STXers Unite!

We took a family trip last week and I missed my first weekly post since I started this blog. However, I missed posting because last Tuesday I was busy doing the very thing I originally started this blog for: connecting with people and building a community around Juniper. Last week we attended the first STXBP1 meet and greet, an event where 60 (of around 300) families from around the world came together in Orlando to connect in person. Every person at the event either had an STXBP1 deletion/mutation or had a close relationship with what we’ve come to call an “STXer.”

This event seemed to be cathartic for many, encouraging for others and perhaps yet more devastating and isolating for some. Coley and I learned a lot from the event. We learned that there are other families like ours, who are trying to do everything they can to set up a happy life for their children. We learned that their are people like us, who are looking to find softness in hardship, peace in things that fall apart and strength at the brink of exhaustion. Most importantly, we learned of traits in many of STXers there that reminded us of our Juniper - kindness, happiness, innocence, beauty, love, acceptance, openness and realness.

This was the community of people filled with the reality and empathy we traveled there to find. For me, the experience of walking into a conference room filled with STXers was real, raw and resolute. There were people dancing to live music (on their feet and in wheelchairs), lying on the floor with their legs crossed, yelling out in joy or frustration, hugging one another, telling stories, bonding over shared experiences, laughing and crying. 

 
 

I met people from all over the world: From east to west, Florida and New York to Utah and California, from South America and Europe to Australia and New Zealand. All of them happy to be there, alive together. All of them happy to be surrounded by people that shared a similar understanding of the world, a special lens, a gift to see things as they are.  This was a place of inclusion and acceptance. It was a place of freedom, in a sense.

I met a mother who had identical twins, both with mutations of the STXBP1 gene, who shared more energy with me in our fifteen minutes together than I've shared with anyone in a long time. She had four boys, two with mutations - maybe even facing twice the challenges Coley and I face. I couldn't fathom how she could survive it, yet she was there standing in front of me with a smile, eager to share helpful gems of knowledge.

I met an STXer that asked her father, "Do you have any chocolate?" before smiling at him and jumping in the pool. I'd been made to believe that Juniper wouldn't likely be capable of these things, but I saw my daughter in that little girl. I saw myself replying to her, "No June, I don't have any chocolate, but ya want to get some ice cream later?" and I saw myself smiling back at her before telling her to "be careful" as she leaped into the fluid, forgiving arms of the water. I saw myself sitting in the sun and experiencing it without worry of it being taken away. 

There was a time when I might hesitate to use the word "STXer" to describe my child, or any other child for that matter, but there is no other word to use that can describe the magic that these human beings contribute to the world. They aren't limited to their own category, they deserve it.

If you are a parent of an STXer, or if you are an STXer yourself, and you read or hear this, thank you for your support and for being a part of the community. I love you very much. Keep moving. Inch by inch, mile by mile, whatever the pace, we will change the world together - even if in just a tiny corner.

coley

Everyone who knows Coley gets to enjoy a special kind of energy. If you’ve met her, you know that there is something unique about her, yet something you can relate to. You know that she’s a beautiful person, a good human being, a nurturing mother, wife and friend.  

She gives and gives until I don’t understand how she has anything left to give, and she gives some more. If you know her, you know this. She’s overtly optimistic and she wears a smile in most moments. In fact, I doubt she’s ever met a stranger she hasn’t met with a smile. She balances out my inherently skeptical, pessimistic points of view - and, trust me, she has to throw a lot of energy on the seesaw for that.

If you have met her, you know that she is kind and empathetic. You know that she genuinely cares about you. She is strong and committed, loyal and loving. She is a powerful force. If you know her, you know that she carries weight of the world. She cares about everyone and everything. She is frequently successful in making the lives of others better. Sometimes, she makes life seem too good and too easy. 

If you have ever met her, you likely know her well, but what you likely don’t know is this: She works her ass off to earn the ability to smile so much. She works hard every day, all day, to give everything she has to others. Did you know that she got up, made me a cup of coffee and served it to me in bed everyday for over five years?  

Did you know that she gets up, changes two diapers and makes two bottles nearly every morning now? Did you know that she has a very stressful job that takes well over 40 hours of her time every week? Did you know that she manages a pile of paperwork outside of her job, including bills, finances, medical applications for June, legal and tax documents?  

Did you know that she sacrifices her own well-being for those that she loves? Did you know that she does not lay down to rest, does not even sit down, until late into the evening? Did you know that  she spends her evenings feeding the girls, doing exercises with Juniper, entertaining Laurel, taking Townes for a walk, bathing the girls, putting them down, making our dinner?  Every bit of it, every bit of her time and energy, is dedicated to taking care of other people. 

Did you know that she wakes up every morning, like the sun in my world? She is always there with me. She brightens every room with natural light. Sometimes I take her for granted, but when she's gone I miss her so badly. When I am alone in the darkness and in the shadows of the mind, I miss her. If the sun could be peeled like an orange, she would be it’s flesh. In our family, she is the most important force of energy.

This Thursday marks the thirteen anniversary from the day that Coley and I first started dating. It all started with a message sent on April 27, 2005 that read: “well i saw you had a converge button a while back and i wanted to say hi...” and a few weeks later our future together began. It’s hard to believe that this Sunday is her second mother’s day. Time moves so fast. Over the years, I have learned that time is not patient, but love is. Love is what heals our wounds.

I love you Coley.

gripping the universe

Trees have many meanings to me. They anchor the earth to the sky with roots in each of them, gripping the universe with forgiving fists. They make sacrifices to keep us warm. They burn up and break down into ash. They build up the basic elements. They breathe for us and we breathe for them, converting poison to air and air to poison. They need us and we need them. They are our life force and we are theirs. It is sad that we don’t always realize this and that we cut them down by the billions. I wish we would stop that.

The leaves on the trees are so fragile and temporary, so powerful and permanent. One of my favorite things in this world is the light in leaves as the sun shines behind them. Sometimes they are still, sometimes they sway, sometimes they sashay their days away. They always bring me peace, regardless. Bright greens, yellows and reds: All the colors of life and rot and death, dancing along with the light above us. 

