On Traditions and Taming Dragons

Sauce

The pot bubbled and steamed, red hot like lava; I’m mesmerized and enchanted.  The smell filled my soul and I was suddenly small, tiptoed and peeking over my nose for a glance at the mysterious brew.  I am filled with love and warmth, earth and roots, history and spirit; I am filled with the touch of every loved one who passed along the wisdom of life and recipe.

The volcanic like lava of the deep red sauce bubbled up and spit singeing my arm and I returned to my adult form–all other senses came back online.  She yelled at me shrill and panicked, “Mommy!!  It smells disgusting in here!!”

The hairs on every inch of my being stood up.  Hypervigilence kicked over into active mode and my internal monlogue activated:  Is this an aura?  Sh**! is this an aura?  Last time she had a status seizure it started by her saying something smelled disgusting.  Look at the time.  You will have to time it.  11:43 AM.  It’s 11:43 AM.  Where’s your phone?  Calm down, Rebecca, you have all her meds.  You know how to handle this.  Determine if this is a real smell and move on.

“What smells disgusting baby girl?”

“That!  Are you cooking?  Can you move it?  Throw it out!!”

Phew!!  It’s a real smell.  But, damn it, autism!  FU TSC and epilepsy.  My culture, my heritge, my freaking pot of sauce on the stove is disturbing to my child.  I’m a mutt–a product of Ellis Island America; I have very little culture and heritage to speak of and you pervert even that.  You take everything.  You, the dragon, who lie in wait and snarl your teeth at the most unsuspecting moment.

Tuberous Sclerosis Complex (TSC), TSC-Associated Neuropsychiatric Disorder (TAND) and associated autism, and epilepsy have pervaded every moment of our lives.  TAND is a complex beast–a dragon who has wrapped herself around our baby girl and woven herself into the fabric of our family.  Dragons are both beautiful and fearsome.  Autism is a main feature of TAND and perhaps one of the most tragically glorious and horrific of the dragons.

Our girl is like Daenerys from Game of Thrones with her dragons. Her dragons are both part of her and threatening to consume her.  The dragon is rigid, she has sensory issues, sleep issues, impaired communication and social interaction, impulsivity, food aversions, and more.  The dragon steals from us because it does not live like us; it does not derive joy from the same things.  There is still great beauty and joy in this dragon, but make no mistake, it is a thief of our family’s joy and peace nonetheless.  It is not easy to learn to live with a dragon;  and, it is certainly not easy to learn to cook for one.

As I looked between the stove and my daughter, contemplating my next actions, for a horrifying moment, my memory flashed to an article I read on the shooter (who shall remain nameless) at Sandy Hook who was also autistic.  In it was described some of his difficulties including: “He was upset [by]…the smell of her cooking, which he mostly did not eat because of its texture.”  I thought of his mother, who he slaughtered, and his demons and the unspeakable horror that he unleashed on this planet.  Whether autism was a factor in that or not I do not know, but it is certain that when his mother was living she was controlled by it.

I came back to my senses from the vastness of worst case senario.  If I were to wax poetic about the enormity of the dragon, for dragons by nature are large creatures, this would no longer be a blog post, but rather a dissertation or novel of some sort.  The hole is deep and bottomless and today is not the day to fall down it.  Instead, let’s get back to the sauce.

My heart was in my throat but it was also on that stove.  How to tame the dragon?  I was not throwing out my grandmother’s sauce and much of that had nothing to do with the sauce–it was about so much more.  It was about taming the dragon and about me.  I rarely cooked like that anymore.  It takes time, which I don’t have, and humans who want to consume it, which I also lack, (our brand of dragon doesn’t dig Italian–she only digs hot dogs, chicken nuggets and chips…it’s a short list), and it takes a dedication to myself, which I am severely lacking.  The thing about dragons is they take up a lot of room.  There isn’t much space for anyone else to exist in their presence.  I spend much of my time taming the dragons and soothing those around her and within her.  That isn’t going to change, so I returned to the taming and soothing.

