No time for a post this week, so I have included some pictures for your viewing pleasure.
Do you ever stop and think about all of the little things in life that you love? Many of us say “it’s the little that count,” but we really don’t ever fully stop and take an inventory.
Over the weekend, I was in the ol’ minivan driving to Ace Hardware and I realized something: Bluetooth speakers in cars are one of the best things that have ever happened to me. I can talk to myself openly and loudly while driving around and no one knows that I’m bordering on insanity. Everyone around me just thinks I’m having a very animated conversation on the phone. What freedom.
As I drove along, I realized that this small thing (talking to myself in the car) created a lot of joy for me, so I started to talk to myself about all the other little things that make me happy. I sort of created a mental spreadsheet of them.
Here were a few, from memory, in no particular order: talking to myself in the car, or in the shower, planting, cutting and arranging flowers, finding and listening to a new album, writing of course, the feeling of a cool breeze on a walk, the view from the top of a mountain after a hike, the smell of the ocean when I first get out of the car for vacation, enjoying the smells of incense, taking a warm shower on a cold day, coffee or tea, poking at wood in a firepit, playing ball Townes, spending time with family, sitting on the screen porch with Coley, holding and squeezing the girls, playing with the girls, watching the girls do anything, watching a good movie, a nice, deep breath, or the taste of a good pizza.
These are just a few things - most of which I can do any time. There is simply no need to have a bad day when I can be so easy to find so much good. There’s so much good in this world that often goes unnoticed. There’s so much peace we fail to pick up when we are pinned down by pessimism. I’m guilty of stepping over the small things - sometimes even stepping on them. I’m trying to change.
I’m trying to notice the very great, little things happening around me. Like when June looks at me and smiles. When she opens her mouth wide to mimic my excitement in seeing her. Like when she plays peek-a-boo with one hand or lays her face flat on the table when we say “night night.” Like when June chuckles or laughs or when she kicks her legs like a maniac as we chant “go June, go!” When she gives me a high five. Like when she puts her pointer finger in her mouth like she’s being inquisitive or claps her hands along with “when you’re happy and you know it.” When she lays her head down on my chest after I ask her to hug me or when she stares into my eyes. Like when she lifts her eyebrows just a bit to convey mischief or when she lifts up her tiny big toe. There are too many little things to count.
I’m trying not to miss the little things, like when Laurel reaches out to me and says “dada,” or runs across the room and jumps into my arms. Like when she asks to watch “babies” or “Moana,” or when she brings book after book for me to read. When Laurel reaches up and says “hold you,” or growls when I say “dinosaur.” Like when yells “Townes!” anytime she sees him, or when she screams at the end of “row, row, row your boat.” When she gives me a sass shoulder or a big smile. Like when she brings June a cup of milk or does sign language with her little hands. When she laughs, oh when she laughs, or when runs ahead on the trail. There are just so many new little things born every day.
All the little things make for big days - days I’ll never forget.
This week, June was fit for a Meerkat stander to help her be weight bearing in a standing position. The Meerkat is an intense looking contraption, resembling a restraint that might have been used in late 1800’s crazy houses.
June stood tall and proud as her physical therapist, Katie, directed her posture and the Meerkat sales rep fiddled with the fourteen gazilion adjustments. I was very impressed with the Meerkat and I am hopeful that June will benefit greatly from it. It offers the ability to change positions that will challenge her to work important core and leg muscles as she grows.
As I stood and watched Juniper standing there, in aided defiance of the laws of gravity, I pondered our intervention. It’s funny how we humans do everything possible to mold the world into what we think it should be. I will soon have ropes and straps holding both trees in the yard and my daughter perfectly upright.
Maybe this drive comes from a primitive source - the same need that we have when we need to fend off a bear attack. Or, maybe it’s from something for more dangerous - the desire to be dominant and superior.
As a parent of a special needs child, I deal with a constant mental juggling act: Am I doing this for Juniper, for myself or for our society.
On this day, as I looked at June standing perfectly erect and vertical in the Meerkat, I shook those thoughts. I knew this one was for her.
June will benefit from standing because it will help her walk and she will benefit from walking because it will help her find freedom. That is the key for me in solving the mystery of each decision: Will this help June be more free? If so, it’s the right thing to do. I can’t make her happy, but I can help her be free to find her own happiness.
Coley and I are super excited about the Meerkat. It’s wonderful to see people creating things to help others.
I asked the sales rep if they had a Meerkat with a remote control. He looked at me like I was joking. I was serious. He informed me that they couldn’t do that due to liability and insurance. When are we going to break down all of these barriers and just help one another in any way we can? I have plenty to say about insurance and liability...but I’ll save that for another post.
I've been very busy with work this week and haven't had time to write a new post, so I'll just share something I wrote for the girls earlier this year. Enjoy!
WHERE DO WE GO FROM HERE?
“Where do we go when we die?”