I often look to the oaks and maples and they smile back at me and wave. The beech tree always holds on as long as it can. When the leaves are at their weakest, at their end, they are the most vibrant and beautiful. It’s as if they have brought all of the light into their veins to build up their courage before they take the leap. They become brighter and brighter and they burn into my memory, so that I may clothe the trees with my eyes throughout the winter. 

Coley and I love trees so much that we named our daughters after them. Juniper and Laurel carry the same beauty and light in them that the leaves do. They are so fragile and temporary, so powerful and permanent. They are our connection to Mother Nature. They came from her as much as they came from us. I hope they each share our love for trees, so that we can all explore the woods together. So that we can we can look up at the trees together, build homes in them, pretend we are in another universe, let the light pass through everything. I hope they fall in love with their namesake as we fall in love with them. 

all I need to know

They say it takes a village to raise a child. Coley and I quickly realized we needed one after the girls were born. We also learned that the villages of today exist online. There are around 300 people in the world that have been diagnosed with a deletion or mutation of the gene STXBP1. Upon discovering June's diagnosis, Coley and I knew we needed  those people to be part of our village - and it didn't take a quest to find them, just a quick search on Facebook for "STXBP1 parents." There we found both open and closed groups of parents and supporters of people with a similar genetic make up as June. 

They were all out there, already talking about seizure medicines, coping with hardships, useful technology and equipment, and a love for their children. They were sharing pictures and videos of their children clapping, laughing, crawling, tremoring, walking, experiencing seizures and enduring medical procedures. They had already built a community there in the digital world and they welcomed us in. 

These parents are knowledgeable, helpful, supportive and most importantly - empathetic. They know what it is like to be us, because they are like us.

All of the medical research and the information we had received from doctors and therapists paled in comparison to what we have found in this Facebook group. If you'll recall, we were initially provided with the following medical "features," as what we should expect, including microcephaly, intellectual disability, dysmorphic facies, eye abnormalities, congenital heart defects, genitourinary abnomalies, skeletal malformations, seizures, blah blah blah...

The medical description seemed to paint a bleak, grim picture for our future. A future filled with words that carry negative connotations, numbers that represent deficits, doctor's visits, surgeries, suffering and pain.  A future I've worried and worried and worried and worried and worried about.

A few months after receiving the medical diagnosis, Coley and I came across a poll (partially shown below) that was submitted by a parent in the Facebook group, which included "features" of the kids with STXBP1 deletions and mutations. This poll painted a very different future than the medical description. A future filled with laughter, music, picnics, rivers, lakes and oceans. Of course, there were some terrifying and worrisome "features" included in that poll too, but when I look back at it now, I can't help but stop and focus on the most common and the most applicable to June: angelic / happy / peaceful personality

I look at that, I look at June and I realize: That's all I need to know.

 
IMG_9739.JPG
 

she will overcome

A few weeks ago, Coley and I took Juniper to Dr. Luke's office. We loaded her up in the (fucking) mini-van and nervously drove across town. She sat in her car seat quietly, pliable and compliant as always. Upon arriving at the typical corporate park office building and entering a small, claustrophobic waiting room, we were greeted by the expected tech with a clipboard. Coley filled it out quickly (the woman writes faster than I can type) as I tried to entertain June with water fountains, posters and strange sounds. June may have been entertained, but I was distracted. 

Moments later, we entered a room that introduced both the comfort of space and the discomfort of difficult memories. It was twice the size of the waiting area and resembled a hospital room. My mind condensed into sharp, jagged edges. I remembered watching the seizures on June’s first EEG. I remembered all of the unsettling unknowns. I remembered standing at the foot of the steep hills in front of me. Here we were, around a year later, back for another EEG, except this time we were on a different side of discovery. Last time we were looking for seizures to give us answers, but this time we were looking for a clean scan. We needed a clean scan so badly. It would mean that she had grown out of her seizures - for now, at least.

We laid June down on a stretcher in the middle of the room and focused on trying to make her comfortable. She needed to sleep during the session to ensure seizures were not haunting her dreams. This EEG tech was quiet and focused on fine motor tasks. She applied glue to June's fine hair. Juniper expressed her disapproval with a few furled facial expressions, but was relatively still and compliant. The tech plugged the computer into her like she was a power grid. Each lead following a colorful trail from June’s brain to a small computer, and feeding lines to the connected monitor. 

Shortly after plugging June in, the tech left the room. Coley began feeding June a bottle to get her into sleep mode and I walked over to the monitor. I sat behind the hushed glow of the computer screen in a state of quite, escalating anxiety like a student studying feverishly into the night. I was looking for the familiar, harsh, serrated lines of a seizure pattern on the EEG. I was looking for the machine to jot down more turmoil for the future. I was looking for the words “rhythmic burst,” but they didn’t appear. This time, the lines were calmer and more consistent. It looked like a normal resting heart rate, as it slowly, but steadily scrolled across the screen.

About twenty minutes passed and it all remained the same until the EEG tech re-entered the room. June was awake now and she moved her eyes from side to side, always aware of her surroundings. “Just a few more tests now,” the tech said to Coley and I. She blackened the room again and began navigating with the computer mouse.

Suddenly, a lightening storm swelled just above June’s head. An updraft surged, as crystallized droplets became positively and negatively charged. Blinding lights began to flicker and flash. The room felt like the inside an old school copy machine, then the den of a death metal disco as the phosphorescence changed up pace. The lights bathed us in sparks of electrostatic discharge. It felt like Juniper was drawing in all of the energy of the world, as she lie still in front of us. 

I worried that the lights were triggering seizures. That’s what they were intended to do. The dark was all too often for me to see her physically twitching and quivering and the tech had turned the computer monitor away, so it was up to my mind to fill in the blanks. I filled them with fireworks of excessive, synchronous brain activity - worries of seizures that might be taking place in those very seconds. My little girl’s life literally flashing before my eyes. Had she been having seizures in her sleep all along? Had I failed her by not noticing?

