place as if she was tightly restrained on the gourney and her clinched firsts began thrusting forward. Her eyes locked on the IV bags above her. 

Fifteen seconds was all it took to shake the young resident into action. 

Not everyone has the pleasure of witnessing a 6 week old, premature infant experience a  generalized myclonic seizure. He left the room in a hurry exclaiming that he would quickly locate a neurologist.

me and mottisier

[this week, we return to our story. we left off here]

When we returned from the hospital with Juniper for the second time, we tried to settle into a routine. We stopped warming bottles in coffee cups filled with hot water and began using the bottle warmer. We busted out the rock and plays. We traded in the disposal burp cloths from the hospital with cloth burp cloths. We tried to get the girls on an eating schedule. We weren't exactly running like a well oiled machine for quite a while, but we started getting the basic logistics under control. 

The girls still cried...a lot. Their cries crept into the cracks in my mind like blood on a hardwood floor. 

Sleep deprivation, depression and anxiety chipped away at me. I like to think of myself as a good man, but I can't say that Bernard Mottisier (a man who sailed around the world, fell in love with the sea and left his family) didn't cross my mind from time to time.

Then I got the break of a century. My wonderful, beautiful wife took the girls to her parents house for two days to let me focus on work and rest. At night I watched movies and listened to music. Slowly, sanity started soaking in again. I felt like myself. I took a shower and cleaned up my beard. 

My world, which had nearly fallen off its axis, straightened out and started spinning again. I called Nicole and she sounded ok. She and her mom were working the night shifts but getting enough sleep to get by. Juniper's eating was still frantic and uncoordinated, but she was doing well and her weight had been steadily increasing for a few weeks by this time. Maybe everything would keep getting better and better from here on out, I thought. Then, I received a call from Nicole and she asked me an odd question: 

"Have you ever noticed Juniper make repetitive, rhythmic twitching movements?"

dream catchers and wind chimes

A dream catcher that hangs above the girl's changing table.

The things the girls are partial to now have more significance to me.

They have both studied a dream catcher that hangs above their changing table intently, from the beginning. They study lines and contrasting shadows. The soft edges of the feathers.

It's as if they know it was created to protect them and keep monsters and ghosts from their dreams. I hope they see me that way too. All of the lines and shadows of my face, there to protect them from the monsters and ghosts of the world.

I see the dream catcher as many things now. It's caught so many metaphors from my mind. It catches beautiful thoughts too now, not just nightmares - and it gives the good ones back when it's time.

One of its stories is of spider webs. I've started to study spider webs, admire them, and watch the light shine through them. I used to see them as a nuisance and tear them down, but now I see them as very important.

All too often we overlook the beauty in things that we may see as a nuisance. Perhaps some of the things we try to eliminate from our lives could teach us something about beauty and balance.

The spider webs are like my Juniper.

Each time I look at the dream catcher or see a spider build it's home, I am reminded of this.

A wind chime that hangs on the soffit above the back deck.

To me, the wind chime is a symbol that transcends physical senses. I can see its sound and hear it's movement. If I see a wind chime move, I know it is making sound, even without my ears. If I hear it, I know it is moving even without my eyes.

Movement is sound and sound is movement.

Regardless of the senses we develop, we can perceive the same things.

With the uncertainty Coley and I face in the future, this has become important for us to hold on to. We have been told that Juniper may never walk or talk. That can be difficult to accept. As parents, we are determined to push past it, beat the odds, and think that we will be the exception.

But we must also be prepared to change how we perceive the world, rather than to force Juniper into ours.

Throughout my life, I have found that the things that do not talk always speak the loudest. I have learned more from listening to things that don't have words. The wind, the sky, my hound dogs, my little girls.

Every time I walk out on the back porch and the wind picks up, my heart and lungs are filled with energy now. Because I know that we can always transcend our senses if we understand them in the right ways. 

The girls focus on specific things for a reason. Something in those things is aligning with where they are developmentally, neurologically. These things are helping my girls carve out new pathways in their minds.

I always try to focus on the things that draw my girls attention, like the dream catcher and the wind chime - and I let them carve out new pathways for me too.

[for the next few posts, we will go back to our timeline, and continue to share our story.]

 

fishing

The nurses at the hospital immediately plugged Juniper into the machines that would them about her insides. The standard EKG and Pulse Oximeter.

She lie there, still and lifeless.

The nurse began to attempt an IV. If you have ever seen an infant receive an IV, you know the heartbreak this brought to me. The nurse haphazardly stabbed at Junipers skin and flesh, fishing for her very small veins. Juniper screamed until sound stopped coming out of her tiny body.

