Daydreaming

I am a daydreamer, a ponderer, a mental author of best and worst case scenarios. I am a daydreamer and this is what I imagine.

I imagine my children grown.  I imagine Sophia impassioned with each new stage of learning.  I imagine the questions she will ask as we delve deeper into The Civil Rights Movement, The Flood, The Holocaust, World Literature.  I imagine her brown eyes so thoughtful in a body so grown.  I imagine Vincent sitting at my my table all muscle and height.  I imagine him devouring his dinner then serving himself more with a “Thanks Mom,” mumbled before leaving for baseball or football practice.  I daydream of Grace going to Kindergarten.  So independent and spunky, my last baby off to school with a lunchbox in hand.  Envisioning my grown children is like envisioning the surface of Mars.  It feels far away, removed, not quite real but oh so interesting and beautiful.

 I daydream while I watch Luisa sleep.  I daydream of her at stop lights.  Before I rest my eyes or when waiting for the color to set in my highlighted hair.  In the shower at night.  In carpool.  While swinging the kids outside.  My daydream for Luisa is of a girl cured.  A daydream of a world of girls cured.  A imagine a cure for Rett Syndrome as I watch other children Luisa’s age play and interact at the park.  In my imaginings mothers and fathers anticipate the release of a drug that will bring healing to their daughters.  We ask, “What form will it take?  Pill, shot, lab work, blood draw?  How long until we see a difference?”  

Sometimes my daydreams are fantastic scenarios played out behind my eyes.  Lester Holt on NBC Nightly News introduces headlines of international conflict and national economics, of natural disasters and perhaps a sports story or two.  His voice is set to the backdrop of peppy music but we cannot see his face as images of the top news stories flash across the screen.  When the music stops, the viewer is brought into the news studio where we find Lester Holt at the news counter, looking serious in his dark rimmed glasses.  He rotates his chair slightly to face the camera, glances down at the paper in front of him and then says, “But first this:  All eyes tonight are on a special group of girls and women suffering from a rare but devastating disease, Rett Syndrome.  Researchers and physicians worldwide have gathered in Boston to review the findings of what may be one of the largest scientific breakthroughs seen in the fields of pediatric and adult neurology:  a cure for Rett Syndrome. Let’s go now to Boston, Mass where we will meet lead researchers and families participating in this profound pharmaceutical trial.”  The news story then shows footage of wheelchair bound girls receiving injections followed by videos of girls months before and after the injections.  Girls who could only sit and not stand are beginning to walk unaided.  Attention to task improves.  Hands are stilled and toddler girls diagnosed with Rett Syndrome are bringing spoons to their very own mouths!  Then there is a short clip of Luisa as she slowly but clearly says,  “Daddy.”  Tony is leaning close to her with his eyes glistening with tears.  I sit beside him, smile broad, back straight with pure joy radiating from every pore.  I share proudly to the reporter, “Can you believe it?  Words came back slowly but now she’s saying ‘brother’ and ‘yes,’ and ‘stop,’ and ‘sister.’  Yesterday we heard what sounded like ‘love you!’”  

All the words I long to hear outside my daydreams.  

If there is a place somewhere between "daydreams" and concrete “reality” that would be where the cure for Rett Syndrome awaits.  While we are one step closer to a cure with the discovery of the mutated gene that causes Rett Syndrome (MECP-2) and the reversal of this mutated gene in mice we are still far from human trials.  In the mean time monkeys and mice who wring their hands are receiving treatments while our daughters wait.  This is o.k.  We can wait and we can dream.  In the mean-time we will take our girls and women to therapy and doctor’s appointments.  We will keep them healthy and happy and ready for a cure.  

Do you know what is NOT a daydream?  Pharmaceutical drugs and therapies to alleviate the symptoms of Rett Syndrome.  Right now there are 3 drug trials and therapies being funded by Rettsyndrome.org - Sarizotin, Trofinetide, and Recombinant Human IGF-1 therapy.  We are beyond mice and monkeys and animals with these trials.  Our very daughters are receiving treatments and while there is more time needed to determine efficacy and safety the reality of a drug to help our daughters is right around the corner. 

I may be a day dreamer but I am also a DOER.  This is why we fundraise.  As of today, I have no pill to give Luisa to ease her struggles.  Caretakers of girls with Rett Syndrome manage each symptom as best they can.  At different stages of the disease certain symptoms may take precedence over others.  Seizures.  Anxiety.  Hand wringing.  Loss of verbal skills.  Gastrointestinal issues.  Anxiety.  Breathing issues.  Cardiac abnormalities.  Mobility.  Scoliosis.  Osteoporosis.  Bone fractures.  Surgery.  You beat back one fire at a time and all the while Rett Syndrome threatens to overtake your daughter, your family, your own physical health.  This is why we fundraise.  We want something to give our girls to ease their suffering.  Rett Syndrome is classified as a “rare disease” and as a result is often overlooked for federal grant funding.   We are not deterred.  Families everywhere put on large galas, small bake sales, t-shirt sales, Lemonade Stands.  It is something we can DO to help our girls.  It is something you can DO.

There is one daydream more joyous than even a cure.  More sure than any effort at fundraising.  It is a promise from the One who always proves faithful.  It is the promise of Luisa running on glittering gold streets.  She will be so new, so perfect, so beyond anything I can daydream that I will have a hard time recognizing her at first.  Then I will see her topaz blue eyes and as my heart fills with a delight that threatens to burst it in two, she runs to me and says, “Momma!” Her smile is perfect and her face is free of scrapes and scratches and there are no braces on her feet.  I fall to my knees to receive her embrace.  Her hands hold tight around my neck.  It is a strong and long embrace.  This is the reality of things to come, of a place where bodies are made new and Jesus Christ Himself sits on the throne. 

“They will be his people, and God himself will be with them and be their God.  He will wipe every tear from their eyes.  There will be no more death or mourning or crying or pain, for the old order of things has passed away.” Revelation 21:3-4

In the mean-time I will pray for a drug to ease Rett Syndrome’s symptoms and I will pray for a cure this side of heaven.  I will also DO.  I will fundraise for scientific research and for organizations that support Rett Syndrome families.  I will pass out cards and write blog posts and hopefully make some small difference in the life of my daughter and in the lives of all girls affected by Rett Syndrome.  In the mean-time I will delight in Luisa and in the things about her I would never daydream away:  her smile and how it crinkles up her eyes, her absolute delight in Elmo, how she laughs when we fuss at her baby sister, and her uncanny ability to bond with sensitive souls.  I would never daydream away the richness, depth, and joy Luisa brings to our lives.  

Tonight let’s daydream of lemonade and bouncy houses, face painting and craft markets.  Let’s make the daydreams of cures and pharmaceutical drugs a reality for our girls with Rett Syndrome.