June did not have a seizure that day. Better yet, based on the results that came from this testing, Dr. Luke believes it is possible that she may have grown out of her seizures for now. We have a plan in place to soon ween her off the Topamax and move on from there. There are no guarantees that her seizures won’t come back to haunt us all, but I’ve heard it said that there are no guarantees in life. There are no gaurantees, but all that matters is today.

Today, Juniper is seizure free.

video password = juniper

 
 

the new normal

Normal is such an odd word - a weird, strange and foreign word. The dictionary has a definition for normal, of course, but there’s really no way to define it. We can’t say what normal is, what it means or how it feels. We can’t, because it’s not consistent across time or place. Our world is constantly changing. Our cultures and communities are constantly changing. In a way, change should make normal irrelevant, because the very notion of normal implies a state that is standard, usual or expected - which change would impede. 

Becoming a father, and particularly having a child with what many call "differences", has helped me to challenge the concept of normal in my own mind. The changes June and Laurel have brought to my life have helped me overcome a subconscious attachment to normality and to see beyond it. Not only can normality not exist in a world of change, but it should not exist in this world at all - because normality is dangerous. Normality perpetuates categorization, discrimination and exclusion. It keeps us in the cages and containers we think we should stay in.

When the girls were born my life changed in many ways. At first, it seemed as if there would be what many in our society refer to as a "new normal," for me and my family. But when I began to dissect all of the monsters and make believes of parenthood and I watched life unfold in a different way than I expected, normal became a more aged concept to me. When my girls were born, there really was no new normal for me and my family. It seemed as if there was something different - something so magically and wonderfully different.

As time has passed, I have realized that there isn't anything normal about my life anymore and, really, that there isn't anything different either. When we let go of "normality," we also inherently let go of "differences." Our world is all a cycle of the same elements: A river moves into a waterfall and back into a river. In this world there are no handicaps, no deficiencies, no prejudice, no judgement. Normality and differences are ghosts of the past. 

 

clapping with one hand

Juniper recently discovered her hands and she now studies them intently. She often moves her hand through the air slowly, catches it in her peripheral and then fixes her eyes on it, concentrating carefully. In these moments, I see her connecting her internal world to the physical world. I see her turning the flesh, the bone and the blood in her tiny hands into something more than what most people can see. She sees her own hands differently, she sees the world differently - and I think this is partly because she spends more time with things, she notices things, and therefore understands things more than most of us. Juniper let’s go of the noise around her to connect with the true source of sound.

I find myself studying my own hands now, occasionally. I look down at my jagged fingernails, which have been mangled by the pins and needles of anxiety. The leftover scraps of dirt, blood and paint bending into small, shadowy serrated sickles. The contrasting cuticles cranking out new keratin on the conveyor belt. I look at the many wrinkles that have been carved out by time. The scars from planting trees, building things, burning myself on stove tops, slingshotting a pencil into my hand when I was a kid. The faint blue color of blood in my veins mapping movement into my fingertips. My palms folding out into a field day for fortune-tellers: The lines of the heart, the head, the life and the fate winding, weaving, curving and crossing paths.

I, myself, I can see the future in my hands. I see more dirt in my nails from planting in the garden with Laurel and June; from teaching them how to grow flowers and vegetables, from showing them tiny ways to make the world more beautiful and sustainable. I see more paint in my fingernails from painting; from brushing oils, acrylics and watercolors onto canvas with my little girls, from teaching them how to create new little worlds to live in. I see more blood in my fingernails from working my fingers to the bone; from sitting at a desk for days and days and from standing up for my girls, from doing everything I can to break the backs of the beasts that burden us. 

I can see my fingertips swollen from committing the crimes of the creatives, from dog-earing pages and from spending too much time in tubs. I can see scars forming and fading as I build toys, tepees and tree houses. I can see new wrinkles rising and sinking into my skin as time moves on. I can see my veins and the maps they make for us move into my fingertips, to point my girls into the best directions I will know of. The heart, the head, the life, the fate in my palms connecting with Laurel and June as we hold hands. As we hold the hands that we've studied all along, the hands that tell our stories.

There is something else we must think of, as we study our hands. There is a Zen saying that has always meant a lot to me: "To hear the sound of one hand clapping." Shunryu Suzuki, a Sōtō Zen monk, elaborated on this concept: "If you clap with two hands, you can hear the sound. But if sound did not already exist before you clapped, you could not make the sound. Before you make it there is sound. Because there is sound, you can make it, and you can hear it. Sound is everywhere." So, you can make sound by holding out one hand, because sound is already there. You can clap with one hand.

June and Laurel, when you hold your hand out in front of you, you must know that you are creating a sound that the universe has given to you, a sound that the universe can hear. When you hold your hand out, and you are clapping with one hand, don't try to listen for the sound, because it is already there. If, if, if you do not speak verbal language I am capable of understanding in the future June, I will still know when you are speaking to me. When you look into my eyes, when you move your mouth to respond to me speaking to you, when you hold out your hand and study it intensely, you are speaking to me.

Girls, the universe will document your story and give it to you to revisit in many ways. It will give you many things to learn from. It will give you everything you need and all you have to do is notice it. Hold out your hand. It is right there in front of you.

loss

I lost a great friend this last weekend - a friend, a mentor, a father to me. He died near Sunrise Boulevard on the shoulder of the Florida turnpike. He was riding his motorcycle with his wife and good friends, when a pickup truck veered onto the shoulder and hit all four of them.  He died right there, that night, on the highway. He died doing what he loved with the people he loved. The scene has driven deeply into my mind many times since I learned of this, despite not having seen it. I just can't seem to shake it. I know how much he was loved by his wife, his daughter, his family, his friends, and by me. 

The last time we spoke, we talked about the things he was planning, for the future. He wanted to move down to South Georgia to spend more time with his family. He wanted to start his own business. He wanted to ride his bike off into the sunset. He wanted to live a long life. He was always planning something. He had so many great ideas that he often hid from the rest of the world, for some reason. I know that so many of them, that he never shared with anyone, died right there with him on the highway. I hope the universe will find its ways to keep them alive.

