Mean

It is 4:30 a.m. and Luisa wakes with screaming.  I roll over, check my phone clock and sigh.  These night / early morning wakings are infrequent enough to cause us to grow comfortable with 8 hours of sleep but often enough that I rise resigned.  As I stumble across the hall to her room I wonder if she will be easily calmed this morning.  Or will she get worked up, difficult to soothe, screaming, head thrown back as if in a night terror?

As I enter the room Sophia mumbles from her bed next to the crib, "Momma!  Why is she CRYING!?!?"  Hand over her ears, hair covering her face, voice groggy but urgent.  She is warm under her covers pulled up to her chin, eyes only half open.  Her question is one of pleading.  So I tiptoe to her bed first, allowing Lu to continue in her screams a moment longer.  I whisper in Sophia's ear, "Go to momma and daddy's bed," as I kiss her cheek.

Sophia stumbles out of bed, out of the room, and into our toasty bed across the hall.  I pick Lu up who has grown stiff with screaming.  Head back.  Shrillish.  I cover us both with her purple blanket, force her head down on my chest and begin to sing.  She does not soothe easily and bucs against my hand forcing her head down.  Then she begins to bang her head against my chest, throwing her head back then slamming it on my breastbone.   I am tired but on autopilot.  I run through my mental checklist:  When was her last BM - could she be constipated again?  Did she get her reflux medicine yesterday?  She has on her thermal onesie so she couldn't be cold.  How much did she eat for dinner?  Could she be hungry or thirsty?  Based on the intensity of her wails and the throwing of her head, I know this will be one of those times she does not settle until I place her back in her crib with her bunny.  This breaks a momma's heart when your touch only makes your baby more agitated.  When you can't seem to figure it out.  So after offering water and trying to soothe a little longer I place her back in her crib.  And between the screams I tell her I love her and "here's your bunny," and "go night-night."  I tiptoe out of the room and Luisa goes silent before I get back to my bed, slide under the covers, to nuzzle my nose in Sophia's neck.  Whatever woke Luisa in terror or pain has ceased.  Yet I wonder if she is wide-eyed in her bed?  I fight the temptation to go back in, knowing it will only make her get worked up again.

Tony is up and getting ready for the day and I calculate about an hour more of sleep/resting before I too will need to rise for the day.  Luisa will most likely fall back asleep or stay content in her crib for at least another hour.  Her crib and her bunny are her "reset" place, the place where she can decompress, be away from environments and people that are overstimulating. 

I encircle my arm under Sophia's as I entwine my hand with hers.  She snuggles closer to me and we lay there awhile.  Then she whispers in the quite warmth, "Momma, why does Luisa cry?"  "Is she hurting?"  "Do you think she is thirsty?"  

"I don't know if she's hurting Sophia.  I don't think she's thirsty.  I offered her a drink," I answer quietly, proud that my eldest has thought so specifically about Luisa's needs but saddened by my lack of knowledge or answers.

"Then why does she scream?" Sophia asks, her voice somewhat desperate.

"Well love, I think it's the Rett Syndrome.  Maybe her tummy hurts because of the Rett Syndrome. Maybe she is afraid.  Girls with Rett Syndrome have anxiety.  Do you know what anxiety is?"

Thoughtful pause then, "Yes.  It is when you are scared."

"Yes.  Sometimes I think Luisa is afraid.  You can see it in her eyes.  She looks afraid.  And you know what?   You get afraid too don't you Sophia?"

"Yes."

"But when you are afraid your brain lets you calm yourself down with your thoughts.  Or you calm down because Daddy and I hug you and sing to you.  And your brain lets you calm down.  With Luisa because of Rett Syndrome, her brain doesn't allow her to calm down.  So instead of being soothed by Mommy and Daddy she gets more worked up because her brain is anxious and doesn't know how to rest."

We lay silent for a bit and I grow drowsy with her soft, brown hair against my cheek.  

Then the warm quiet is broken with her gentle voice.

"Momma sometimes her brain is just mean."

I hug her closer and say "Yes.  Yes you are right.  Sometimes Luisa's brain is just mean to her."  

We lay there quietly and I let her words sink in.  There really is no better description.  Sometimes a brain inflicted with Rett Syndrome is mean to the little girl within whom it dwells.  I want to sneak back in the room and whisper to Luisa, "I'm sorry your brain is being mean to you."  I'm sorry your brain won't allow you to calm down, that it lets you spiral out of control.  That it sends you in confused wanderings through the house.  That it keeps you from understanding how to play.   That it seems cloudy at times.  It is mean to you but yet, Luisa you are so patient.  You work so hard to come out from under it.  

I see it in your therapies.  How your brain wants you to stay fixated on your duck or on your wanderings and you fight.  You fight to engage.  To turn the page to that book.  To choose that picture card.  To turn that knob on the pop up toy.

Sometimes our little girl fights her way through a brain that fights against her and our true "Luisa" comes out.   In the midst of  your aimless wandering you hear your big brother crying as he gets antibiotic drops in his eyes to treat a bout of pink eye.  You look up from the rubber duck you are holding and biting and you walk straight to your brother laying across my lap and you plant a kiss on his shoulder.  Tenderness, empathy, deliberate action.  This is my sweet girl.  I smile, squeel, and say, "Vincent your sissy loves you!  She is sad you are hurting!"  He jumps up from across my lap and goes over to her and says, "Thank you sissy.  Bubba's ok."  

There's this part of your brain, Luisa that is untouched, unimpaired.  And this is the part of your brain that loves people.  That seeks approval.  That pats the baby.  That kisses your hurting brother.  That gets her feelings hurt.  That laughs at your sister and brother.  That reaches up and touches your daddy's face when he is talking to you so sweetly.  That looks so lovingly at your mother.  That squeels and shrieks with delight when you arrive at The Bell Center after two week off.  That will sometimes say "Hi" as you smile at a stranger.

Little Luisa, somehow these moments when your brain is at rest, allowing you to be you, these moments are more precious than a million ordinary moments.  These smiles and kisses and pats on our face precious like emeralds and rubies.  Their beauty outshining all the moments when your brain is being so mean to you.  

You have four people (well, many many many more than four) who love you dearly, Luisa.  Four people who delight when you push your way through Rett Syndrome's cloud.  Four people who shout and whoop with joy when you kiss us as if we have discovered a diamond mine.   

Brains that are broken, bodies that are crippled, hands that are declining in function.  The words of an older, wiser mother of a daughter with special needs come back to me now, "There are broken bodies but there are no broken souls."

And so, Luisa Ray your brain may be mean to you sometimes but your soul?  Your soul is as beautiful and pure as the Paperwhites now breaking through the cold, hard winter dirt.  Your soul is in tact.  Your soul most capable.  Your soul an image of His.  Your soul.  Not mean.  Not broken.  But whole because He made you with His hands.  He willed you into life.  He loves you.  Hears you. Understands you even when we sometimes do not.  He is at your side.  He is near.

O Lord, you have searched Luisa

and you know Luisa. 

You know when she sits and when she rises;

you perceive her thoughts from afar.

You disern her going out and her lying down;

you are familiar with all Luisa's ways. 

Before a word is on Luisa's tongue

you know it completely, O Lord.

You hem Luisa in - behind and before;

you have laid your hand upon Luisa.

Such knowledge is too wonderful for Luisa,

too lofty for her to attain.

 

Psalm 139:1-6 (with my insertion of "Luisa")