On Fighting for One’s Life

hospital

There are no words for watching your child fight for her life.  Instead, there are beeps and humming and the mechanical sounds of that which is not human but used to sustain the very human who is most precious to you in this world.

The human body is both terrifying and remarkable.  The fragility of life lay juxtaposed with its resilience. In both manner it is breathtaking.  It is a blessing and a curse to bear witness to the raw power.

It was Wednesday.  Winter pressed heavy on our household.  The spectre of illness swirled ’round.  News flashed with reports of norovirus, flu, and measles–all background noise.  Stacks of papers filled my office–IEPs for my children and other children who needed help, insurance forms, financial planning, medical documents, and the veritable detritus of parenting a child with a rare disease.  I was hunkered in for a day of paperwork.

It did not surprise me when I received a call from the nurse who reported my daughter was looking tired and complaining of a headache and stomache.  I picked her up from school and, as expected, she spiked a fever.  She was chatty and pleasant; she had an appetite; she even annoyed the heck out of me.  I prepared for the typical childhood virus with a little added flair due to her underlying medical conditions.  I certainly was not prepared for what was to come.

Three days later she was in the PICU fighting for her life.

There was nothing I could’ve done differently to prevent it. (That didn’t stop me from blaming myself)  Nothing can prepare one for the sudden silence.  It is deafening.  She was quiet and my mind was screaming loud.  What if I had brought her in to the ER earlier?  But, I had brought her to the pediatrician and he said she was ok.  What if I had held one medication?  But, that wouldn’t have mattered.  What if?  What if?  What if I could’ve done something different to protect her?  What if I caused her Tuberous Sclerosis Complex (TSC)?  Perhaps some inherent flaw in me, my character, my body, my soul caused her TSC, the tiny mutation on her 16th chromosome, which caused benign tumors to grow throughout her vital organs and wreaked havoc on her bodily systems.

Yes, yes it had to have been me.

In all the silence of her sickly slumber the deduction was that the fault and control lay with me; because, the truth was too terrifying.  The truth was like the erratic beeps and buzzers erupting from the machines crowded around to monitor the goings on inside my baby–that there was no predicting or control.  There was only vigilance.

Her body was and is remarkable and terrifying; and, I had and never will have any control over that.  I could and can only love her and be vigilant.

When her silence turned into screams I held the sacred space that is a mother’s love.  I couldn’t fulfill the motherly task of “making it all better” for her and I won’t ever be able, but I could and can hold the loving space for her resilience to bloom.  I stood firm and reminded her who she was as her body tried to steal that from her. I held the ghosts of every PICU and hospital stay past at bay for her (and me) to make space for whatever was to come.  I hummed softly in her ear the tune I have sung to her since I rocked her in the NICU as a preemie and she settled.  And her body began to heal.

We have been fortunate to celebrate her resilience and full recovery!  Yet the shadow of life’s fragility haunts.  The memory of the fight follows like a faint monitor beeping drumbeat; a ghostly shadow that lay just behind the veil of the exuberance of life; or deja vu that steals one’s breath midsentence.  Life is both wonderful and terrifying if only for one word–love.

There are no words for watching your child fight for her life.  There is only raw emotion; primal fear; all-consuming love; and breathtaking awe.

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On Persistence

AtlasHave you ever felt on the edge?  A razor’s width away from the world crushing you?  Have you ever thought maybe you should let it?  Have you ever wondered what would happened if you stopped holding it up, like enduring Atlas, and let the sky fall?

Of course you have, because you are like me–blessed and burdened by circumstance; you are a parent of the extraordinary.  The weight is unimaginable and the task so tiring; for who can hold up the world and the sky?

Nevertheless, we persist.

What is the alternative?  For the sky to come crashing down?

It does that anyway; it falls  with every crisis, every diagnosis, every meltdown, every school meeting, every stare, every medication failure.  And, that is why it is our job to hold it up.  It is our job to make sense of it all every time the earth shakes and another crisis rips the heavens from the firmament.  It is our job to piece it back together–azure patch dotted by fluffy white, patent-leather black pin studded with shiny bright diamonds.

We must make sense of it for our blessed and burdened, extraordinary pieces of heart walking around outside our chests.  For, if we didn’t there would be no understanding, no up or down, no hope.  We would be crushed by nature.

Who makes sense of it for us–holding the earth and the sky, picking up the pieces, placing the stars back one by one?  Who makes sense of the nonsensical?  Who helps carry crushing burden when we fear it will flatten us?  When we are weary and we wish it to?