Over the last decade or so, he and I spent a lot of time in the Dekalb County Farmer's Market cafeteria talking about spirituality and religion, debating over politics, digging deeply into the inner workings of the human mind. I told him about all the things that I had trouble coping with and he gave me comfort. He gave and gave and gave. That was the kind of person he was.

He was a Christian and he believed that he would be going to heaven after this life. I have my own beliefs which differ from his, but I'll tell you: I know he went on to his heaven. He is in the place he knew he would be: In South Georgia with his family, running his own business, riding his bike, and kissing his wife and daughter to comfort them. 

Hawk, if you can hear this, I miss you, man. I miss your brilliant sarcasm, your quick wit and your kindness. My beliefs are different than yours. You know this. There is no heaven waiting for me, but you and I both know we are connected and will be forever, regardless of place and time.

On the day I learned that you died, I was walking in the woods with Coley, Juniper, Laurel and Townes when we ran into a neighbor. She told us of a family of hawks that was nesting nearby. She told us that the father was out on a limb, watching over the woods, protecting his family. Perhaps that was your ghost looking after all of us - I have to believe it.

You taught me many things throughout our time together. You taught me about the importance of hard work, humor, family and friends. And now, old friend, you have taught me that life is just short enough for longings. I’ve tried harder to live since your death. I’ve tried harder to live.

Rest in Peace, Hawk.

the splice: installment three

Throughout the girls lives, I will occasionally write about my experience during the day of their birth, from different perspectives. In previous posts, the splice and the splice: installment two, I began that journey. Below is the third installment.


Somewhere in my mind, lay the things I did not think of. The things I could not think of: the depth, the breadth of the happiness and heartbreak ahead. The baby belly laughs and bath time. The bursts of brainwaves on the EEG. The phone calls from family that passed along kisses to you. The phone call from the pediatric neurologist that sank its teeth into me. I didn’t think about the things you would give to me or the tears I’d have to hold back for you. I couldn’t think about gaining so much or losing so many things I never had. I didn’t think about my heart expanding and all my organs losing gravity to clog up my throat. I couldn’t think about what would really happen after you were born.  I could only think of the details around me that were unfamiliar, like I was to myself at the time - the things that represented me in a way.

I thought about my Canon EOS Rebel T6i camera. I thought about adjusting the aperture or the ISO settings instead of leaving it in automatic mode. I thought about how the battery strength indicator on the camera didn’t support the generic batteries I had purchased from Amazon. How would I know when they were going to die? What if I missed a meaningful moment because I had decided to cut corners or save a few bucks? I thought about the memory cards I had stored in compartments. They, themselves, ready to store so many memories of you. But what if they didn’t have enough storage space left to create new memories? What if I didn’t have enough left in me?  I couldn’t think of it. I focused on the cards themselves. Some 16 gigs, a few 64s. Black and blue with white letters: Sandisk, PNY. Then I focused on the camera itself, but I didn’t know it well enough as I had purchased it so recently to capture your lives.

I thought about how my glasses kept fogging up because of the goddamned SARS mask they made me wear. I kept pinching the wire that was clinching my nose. I was breathing hard and heavy at this point and the condensation in little bits of breath clung to the lenses like blood to a blade. The water molecules moving from vapor to liquid to solid over and over again. I couldn’t see clearly right then. Everything in front of me was blurry, no matter how often I tried to wipe it clean. I couldn’t read the letters on the IV bag hanging over your mother. I couldn’t see deep enough into her eyes as the anesthesiologist administered the epidural. I couldn’t see what our future might look like. I couldn’t think of it. Instead, I used the thin, coarse fabric of the cheap, hospital-provided scrubs to clear a path and I focused on physical details in the room as best I could - until one of the very things that had kept me alive, the air from my lungs, obscured my senses again.

They moved your mother into the room where you would be born. I waited in the hallway outside and felt like a school kid being punished. All of the knowledge and the novelty, the passion and the permanence, on the other side of the wall. I couldn’t think of it. I focused on the nurses, the techs, and the surgeons, diligently washing their hands. I focused on the hands of the surgeons and proceduralists as they washed them - trying to think of the things they did when they weren’t carving into people.  There were wrinkles, small, faint scars, pedicures, and fingernails mangled by stress and time. I imagined the obstetrician that delivered you, Dr. Johnson, in a garden at her large Georgia plantation home - growing things like your mother had grown you. I imagined the hands of the RN first assistant wrapped around a liquor bottle the night before, now compromising her judgement and precision. What if she made a mistake cutting or suturing your mother's flesh during the procedure? I couldn’t think of it. I looked down at my own hands and remembered placing them on your mother’s stomach as you grew inside her womb. No one's hands were familiar.

Then a nurse called me into the operating room. I glanced around, and quickly noticed that it was full of instruments, lights, clocks, monitors, machines, metals, thin, blue fabrics, and people. Again, my attention turned toward my camera. I snapped a few photos of your mother. The corners of her eyes were red with blood, like a subconjunctival hemorrhage - from all of the pressure, love and tears. I knew she was excited and terrified, like I was. In between pictures of her, I snapped one of the floor just to make sure the camera stayed on it's toes. In the moments before you were born, I looked at the photos I had taken of your mother on the small digital camera screen and noticed the photo of the floor. I didn't delete it. The focus in the photo was on a metal bar that supported the bed your mother laid on. The metal was badly marred by harder metals and the fingernails of women. Or perhaps, these scars were from supporting so much life and death. I couldn't think of it. I advanced to the next picture on the digital screen and then looked back up at your mother.  I sent all the love I could to her, as we locked eyes for the last time before the splice.

"Here they come," said the anesthesiologist at your mother's other shoulder. I stood up and peered over the thin, blue curtain. My knees felt weak and unsteady, until they locked into place as I saw you come into the world. Every detail of that morning had felt so terrifying and unfamiliar, but it was all so clear and visceral now - because there, in front of me, was everything I thought of, everything I could think of: the depth, the breadth of the happiness and heartbreak ahead.

baobab trees

Coley is out of town for work this week and that has left me with no time to write a post for this blog.

