On Gloom

When fog settles deep

With gloom it’s best companion

Forget not your light

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On Never Enough

The sounds of “The Greatest Showman” reverberated off the windows of the car and her tiny voice sang along. It was one of her new skills and, by far, my favorite–she is a beautiful singer to boot. I took solace in the melody and her voice as we continued on our way to Boston and her speciality appointments.

The juxtaposition of her blossoming development and the fact that we were traveling to urgently scheduled appointments for difficult issues related to her complex medical diagnosis did not elude me. Our life together is this constant dance of uncertainty and fear riding along side simplicity and gratitude.

One of her favorite songs began and she sweetly sang along “never enough, never enough…” My mind wandered and weaved forward to the appointments of the day and the Herculean task ahead and back to the heartbreaking texts I received in the morning from a fellow mother parenting a child affected by the same rare genetic disorder as my daughter. I tuned back in to her singing.

All the stars we steal from the night sky
Will never be enough, never be enough
Towers of gold are still too little
These hands could hold the world but it’ll
Never be enough, never be enough
For me, never, never”

As I listened, I landed firmly in that space between fear and gratitude. The space is the vacuous home of “never enough.” It is the stark reality of my life raising a child with a rare genetic disorder and extraordinary need. All the moments we stole that we were never meant to have, all the money it took, all the change we made in this world to make it a better, more accepting place for her will never be enough for my sweet child.

It will never be enough to delve deep into her genome and repair the small deletion that sentenced her to a lifetime of complex and immense struggle. A mother’s number one job is to fix all that ails one’s child and I cannot. I will never be enough. We are further stuck within a medical system that is woefully unequipped to handle her needs now and in the future.

Nevertheless, we drive on–this time to another appointment for a Hail Mary treatment. There will be many more. The future will surely hold more therapies, new medications, treatments, clinical trials, and we will weigh the pros and cons of all. We will never stop because she is more than enough.

The song shuffled and she began to belt out a new tune. I was jolted out of my free fall. She really is the sweetest, hardest working, most glorious miracle; she is more than enough. She is love and my love for her is indescribable. Perhaps that is enough.

Yes, perhaps love is enough. It is what I will fill the space between fear and gratitude. I will fill “never enough” with love.

On Drowning

Drowning is silent; there is no grand cinematic splash, flail, and scream.  True drowning is insidious and deadly. The once confident looking swimmer is suddenly gone with no yell for help and no sign of distress.

I am a fiery, powerhouse mother of two children with disabilities and I feel like I am drowning.  My drowning is as silent and insidious as the real thing. My drowning is slow and it looks well groomed and smells of perfume accompanied by bubble bath; it gets to school on time; volunteers for the PTA; then, arrives at home to face the mountain of responsibility and sinks below the surface into the dark depths.

Do not let my functionality fool you; I feel like I am drowning.

I look calm and cool above the surface while my legs frantically kick below to keep me afloat.  My legs are tired and cramped.  They have been kicking for years–since the day I sat cherry faced (from steroid shots) and smiling at my baby shower pretending to be carrying a healthy infant.  No one, save for a select few, knew the baby swimming around in my belly had a body riddled with tumors and would be born with the rare genetic disorder, Tuberous Sclerosis Complex (TSC).  I was drowning in grief, in fear, in appointments for myself and my baby; and, I was excited to meet my growing baby, surrounded by friends and family celebrating her.  A piece of me slipped below the watery depth that day.

My drowning is piecemeal.  It has happened bit by bit over the years.  I have lost pieces of myself to the crushing responsibility and lack of resources.

Today I tread tirelessly, a child in each arm, to keep us all above the surface.  I feel the tug of riptide–the school calls, the emergencies, the medical crises, the new diagnoses, the day to day battles, the behaviors, the therapies, the endless appointments. It threatens to pull us all under in totality and I tread on because I refuse to let this life claim my family. I am buoyed by my love for them–by our love for each other.

I am tired and I need help; and, I will continue to tread on. You may not know all that is happening below the surface. I look like I can do it all but one cannot tread water indefinitely without support. And this world is just not built to support families like mine–the multitude of need is far reaching. The cost thus far has been high. The truth is below the surface there are pieces of me slipping away bit by bit while I wait for someone, something to help.

Nevertheless there is a bothness to this world that is mysterious. I look the model of strength, calm, cool, collected togetherness while I feel like I am drowning. I am losing pieces of myself bit by bit while I gain new perspectives on this wide and wonderful world I would never be privy to without my beautifully complex children. The love, pride, and joy I hold for my family gives me great strength and requires strength from every fiber of my being. I may feel like I am drowning and I am kept afloat by the hope I hold for our future–no matter how small it may be at any given moment.

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.