She gasped for air.

I could not process the pain any better than she could. I could not understand what was happening to her any better than she could. The nurse finished the IV, started her on fluids and left the room. The defenses in my mind collapsed and I cried by her bedside as she slept.

For the next 5 days, we desperately tried to keep Juniper alive.

We worked with speech therapists to try feeding techniques and specialized bottle nipples. It was a two person job. We had to force feed Juniper every two hours around the clock. One person would hold her perfectly upright as the other played darts with the rubber nipple, dodging her tongue and lips.

The speech therapists were very helpful. The physicians simply came into the room periodically to threaten us with a feeding tube.

It took about 50 minutes to feed Juniper: 10 minutes to strip her naked and get her uncomfortable enough to wake her, 20 minutes to force feed her about an ounce, and 20 minutes to hold her upright and try to limit the re-flux. This relentless routine would continue for weeks after we left the hospital.

Later I would refer to the whole first few months of the girls lives as The Death Zone. This time is difficult for any parent to survive. If you have twins it will be even harder. If you have a special needs child it will be harder yet. If you have both twins and a special needs child, be prepared for parts of your self to die. They'll be reborn in new, perhaps even better, ways down the road so don't worry too much about it.

I will admit it did think it would never get easier. I thought people that told me it would get easier were lying to me. I convinced myself that having kids was all some big conspiracy. A lie that parents told to themselves and others. It did get easier.

But not before it got far more difficult.

[for the next few posts, we will take a break from our timeline and move forward a few months to discuss some new perspectives...stay tuned next Tuesday]

the death zone

My mind raced as I sat still, in traffic, on Atlanta's perimeter interstate 285. I talked to my mother on the phone and she did her best to comfort me, but I had already allowed panic into my mind. I looked at Juniper in the small distorted mirror I had strapped to the back seat.

She lie there directly behind me and made no sounds.

My mind began to engineer scenarios and I walked through them. It was like my mind was having me go through disaster drills to prepare me for the worst. I reached back and yanked on Juniper's bib. 

She did not move. 

I felt vomit on my fingers. I pulled on her clothes forcefully in an attempt to shake her into movement and screamed her name at the top of my lungs. At this point I was sobbing. I can't explain why, but I thought that I was losing her. I pulled over on the shoulder of the highway. I felt a buzzing sensation in my hands as my heart rate escalated. I took Juniper out of her car seat and stripped her down naked. I sat in the van, hitting her feet violently and screaming her name. 

She was unresponsive. 

Her breathing was slow and shallow. I envisioned myself sitting in the van and holding her dead body, rocking back and forth and squeezing her tightly. I called 9-1-1. I was so devastated that I could not tell the operator where I was. She talked to me like I was a child and eventually we made progress. I met the ambulance at a nearby gas station and they put Juniper on a full sized gourney, in her car seat. 

My father is a paramedic. I would have trusted him with Juniper, but for some reason I worried that these paramedics were not equipped to handle the needs of an infant. One of them used scissors to cut the EKG leads into smaller circles for Junipers tiny chest. I recognized the scissors as those paramedics use to cut the clothes off of patients. My father had once shown me that they can be used to cut through a penny. 

The Death Zone is the name used by mountain climbers for high altitude where there is not enough oxygen for humans to breathe. I felt like I was in the Death Zone. My heart rushed to supply oxygen to my brain. My brain rushed to build its defenses. 

I followed the ambulance to the hospital, running red lights and passing other cars as their drivers returned home from a normal day at work. I passed by sports cars and mini vans with carpools and kids. I screamed at them to let me pass. I felt like a prisoner held in a small sound proof room, screaming to be let free. They could not hear me and most would never understand what I was experiencing.

We arrived at the hospital and I collected myself. A feeling of relief came over me. I had delivered Juniper to the most capable hands that I knew of. I had done my job as her father. 

This was the first of many times that I would need to be there for her.

 

old mcdonald and humpty dumpty

We arrived home on February 20, 2017. There was a strange feeling of stepping into someone else's house. I was a different person already. I remember the first few days with the fuzziness of a hangover. We are programmed to be motivated by our infant's cries. I could feel them grip the primitive parts of my brain. There was an uncomfortable feeling similar to an unsatisfied addiction. 

On day 2, we went to the pediatrician for the first time. The nurse practitioner at the office told us that Laurel was looking good, but that Juniper had lost 11% of her body weight, which is slightly outside of normal ranges. I recall watching her lie on the scale, tiny and naked, flailing her arms sporadically. She was down to 4.4 pounds. The nurse assured us that there was no need to worry and sent us home.