So, here is another piece that I wrote to the girls - this one written when I learned Coley was pregnant.

"Oh,
The places we'll go.
A step back into childhood
One forward into the unknown.

My dreams are filled with the tiny things
The future has in store.
Like bedtime stories every night
And the places we'll explore.

The tops of mountains
And the depths of seas
All folded in the pages
All building into memories.

Outerspace awaits us -
Nothing is too far!
We'll explore the forests
Where the wild things are.

We'll make green eggs and ham,
We'll climb the baobab trees.
We'll go to where the sidewalk ends
We'll set the seagulls free.

We'll fix all of the automatons
We'll let the giving trees grow
We'll feed all of the hungry Caterpillars.
We'll run with the basselopes.

On the terrible horrible no good very bad days,
We'll help each other through.
I'll love you forever,
I'll love the little ones too.

There are so many adventures ahead of us,
Waiting inside the womb."

the teachings of rajneesh

Indian spiritual guru, Rajneesh, had many intelligent and often controversial ideas. Among them, his own Ten Commandments, theories about ego and the mind, and teachings on the power of meditation. His legacy is said to have been "liberating the minds of future generations from the shackles of religiosity and conformism." Despite being seen as one of the most controversial spiritual leaders of the twentieth century, he often delivered sound advice. For example, one of his Ten Commandments advises, "Do not swim - float," and another "Do not search. That which is, stop and see."  These concepts resonate with me.

Rajneesh emphasized “complete inner freedom and the responsibility to oneself, not demanding superficial behavioral changes, but a deeper, inner transformation.” He recognized that the mind is structured to look to the past for primitive survival purposes, making it difficult for us to concentrate on the present - where happiness and life reside. Again, I draw inspiration from these ideas.

Rajneesh; however, also delivered some misguided, dangerous advice, in my opinion. For one, he advocated that "material poverty was not a genuine spiritual value," and supported materialism as the self-proclaimed "rich man's guru." He wore handmade watches and was known to have driven a different Rolls-Royce every day for a period of time. This makes one wonder if he might have been exploiting his audience and the very concepts he advised on. I certainly don't agree with embracing materialism and I question spiritual leaders who do. To me, this seems contrary to teachings of inner transformation.

Of all Rajneesh's teachings, one set of ideas now sticks out to me, like a sore thumb caught in a fucking blender. Rajneesh advocated for “euthanasia for the crippled, blind, deaf and 'dumb' children” and for genetic selection. If you know the story told on this blog, it should be obvious why this topic is worthy of my attention.

There is one part of Rajneesh’s argument here that I agree with: overpopulation is the root cause of much of our suffering. Overpopulation leads to more people than resources, more competition, more conflict, more war, more suffering.

If we could stem the population problem, we wouldn’t have to pilliage the earth for resources, destroy one another to fulfill basic needs, obsess over positions of power or “create” jobs that serve little value to the world. Overpopulation has to be dealt with in some way if we are to survive. I believe in education and prevention (after having twins unexpectedly, I immediately pursued a vasectomy). Without getting too political, I also believe in the power of choice for men and women during pregnancy - for all, not just fetuses with differences. 

The part of Rajneesh’s argument that I cannot support is the targeting of children with special needs or with a different genetic makeup. In the past, I might have understood his logic, to some extent, but now I cannot accept it. And that is because I am now informed and enlightened in a way that Rajneesh and I were not in the past. Rajneesh contradicts his other teachings, as having special needs should not prevent one from having a spiritual self, from meditating and from having a beautiful, uninhibited soul. Children that are born with differences don’t have to suffer. The people around them don’t have to suffer.

In fact, these children, these people, can add tremendous value to the human condition. They can teach us all that we need to change what we see as important. The things we often define as progress and advancement in today’s societies are often misguided.

Too many of us plant flowers in our yards to impress our neighbors, rather than to enjoy the profound impact they can have on our senses. Too many of us buy and build houses, rather than homes. Too many of us explore the world through the internet, rather than in nature. Too many of us look at the clock often, but forget to live in the present moment. Too many of us take jobs to make money and spend until we are broke, instead of just getting what we need and stopping there. Too many of us “demand superficial behavioral changes, rather than a deeper, inner transformation.”

There is so much that blind, deaf and special needs children can teach others that see themselves as “normal.” Too many of us see these children as “challenged” or “disabled.” Please understand that viewing others this way cripples you. The mentality disables us all. It prevents us from focusing on the value of the soul as a sense in itself - even more important than our tangible physical and intellectual senses. It challenges the very meaning of our existence. 

So, Rajneesh, if I could go and whisper into a flame that would re-ignite your ashes, I would tell you that I think you are right and that you are wrong. Then I would tell you that there is no right or wrong, only existence and experience  - and I am sure you would agree with that. 

And if your spirit was transferred into another body as you believe, and if that body was allowed to be born with a different genetic makeup than most, I hope that you are happy and that you are more enlightened than ever before.

forever and a day

When Coley and I found out about Juniper’s genetic makeup we were told that she 'would most likely' require care for the rest of her life. Which, of course, meant that we may need to care for her for the rest of our lives.   

Of all the pills I had to swallow to cope with the reality of my new future, this one was one of the toughest. It was the one that got lodged in my throat and poked at my insides. The one that felt like it was blocking my airway, blocking a pathway. The one that made me feel like I was holding back vomit and tears. 

I was raised in a culture that tells us to work our hands to the bone and expect a payoff later. That was supposed to be the promise of the American Dream: Work hard and suffer now and there will be peace and rest later. It’s OK to stay in the dark, because there is light at the end of the tunnel. We created social security, senior citizens discounts, pain pills, heaven, retirement - all as ways to make peace with the social and psychological suffering we must endure throughout our lives.

“So, pick up heavy bricks or a heavy pen and get to work,” they tell you. “Get your hands dirty.” And I did just that (well, a touch screen instead of a pen, I guess). I got to work. Coley and I both started working administrative jobs right out of college. After spending four years in school for psychology we did what the majority of psychology students do: We got jobs in completely different fields. I took a position as a technical analyst (still don’t know what that is supposed to be) and Coley took a job as an account manager. 