He paused to ponder the depth of her question for a moment, before replying.
“We go everywhere in between what is here, beautiful - we go into nothingness, into the void. Into everything that has ever decayed, dissolved, or been destroyed. We become ghosts that move in the air as doors close. The music in musicians that they never have the chance to compose. We become the magic that moves up the magician’s sleeve. The trips taken by luggage that is stored in the attic and never gets to leave. We become the hands of the clock that stop before it’s too late. We skip around fluffy clouds, come down to visit with the rain and then evaporate. We become all the itches and twitches and the chills that people feel inside. The decisions that are driven before two cars collide. We become the places people never go and the places they’ve never been. The premonitions, predictions, and predicaments people find themselves in.”
She looked at him excited and fascinated - and with that invitation, he continued.
“Little one, we become the lungs of fish and insects, the bones of invertebrates and the hearts of trees. We go into the medicine of the placebo, the healing of hurting and the cure for the incurable disease. We become the radio waves that travel through bodies and connect with machines. The deletions and mutations that can occur as chromosomes replicate their genes. We become the places between the here and the there. The places people make up as they say their prayers. We become black holes and white dwarfs, fixed or floating inside the fray. The things the blind can see, the deaf can hear and the mute can say. We move into the toes of worms that eat the dead and into the hands of birds. Into the pauses within conversations and the blank spaces between words.”
He watched the sense of wonder in her glimmer and grow, as he went on.
“We become all the change left in the piggy bank, little buddy, and the blank checks that never cashed. The pictures that were never taken, the cameras in the night that failed to flash. We become the echoing voices in valleys, the last mile to the peak we never hiked. The reasons for riots and rallies, the sustenance in stomachs during hunger strikes. We become the currents of dreams. The things that aren’t what they seem. We become the space between filaments and the fever in the frost. The homes of the homeless and the compass for those that are lost. We become the freedom inside the slave, the hope in the alcoholic’s empty flask. My love, we become the questions that cannot be answered and the ones we never ask.”
I missed the girls 18 month birthday last week. I know it may not seem like a big deal - it’s not an annual milestone - but to me, it was significant. I have to travel for work on occasion and this was one of those occasions. This time, I was gone for just two days.
The days are so different than they used to be. They are different because they come and go like never before. I used to spend entire days watching movies, playing video games or sleeping off hangovers. I’d waste them because I could always have them back. I could always do them over again. I wasn’t really losing anything by skipping a day here and there. Now, each day has something in it that will never happen again, something in it that I can never experience again. So, if I miss a day, I miss everything:
When I’m gone I miss all of crawling and walking and I miss one of them saying something new. Like June saying “ahhhhh” when she finishes a sip of water and Laurel saying “thank you.”
I miss them calling out “dada” when I’m not around. I miss them looking for me at home when I’m nowhere to be found
I miss them each wearing a new pair of jeans or Vans high top shoes. I miss Laurel shimmying to the Beatles and June learning the freedom to chose.
I miss June’s millionth raspberry and Laurel calling to her brother, “downs.” I miss the smells of both of them when I FaceTime from out of town.
I miss them stealing all my chapstick and capsizing boats in the bath. I missed being pulled into June’s eye contact and pushed out of Laurel’s path.
I miss Laurel walking in the garden and plucking flowers from the dirt. I miss June wearing her badass “never underestimate the power of women and girls” t-shirt.
I miss Laurel pouting and pointing at her itty bitty “boo boos.” I miss June performing as Scarlet O’Hara when she play peekaboo.
I miss the forts and the hammocks, the tents and the teepees. I miss painting outside the lines and pacing beneath the trees.
I miss shadow puppets at bedtime and books all day long. I miss screams at the tops of tiny lungs and singing children’s songs.
I miss them laughing and clapping at each other and I miss their synchronized cries. I miss them watching me walk away and I miss them saying “bye bye.”
I miss my family now. I miss my little girls. How can I spare another day to fly around the world?
Maybe it's a little known fact that Chris Cooper had a son with Cerebral Palsy. When I watched October Sky as a kid, I never knew that he an I would have such in common one day. We've both have lived in Holland and, for that reason, I know that we understand one another despite having never met. We understand one another and we understand something else that is very important: intelligence can be many things, far beyond the confines of our societies definitions.
I have no doubt in my mind that Juniper is very intelligent. She's intelligent in ways I don't even fully understand. So too are the many other human beings who are often discarded - by our societies limited views of intelligence - as having "disabilities" and "delays."
A new documentary film, called Intelligent Lives, has found a way to tell the stories of those who may have a harder time doing so on their own - not because of their own lack of intelligence, but rather because of other's lack of understanding. The film was made by Dan Habib. It is narrated by Chris Cooper and stars Micah, Naieer, and Naomie – "who challenge perceptions of intelligence as they navigate high school, college, and the workforce." Intelligent Lives "challenges what it means to be intelligent, and points to a future in which people of all abilities can fully participate in higher education, meaningful employment, and intimate relationships."