“Baby girl, Mama can’t throw everyone else’s dinner out.  It’s just a pot of sauce cooking.  I know it smells bad to you.  I’m sorry about that.  How can we make this work for both of us?  How about we close the playroom door and you hang out in there until the smell gets a little bit better for you?”

She happily took her Christmas hoard into the playroom and holed herself up in there.  I returned to the bubbling pot of lava, stirred it, and reduced the heat; and, my heart broke a little bit more.  I never think it possible, but somehow it always is–for my heart to break more than it already has in life.

It was the reality of what the dragons have taken.  That of what I will never be able to pass on to her.  The love, the tradition, the heritage, the history in that pot.  I thought of my grandmother, a huge influence in my life, and how my kids have met her but once.  Now 95 years-old and her mind fading, they are unlikely to see her again.  I thought how there are so many loved ones that I met but a few times and how cooking this recipe brings them back, and how she won’t even have that.  How different her life is from mine; how different her life will be from mine.  How different my life is from what it was–hijacked by dragons.

As I stirred the pot I thought, how different my life is from my Grandmother’s.  How remarkable, really.  I remembered her words from our calls when the kids were little.

“Becky, how do you do it?!  Two little ones–so close in age.  How do you have so much energy to take care of them?”

“Grandma, how did you do it?!? I don’t know how you did it!  All your kids were twins!  You always had 2 littles ones!!  3 sets.  You had 2 babies with 2 toddlers running around!  How did you do it?”

Her answer was always: I don’t know.  Then she would weave some beautiful story about the past.  How things were different–lines of stroller parking outside the grocery store where you could leave your babies while you shopped, friends to help with your kids, etc.

And my answer to her always:  I don’t know.  I still don’t.  I don’t know how I find the strength everyday.  I don’t know how I found the strength 5 minutes ago to face down a smoking dragon and spitting, aromatic pot of sauce.  I don’t know how I’ve raised a child with a rare genetic disorder to the fine age of 9 and a brother with multiple differences by her side.  Because, the beauty and the mystery of life is no one knows the how along the way and when we get there the how matters little anymore.

We get there bit by bit.  Ingredient by ingredient–like making the perfect sauce.  And, the recipe changes over time.  I am certain my grandmother, a widowed mother of four children (two sets of twins) felt as though she would never make it to the next day until she did; and, she did not know how she would survive more twins when she re-married and had another set until she did.

Some pots of sauce are delicious, and some pots of sauce you end up tossing; they are all merely moments.  Moments we must thread one to the next.  And that, that I can teach to my beautiful little dragon child.

In the meantime, I need to remember to invest in more of the moments that replenish that which the dragons have taken away–like making a steaming hot pot of sauce.

 

 

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On Infantile Spasms

In honor of Infantile Spasms week below is the text of my 2015 presentation on Infantile Spasms to the New England Tuberous Sclerosis Alliance. Infantile Spasms are a rare catastrophic epilepsy that begins in early infancy. It is marked by subtle movements that mimic the Moro or startle reflex in series but could also be as simple as a head nod. The following is our journey.

Imagine an infant—their round features, soft skin, new baby smell, their warmth against your body as you cradle them.  Let those feelings sink in—the joy, comfort, love, and peacefulness of the moment.

Now imagine someone rips the infant from your arms and leaves them in the middle of a busy intersection while you are forced to do the unimaginable, stand helplessly by and watch from the safety of the sidewalk.  As uncomfortable as it may be, let the feelings of that imagery rise up—the pure abject terror, the visceral feeling of complete and utter helplessness, the horrifying dread and anticipation, the steadfast hope for safety even in the most perilous situation, the relief as the minutes pass and the child remains safe and sound, the utter anxiety, grief, and sadness of it all.  

Now try to hold both images in your mind—the warm comfort of snuggling a sweet infant and the absolute horror of them in danger.  Try to hold both those feeling experiences simultaneously in your consciousness.  To me this is what it was like having a baby diagnosed with Tuberous Sclerosis Complex (TSC) and learning of the risk of infantile spasm in TSC.  In fact, this is how I explained to a friend what I was feeling when Kaleigh first started experiencing infantile spasms at 5 months old.  I felt as though my precious baby had been ripped from my arms and was placed in oncoming traffic.  Every day I was waiting for the car of clusters to strike her, knowing the results could be catastrophic, yet never knowing exactly what the collateral damage would be in the long run.