Since then, I've worked eight to nine hours a day for thirteen years. I've put in all my cards, marbles and cents to squeeze the pennies out. Over time, we’ve done well from a financial perspective, but this kind of “progress” always comes at a cost. Politics and logic had already taken most of the relief I hoped I'd get later, and it's only a matter of time until it's all gone. All the while we've kept a roof over our heads, but how many roofs have we sat on to watch the stars?

As I processed the idea that Coley and I may need to take care of Juniper for the rest of this life, over time, I have realized that the idea was a pill that would be hard to swallow indeed, but it wasnt just a pill. It was medicine, and it was just the medicine I needed. Life takes a lot away from us. As a parent, it might even feel like it takes away your kids one day (I know my mom would say this).

Spending time with my girls is a gift. Quite the opposite of taking something away. I just want them to be happy, with or without me, for forever and a day.

 

 

your bones and hair

Happy first birthday girls. I wrote this to you the night before you were born.

”My mind is racing in this place.
I feel the fear that only love weaves.
Everything is building as nature intends,
as the trees outside grow their leaves.

Heart rates race to the finish line
New blood rushes in to carry you through.
Courage climbs into the spine,
Organs form and function just for you.

Chemicals swell inside their cells
The lungs dig into the air.
I think of all the ultrasounds
and of your bones and hair.

Houses turn into homes,
Sparks of life in every room.
Your mother sleeps beside me now,
You both inside her womb.

Soon to be born into the splice
To live against the grain,
The pressure builds around us all
And deep inside the veins.

My mind is filled with tiny things
Growing before my eyes.
I set the clock to wake myself
And time begins to fly.

The months and years are far too short
But now the days are long.
I'll spend all of mine with the two of you
Right here where I belong.”

 
 

slow moves

Sometimes we forget that we control time. We can control it, because we created it. The clock's face is our face. The clock's arms are our arms. We can use them as an embrace or to wage war.  In a sense, we are time. Just like an artist can become his art.

We can't "lose time," but we can lose ourselves. There is no "race against time," we are racing against ourselves. Nothing is a "matter of time," it's a matter of you and I. You can't "buy time," but you can buy people.  Of all of the idioms about time, the one that can have the most harm, perhaps, is the phrase "time heals all wounds." Well, brothers and sisters, I'll tell you that it doesn't. We heal our own wounds.

When we are wounded, time can actually work against us. It can make us bleed out, deprive oxygen from our brains, let bacterias and cancers spread. Time can even work against the deepest of wounds, the ones that have nothing to do with flesh and bone. Time can create a bleak future of loneliness, failure, suffering and death. It can bring about the metals and materials, the bricks and bolts, the nick knacks and nails for jails and homes and coffins. But remember that we build all of these things ourselves, really. 

I look at my girls, and time changes shape. I change shape. Maybe it’s because there isn’t a clear beginning or end anymore. Did the clock start when I was born or when they were born? Does it stop when I die or when they die? Maybe it doesn’t matter. I look in the mirror with a clock behind me. I notice that the arms of the clock move into the future. If I am time, then I am the future. My girls are the future. We are the same.

I look at June. She moves so slowly. I put an object in front of her and she will study it for a moment. She’ll reach out, slowly, to touch it. Sometimes it takes ten seconds for her to move ten inches forward. She slows down time more than anyone I’ve ever met. She seems to understand that she can control it. She is not rushing through life, she's living it.

Just look into the mirror, take a deep breath, and slow down for a few seconds. Feel yourself take control. Or come on over and spend some “time” with June.

You’ll understand. 

steps in the right direction

“The average moderately active person take around 7,500 step/day. If you maintain that daily average and live until 80 years of age, you'll have walked about 216,262,500 steps in your lifetime.” (snowbrains.com)

That’s a lot of steps.

At 11 months old, neither Juniper nor Laurel have taken a single step, unassisted. They have so many steps ahead of them. Some of those steps will be giant and some will be small. Some will come easy and others will be hard.

I’ll do my best to be there when they happen. I’ll be there for all of them - another pair of footsteps beside theirs in the sands of time. And I won’t be the only one taking steps with them. There will be many footprints and paw prints with them along the way.  

They say it takes a village to raise a child. It really does. I can’t raise these beautiful little girls alone. Coley and I can’t do it alone. Our job is to build a community around them of people that are willing to walk in their shoes. To find people that have the positive energy they need to project them forward.

That can be a hard job for a parent, because there is a lot of bad noise out there to trip over. It can be hard to filter out the energy in this world that isn’t helping them along. As a parent, you have to know when to change directions for the good of your child. 

Coley and I recently made some changes that have shifted the energy of our home in a positive direction.  

  1. We got an Occupational Therapist (OT) for Juniper to help her with fine motor skills. The OT came as a recommendation from out Physical Therapist (PT) and now the OT and PT will work together to help Juniper get started on the many steps she will take.
  2. We got a new nanny that has already shown so much love to our girls. We have had her in the house for just two weeks now and she already feels like part of the family. We’ve even planned a family trip to the desert for March and she will be joining us.
  3. We have had the opportunity to spend a bit more time with the girl’s grandparents, aunts and uncles who all bring extra love for the girls.

It feels good to surround the girls with love and support. Both Laurel and Juniper seem to be responding to changes. It feels like they are in the cusp of something. We can all feel their energy swelling. June will crawl soon and Laurel will take her first steps.

With a half billion steps ahead of them, we all have a long way to go, but together we will get there.

I have decided to try to help others as others help me and my family. I have started a toolkit that I’ll be adding to throughout the years. If you follow our story and you have twins and/or a child with special needs, I hope you find the toolkit useful.

  

roller coasters

“Life is just a ride,” as Bill Hicks used to say.

I believe it. It’s just a ride. It’s a tilt-a-whirl at times; a ferris wheel, bumper cars, a carousel, a scrambler, a tunnel of love. It’s not just one ride in fact, it’s many. And you get to pick which ones you get on, for the most part. You can even choose to stand by and watch others ride their rides, while you sit on a bench and stuff your face with a funnel cake.