I do.  We do.  We shoulder our burdens together because we are the few who can understand the job–the immense burden and blessing.  We link arms and hunch shoulders to disperse the weight as we speak of the crises, and diagnoses, the meltdowns, and meetings, the stares, and medications.  We stoop low and scoop the scattered stars and shattered blue canvas of sky the next time it comes tumbling down and help to paste it back up again–and again, and again.

Nevertheless, we persist.

 

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.

 

 

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 Refusing to Live Small

world in hand“I refuse to let her world be small.  I refuse to let her world be small.  I refuse to let her world be small.

I chanted rhythmically in my head as I heaved her eight-year-old body and the 50 pound oversized medical stroller through the rough hiking terrain; she alternately squeed in delight and grabbed on for dear life as I struggled over rocks, roots, and various forest detritus. There was a chill in the air as the sun’s beams struggled to stretch through the canopy above and reach us below in the shadowy underbrush.  We were going to catch up with the group in spite of the clear lack of handicap accessibility, my anxiety around taking a child who just had a status seizure two weeks ago into a remote wooded area, and the school’s hesitance to take her on the field trip.  Because, the only other answer would be to stay home and live scared of what could happen.

I refuse to live in fear; I refuse to teach her to live in fear.  I refuse to let fear make her world small.

The current state of the world calls us to live in fear.  We live in a seemingly terrifying time.  Week after week the walls of terror close in–shootings happen in movie theatersschoolsgrocery storesofficesplaces of worshipvehicles are weaponized against the pedestrian;  a murder happens in high school and classes remain in session for the day; and it doesn’t stop at death because even funerals are protested.  This past week alone two hate crimes occurred that killed two people at a Kroger in Kentucky and eleven at a synagogue in the Squirrel Hill section of Pittsburg.

There is fear that surrounds us and fear that arises with in us; it whispers to us and demands we hunker down and fortify against potential attack.  Fear calls us to protect ourselves from others and those who we view as potential threats.

Terror forces us to make our world small.  To live small; to think small; to be small.

I refuse to let my world be small.  I refuse to live small; I refuse to be small; I refuse to think small.

I refuse to let the external climate of the times frighten me into submission. There is too much at stake.  My children are at stake; our children are at stake.

Our daughter was born with a terrorist within.  A rare genetic disorder, tuberous sclerosis complex (TSC).  TSC causes benign tumors to grow in her vital organs, epilepsy, autism, and an endless list of other medical complications can occur across her lifetime.  It breeds fear and uncertainty; it steals any sense of safety and security for our daughter and for us, as her parents, raising her.  The goal of every terrorist is to make his/her victim’s world small and frightening.  TSC is different than a terrorist in there is no why and it has no goals, nevertheless there was a time it made our world very small and terrifying.

TSC made our world small until I looked into the eyes of our daughter and saw past the terrorist, faced the primal fear of losing her, and reconnected to the love that drives the all encompassing horror of potential loss.  The underbelly of the beast remains and the only difference is that I approach it with love and steadfast resolve:  I refuse to teach her to live in fear; I refuse to live in fear; I refuse to make our world small.

The lesson is universal, whether the terrorist is inside one’s self or in the world at large.  There is fear and uncertainty across the spectrum–from terminal illness, to mental illness, to chronic illness; to hate groups, divisive political groups, or the threat of lone criminals.  There will always be things in life in which we have an utter and complete lack of control.

The solution is acceptance of the very fact that we do not have control of everything.  It is to stare in the face of our fears and look past the terror to the wealth of pure humanity and love that remains in this world.  It is to embrace life and scream to the world:

I refuse to live in fear.  I refuse to live small; I refuse to think small; I refuse to be small.  I refuse to let my world be small.

I embrace life with love.

On Grieving the Living

Girl Running in Woods
In October I Remember She is the Girl Who Lived

I gazed up at the blue skies mottled by billowing white; bright reds and golds jutted upward cutting through the azure plain.  My soul was weary.  There was a distinct chill in the air and a cold breeze blew that rustled the leaves casting them down to their final resting place.  My thoughts danced around the archetypal shadow of loss and death.  

The weather fit nicely like a warm, woolen, worn boot; it was like the Octobers of my childhood.  I took solace in the familiarity.  It was not like the Octobers of late with their warm breezes and their confusing temperatures—the harbingers of climate change.  I watched the wind whip a pile of dried leaves into a small cyclone.  It mimicked my thoughts and the churning within.