Coley and I have reserved seats at the UA Tara for a screening of this film on October 1. I look forward to watching, learning and connecting with it. I'll likely write a follow up after we see the film that you can come back and read in October, or better yet reserve your own seats or host your own screening.
Last Saturday, Coley, June, Laurel and I attended Epilepsy night at Fernbank Museum of Natural History. The event was put on by Children’s Healthcare of Atlanta. It included dozens of doctors and dinosaurs to explore. Amongst the highlights of the event were booths for equestrian therapy and seizure detection dogs, one on one meetings with local neurologists, free food (holy crap, the cookies), access to fernbank play areas and a building full of humans with epilepsy.
I learned a few things from the event. First, I had no idea going into this event that scientists had isolated three organic compounds present in the brain prior to seizure occurance that dogs can be trained to smell. I knew of the existence of seizure dogs, but had no idea how this worked. Fascinating. The thing I don’t fully understand yet is why we cannot isolate these and prevent seizures in our medical practices. I’m sure I’ll learn more about this later.
Coley and I spent about twenty minutes purusing the booths, picking up pamphlets and talking to the experts before heading to our appointment with Dr. Koh, Juniper’s new neurologist. As I mentioned in a previous post, unfortunately for us, Dr. Luke accepted a new position in Texas and we have to move on.
Our first encounter with Dr. Koh ( at the tail end of our last meeting with Dr. Luke) felt rushed and impersonal. This time, we had a chance to sit down with Dr. Koh in a less formal environment and get to know her a little better. This time her personality and level of engagement drew me in.
Dr. Koh is an older woman with a warm face and a relatable, humble smile. We told her of Juniper’s gene deletions and of her history with seizures. She expressed empathy and understanding toward us, excitement and enthusiasm towards Juniper.
While Dr. Koh gave us more hope than advice in our short time together, that is what we need more of right now. She expressed encouragement with Juniper’s progress and capabilities. She reached out to my little girl and June responded with her usual degree of deep, direct eye contact. I could tell Dr. Koh saw something special in her - this, above all, that told me Dr. Koh might be a good fit. She offered us one of her “secret availability“ appointments. We will see her again next Friday. I look forward to it.
After our appointment with Dr. Koh, we visited both the indoor and outdoor kids play areas at Fernbank. This was another world of heartbreak and hope for us. While Laurel ran around under tunnels and climbed up the slide, Coley held June up to play a small xylophone. June’s legs quivered as her knees and ankles locked in place. Her feet buckling with the weight of her small body as they slanted outward from hyperpronation.
I worried about her not being able to run wild on the playground and then I reminded myself that she was playing music. June is always playing music for those that choose to listen. She has something to teach us all that could only come in barely audible rhythmic melodies. The kind we seek out as we search for peace and understanding.
Someone once said: “Those who dance are considered mad by those who cannot hear the music.” June, don't worry little buddy, I’ll always find a way to listen and we'll always find a way to dance.
If you'll recall, we took a family trip to Disney World a few months ago. Overall, this trip was filled with good things and enlightenment; however, in this post, I'll plummet into the grumpy throws of pessimism to visit a few other observations (sorry Coley). Among the many things that stood out during our trip, was the reminder that realness can be hard to come by in this world.
As we walked to the conference room at Disney’s Coronado Springs Hotel where we were to meet 60 STXers, we passed by hundreds of business men and women wearing their best faces. I know the masks they wear very well, as I wear one all of the time. The business world doesn’t allow the real world in. There is even a whole team of people that get paid to keep the real world out, called Human Resources. Anytime things get human, it’s the job of Human Resources to step in and snuff it out.
As we walked through this business bubble and we broke through the other side to be greeted by a 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. All of it very real and happening in one of the most artificial places one could imagine: A business conference room at Disney World. It was such an obvious and interesting juxtaposition to me.
During our stay in Orlando, we visited Epcot, The Animal Kingdom and The Magic Kingdom. These places were built to nurture imagination and dreams within the minds of children and I remember the magic they gave to me as a child. Now, as I walked through all of the concrete and plastic buildings, the wires and metals of automatrons, Disney felt like a version of Vegas for kids. It’s a great place to nurture dreams and imagination, to indulge in our fantasies, but the real world is far more unpredictable and imperfect. In a way, the real world is more dream-like than Vegas or Disney.
As we walked through Frontierland one day during the trip and passed by Big Al and Liver Lips McGee from The Country Bear Jamboree. These bears look about as close to reality as any other characters I'd seen. Then there were Mickey, Minnie, Snow White, that lady from Frozen and the whole gang.