When you’re ready, you decide what you think looks fun, you stand in line, wait your turn and then you sit back and enjoy it. Take your hands off the safety bar even, if you really want to live it up - let go of control for a little while. You can be a slave to the machine or free yourself from it and live your own experience. Either way, the ride will continue until the operator shuts it down.

Just as with everything in life, parenting is just a ride. For me, it started as a free fall. In the beginning there was stillness, a slight breeze, anticipation. And then, the bottom dropped out from under us. My mind suspended in each second as my body kept moving. Some organs falling faster than the others. My heart and the stomach, floating at a slow drip. My lungs moving too fast for the air around them.

I’d strapped myself in, given myself an impression of safety, but as I fell tragedy still lurked around in the corners of my mind. It’s there on all great rides, I guess. You can’t truely live without a chance of dying. “The sweet ain’t as sweet, without the sour,” as they say.

Fatherhood came at me with full force, right out of the gate. In all of the blur, I remember that feeling one gets when wanting to exit the ride after it’s too late. Regrets wringing out the intestines. The fear that everything would break apart because some alcoholic carnie had botched the assembly in a fiendish rush to get a fix.

When I was younger this ride would have been easier, but I’m old and tired enough to have a weak gut now. I don’t ask enough questions and I question others too much. It’s harder now. I take it all too seriously.  

But it was when I was nearly pinned down to the floor of it, that the momentum shifted. I bounded upward. All the parts and pieces came whole again, launched forward with elation. A silly grin on my face, as I realized that being a father wasn’t a free fall at all for me, it was a roller coaster and I’d already gotten past the deepest of drops.

I raised my hands above my head, at the risk of looking like a lame ass. I took photos of all of the smiling faces around me and posted them to social media feeds. 

It turned out that I hadn’t ever known what ride I was standing in line for, really. I didn’t know if this parenthood ride was a free fall, a roller coaster, or a merry-go-round. I just stood in line. Sort of treated it like I hear Portlanders do and figured, “hey, if this line is this long, whatever is at the end must be good.” I talked to others in line and they would say, “yes, it’s a long line, it’s gotta be good.” They all had public expressions on their faces: trying to amp up the fun and tamp down the fear.

And I have to say, that while some parts have been terrifying, some parts have been fun, some parts have been monotonous, some parts have made me want to puke and get off the ride, I’m glad I set foot into the great mystery.

It’ll have its ups and downs, it's twists and turns, like most rides do. It might suddenly throw me for a loop here and there. And I don’t know how I’ll react to each change in direction. I can foresee happiness, pain, satisfaction, suffering, boredom, laughter, and joy. I can see all of the things that make life.... well, life. 

One thing that I do know about roller coasters, is that they are all too temporary. When you accept the fear and decide to have fun on them, they always leave you wishing they’d never end. But they all do have an end. It has to be someone else’s turn.

So, while I have the chance, I’ll be making sure the tiny hands in front of me are always in the air: full of fun and unafraid.

I brought them on this ride with me for now, but they’ll find their own rides one day.

you are my sunshine

“You are my sunshine, my only sunshine. You make me happy when skies are grey. You’ll never know dear, how much I love you."

"Please don’t take my sunshine away.”

I sat on the floor in the girl’s playroom and stared at a picture on the wall imprinted with those lyrics, as they expressed their old country roots. The typeface was bold and dark, like they sorrow that it spoke of. The words lie flat on paper that was purposely crumpled up for aesthetic purposes. Or perhaps it had been prepared for the garbage by someone like me - someone who had grown sick of sadness and grief. 

”Please don’t take my sunshine away,” I recall whispering under my breath, as I watched Juniper’s tremors. She sat, immobile, on dull tan carpet, as Laurel crawled around her exploring the room.

Nine months prior, when Dr. Luke  informed Coley and I of Juniper’s chromosomal deletions, I had grieved over what impact my daughter might have on my life. I actually worried that Juniper might hold me back, keep me from exploring the world. I worried she might not walk and I worried about how that could impact me.

Now, as I sat and watched her reach as far from her base of support as she could, to reach a shiny red bead necklace about a foot in front of her, my thoughts shifted: What if June doesn’t walk? How will that hold her back? Will it keep her from exploring the world?  Will she be able to find her adventures? Will she have the freedom to go wherever she wants to go? Right now, it is up to Coley and I to build a world around her. Will she ever be able to take the steps it takes to build her own? My thoughts had shifted from worrying about my own freedom being inhibited to worrying about June’s freedom.

I wanted so badly for her to be able to get to the baskets of toys on the shelves in front of her: the Leapfrog Shapes and Sharing Picnic Basket, the Chuckle Ball Bouncing Sensory Ball, the Baby’s First Blocks basket, the Baby Einstein's Take Along Tunes music player, the Fisher-Price Groove and Glow BeatBo Boogie doll, and the VTech Magic Star Learning table.

I wanted so badly for her to be able to get to the trails, the trees, the fresh air, the oceans, the rivers, the lakes, the tops of mountains, the depths of forests, the sand and the soil.

June’s physical therapist had recently said she was “...at a plateau with gross motor, for now.” When I looked at her with uninhibited concern, she had responded by reassuring me that everything was fine, “...as long as she doesn’t regress.” The word “regression” has haunted me all too often.

I sat and remembered the physical therapist’s words and I looked at those lyrics and I looked at June.

“Please don’t take my sunshine away.”  I whispered, as tears pressed against the backs of my eyes.

“Please don’t take my sunshine away.” 

the splice: installment two

I have decided that one of the things I want to do throughout the girls lives is write about my experience during the day of their birth, from many different perspectives. In a previous post, the splice, I started that process. Below is the second installment.

Experiencing the birth of my girls was one of the most complex experiences that I have ever had to process. Writing about this experience from different perspectives helps me process it, and I plan to share these perspectives with you along the way...


