Finding Joy

Today Vincent started Kindergarten.  And just like that the pre-school, toddler years are over.  Just like that, he finds himself in a busy classroom decorated with bees and word walls and rules and art.  I find myself in a quite house, something I craved all summer but now find to be too much. 

He was proud of himself, not sad, not nervous when I dropped him off at school.  He feels big and important like his sister.  Elementary schools all over town invite Kindergarten parents to a "Sip and Sob," an opportunity to meet together and commiserate this rite of passage, this ending and beginning for our babies now grown.  Since the social is titled, "Sip and Sob" not "Sip and Weep an Ugly Cry," I decide to head for the van.  Luisa in tow, I buckle her in, climb in the front seat and allow the tears to start rolling.  I'm surprised at the whimper coming from my lips.  It's been bottled up and now I let it go. 

These are not tears limited to my boy all grown up and brave.  These are tears for a closing of a chapter.  These are tears because our family has a new reality.  July 3rd forever changed us and right now I just need to grieve the change.  I need to grieve the loss of our family as it was "before."  I spill tears in an elementary parking lot for a  diagnosis 5 weeks new.  For a little girl who will not experience "typical" preschool years and a family now radically shifted. 

I cry over our little cottage in Homewood, Alabama.  The 3 bedroom, tiny house bursting with so many memories.  I sit in the parking lot and remember cheap, blue swimming pools filled with frigid hose water.  One summer we splurged for the pool with a slide.  It offered more fun than a day spent at an amusement park.  Giggles and squeals and a backyard muddy and squishy with so much water.  Pulling the tiny kiddie slide and placing its bottom directly into the pool then running the hose down the slide so the kiddos could slide fast into the water.  Toddlers in kiddie pools and sprinklers are joy and energy and discovery and laughing. 

Sophia is 3 1/2 and Vincent is 2  years old in this video.  For those of no blood relation, this video might bore you as it is quite long.  Yet it is a miraculous video!  Kicking legs in water, crouching then standing on a slide, so MANY words.  "Get away you rotten shovel!"

 

I will miss mornings spent watching Sesame Street, fighting their chubby little fingers for a taste of Cherrios in the bowl placed on my lap.  Resting my cheek right there on the top of their heads.  Wondering contently, "What will we do today?"  A schedule open and blessedly void of "appointments."

Vincent at 2 years old.  Again this is quite long but again, the talking and the movement and the joy....

Walks to Rainbow bridge and hours upon hours upon hours exploring the neighborhood.  Stopping for lattes, swinging at the park, or maybe the library for books we will balance on top of the stroller, treasures to open and read before bed.  Trips to Edgewood Creamery where Tony likes to say we paid a 2nd mortgage during residency.  Seeing their faces so red and sweaty and full of joy.  Picnics.  So many picnics.  Jumping in the pitiful creek at Overton Park.  Tiny voices talk, talk, talking and shouting Momma!  and Daddy!  and Come get me!  and Can we please? 

Luisa says so little.  I haven't heard "Momma" all week.

Luisa starts her high pitched scream, my signal to wipe the tears, start the car, and get her home as soon as possible. I pull out of the parking lot and turn on the DVD player, with the hope it will soothe her screeching. It works about half the time. It didn't work today.  I need to stop for groceries before heading home. Life isn't put on hold for a heart that grieves. We must power on, especially as mothers.

In the store parking lot I scroll through my Facebook feed and see links to world atrocities and I feel guilt for this sadness over Kindergarten. But I decide to allow myself tears this morning because I'm pretty sure Jesus wouldn't tell me to get a grip. He knows my heart, I might as well give it to Him, grief and all.  I walk into the grocery store armed with snacks.  Luisa is content as I fill the cart with pre-packaged cookies and crackers for this week's lunchboxes.  We stand in the check-out as a little boy calls out to me from behind, "Hi!"  He smiles as if we are the best of friends.  I smile and ask the mother, "How old is he?" The torturous question I feel compelled to ask any mother with a child near Luisa's age.  "20 months," she replies.  "And yours?"  "22."  I conceal the tears by bending down to retrieve the diapers from under the cart.  Why do I do that to myself?  Ask their age? 