As we walked passed Frontier Mickey, I imagined a fat alcoholic on his last leg underneath the big ears, the blue jeans and the flannel shirt. I imagined a man who had been worn down by jobs, mediocre tasks, routine, depression, anxiety, survival, and a big heavy mouse suit in the middle of summer. I imagined a man who would go home and toss some tuna on the floor for his cats before heating up some for himself in the microwave on a paper plate. He'd be sliding his feet along the filthy laminate floor like he was trying to avoid stingrays, but it'd just be fatigue. He'd sit down at his T.V. tray with a whiskey and tap the buttons on the remote until he went beyond consciousness and along into another day where he'd spend his time carrying someone else's smile around.
In some ways, I imagined myself. I wear my own mask most days, like we all do. I walk around smiling with a bunch of weight on my shoulders. I act like it doesn't bother me. I play the part and post pictures on Instagram. And I don't do it for anyone else - I do it for myself. I do it so that I can look back and see life through it's filters. It's just easier that way. I'm not always living in the real world. I don't think most of us are able anymore. We are living in the Disney's and the Vegas' and the Instagram's out there that let us take it in little doses.
As we all walk through Disney World, we pass by hundreds of thousands of people. Some of them struggling, crying or dying. We don't even seem to notice. We just keep on walking, until we see Goofy's smiling face. We take a quick picture and we move on to a different place.
Gravity is never forgiving. It keeps us alive but keeps us down, ever dripping our drops onto this earth. I’ve noticed my throat sag from the weight of it these days.
Both gravity and time working together to rob me of my better physical attributes. I can feel them both gripping and pulling - pulling me forward and pulling me down, glueing my soul to the soil like Georgia red clay. Slugging along the grueling grind. It’s a heavy load that we all carry around as we are all dragged into our own prisons for our petty crimes.
I’m on the road again for work from time to time these days and I can feel it all happening even more, even faster. The harder the plane tries to escape the grip of gravity, the more I become compressed, confined, claustrophobic, contorted. I can feel the weight of it. I can feel my spinal column tapping on the doors of the past. I can feel myself slumped over in the hospital rooms, melting into the foam and vinyl chairs.
Planes and the hospitals feel similar to sit in. They give me the same feeling of suffocation. The feeling of being in a place I can’t escape with others controlling my destiny - my future seeming as if it’s been too planned, too calculated, yet too vulnerable.
Connecting to the world through an internet with too many restraints and restrictions. Surrounded by pamphlets about how to survive - instructions for what to do when things go wrong. Pamphlets I used to hope I’d never need. Pamphlets that talk about the things one might need to know when grieving a loss or crashing into the ocean.
Cartoons on screens in my peripheral - a stale portrail of fantasy lands. My eyes fixed on more real things though, like the people around me slouching or seizing as the world spins along. The surfaces of seats cleaned between the bodies. The baggage hanging overhead.
We are heart broken, goddamnit, but one day we’ll be on the mend. There isn’t a hospital or an airplane that can keep us down. There’s no weight we can’t carry. There’s nothing that can keep us apart.
Gravity will eventually carry us all to the grave, but it’ll be ok because I always make sure the last thing I always say before I take off is “I love you”.
This weekend Coley and I made a major life decision. Second only to the decision to conceive children, this decision was paramount - immensely life changing. It was the kind of decision that I may question over and over again, taking controlled breaths to keep a panic attack off my back.
This weekend Coley and I deleted all social media applications from our iPhones. I deleted all of them: Instagram, Facebook, Snapchat, all of them, even Amazon. I deleted every app I used more than 10%. I turned my iPhone X into a thousand dollar iPod with a built in phone and calculator.
It just got to us - the technology sucked us both in. Day after day and night after night, we sat behind glowing screens and withdrew from the physical world. That meant withdrawing from one another. I started to miss her as she sat right next to me on the couch and she started to miss me.
Coley came to me just days ago and told me about her brave, ambitious plans to hack society by deleting Facebook and Instagram. It was a bold proposition. I knew the consequences for such non-conformity. She’d risk “missing out.” It was only my love for her that had me follow her down that dangerous path.
Within seconds our lives were changed. We both pressed on the lighted screens in front of us and tapped the tiny X over and over until we found ourselves on the other side. We looked up and we saw one another. It sort of felt like the decision to leave a career because you know it’s not right for you. The feeling you get when you let go of something you’ve spent a lot of time with to focus on something better.
I still reach for my phone constantly and look at the screen. There is nothing there, so I put the phone down, I smile and I look at Coley, June, Laurel or Townes. There is something there - something far more important, intelligent, entertaining and beautiful. That fucking phone has wasted so much of my time.
So, you may have noticed that there was no update on Instagram this week to inform you of this post. Going forward you may not see updates any longer. You may have to set a reminder to visit rhythmicbursts.com every Tuesday morning for a new post.