The Splice: Installment Two

She trembled violently, as if she were suffering from extreme hypothermia or heartbreak. Her eyes pushed out a few tears. I felt like I was drowning in them. I gripped her hand firmly and tried to hold it still. Maybe it would bring peace as the numbness crawled into her spine.

Then they took her away from me and dark thoughts flooded my mind. "Was she as terrified as I was? What if someone fucked up? What if she bled to death?"

As I waited, they had me sitting in a hallway that smelled like blood and cleaning materials. My stomach suddenly became impregnated with fear and the contents of it delivered themselves into my mouth. I could feel little pieces of food swimming in my saliva and taste the rot. I had no choice but to swallow it. I was sure the bastard janitors had spent so much time cleaning the floor.

I later learned that she puked too right around that time. Maybe we did it out of solidarity. Maybe it was the hundredth monkey. Hers was more warranted of course, caused by the epidural.

My head was swimming. "How did I get here? Have I been led down a narrow hallway that others had already walked down, suffered through, and bled on? Or did I come with the confidence I would need to carry-on through that colorized, stainless-steel panel door?"

She lie in a sterile, windowless, temperature-controlled room, surrounded by strangers and those she would soon love the most. So far from me, on the other side of the dry partition, composite wall. So far from Mother Nature and her trees, earth, doulas, and birth pools. The things she had wanted.

She had two fetuses and two placentas in her. The bottom one breech. She would have likely died a hundred years ago. I would’ve lost my whole family. Now the surgeons would carve her up like a murder victim, but then just sew her right back up alive like they had already done to millions of women. No big deal.

The girls would get a head start on life. "Or would they?" The surgeons would pull them out of Mother Nature, as they pulled them out of the uterus. Taking them away from her.

As a consequence the girls would have some trouble breathing due to fluid in their lungs. All of their organs and biological systems wouldn’t be fully developed yet. They would be deprived of immediate skin-to-skin contact for bonding. One of them would have to go to transition nursery for low blood oxygen saturation. We would pile on more interventions.

I was called into the room just minutes before the procedure. They lead me to the small stool next to her head, a blue surgical cloth hanging in front of us to block our view of the horror film that was about to play itself out.

Suddenly, the anesthesiologist looked at us and said, “here they come.” I stood up and peered over the curtain.

And there it was.

The most gruesome, shocking, beautiful thing I’ve ever seen. My eyes swam around the bloodbath - tried not to sink too deep. There was the familiar cast of characters: Lacerated skin, exposed organs and intestines, human beings covered in blood. A horror movie indeed.

But there in the blood, the flesh, the bone, the cut up tendons, all the difficult decisions, and the death I had in my mind...

There was life.


*This piece was originally written as a response to a prompt on The Five Hundred.  The prompt was: “Let’s get a head start.”  You can find that version here

pacifiers

I stir into a slumbered stupor at 3AM. The sounds of human needs ring out in the next room. I try to assemble myself to respond. Try to overcome the cloud of exhaustion and focus on where my feet hit the floor. One of my little girl’s is in her crib in the nursery and her pacifier has fallen outside of the cage I placed her in. She cannot reach it but she needs it to calm herself - to find peace, complacency and comfort. I stumble down the hallway. I do the best I can. I get her the pacifier. I have been biologically engineered to help her - to respond to her cries and try to find a solution. I pat her on the back a few times. I wish I could do better, but I’m tired. I wish I could cradle her and sing to her all night, but I just don’t have the resources. And sometimes it takes me much longer than I’d like to fulfill her needs.

If you have a child with special needs, this story often becomes a metaphor for how you get help in the beginning.

There are government programs that are designed to help children with special needs and their parents. These programs were designed to provide aide and assistance and were born out of true altruism, but they are resource and budget constrained. They often simply cannot help your child to the extent that help is needed. They can’t help you either. They become that stumbling, uncoordinated and exhausted resource that means well and will genuinely try to help - but the effort won’t be fast or pretty. Ultimately, government programs seem to slow down progress of special needs children, from my experience thus far. They just aren’t fast enough. They leave you waiting and guessing and worrying too damn much. They leave your child lying on the floor, still and silent, as you Google about and try to figure out what to do.

When we first learned about Juniper's condition, the patient representatives at the hospital introduced us to a government program was intended to provide us with everything we needed for Juniper. So we signed up and waited. And waited. And waited. And June didn’t progress much. In the beginning, the program became a pacifier in itself, for Coley and I - it gave us a 'perception' of peace, complacency and comfort about June's needs getting met. It kept us still and quiet, as we assumed they were handling everything.

Time passed. Weeks. Months. Then, one day, Coley and I decided we needed more help, more quickly. It was taking too long for the program to respond to June’s needs. They were stumbling about, disoriented and ineffective. A version of me, exhausted at 3AM looking in dark crannies for tiny plastic nipples without glasses.

We all have our pacifiers in life. We need them. They help us get by. But we also need to know when it’s time to let them go and do things on our own. Because letting go of all of our crutches and pacifiers help us to step forward and speak up for ourselves and for one another.

We sought out private therapies for Juniper. Since then, we have found a physical therapist that took June from lying flat on her back with severe torticollis and plagiocepholy to sitting independently and holding a crawl position for several minutes - in just six months. This was not the pacifier we had been used to - it was a restful nights sleep. 

If you live in Atlanta and you are looking for physical therapy, look to Sunshine Pediatric Therapy. Katie Roberson has pushed June’s heart into her arms and legs. She’s helped June find parts of herself that we had previously struggled to help her find. She’s helped open up June’s world. And I’m grateful to her for that.

What greatly frustrates me about all of this is that many families do not have the financial means to seek out private therapies. I worry about their little ones, lying flat on their backs with severe torticollis and plagiocepholy. I worry about them growing up and suffering the long term consequences of these kinds of conditions, as they go unaddressed.

This isn’t about medical intervention. It’s not altering who these children are. It sure as hell shouldn’t be about money or status. It’s about giving each living being the best possible life. It’s about people helping people. It’s simple. Let’s just help each other. These government programs are pacifiers. Politics are pacifiers. Perhaps we all need to let go of our pacifiers and grow up.

After all, we’ll all sleep better at night.