Today, I want to focus on the emotional component of having a child diagnosed with both TSC and infantile spasm.  We’ll hear a lot about education, what to look for, treatments, and science around these diagnoses.  But, personally, even armed with all the information and as prepared as I was logically for the event of possible infantile spasms, I was not prepared emotionally.  I struggled and was stymied by the overwhelming experience.  Our experience with infantile spasms was anything but straight forward.  My hope in speaking is to acknowledge what preparation and medical providers cannot—the  very private struggle of parenting an infant having infantile spasms.

Our daughter K was diagnosed with TSC at 29 weeks gestation when an ultrasound showed multiple rhabdomyomas in her heart and increased ventricular volume in the brain.  The devastation of the diagnosis weighed heavy but even then I had a sense of relief that I was able to prepare.  Some of you here know me, so it won’t surprise any of you when I say I am a planner.  I am a card carrying type A personality, academic, research loving, statistical nerd, who likes everything to be orderly and planned.

Did I mention I’m a control freak?  Becoming a parent is especially challenging for us high-strung types, under even the most idyllic of circumstances. I handled the diagnosis in my typical fashion, I wept, I reflected, and then I prepared.  I read all I could from the Alliance.  I looked into doctors, clinics, switched birth plans and OB/GYNs to a practice with a better NICU.  I watched videos of infantile spasms.  

And then my world changed on Dec 1, 2009.  K stopped moving and I was sent for an emergency c-section.  She was born pink and screaming and was whisked away to the NICU where she was evaluated and a few days later officially given the diagnosis of TSC.  We met with a neurologist from our local children’s hospital and TSC clinic before leaving the NICU.  His advice was to enjoy her and call if I had any concerns—he’d see her in 3 months. 

The simultaneous joy and grief made it so very difficult to enjoy the first months of her life.  At four months old, we took K to a regularly scheduled cardiology appointment where we found she was in heart failure.  She was immediately admitted to the PICU for treatment.

There is no preparing for such an event.  There are no words to describe the emotion of the experience.  And it was during this time that we noticed the first whispers of impending spasms.  K was recovering from the heart failure nicely.  Her function was improving and we were moved to a regular floor.

My husband was holding her in his lap when she made a slight movement like she was doing an abdominal crunch.  I suspected spasms right away and quickly got the hospitalist covering the floor to come in.  The APRN entered while K was still making the motion.  She assured us it was nothing, likely just reflux, she knew what infantile spasms looked like and these were not them, there was no throwing out of the arms, no distress between the episodes, etc.  

This was the first intersection of knowledgeable preparation and emotion for me.  It was a spectacular internal crash.  I knew spasms could look like this.  I knew more exaggerated motion could follow.  I knew timeliness was of the utmost importance.  And yet I so badly longed for none of it to be true.  I wanted to believe the APRN.  After all she was a medical professional, she had to know more than me, she had to know something I didn’t.  I wanted to ease the anxiety, to allay the terror of helplessness, and feel safe, potent, and in control.  This was the underlying experience for me through our entire spasms journey.

K is fast approaching 6.  It has been nearly four years since we have seen a spasm and the echo of these emotions remain.  The call to go down the path of what if instead of what is and what was beckons me. I cannot say for certain if those were her first spasms.  I can only make my best educated guess.  I think they were and I carry a lot of guilt for allowing my emotion to cloud my logic. Nevertheless, I went with what the APRN was saying and I can’t change that decision. I mentioned the episode to her neurologist.  And we waited to see where things went.

When one night she was playing on her infant gym mat and began to repeatedly throw one arm in the air and crunch her abdomen on that side, I again sprang into action recording a video and immediately calling the on call neurologist.  We were again met with professional concern yet assurance.  There was nothing that could be done until Monday but increase her the mediation she was on for her simple partial seizures.   We brought her in for an EEG that Monday and to sign paperwork for Sabril if needed.  The EEG was good.  It only showed left occipital, parietal spike discharges.  The same ones she had for a couple months and the ones she continues to have to this day.  We were told it was unlikely she was having spasms as there was no hypsarrhythmia but they would start Sabril anyway.

