I have now experienced 10 Mother’s Days as a mother. I smile as I look back at past Mother’s Days. There were Mother’s Days where I sighed with relief, smiled big at the gift of an afternoon without little ones around my feet, a few hours of silence, a coffee shop with a corner just for me. There were Mother’s Days fraught with tears. Tears over my insufficiency, tears over dreams for my children that needed to change, morph into something new and drastically different. Mother’s Days with so many cards and crafts and funny little interviews of my preschool babies written down by their teachers, laminated and now preserved in memory boxes. And every Mother’s Day with breakfast served syrupy, barely contained on the rectangular tray precariously balanced on my lap.
10 Mother’s Days create a beautiful mosaic of the soul-sanctifying work of motherhood. This Mother’s Day was an example of the glorious ordinary of motherhood. We stayed close to home, spending most of the day outside. The day afforded brief snippets of alone time with each of my children. Going for a walk, chalk painting, swinging in the hammock, snuggling in the chair. Mother’s Day 2017 was ordinary in agenda but extraordinary in the company of my children, in the company of my husband.
There is a popular trend nowadays of memes and videos featuring sarcastic, witty mothers complaining about motherhood under the guise of humor. These bring the comedic break we all need to our day. Motherhood can be so outrageous, you have to laugh. Yet I wonder if these somehow take away from the awe and beauty we should find in the vocation of motherhood. Children are a GIFT and motherhood - however unattractive it looks and feels - SACRED. When I truly ponder my role as a mother? When I stop complaining about motherhood and stop counting what it takes away from me? When I look into the innocent eyes of my children and see myself reflected back? Well, the responsibility brings me to my knees, causes my breath to catch in my throat and my eyes to shut in prayer. I spend most of my days feeling like I make little difference in this world. I fail constantly as a mother. I yell. I never seem to have the bag packed with the right things. I spend fruitless hours cleaning the house. The children’s noses are disgusting most of the day. I don’t read to Grace as much as I should. Special needs mothering? It’s a black pit of inadequacy. And yet on Mother’s Day I remember - it is the extraordinary ordinary that counts in the end. I am here. I offer a smile. A gentle touch and the words, “I love you.” “You are important to me.” “You can rest right here with me child.” “I will feed you.” “I will pick you up when you are scared.” “I will try to order your world.” “You are not an inconvenience to me.” "You were created by a loving God." This is the extraordinary ordinary we offer our children in our mothering.
Tomorrow mothers will return to work, work from home, work inside home, whatever label you want to put on it matters little. The point is tomorrow we will quietly continue in our mothering while fulfilling other roles. While the chores and routine of motherhood may be ordinary on Monday morning, let us not forget our influence is extraordinary, our children - a GIFT. Keep on. Keep on. Keep on. One foot in front of the other in this extraordinary ordinary role of motherhood….
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.
Two years ago on July 3, 2014 we carried Luisa 20 months young into a building that seemingly held the yes and no of our future. The test results we would receive that day were as immovable and solid as the brick and mortar building we now found ourselves entering. This day would end our search for answers. This day we would place our little Luisa on an examination table where her feet would be measured, her height and weight graphed, and her head measured for clues. We would answer exhaustive questions. I knew the answer to almost every one. Two years ago today I entered the tiny exam room convinced for the first time in 6 months that despite the genetic results my blue eyed baby girl would not have Rett Syndrome. She would be an anomaly. She would have the genetic markers and miraculously not actually have the disease. She would not lose the words she was currently saying. "Bubba, duck, baby," She would not lose the new words she was learning every week. They would not disappear. She would not lose hand function. She would not start wringing or putting her hands in her mouth, or clasp them over and over again in an nonsensical pattern. No she would not.