If you are reading this - if you found your own way here - you are one of the reasons I deleted those apps. This post is for you. Thank you for taking the time to read this blog, and if you are in the Atlanta area, come on by our place and say hello - you’ll likely find me in the moment in the girls playroom, or on the screen porch listening to the wind and the birds.
I’m starting to wonder if perhaps we are born with capabilities that our cultures take away.
My little girls were born within an innate ability to love. I did not have to teach it to them. If I reciprocate that love, it grows, naturally. I do not have to guide their love, but rather react to it. I must not act as stained glass toward light, but as a mirror. I must not try to change the color or shape of their love, but rather match it. It is only when I try to intervene, try to have them compete or conform, that their behavior tends to become unbalanced.
I am not suggesting that I will turn to a form of more passive parenting. I do not believe it is our place as parents to simply stand by and watch our children grow. However, I do think it is our place to stand by and let them grow (and to let them grow at their own pace). Our children, each of them, individually, have reasons for what they do.
Laurel, for example, has been capable of walking for months now, but chooses to crawl. It is not a concern of mine that she is not walking at 16 months, nor will it be if she does not walk at 2 years. I do not try to push her.
She will walk when she is ready, and in the meantime she is strengthening many skills as she crawls along the floor. She is strengthening her arms, her hands and her fingers. She’s strengthening shoulder stability, prone extension, hand separation, hand-eye coordination, balance and core strength, among other things - all of which help promote sensory integration, fine and gross motor skills, body awareness and self-regulation.
It is a misconception in our culture that walking early provides an advantage. In fact, I have learned that children who skip crawling, or walk very soon after crawling, are generally presented with physical and sensory challenges later in life. Pushing a child to walk early can have negative consequences. It is a misconception in our culture that we must move quickly in order to progress. In reality, it’s quite the opposite. We must take heed to the simple lesson from the tortoise and the hare.
At 16 months, June hasn’t yet crawled. She has yet to access many of the benefits above that Laurel is busily acquiring. However, as she stays immobile, she’s also seeing the world in a way that many of us overlook. Coley and I, of course, keep her close to us, carry her, help her with some therapies, but when she is left alone, she’s left with her thoughts. Who knows what’s going on in that rare and unique, little brain of hers?
We all have our own internal and external worlds. We like to think that we expand our internal world by expanding the external. What if this is not correct? What if the monks are onto something? What if quiet reflection is the path to internal expansion and enlightenment? What if we, in fact, can only expand our external world by expanding the internal? What if our culture is embedding flawed ideas into our minds and leading us astray?
June may already be more enlightened than anyone I’ve ever met, because she often sits quietly and takes it all in. She lives deep inside the human mind - in places I can’t even access. While the rest of us stand in the shallow end, June floats around in the deep. I can see it when I look into her eyes. She can see further into me than I can see into her.
And in a way, for this reason, she’s always two steps ahead.
UPDATE: I wrote this post two just weeks ago and Laurel is walking all over now. She may walk for the rest of her life. I still have no doubt that she will benefit from all of her time crawling.
I wake up, take a look at Instagram: Everyone is happy, out there in the world. Gazing at sunsets from mountain tops. Exploring coral reefs. Peering at the halos of light on the roofs of caves. Jumping from waterfalls in Costa Rica. Fine dining in Italy. Clear blue waters in Thailand.
Thailand. I had plans to go there, just before the girls were born. I was going to drive on the left side of the road in Phuket. Breathe the cool mountain air in Chang Mai. Ride in a Tuk Tuk in Bangkok. See a new shade of blue in Ko Tao. But the trip never escaped the edges of my mind.
Now, I wake up and remember those plans many others I’ve had throughout the years. I drink a cup of coffee and go help Coley feed the girls their breakfast. We take a family walk in the neighborhood. We play with the girls. We work on therapies with June. We feed the girls lunch. The girls nap and we eat lunch, play games, watch a movie or look at our phones.
Maybe I check Instagram: Someone is driving an old VW van across Iceland. Someone else is in a biplane, circling over a volcano. Taking a pano of a mountain range. Looking down at their sandy toes on a bleach white beach. Standing at the base of a redwood, arms outstretched. Leaving footprints in the sand and the mud. Picking poppies in China. Climbing the steps of the great pyramids of Giza. Hiking to Machu Picchu in Peru.
Peru. Coley and I went there about a decade ago to hike the Inca trail. We visited Ollantaytambo and Winay Wayna. Climbed up into ancient agricultural wonders. Drank Chicha. Shit in holes in the ground. Sweated and froze. Gazed across the sacred valley at Dead Woman's Pass. Stacked prayer rocks on top of her. Made friends with lamas. Ate Peruvian palta rellena. Listened to natives speak Quechuan. Learned about the power of the Chakana.
Now, I spend my afternoons remembering those adventures. I hit the reset button. I drink a can of La Croix and help Coley feed the girls their dinner. We take a family walk in the neighborhood. We play with the girls. We work on therapies with June. We bathe them and feed them bottles. The girls sleep and we eat dinner, play games, watch a movie or look at our phones.