Now came the time that the physicians scared the ever loving sanity out of us regarding Sabril and side effects.  The chance of peripheral “blindness” was heavily emphasized.  Another collision of logic and emotion.  

I felt like Seligman’s Dog… True to my nerdiness this is a reference to a famous psychological experiment in which dogs are electrically shocked repeatedly.  At first the dogs have no way to escape.  Eventually, the experiment is changed so that the dogs have a simple way to escape the shock—they can jump to a shock free cage.  But, the dogs don’t.   They lay there and endure the shocks over and over.  It’s what’s called learned helplessness.  It happens to us humans too.  We were in a terrible situation.  We were helpless.  But there was an out and it was Sabril.  It seemed equally terrifying.  So there was an aspect of freezing under the circumstance.  Allowing the emotion to overwhelm.  And falling even deeper into the terror of helplessness.  

We signed the papers and received Sabril soon after, but we were repeatedly told they did not think these were infantile spasm.  I was overwhelmed by it all.  Worried about our baby’s future.  Would she ever sit up, crawl, walk, talk?  Would she be blinded?  I was worried about her present.  I gave her the first dose of Sabril and held her with hope as she fell asleep.  But she really fell asleep.  Into too deep of a sleep.  I couldn’t rouse her after quite some time.  She was breathing and pink but she was not responding to stimuli.  I called the neurologist.  Placed an ice pack on her bare skin as he recommended and when she did not wake took her immediately to the emergency room.  We were told she had Sabril toxicity and to stop the medication.

Over the next few months, K continued to have questionable episodes of clustered movements.  They were subtle at times, and dramatic at others.  My gut said they were spasms, but our neurologist said they weren’t.  There was no hypsarrhythmia.  In fact, there was no electrographic correlate with any episode on the EEG.  We were told they would not try Sabril for her again.  They told us to have her evaluated by GI for reflux, have cardiology see if they were some strange form of arrhythmia or syncope.  So we did.  Even when my gut said we were going down the wrong path, I was overwhelmed by the disparate experience of my knowledge and the emotion of hope.  I could not control any of this.  I was in a whole new territory.  No amount of will power, volition, preparation, or knowledge could change the feeling of hopelessness and helplessness.    

At 9 months old, K began having tonic clonic seizures up to 5 times a day.  At that point, I knew we desperately needed to do anything to save our daughter.  She was admitted to the local children’s hospital and we demanded that if they would not prescribe Sabril that she be put on the ketogenic diet.  We also asked for appointments to be made for us at a hospital with a larger TSC clinic—one that could do a surgical evaluation.  The ketogenic diet controlled her seizures nicely… at first.  We transferred care to the larger clinic, celebrated her first birthday, and made it to the New Year.  

The day after her yearly MRI, Kaleigh had a long cluster of serial head nods.  Again, I knew it was seizure.  Specifically, my gut knew it was likely infantile spasms.  This time I vowed not to get mired in the emotion.  To stick with my logic and get K on Sabril.  We were at one of the top children’s hospitals in the world and one of the best TS clinics as well, this had to be more straight forward.  Another vEEG and another time we were told that what we saw was not infantile spasm—it wasn’t even seizure as there was no electrographic correlate.  Again, my heart was filled with hope.  These were reputable, world renowned doctors, they had to know what they were talking about.  I wanted so badly for what they were saying to be true.  

I wanted it so badly that I clung to the hope and almost every day it was shattered by another cluster of serial head drops.  My heart was broken every single day.  I worried endlessly.  K was nearly two, not walking, delayed in fine motor skills, talking but stalled.  I knew these were seizure.  I feared they were spasm.  I did everything I could to advocate to get these episodes and her other seizures under control. I called the doctor’s office every day.  I had my sanity questioned by her doctors, my parenting skills debated, I was told over and over again that I was wrong for not trusting that these were not seizure.  It was a very dark time.  I stood helplessly by on the sidewalk as car load after car load of spasms slammed into our sweet girl.  I was eaten alive by doubt, guilt, and the utter pain of it all.  But I moved forward, and continued to advocate for diet changes, medication changes, more EEG monitoring—anything I thought might save K from being ravaged by what I was now fairly convinced were spasms.