When we get home I make a rather irrational decision to let Cookie Kitty inside (Tony and I are both allergic).  I like to watch Luisa with him.  She squeals in delight and pulls at him.  Sometimes she will even say "ka."  Cookie lies lazy on the floor, allowing the torment until I relieve him with a bowl of milk in the garage.

I'm only 5 weeks into a diagnosis for our little girl.  Yet the grief is 8 months old.  In January Luisa's baby friends were learning to walk while she sat content on the floor, no desire, no movement to pull to stand.   A mother's heart knows.  So 8 months in I am learning how to find joy in our "new normal."  Today I said goodbye to the spontaneity that defined Sophia and Vincent's preschool years.  Luisa's preschool days will be filled with therapy after therapy.  Therapy that causes much crying, frustration, and grit for Luisa.  During her preschool years there will be shorter trips to the zoo, as she loses interest quickly.  More time at home.  And while there will be many toys and trips similar to the "typical" preschool experience, Luisa will process and interact differently because Retts makes it hard for her to interpret and participate in her environment.  Despite this "new normal," I know a new joy will be found.  I know it will....

"Weeping may remain for a night, but rejoicing comes in the morning." Psalm 30:5b

Right now joy looks a lot like purpose.  Splurging on fancy baby lotion because I want her therapists to think she smells sweet.  Joy looks a lot like rubbing lotion into her legs and on her neck so that the beat, beat, beat of her heart releases the pleasant fragrance.  Joy is choosing new hairbows and clothes and practicing her hair so I can get it just right.  Joy looks like tasting the smoothies I so carefully researched and finding that YES! it tastes great.  Joy is watching her eat a whole pouch of these homemade smoothies, knowing the calories will add to her body the fat that is lacking.  Joy is knowing the vitamins are in there and maybe, maybe I can heal her in some way....  Joy is looking into her blue eyes and feeling a deep sense of purpose.  As she nears two she is not growing more independent, not walking, not able to communicate her needs.  While this brings me deep sadness, it also brings me great purpose.  Joy is finding ways to meet her needs...
 
Joy is seeing the young man serving at the Southeastern Retts Conference welcome table .  He stood out for his eagerness to help all of us find our packets and seats.  I found out later that he is the older brother of one of the adult girls with Retts.  His love for his sister was apparent in his service and the hugs I saw him give her on the side.  Joy is knowing that although they did not choose it, Sophia and Vincent are gifted with great purpose and an understanding of the world few are afforded.

Joy is knowing that because I am His and Luisa is His, somehow this Rett journey will be used for His purposes and glory (Romans 8:28).  What a great day in heaven when we will understand it.

Joy looks a lot like perspective.  I am not facing the decisions and the horror and the tragedy found on the news and our Facebook feeds and in our cities.  Even on the Retts journey, perspective brings joy.  Luisa is using her hands right now.  And standing.  And is seizure free. Someday that may not be her story.  But today it is.  So I will take joy in this. 

Joy is being granted days, months, and years of this kind of happiness.  To have expierenced this kind of joy is a gift many are not afforded and I will be thankful:

I will not overlook past blessings because I am grieving today's losses.

Joy looks a lot like hope.  Joy is hearing stories of 10 year old girls with Retts fully included and making A's in English because they have the communication tools in place to let the world know how much is upstairs in their beautiful but broken brains.  Joy is therapy sessions like this:

when Luisa shows us that she knows what a key is.  A key!!!!  We will celebrate each milestone with fervor and deep gratitude.

Joy looks like Rett's mice who after a miracle injection no longer wring their hands and start walking normally.  Joy looks like human trials and brave families paving the way for a cure for all our girls.  Joy looks like Strollerthons and Lemonade Stands and fundraisers where people join together in support and a cause that will change thousands.

And this afternoon?  Joy will be my boy climbing in the car, a brain unbroken and full of new knowledge.  Stories of new friends.  And later tonight he will sleep deep because he ran and jumped and climbed at recess.  What a miracle.  What a joy.

Time for a new normal.  Time for finding new joy.

courtesy A Bryan photo

 

"He put a new song in my mouth, a hymn of praise to our God.  Many will see and fear and put their trust in the Lord." Psalm 40:3