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.

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On Love Through the Extraordinary

Loving Through the Extraordinary
Loving Through the Extraordinary

My eyes met the translucent blue waters that surround his pupils over our lunch of fast-casual Mexi-American and dove in deep.  I found calm and strength in their tides for over ten years no matter how stormy the sea of our lives together.  I longed for more moments where I could catch his gaze again and hold it, just the two of us, even if it was surrounded by the shuffle of feet on tacky soda-stick floors and air heavy laden with the smell of fry-o-lator tortilla chips.

The pace of life for us is like the lunch rush at that fast-casual restaurant.  It is chaotic, noisy, and impossibly straining.  Daily operations are assembly-line style and crisis is ever present.  Not exactly the metaphor that comes to mind when one thinks of love, marriage, children, and family.  Nevertheless, he is mine, I am his, they and this life are ours.

We were young(ish) and dumb(ish), foolish and in love.  We shared late nights dreamily staring at the night sky planning the future we were to spend together–our family, our children.  I stared deep into the oceans of his eyes and promised to love him for better or worse, in sickness and in health, for richer or poorer.  Little did we know what the stars held.

Movements flickered on the screen in the dark of the ultrasound room like stars in the sky when we first heard her diagnosis.  He tried to hold my hand as they said she had tumors in her heart and brain, would likely suffer from epilepsy and autism, and rattled off the litany of other potentially devastating effects of her rare disease.  Rebuffed, he gave me space, because he knew my stubborn independence required it.  I still don’t think he knows how much I needed the gesture; how much I need it every time and how much, no matter how miffed I seem, I appreciate and love him during every crisis.

We negotiated the sale of a house with a baby in the pediatric intensive care unit (PICU) in heart failure, we had the courage to have another after our first child was born with a devastating deletion in her DNA, we navigated therapies, medications, diagnoses, and medical insurance and still do day by day.  We gained gray hairs and the start of wrinkles.  Most importantly, we’ve done it together.

When the stormy blue of his eyes whips violent swirled by the latest crisis the earthen-clay of mine grounds him; and when the clay-colored earth of mine rumbles and shakes threatening to break his calming waters soothe me.  In a life with no astrolabe to chart a path through such horribly fated stars we lead and follow each other where the journey takes us.  Even if that means catching up for a mere 20 minutes over extra-cheesy culturally appropriated cuisine.

 

On Fear

On Fear
Some weeds are beautiful

The grass was long and uneven; weeds grew thick and straggly in the landscaping.  The sight got under my skin like the tiny bits of hot sand from the driveway that worked their way in when I decided not to wear shoes to run and grab the mail.  The asphalt burned underfoot; I concentrated on its heat to distract me from the messy exterior, but more so to distract me from the intensity swirling within.

I wanted to tear at the plants, ripping them away until our house looked manicured again.  I wanted to return inside to a home that was orderly and neat.  There was a rising scream that filled my chest like the steam expanding in an over-full pressure cooker heated too vigorously, but it never escaped.  

Our life is unseemly and wild like the weeds that grew in fits and spurts crowding out the manicured beauty of the landscaping.  It is hot and bothersome like the asphalt with little sand rock pebbles that pushed and singed.  But none of that exterior change would change anything.  In the end our fears are generally not about that which is without but that which is within.  

I fear I am not enough to parent the extraordinary and tame the wild.

***

They are within me and with out me; I grew their tiny bodies inside of mine where they shed cells that will forever circulate within me.  Our relationship is soft and silky yet impossibly strong like an invisible cord that tethers us to each other.  I’ve relied on this bond, read the small telegraphing movements of the cord, since before they drew their first breaths.  The bond is strong and primal, as old as the mother-child relationship itself.  I trust our fettered souls.  They have changed me at a fundamental level.

Yet, I do not trust myself; that I am enough, that I can do enough, that I love enough, that I see enough, that I have fought enough, that I have done enough, that I will be able to save her.  That I will be able to save her.  The rising scream that filled my chest was born the day I was first introduced to her immense need—the words Tuberous Sclerosis Complex.  

When fear looms as large as the weeds ready to overtake my hedge, I must remember, that my tether is to my children and not the devastating and incurable disease that has ravaged our girl.  There is no way for one person to be enough in the face of all of that.  But, there is one thing that is enough in this world and that is love.  It is that which wove the cord between us.  If only I breathe and approach it all with love the fear will lessen; and someday I will feel safe enough to release the sobbing scream that keeps me chained to the fear.