About four months after we saw the first cluster, 11 days after her second birthday, and with her 8 week old baby brother in tow for the week long vEEG, we finally received confirmation that the head nods were in fact seizure.  They were spasms.  They showed electrographic slowing during the cluster.  The neurologist told us they were juvenile spasms because she was over 18 months old and that these were less deleterious to her development.

I was never so devastated to be right in my entire life, nor do I think I ever will be in the future.

The doctors told us to increase her Keppra and that Sabril was not needed for these spasms.  I was flabbergasted, but knew I needed to raise the issue with her neurologist instead of the neuro covering the floor.  I will never forget what her neurologist said when I pleaded with her to start K on Sabril.  She said, “She uses her eyes.  I will not prescribe a medication that could blind her.”  Seligman’s dog no longer, I got up and took the leap.  I fought tooth and nail, called the patient advocate, and got K placed on Sabril by the end of the week.  After our experience, we transferred K care to a doctor, hospital, and clinic that was a better fit for us and were seen a few weeks after initiating Sabril.  K’s new neuro only needed to look at videos of K’s episodes to say they were seizure.  And with a few med tweaks she had Kaleigh’s spasms and other seizures under control within a few weeks.

We’ve continued to face struggles with TS that have seemed insurmountable; that have rendered us helpless, hopeless, and terrified; but, for now (EVERYONE PLEASE KNOCK ON WOOD), spasms are a struggle of the past and I am able to use that experience to navigate our current difficulties.  My greatest obstacle is to leave that spasm struggle in the past–not to be lured by the emotion back to a timeline I cannot change.  Every time I am confronted with K’s delays, the siren song of doubt and guilt woo me.  What if she was put on Sabril earlier?  What if I did this instead of that?

This fruitless exercise takes me away from the beautiful, smart, sassy, vibrant child I have loving me and driving me absolutely nuts, in the best way possible, every single day.  It is what leaves me in heaving sobs in the doctor’s office thinking I am personally responsible for her latest discouraging neuropsych results instead of listening to my girl trying everything she knows to try to get me to laugh.  

I am certain I am my harshest critic.  Nevertheless, it is true that I made many mistakes in our spasms journey.  I lost myself in emotion.  But, that was not one of the mistakes I made.  It was emotion that pushed me on and it was my gut that told me to keep seeking treatment in the face of objective medical data.  Another one of the big lessons I learned was that preparation and knowledge are not everything.  Knowledge alone did not get K the proper diagnosis and on the best treatment regime.  In fact, knowledge in absence of the bigger picture failed her first physicians despite their best efforts.  It was the marriage of clinical knowledge, parental advocacy, and passion that helped K.

Lastly, I may have characterized hope throughout this journey in a negative way.  It was my clinging to hope that often overshadowed my gut feeling that something was very wrong—that K was having infantile spasms.  But, hope is often all we have.  It is what holds us together when we are the dog chained to the shocking cage, when we are the imaginary parent watching our imaginary child in the path of oncoming traffic, when we are the parent of a child with Tuberous Sclerosis Complex and infantile spasms doing everything we can to help get the spasms under control.  Hope fosters resilience.  Spasms are devastating, uncontrolled spasms decidedly more so, and our children are resilient.  So, have hope.  

On Trading Places

El Jaleo
Forever trapped oil on canvas

I grew up in a small town in the New England; it’s rumored that when I was born there were more cows in the town than people.  As a teenager, pre-license, I resented the long expanses of subdivisions, corn fields, and barns housing dairy cows; they kept me from freedom.  I dreamt of big cities and bright lights; art and music; most of all, I dreamt of freedom.