Maybe I check Instagram: A few cynical memes and news flashes. Another celebrity suicide with an inspirational quote. Images of burnt flesh in a war zone. Some pictures of people living in famine.
My life's not so bad.
“He’s on the spectrum.”
“Yeah, I think she’s on the spectrum.”
I’m hearing people say things like this more and more. They are referring to people with Autism, of course. It’s like there is a sudden epidemic of people expressing Autistic features. A growing army of impulsive, socially withdrawn people who exhibit inappropriate behaviors, refuse to make eye contact, and struggle to pay attention. But doesn’t that describe all of us these days, to some extent?
The general public now frequently uses phrases like “on the spectrum” to (mis)diagnose, categorize and ostracize people who need quite the opposite. Truth is, we are all “on the spectrum.” People with Autism are different than you are, but so am I and so is everyone else you’ve ever met.
I like to think of us all on a spectrum and I like to think of that spectrum as a sphere, not a line and not even a circle. This is because a line seems to imply that moving from left to right is a good thing, that there is an end and a beginning, a bad and a good, a lesser and a greater. A sphere conveys the opposite of these things. And a sphere can encompass many different directions, as to account for our many different objective and subjective senses.
We are all on this sphere-shaped spectrum. some of us excell in one plane, some of us more so in another. A deaf child may have a deeper sense of hearing and a blind child may be able to see things that others cannot. Someone who struggles with attention and cognition may be capable of creating things that make the world a better place.
When we categorize one another by perceived weaknesses, we make it far too easy to overlook less obvious strengths. We all need one another to be whole. When it is difficult to connect with another person, such as someone with autism or someone who does not speak language, we must not withdraw. We must see the opportunity in this challenge. Connecting with this person could open up a whole new world.
It is time for us to stop using categorical vocabulary, to stop using words like disorder and disease. When we use these words we emphasize just a few weaker qualities in people and make it easy for everyone else to overlook all of that person’s strengths. Meanness and misunderstanding are the trye “diseases” that need to be cured.
It is time to stop putting kids who learn differently in different schools and ignoring all that they could teach the rest of us. By separating children with special needs and special needs programs from the general public, we fail to educate the public on how innovative and amazing these kids can be. These kids have the potential to teach us more than we can teach them.
If we are not careful, we will continue to reduce ourselves into a tiny little box. If we are not careful, we will lose our sense of humanity. If we are not careful, we will lose our grasp on what is truly unique and innovative. If we are not careful, we will lose one of our greatest opportunities to learn. If we are not careful, we will fail to find the unexplored parts of our minds.
We'll all miss out on the hearing of the deaf and the vision of the blind.
A few nights ago, I was haunted by ghosts of the past. I dreamed that June had a seizure: A reminder that the rhythmic bursts I saw in her infancy will always be with me. They’ll always haunt me. They’ll always be crawling just beneath my skin, just beneath the covers. There are medications that can sometimes control seizures, but no (ethical) drugs that can control our dreams or our memories.
In my nightmare, her body became a victim, as the air around her worked to revive her with the gusts of an ethereal defibrillator. A ghost was shaking her violently with the measured beat of his heart. I could see her eyes very vividly in this dream. I could see them fixed on the ceiling and I could see the ceiling absent in her eyes - as if she were looking past it into heaven. She always looks like she’s in another place when she’s having a seizure. I always miss her. I’m always so afraid she will never come back.
Fear is the nightmare's natural instrument. It plays inside the mind. Sometimes in repetition, sometimes raw and sometimes it combines the two for something truly marring, something bone-deep. This nightmare was one of those for me.
It had been nearly a year since June last had a seizure and there, right before my eyes, she was slipping back into it. My heart was breaking. I had that same helpless feeling I’d had during the Myoclonic seizures of her infancy, only this time it was worse. Because my dream was one of those that feels like it’s happening in the present time, with all the past still attached. I could feel the great love she has built in me over the last year. The fear of losing parts of her was even greater than before.
I already knew it would be this way if June ever experienced seizures again. Something more would be taken away from me.
One of the most heartbreaking books I’ve ever read is called “Flowers for Algernon.” Like many others, I read it grade school. The story is about how much more difficult it can be to lose something you have, than to never have had it at all (skip the next paragraph if you’ve read it).
”Flowers for Algernon” is about an attempt to cure an intellectual “disability” and it’s underl message is profound. In the book, scientists inject a mouse with a new medication that increases its intelligence dramatically. With successful results, they then apply the medication to human with intellectual challenges. At first, both the mouse and the man excel intellectually. As time wears on, however, the IQ of the mouse slowly begins to wane. It becomes clear that the “degradation” will soon happen in the man as well. He will lose what he had gained. He must face the despair of loss, something he hadn’t had to face before the medication.