About 6 hours after we arrived home, I began to worry. Coley was sleeping and her mother was helping me take care of the girls. Juniper had gone all day without eating more than a few milliliters. I tried to force feed her. She refluxed everywhere and violently resisted my efforts. I tapped on her foot desperately, but she continued to lie there motionless.

I cannot describe how, but I knew something wasn't "normal." This was the first time I really knew.

I called the pediatrician and they agreed that I should come back in. I decided to tell Coley about what had been happening, but to insist she stay home and rest. I loaded Juniper into the mini van. She used some of her small amount of strength to fight me as I restrained her in the car seat.

On the way to the pediatricians office, the situation escalated in my mind. I was so rattled that I got into a small car accident in the new van. I gave the man who had been victimized by my fear my information. I told him about Juniper and said I would not wait for police. He showed me kindness (until it was time to collect money for repairs) and let me go.

When I arrived, the nurse took a look at Juniper and told me that this might be one of those "first time parent therapy visits." She actually said that to me.

Normally I would have felt stupid and self conscious, but somehow I just knew I was right to be concerned. I already knew my child better than she did. I protested her diagnosis. I would have brought out signs and staged a sit in if I had to. She agreed to bring in the lead pediatrician to try a feeding. 

As the pediatrician attempted to feed her, Juniper trashed her arms like she was drowning in the air. The pediatrician held her upright and forced the rubber nipple into her mouth. As soon as the pediatrician stopped for a moment, Juniper would close her eyes and sleep.

The pediatrician tried, aggressively, to make her comply. The murals on the wall contained nursery rhyme characters. Old McDonald and Humpty Dumpty watched Juniper vomit and gasp for air. After about a half hour of water boarding with Formula, the pediatrician left the room and informed me she would return momentarily.

I sat in the room alone with Juniper, frustrated and concerned. When the pediatrician returned she informed me that a nearby children's hospital would be waiting for me. She told me not to worry, that we should just take precaution. The hospital would help assess her and run a few tests. That's all. I put Juniper back in the van and set out for Scottish Rite.

The half hour drive proved to be the most difficult of my life.

transitions

The first sign of trouble came when the nurse told us that Juniper would have to go to the transition nursery.

My heart sank with worry.

I watched tears stream down Coley's face as she told Juniper goodbye and the Magnesium entered her veins. I struggled to cope with that, so I began to build a wall. Brick by brick, I would busily build that wall over the course of the coming weeks. They took Juniper, slowly and casually, away to the transition nursery. 

When I first visited her a few hours later, I picked up and old landline telephone and told the nurse I was Juniper's dad. She was the first person I would tell that to. I entered a room full of babies, who were - for all intensive purposes - fighting for their lives.

Juniper lie there connected to the machines.

The tiny pulse oximeter told the nurse about low oxygen saturation. They added some oxygen to help her breathe. I noticed my own breathing speed up. I worried Juniper would not make it, despite being told that she would be OK.

Life is just so fragile. She was just so small. 

The transition nursery cleared Juniper to come to the hospital room just seven hours later. We were all together as a family for the first time (minus their big brother and my best friend, our hound dog Townes).

Coley and I quickly became acquainted with the challenges of managing two newborns.We struggled to feed Juniper. She seemed frantic, as if the womb had been some dry desert to her. She re-fluxed badly. The nurses assured us that this was all "normal" infant behavior and that first time parents often expressed such concerns.

I felt sick.

The humid Georgia air brushed against my nose and throat. I wore a SARS mask to protect the girls from their father. I worried about how I would look in the photos, but thought about the benefits of not having to smile.

At night I felt exhausted. We sent the girls to the nursery and slept a few hours. 

On day two, the daunting challenge of keeping two infants alive began to cause me significant anxiety. My fear about the situation manifested itself into obsessive compulsive behaviors. I became obsessed with washing my hands. They cracked and itched.

I began to unravel.

Reality had hit me. I felt that I had traded in my freedom. I put lotion on my hands and then washed them again. I sneezed into my shirt and later did "skin to skin" with Laurel. I then became convinced I had infected her. I asked the nurses to take her temperature obsessively. 

Medical professionals and family members flooded our room. They talked over one another and we struggled to their hear advice and congratulatory remarks. The room was filled with a plethora of information, but I retained very little. The hospital provided some printed materials that I put into a neat pile and moved around the room.

The flowers in the room rotted and smelled like death. The security system failed and an armed guard was placed outside of our room. I felt the pressure of guarding something valuable and vulnerable. We stayed in the hospital for just 4 days and then they sent us home with around 10 pounds of human flesh and 10 bags of formula, blankets and diapers.