I dreamt of a place where I was free to shed the cloak of expectation that shrouded me and manifest my own destiny.  Perhaps, it was not this at all, but rather, the familiar dream of trading places.  Perhaps, I was caught in the universal theory of mind game–what would it be like to be her, or him, or anyone other than me in this stifling place?

When you grew up in a town where everyone knew your name they tended to also know your business.  Ironically, nobody there really knew me at all.  It was the strangest sense of isolation.  I spent my life surrounded by those who had the utmost familiarity and simultanseous estrangement.  It was the confusion of being met with the assumptions of others then surprising them, letting them down, or simply being completely misunderstood.

This was a strikingly similar experience to parenting a child with rare and extraordinary needs.

Recently, another mother of a child with rare disease told me that she never thought about running away when she was young; but that she probably thought about it way more than she should as a parent to a child with special needs.  Her experience is not unusual.  Research has shown that mothers of children with autism have stress levels similar to combat soilders.  Who in our line of parenting wouldn’t at least imagine themself somewhere, or someone else?  Nevertheless, she likely wouldn’t share her deep desire to escape or trade places with most of her mama friends (yet I’m the one who goes writing it on the internet for all to read) for fear of being judged or misunderstood.

Parenting a child with rare and extraordinary needs is like living in my childhood small town–there is a simultaneous familiarity and estrangement.  Most of the people we run into in our day to day interactions are other parents who have some understanding of what it is like to raise tiny humans–there is a familiarity.  Yet, our world is so very different than theirs; it is full of complex medical jargon, life or death emergencies, therapies on top of therapies, the bittersweet meeting of milestones, and milestones that will never be met–there is a complete and utter estrangement.

Much like my adolescence, parenting my children has been an isolating experience.  I am surrounded by others who hold assumptions of what both me and my brand of tiny humans are and should be like.  Over the years I have learned to brush the well-intentioned yet oblivious, parents aside, but it remains a part of my daily life to deal with doctors, nurses, therapists and school administrators who I must educate and shake free from their shackle of assumption in order to see me, but more importantly, my children clearly.

Perhaps hardest with which to deal is the desire to feel free–it is similar to that adolescent desire for freedom.  Parenting children with excptional needs can feel stifiling.  All parents trade some dreams to care for children and for special needs parents it is more than that.  There is no end date in which you can say, “when my child is in kindergarten I can return to work” or “I will get my Master’s when my child is in middle school.”  We are forced to surf the wave of our child’s needs no matter how capricious the sea.  There is an inexplicable trapped feeling that accompanies that reality.

Despite the stark reality of parenting a child with extraordinary needs, there is great love and great hope.  Unlike the dial-up days of my adolescence there are a wealth of resources online to find your Tribe of fellow parents and decrease the isolation.  There is also freedom in the very imagining itself–to dream of yourself as someone else, somewhere else–and to run away in your mind–if only for a little while.

I used to dream of bright lights and big cities, art and music; unfortunately, I spend way more time than I would like in a big city, Boston, for medical appointments with my crew.  Not exactly what I dreamed of; yet, I still permit myself to dream.  I find the time when I can to get lost in my favorite place on earth, The Isabella Stuart Gardner Museum.  I stand at the foot of John Singer Sargent’s, El Jaleo and I imagine what it was like to be the Andalusian flamenco dancer.

John Singer Sargent, El Jaleo
Photo from my last sojourn

I trade places places in my mind’s eye and imagine myself deliciously free and moving to the beat.  And, in that moment my burden is lighter, my dreams more vivid, and my soul reinvigirated.

I have a magnet of El Jaleo on my refridgerator.  In moments of deep despair, when I feel as though I cannot meet the challenge that has been bestowed upon me, I imagine myself the great Andalusian dancer and I buy myself a moment of freedom.

How ironic that a woman forever trapped oil on canvas can make my soul feel so free.  I guess that is the magic of dreams–we can imagine ourself anyone and anyway we want to be; whether that be far away from small town New England or the high-stress, high-demand world of special needs parenting.

On Origin Stories

superheroThe screen came to life in graphic bursts of vibrant color and the sounds of symphonic movie scores swept through our home.  The meteor crashed into Earth in a spectacular explosion spewing Vibranium everywhere; my son’s widened as he drank in a seven year old’s dream—the origin of a Superhero.