Juniper is my Algernon and it is love for one another that we have gained. In my recent nightmare, I was terrified of losing any part of our connection as her seizures continued to occur, uncontrolled. It seemed even harder to watch her seizures, even harder than before, because I love her even more. It's not that I didn't love her in her infancy. I did, of course, but not like I do now. Now, she's too much a part of my life. She's too much a part of me.
Your children start out as a product of you and they become a part of you.
Every little bit of Juniper and Laurel that I have fallen in love with is so important to me. I can't bear the thought of losing any of it.
I woke up badly shaken from my nightmare. My body had reacted by releasing sweat and adrenaline. I got up and peeked in on the girls. They lay quietly and peacefully in their cribs. Though they did not react to me and did not move, I could feel their presence in the room. I could feel all the love I have for each of them.
Seizure or no seizure, all the love was still there.
There is something special about digging up chunks of Georgia red clay and replacing it with rich soil to nurture a beautiful flower or tree. There is something special about caring for the plant and watching it thrive.
When I plant a tree, I know that I’ve given it enough fertile soil to get started, but I also know that it'll have to be strong - on it's own - as it grows. There will come a time when it's roots reach the clay. A time when it's outgrown the safe little world I've created for it. A time when it will have to carve out it's own path, despite the wasteland this world has to offer, despite the red clay restricting it's growth.
Just like I create an optimal environment for a new new plant, I hope to create a safe, nurturing environment for my girls to grow in as they get started on life. I hope to give my girls a good home and make them strong enough to keep growing when they go out into the world.
Just like my plantings, as they grow, my girls will face barriers. They’ll surely have their fair share of Georgia red clay to break though. Modern cultures have become aggressively selective filters. The lack of nutrients and room to grow in this world can cause us to wither and wane as we age.
A glass ceiling is nothing compared to a concrete floor.
When their roots reach darker depths, my girls will be ready and they will be strong. They'll crown the canopy and weather the storms. They'll carve their own paths into the earth and their own paths into the sky. They'll carve their way into it - through the clay, the drought and the pollution. They'll push on through.
And as their father, I will always provide sunlight for my girls. I'll be sure they can reach out and find more energy, more love, when they need it. When everything else around them is drained and void of nutrients, deprived of freedoms and forced to compete, I'll be there to cut it all down. I'll do anything in my power to meet their needs, because I'll have raised them from tiny seeds.
The great Taoist philosopher, Lao Tzu, once observed: “Those who know do not speak. Those who speak do not know.”
Wisdom often comes from quiet observation. When we try to connect with others, it is often our words that get in the way. Studies show that 93% of communication does not pertain to language and over half of communication has nothing to do with sound at all. It is quite possible that two people sitting in silence could connect and learn more about one another than two people who are speaking.
It is as if our minds are one-way pipes that only take in information effectively when no information is being pushed outward. In silence, there is constant intake. In silence, we are open and ready. When we do not speak, our other senses deepen. When we do not speak, the world around us comes alive. When we do not speak, we know.
As I have learned more about human beings like Juniper, who have been born with deletions or mutations of 9q34.11 (STXBP1), I have learned that over 95% of these beautiful humans do not speak common language.
So, it is possible that Juniper will also not communicate using the language that I use to write this post. She may not speak any language our current societies have recorded or recognized. But that will not mean, it does not mean, that she does not speak. If I were to assume that, then it would be clear that I am a terrible listener.
We cannot just open our ears to listen, we must open our eyes, our noses, our mouths, our hands and most of all, we must open our minds. We have been taught to understand things in a certain way. We’ve been taught a structured vocabulary. We’ve been taught definitions and categories.
We’ve been taught that a bird is just a bird. A bird has wings, feathers, a beak and bones. A bird is an endothermic vertebrate. A bird can fly and we cannot.
But when I listen to the bird herself, I learn more about her than I ever could from a book. I learn about the peace she has to share with me. She doesn’t use words, but I don’t need them to know her well. I see her wings in my own arms. I see color more than I see feathers. She sings a song to me and tells me of her beautiful children. She’s happy today, but she must remain vigilant. She sees me sitting near her, watching her. She notices my posture and she knows that I mean no harm. She moves on and, in away, I fly off with her into the sky.
In my own life, I have often connected more with animals than I have with people. Maybe this is because I am a terrible conversationalist. Maybe it is because animals, like my dog Townes, are easier to get along with than people. Or, maybe it’s because animals do not speak and that seems to make them more accessible.
Townes, for example, lays outside of the nursery as the girls sleep. This gesture tells me he loves them. He doesn’t have to say a word - we all know. One could ignore his actions, step over him and see him as just a dog. But he is more than a dog. He is a wise old man now. He knows of the incoming storm before I do. He is not burdened by the future or the past. He knows of the now. He knows how to express love. He just knows.