I played "My Girl" by The Temptations several times on the way home to keep myself from panicking. 

the splice

On February 16, 2017, I sat in a small office chair and watched everyone go through their morning routines. Some discussed the news from the night before, others commented on sports scores. Finishing up their morning coffee, they prepared to cut into my wife and take out some of her organs. I sat there nervously sweating in anticipation. I was about to be the father of twin girls. I was nervous, but I was ready.

My wife, Coley, and I had done everything right. We had a house, a dog and a yard. We had a nursery decorated in little woodland creatures. We had accumulated a library of Children's books (I even wrote a few). We even had a fucking mini van.

We were ready. Or at least we thought we were.

I remember noticing how nonchalant everyone around me was acting at the hospital that day, as I sat there waiting for the most significant event of my life. They called me in when it was time to begin the C-Section. I sat down beside Coley and readied my camera like I was waiting for some endangered creature to come out of its habitat.

Coley is the strongest person I know. The procedure didn't seem to phase her.

Laurel and Juniper, were born at 8:30 and 8:31, respectively. I refer to this moment as the splice. There are few times in one's life where life completely changes in the span of one second. A moment when you are forever intertwined with something else, from that moment forward. The birth of your child/children is one of those times.

I caught some pictures of them with their asses in the air and told Coley I'd share those with their first boyfriends to embarrass them.

Once they found their way into the atmosphere and most of the vernix was polished off, the techs let me over to see them. They were beautiful. All of their parts and pieces were there. Honestly, they looked like tiny little old men that got in a fist fight. But to me, they were beautiful. I noticed that Juniper didn't cry much and that worried me, but otherwise everything seemed to be in its right place.

in the beginning

Holding your own child while she has a seizure feels like holding your own heart as it beats outside of your body. Juniper's seizures started when she was just 6 weeks old. I'll never forget the first time I experienced one of her seizures. I was in our small brick ranch in Decatur, Georgia feeding her Similac Sensitive formula and dodging her reflux, when her whole body began to twitch rhythmically like a heartbeat. Her eyes fixated on our drywall ceiling, her arms jumping forward with the weight of her small body, her hands clinched into little fists.

I would later refer to Juniper as our little fighter because she always kept her fists clenched, and because she endured more trips to the emergency room, more EEGs, EKGs and MRIs, more needles, more pain in her first few months of life than I had in my entire 34 years before she was born.

An email from our pediatic neurologist at Children's Healthcare of Atlanta with the subject of "Chromosomal Micro Array Results" began with "Results: ABNORMAL FindingDeletion of 1q21.1 to 1q21.2 and partial deletion of STXBP1." The email then described what it called "features" to include microcephaly, intellectual disability, dysmorphic facies, eye abnormalities, congenital heart defects, genitourinary anomalies, skeletal malformations, seizures, autism spectrum disorders, attention deficit hyperactivity,  early epileptic encephalopathy, developmental delay, ataxia, hypotonia among other features.

Even after hearing all this verbally from the neurologist, the email felt more painful. It just felt more permanent I guess. And it was permanent. And there was nothing I could do to change it. If you are a medical professional you know that this diagnosis is very serious. If you work in the technology industry like me, you are wondering why they call these features. Features are supposed to be good things, and all of this seemed so "bad." In technology, we call bad things Defects.

One of the first things I had to do to cope with this news was to stop thinking about it all as "bad." I tried to reject words like "Defect," "Disorder," and "Disease" and use words like "Different." Transcending societal norms became an crucial part of accepting reality for me, which I'll discuss more later.

When I first saw my little girl having a seizure I remember feeling like one does when staring at a clock. Her tiny limbs tapping at the air like second hands. Each second slowing down to strip the cloak of movement and show its real self. When you stare at a clock and watch the second hand, the world around you blurs, your perception of time bends, and everything stops moving. That's how it felt: like I was suspended in time, and I didn't want to move forward. I didn't want to have to move to the next second. I wanted time to stop and let me sit there quietly breathing while Juniper lie still in my arms.

But time would march on forward - and along with it would march a parade of medical professionals, altruists, assholes and academics to help us look for answers. I learn new things from my experience everyday and I have realized that I need to share my thoughts and experiences, prompting me to start this blog.

In this blog I'll write about 1) what I have experienced as a parent, 2) what I have learned about psychologically processing my experience and 3) what helpful resources I have found for parents (particularly those who have kids with special needs).

If you are new to parenting - especially if you have multiples or a child with differences - you may feel that your life is collapsing around you. But you will get your life back and this blog will tell you how.