…until I realized I was consumed by guilt.

 

 

Ula is hiding beneath the covers.  She is embarrassed.  We’ve just come home from yet another eye appointment that stretched out for several hours.  It ended abruptly when she accidentally broke an eyeglass display on the doctor’s desk.  She didn’t mean to.  She was examining it.  She dropped it.  That kind of thing happens a lot for Ula.

I am trying to get her to come out from hiding.  “I’m not angry with you,” I speak assuringly,  “That appointment was going on too long anyhow.  Something had to break it up.” I pause and recognize the pun.  “Literally,” I add.

I hear a giggle.  The cover lifts slightly, and the lamp light bounces off one of the thick lenses on her glasses.  Before I can make out a smile, the cover snaps back down again.

I reach under and stroke her hair.  I sigh.  “Stop worrying about it, sweetie.  Just remember to try to keep your hands to yourself in those situations.  Maybe try sitting on them…”

The cover whips back.  Embarrassment has suddenly been replaced by the full force of a seven-year-old’s diatribe.

“Mom.”  She is on her knees, her hands on her little hips.  “This is what you need to understand.”  She points to her right eye.  “This is my color-see-er.”  She points to her left eye.  “This is my navigator.”  Then she removes her hands from her hips and wiggles all ten fingers in front of my face.  “But these are my eyes.”

My stomach un-knots and the tension of the morning unravels into a full belly laugh.  Ula has stated her truth.  The force of my spirited child has returned.  It is my job to keep her here, to keep the magic that is my Ula from melting away under the strain of shaking heads and shrugging grown ups that are beginning to surround her as we work through her amblyopia.

This past week, between driving to appointments, meeting with doctors and therapists, and doing our home therapy work, Ula’s eyes have consumed roughly 18 hours of our time.  That doesn’t count the time spent in normal homeschool lessons, where I try to figure out how to help a visually exhausted child learn her basic subjects while investing every last shred of my spirit into preventing her self-confidence from slowly transmogrifying into self-doubt.

In this moment, on the bed, we have a moment of victory.  Ula’s self-realization about the importance of her sense of touch to navigate her world has renewed her spirit.  It is just who she is.  We laugh, we hug.  But my mind is already someplace else.

It is worried about Saoirse, my eleven-year-old academic sponge.  Compared to Ula, school is a breeze for Saoirse.  She was reading before we thought to teach her to read.  She remembers every little fact that floats before her eyes in the form of the printed word.  I take a few minutes each day to review her math lessons, not because she needs the teacher, but because she enjoys the contact time.  For everything else, she is too often on her own.  I consider enrolling her in school.  Perhaps, if only for this year while we try to bring some resolution to Ula’s vision issues, she would be better served there.  But when I bring it up, she shakes her head in horror.  She is in no way behind, and she doesn’t want to be pushed any further away from my side.

She needs me right now as much as her sister does.  Her body is changing, her ideas are changing.  At the same time that her mind grows more independent, her soul craves my touch.  She wants constant contact.  She clings to my hand every chance she can get.  At bedtime, she still wants me to read to her, then fights with her sister over who gets to sit closer, until I am falling out of the bed.  When we take the dogs for their evening walk, she pushes to keep Ula away from me, clings to my arm, won’t let me go.

I allow it.  I feel guilty.  I know my time is consumed with Ula, and Saoirse is in need of just as much parenting as her little sister.  But I don’t feel good about it.   I feel like I can hardly breathe. I want to enact a forcefield around my body, to tell them not to cross it for the next several hours.  I resist the urge, and then, at a moment when none of us expects it, I lash out in anger.  “Let go of me!  Give me space!  I need air!”

On Wednesday morning, I slip out of the house before Bob has to head down to the farm.

The dogs and I head out to Rossman Pond, where I perch on my favorite rock and drink in the color of the red maples and the tawny ash leaves as they reflect off the water.

“Now just remember one thing,” the voice of my dear friend Cornelia, a child development specialist, echoes in my mind.  It is a memory from  a conversation we had just after Saoirse’s birth, over a decade ago.  “The job of children is to eat you alive.”  She said it to me so plainly and sweetly, I laughed at her then.  I thought she was joking.

But as I cling to my solitary rock beside the water, I realize she was not joking at all.  They are eating me alive.  Suddenly, a macabre vision of my body appears in my vivid imagination, hacked apart with an axe, each child hoarding whatever pieces they can steal from the other, then hungrily devouring it.  My disembodied heart beats alone in the center of it all.  I begin to cry at the vision.  Part of me worries that there is simply not enough of me to satiate their appetites.  I wonder how I can possibly make more of myself, if there is a way that my heart can be split in half for each of them.  The other part of me wants to scream out in rage, to lay claim to the beating heart for myself.  I know my vision is overly dramatic.  But I watch this scene in my mind for a few moments as a purgative stream of frustrated tears glides down my cheeks.  A good self-pitying cry makes me feel better.

My time at the pond is short.  I must head home.  I need to get Saoirse started on lessons.  I need to begin Ula’s vision therapy.  As is my habit, I begin reviewing my calendar for the coming week: A meeting with the school psychologist and the committee on special education on Wednesday, a clinical functional vision exam in Boston on Thursday, a vision therapy session an  hour away on Friday, then packing for the farmers’ market Friday afternoon, then farmers’ market on Saturday.  My breathing grows shallow.

I stare up at blue sky, deckled with falling leaves, trying to drink in sips of inner peace.  At that moment, I don’t know where the voice of reason comes from, but suddenly it pulses mercifully through my brain.  This is your life right now, it tells me.  And you can go through this next year bouncing back and forth between guilt and resentment, or you can go through it with gratitude.  

I re-play the events of this week.  Ula has gone through 18 hours of exams, car seat confinement and therapy, and only shattered one object on a professional’s desk.  She has remained cheerful, bringing her sense of humor to every setting, making faces at me behind doctor’s turned heads, cracking jokes as bright lights flash in her face, rolling her eyes when doctors say stupid things.  She has begun to explain to me what she sees: “Mommy, you told me where to put a comma, but the spot you showed me keeps jumping around on the page.  I can’t find it.”  Meanwhile, she has followed me into the kitchen.  We’ve learned we can hone her concentration with knife work.  A tiny bit of danger helps her to calm down and focus, and eases my cooking work.  Meanwhile, Saoirse is so darn clever, she is able to juggle her work with little intervention for the time being.  She needs my conversation time and a few hugs, but she can handle her academics while I give Ula the attention she needs right now.  Saoirse, too, has picked up the kitchen work, choosing days to shoo me out of the kitchen so I may work with Ula while she prepares lunch.  This is our reality right now.   And these kids are handling their end well.  Now it is up to me.

I walk back into the house.  Saoirse has started her lessons on her own.  Ula is scrubbing potatoes for lunch, an audiobook plugged into her ears.  .

I won’t be a perfect mother to both my children this school year.  I will do my best.  But I will not allow my heart to be devoured, either.  I will find my solitude, and I will take care of myself.  And rather than feeling guilty for not giving each child every thing they deserve, I will feel gratitude for the grace with which they accept my limits.  I walk over to Saoirse, who is sitting at my desk and wrap my arms around her.  “I just want to thank you,” I whisper in her ear.   “I am aware of everything you are doing to make this year work for us.”  In response, I get a wide smile.  I do the same with Ula, and we begin another day.