When I learned that Coley was pregnant, I expected to teach my little girls more than I’d learn from them. I thought I’d be telling them how to live and how to speak to others. I was wrong. What I now know from Townes, from Laurel and June, and from that bird is that wisdom never wants for words.
Last Thursday, Juniper, Coley and I went to our quarterly appointment with Dr. Luke. Lately, I get excited for these appointments (a stark contrast to the early days), because they are sprinkled with reassuring words.
Right now, at 15 months, Juniper is doing great! She will be seizure free for one year in a little over a month, she’s sitting up on her own comfortably, she’s very alert and social, she’s babbling a few syllables here and there and she’s tolerating a crawl position better and better every day. She’s even getting braver and showing more interest in exploration and adventure. She smiles and laughs frequently and most importantly, she still connects with me through her eyes in a unique, deep, special and spiritual way.
Upon entering the examination room, Dr. Luke showed us the same smile she'd been showing us for about the last 10 months worth of appointments. A smile of reassurance, encouragement and hope. She told us that June was continuing to exceed her expectations, as she handed June her reflex hammer. We discussed the pros and cons of weening June off the Topamax in July. This will be a tough decision: Is the Topamax hindering her development anyway? If we take her off the Topamax and the seizures reoccur, will the Topamax work again? There are no answers for these questions today. We must accept the unknown and go with our gut, to some extent.
Coley, Juniper and I sat together on an adult-sized examination table, as June ate Cheerios and Dr. Luke spoke to us from her swivel stool. Dr. Luke asked us: “Have you read ‘Welcome to Holland’?” I saw glimmer in her eye when I told her we hadn’t - the same glimmer I had seen in the past each time she brought us good news. Sometimes the most significant knowledge a doctor can share has nothing to do with diagnoses, prognoses, treatments or medications. Aside from the difficult decisions we would need to make in the coming months, I left Dr. Luke’s office with one immediate priority: To read “Welcome to Holland.”
A quick Google search brought us right to the 371 word reflection, written by Emily Pearl Kingsley in 1987. I was five when she wrote this and I was living in Atlanta, GA, though Kingsley might say I was living in Italy. I’d never been to Holland and wouldn’t visit the beautiful region for another thirty years.
In “Welcome to Holland,” Kingsley maps out a beautiful metaphor, a juxtaposition of “normal” life (a planned trip to Italy) and life with a “special needs” child (an accidental trip to Holland).
I read the piece to Coley as she drove home from our appointment. It begins with Kingsley describing preparation for her trip to Italy in beautiful detail and outlining the comparison with normal life. She then describes a plane ride that drops her in an unplanned location, Holland. “‘Holland?!’ you say. ‘What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy,’” she writes. I knew what she meant. She emphasizes that Holland is not a "horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place." I kept reading.
- Kingsley speaks of the hardships and stresses of acclimating to arriving in an unplanned place: "So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met." Coley read a lot of books about parenting before the girls were born, but they didn't include anything about how to handle seizures, torticolis or infant feeding challenges. We bought a lot of essential equipment, like cribs, bottles and blankets, but we never thought to get syringes, pill crushers, sensory brushes and vibe sticks. We had prepared for Italy, not for Holland. I looked at June in the baby mirror. She was in her car seat, passing a small toy between her tiny hands. Up to this point, we had been able to give her everything she’d needed. I felt grateful.
- Kingsley speaks of overcoming the initial shock and of the an enlightenment that eventually comes: "It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts." Upon reading this, I felt the wind come through the windshield of the van. You might say this is impossible. Perhaps you just don't understand what I mean. Along the way, barriers were breaking down. I've had my trials with finding peace.
- Kingsley speaks of the heartbreak that forever bends the corners of the mind after a great loss: "But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say 'Yes, that's where I was supposed to go. That's what I had planned.' And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss." It is a loss to find out that your child will have special needs. It's a poignant one. It's the death of a dream. I looked over at Coley and I could see tears streaming down her face. Grief is a persistent opportunist.
Kingsley ends on a line that collapsed the valves inside of my own heart: "But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland." I looked at June in the mirror again. Not only had we given her everything that she needs, but she had given it back to us. Juniper is tulips and windmills and Rembrandts. She evokes all of the senses. She's not moving at a slow pace, we are moving too fast. Juniper is Holland.
We sat still at a stoplight as I finished the last line. Cars passing across the intersection in front of me and remembered some of the most difficult moments of my life. I remembered those moments passing by and looked to my left to revisit them. There, Coley was sitting in the driver's seat, sobbing. She and I sat and grieved. We mourned our loses, celebrated our gifts and realized, together, that we had found our place in this world.
We sat there in Holland...and everything was just beautiful.
Thank you, Dr. Luke, for sharing this with us. I hope we will see you in Fort Worth, this time as old friends.
I hope anyone that finds this post and reads Kingsley’s words gets as much comfort out of it as we have.
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.
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.
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.