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 Struggle

The Fragile Strength of a Mother's Heart
The Fragile Strength of a Mother’s Heart

Her halting words barely rose above the rumble of the air conditioner.  She read laboriously as her afternoon applied behavior analysis (ABA) therapist guided her steadfastly.  Suddenly she exploded in frustration; her hand shot out like the strike of a threatened snake and hit the table with such force she made herself cry out in pain.  She stood and knocked the chair to the ground screaming, “This is too HARD!  I can’t do THIS!  I can’t read THIS!”

Across the room my heart shattered for the seemingly infinite time.  My chest disintegrated as I remained in a similar steadfast and stoic pose to her behaviorist.  In the life of a parent of an extraordinary child, a child with immense special needs, with a rare disease and its accompanying features, including autism, the heart grows the ability to shatter and mend, shatter and mend, in an endless cycle.  

My heart broke and I wanted to run and scoop up my baby girl and whisper all the sweet nothings that I understand so deeply and intimately about her life and let her tell me all she needed to about how hard it was to read that book, but I knew I couldn’t.  There would be a time for that, but that time was not then as much as it grieved me.  

She moved to the couch still screaming like shrapnel flying out from the center of an explosion.  Her ABA therapist calmly spoke to her and helped her identify what she could do to help soothe herself. An audible breath hummed across her lips as she nuzzled down into the couch and let out a rattling grumble.  She burrowed deeply into a blanket and covered herself in it’s soothing fuzz.  Moments later she emerged from her cocoon ready to face the book again.  

The pieces of my heart rose in my chest and found their matches reconstructing like something out of the Matrix.  I watched her strength in awe, still forced to freeze my facial expression in stoic stillness until she completed her task.  I wondered if this cycle would continue like some amusement ride in perpetual adrenaline-laden motion through all her stages of development and my mothering.  I felt fragile like the glassen shards of my heart. 

A calmness suffused her body and she attempted the remainder of the book.  Still halting and jagged she succeeded and exploded, but, this time, in a smile bursting with pride that shone brighter than the rays of midday sun that peaked through the windows’ curtains. Stoic no more, I scooped her up as my heart swelled with pride and relief.  Until the next time.

I wished more than anything things for her were easier.  Second to that, I wished that there were some way to know if my mothering, and all the therapy, were helping her along in her journeys. For now, I follow her and my heart down the roads love and progress may lead.

On Extraordinary Siblings

On Extraordinary Siblings
Finding Hope Through Love

The medicine spilled down my fingers sticky-sweet and thick somehow reminding me of tar.  It found its way onto every surface with long reaching tendrils and glued itself there.  Dammit! I thought, I don’t want to be doing this, not again, not for the seemingly infinite time in her short life, because the sickly sweet antibiotic with its tar like tendrils stuck to me and weighed me down with complete and utter hopelessness.

My mind jogged back to picking up the medication and the scene we caused in the pharmacy drive thru.  A simple sibling fight had escalated to screaming match until he yelled out in frustration, “I wish she was normal!  I wish I had a normal sister!”

I was stunned into silence as the motion of the pharmacy tech’s hand slowed to a crawl in my mind’s eye on its way to hand me the necessary supply of medications for this round of battle.  There is only so long one can stay shell shocked and survive, so I forced myself into forward momentum, turned around and addressed him with a, “We will talk when we get home,” signed the pad, and went on our way.

At home I got to the business of doling meds, as the hot anger churned acidly in my stomach and fear of not being enough to handle this all shook my hands and spilled the drip down my fingers.  How does one address a sibling with the tar of hopelessness stuck to every fiber of one’s being with its accompanying stench of helplessness following one’s every move?

After dosing sister, I sidled up to him on the couch, “Bud, don’t I wish, every minute of every day things were different too?  Your sister is normal.  She is perfectly meant to be who she is; just as you are you.  We all struggle with something and sometimes that is a big thing and sometimes that is a small thing; for her that struggle is a very, very big thing.  I get mad too and wish she didn’t struggle like she does and it’s ok to wish that but it isn’t ok to say that to her.  If you have those thoughts or feelings you say them to Daddy or me.”

I swallowed hard waiting for this impossible-to-understand topic to land in his six-year-old psyche. Hopelessness is pervasive and deep. It will stick to one’s insides.  He has it stuck to him too.  He is small and in a world impossibly unfair and even more improbable to understand.  We have to make some room for him to share his burden even when we don’t like how it sounds.  

The same burden that can make this mom feel weighed down and consumed with a panic that feels like it will never dislodge.  My heart ached for him and broke with the weight of helplessness and hopelessness.  I knew I had to work harder to illuminate the genuine love and hope for his sister and our family that I hold for him and all to see.  

Because, I know right up beside that hopelessness and helplessness is a reservoir of strength, hope, and resilience.  I find it in her smile, his hug, the way they both burst out laughing in the pharmacy drive-thru as I rolled down their window and told the pharmacist that I had two fighting beasts on display if she cared to view; it is in the juxtaposition.  

Yes, I wish every day that I could remove her struggle, but her striving in the face of adversity is what gives me hope.  I would not change either one of them.  Not one bit.  And that is where he can find hope.  In his mother’s love.  That will carry him through the struggles of having a sister with a life-altering rare genetic disorder.   

I moved closer to the feelings of love, agency, and hope as I scuffed the hair on his head.  He smiled ever so slightly through the sadness.  

We’ll make it through. 

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.