We received the diagnosis of Tuberous Sclerosis Complex (TSC) for our sweet baby girl in October.  Every year when the leaves die so does another piece of my heart.  Like every October, it is a bit different and there is great beauty, loss and grief. 

Til the day I die, I will carry the extraordinary burden of grief that was bestowed upon me in October.

***

I always wanted a girl.  I was ecstatic when I found out I was carrying a girl.  I never dreamed of doing her hair or of princess dresses, but rather of bestowing upon her the secrets and great gifts that have been accumulated over generations of womanhood. It was my greatest desire to share with her the power of being female.  Like every mother, I rubbed my belly and infused the baby growing in my womb with my hopes and dreams.  Some basic—to be provided for; health; and survival—and some more grandiose—to be a force with which to be reckoned; to know her power and own it; to love and appreciate art, music, literature, and culture; to be kind, ambitious, fair, loving, philanthropic, an activist, and, yes, a feminist.

All these hopes and dreams came crashing down like a poorly constructed house of cards when met with the diagnosis of TSC and the hope was replaced with a single hope: let her live. 

Survival. 

Please, to all the powers that be, let my baby live.

And, so began my journey into grief.

I skipped right over denial and anger—there was no denying the images of her tiny body floating in my womb and her heart riddled with tumors.  I was too shocked to be be angry.  I moved right on to bargaining.  

Please, I will do anything; I will give anything; I will be anything; just let my baby live.

And, she did.

She came screaming into this world a couple months later, pink and lovely as could be, and still there was no denying that she had TSC.  Yet, the only thing predictable about TSC is the unpredictability.  Our sweet girl could be very mildly affected—lead a completely normal life with monitoring and the help of medication.  My hopes and dreams blew back in like a gust of autumnal wind and filled my soul.  

There was a bottomless pit of grief, that I could not identify and yet felt so intimately, and I was at the bottom.  But now, there was a ladder of hope on which I began to climb out of that pit.  Nevertheless, grief never leaves.  It marks you like a scar on your soul.  While there was hope, my grief merely shifted.

Please, I will do anything; I will give anything; I will be anything; just let my baby remain seizure free, let her avoid heart complications, let her avoid a life-threatening tumor in the middle of her brain, let her avoid autism, let her live.

My pleadings became ever more complex like chantings to the gods.  Under all the bargaining was intense and immeasurable sadness—nameless grief.  I did not comprehend that I could be grieving because I had this beautiful, tiny, amazing human in my arms who smelled ever so sweet and made tiny squeaks and coos.  There is no grief when your child lives.

Then came heart failure—heart functioning “incompatible with life.”  She was four months old.  Let her live became an ever present chant in my head.  I heard it constantly.  Soon to follow were seizures then catastrophic epilepsy in the form of infantile spasms then confirmation of a SEGA.  

Let her live.  Let her live.  Let her live.  

I was too busy caring for her to feel—to notice the grief I was dragging along with me like a monstrous ball and chain.  Until the quiet hours of the night when the mantra would cease and the only sound would be her tiny sleep sounds and the enormity of it all would settle on my chest like the weight of the world.  

This can’t be real.  This can’t be her life.  This cant be our life:  Denial.

Why?  I hate this!  I can’t do this anymore!!  I did everything right.  I listened to the doctors.  I took all the vitamins.  I hate the world.  F*ck this. F*ck TSC:  Anger.

Please, just let her live.  Please, please, please: Bargaining.

She grew and we welcomed her brother and another October came and went and an immense sadness haunted me like a ghost.  The specter of the loss of the life I thought she would have, the mother I thought I would be, the family I thought we would be, the life I thought we would lead haunted me.  Fear crept in: Depression.

And, she lived.  She has lived.  She continues to live and thrive with Tuberous Sclerosis Complex:  Acceptance.

It was not until I settled into the sadness and the loss that I was able to identify the reality of my grief—the both-ness of it.  The death of a dream and the birth of what is and who she is exist hand in hand.  There is a deep and ever evolving grief in that.  My dreams have shifted as has my grief.  

October to October I have seen many of the dreams I had for my girl fade from verdant hopeful green to blazing bargaining red then wither and fall to earth in grief filled loss; and, I have learned that they will be replaced with new dreams that bud and bloom in the full glory and newness of green hope.  My grief is part of me—as natural and integral as the tree’s life cycle.

As the Octobers pass my mantra has changed.  Now it is: 

I fear her loss because of my love.  Let my love surround her.  Let our love sustain.