My wrist faintly vibrated, startled me and caused my heart rate to instantly rise; the Apple Watch strapped around my wrist was like some sort of Pavlovian torture device that induced momentary panic whenever it alerted and my daughter wasn’t right with me.  I was stolen away from the screen and into my own world—like Batman called by the Bat Symbol.  When the watch buzzed my body would instantly flood with chemicals readying me for the potential emergent phone call until my mind could process and reason with the automated physiologic response and back down. It was only a text message; I forced a breath out and willed my heart to slow and read.

“Last update they were placing #9 of 16,” accompanied by a heartbreakingly gorgeous photo of my friend’s daughter.

Surgeons were placing the ninth out of sixteen depth electrodes into the brain of my friend, Blair’s, sweet baby girl to invasively monitor her epilepsy (stereoelectroencephalography—sEEG) in hopes of gaining enough data to resect or ablate some of the abnormal tissue and halt the barrage of seizures caused by Tuberous Sclerosis Complex (TSC).  

“11”

I felt the blood rush to my face and suffuse my body with the superhuman strength that is required to respond when emergency strikes—damn watch!  I brought my brain back online.  I was like the Hulk willing the transformation to stay at bay.  

I channeled my energy into my response of support to Blair, read our friend Bridgett’s response on the group text, tapped out what words I could muster, and thought of how improbable it was for our lives to have crossed.  Blair lived over 4 hours away, Bridgett another 2 from there, and we had little in common practically; we were all brought together when TSC exploded into our lives like the meteor blazing across my TV screen and became the source of our superpowers, our connection, and our bond.

It was our origin story.

There is a before—there is always a before in an origin story—and an after.  Splitting the before and the after is an event of immense, life altering significance—one that changed the person and became his or her new beginning.  The person emerged from this event fundamentally changed right down to the fiber of their very being; when they emerge they ofter struggle to find their footing and own the power they have gained through the soul changing experience.  

Once one was able to walk through the fires of grief and tumultuous period of change one emerged with new powers that other simply did not possess—superpowers. Like Marvel’s X-Men those with superhuman abilities gravitate toward each other and find others in their own tribe.  Once there they share their own origin stories and it is what bonds them.

Special needs parents are typical people who all have an origin story and now possess some superhuman characteristic.  We are protectors of the true Superheroes and we are powerful in our own right.  To hand one’s child over to a surgeon for brain surgery, 1500 miles away from one’s home, while one’s other two children are back home with family takes superhuman strength.  It takes a tribe of those with superhuman strength to hold one up. Blair’s strength as a mother was superhuman and she had Bridgett and me to hold her up—regardless of how different our origin stories.

The life altering event could be a diagnosis of TSC, cystic fibrosis, autism, a car accident, or something else unnamed, and for those who have just experienced this—welcome.  Forget, “Welcome to Holland”; welcome to the Tribe.  To those who are crawling out of the radioactive pit of their origins you will find us—in doctor offices and therapy waiting rooms, on Facebook groups, and in charitable organizations.  We will whisper the stories of our begins to you and offer you our shared strength.  You will learn from us and, in turn, us from you.  We will become forever bonded.  Our Tribe is one of fierce love, superhuman feats, and a dash of the mundane.  We are the protectors of Superheroes and those who have gained superhuman love and strength from a life-altering event.  

“With great power comes great responsibility.”  There is no greater power than the love of a special needs parent and no greater responsibility than a child.

On Anniversaries & Grief

person wearing blue pants and black low top sneakers

I have no words

They fell from my mouth

Like leaves from the tree

Stars from the sky

Hopes from my dreams

You can’t put them back

They must be grown

Nurtured

Loved

Time must pass

The tree will bloom

Stars will shine

I will speak of hope once more

 

 

***

Mid-October steals my words every year since we received the diagnosis of Tuberous Sclerosis Complex for our daughter on October 15, 2009.  It took me a bit, but my words are back and I hope to be writing more regularly again.  Welcome back to those who I have been neglecting or welcome in general.