I dressed her in a new outfit, blue stars on a white bubble. Tomorrow would be the 4th of July. I wanted her to look festive as if diagnoses and diseases did not exist, just fireworks and hot dogs. Celebrations and a mother who didn't always look so worried. Luisa sat blue eyed and chunky cheeked on an examining table, oblivious to the gravity of the words, "Rett Syndrome." Two years ago she smiled and touched the famous Dr. Percy's face while he squeezed her feet and spoke so sweet, so kind to her. Luisa touched his face and she did so without hitting him. She could feel his whiskers, her very favorite thing, and she could do it with control. She would smile at him and the examination would mean very little to her. For two pale-faced parents, for Tony and Sarah, it would mean a line in the sand. A before and an after.
We answered questions and the professionals so kind charted and graphed. They rated and circled on their tablets. Then at the end Dr. Percy cleared his throat and began to go through the rating scale, where she fell on this or that criteria. He finished reviewing his notes and before another breath could be taken I asked, "Does she have Rett Syndrome?" And the answer was, "She meets all criteria for classic Rett Syndrome." For the first time since we entered the room there was silence. Holding my Luisa I said through tears, "Well I thought so but I hoped maybe not." I had argued with every doctor for the last 6 months trying to convince them she needed to be tested for Rett Syndrome. This was the one time I did not want to argue. My back longed for a reassuring pat, a "No, no. Despite her blood results and your exhaustive observations confirming this diagnosis she does not actually have Rett Syndrome." But no. No. This heart-breaking diagnosis was filtered through God's hands in my womb and on July 3, 2014 it landed heavy in our laps, It would be a full year before I would feel somewhat normal again. As a mother, as a person I would never be the same.
Two years later Luisa has no words. The last to disappear was "momma." She said it on Mother's Day 2015 and then it misted away. I'm not sure the exact day when she went silent but now only screams remain. Two years later when she touches others it is rarely gentle. Often she slaps or hits. Her brain, now full of bad proteins, causes her to have dyspraxia. She knocks everything off the table, she slaps when she wants to touch, she throws her arms in the air when she wants to wrap them around our necks. On the few occasions Luisa is able to touch her baby sister, she manages to touch her gently. It is with the greatest concentration that she performs this simple task of touch, this basic human interaction. Her ability to pat, to touch, to lift her arms for a hug, they are rare and someday may disappear all together. Two years after Luisa's diagnosis I can bluntly and honestly say she is not the same. Rett Syndrome is cruel. I will not lie about it or gloss over it to make others more comfortable with suffering. But I also will not lie and say God has turned His face. I will not say He does not care. I will not say this of my God. I will not say that when the answer is "no," He is somehow not the same as when the answer is "yes." That He was more loving when He handed me beautiful, healthy, thriving babies who talked and laughed and played than when He sovereignly entrusted me with Luisa, a daughter fully dependent. He was loving then and He is loving now and He will be loving forever. Because God is LOVE. And God is PROVIDER. And God is GOOD. This is the greater truth. Greater than lost skills and stolen words and hands so dysfunctional. He is greater than a momma's heart broken, a marriage tested, a world that suddenly seemed so very weary. He is greater and this is truth.
Today, two years after Luisa's diagnosis we attended the birthday party of a blond haired, blue eyed boy four months older than Luisa. He is four and he holds up 4 fingers to let you know. He uses sentences to talk but is shy about talking with lots of people around. He likes dinosaur robots and Paw Patrol. He is the son of one of my dearest friends. The friend who went with me to Luisa's first neurology appointment. The one who sat with me for half a day when I received the genetic results by phone before Tony could scrub out of surgery and rush home to his family. This sweet 4 year old boy attended Luisa's 2nd birthday, four months after her diagnosis. Luisa's birthday party smack dab in the middle of her regression. He attended and my heart could barely stand the sight of what would never be. It physically pained me. I cried that day. I cried most days that year.
How poignant two years after Luisa's diagnosis to attend this sweet boy's birthday celebration and feel nothing but joy for him and his family. To look over at Luisa and feel pleasure not pain at who she is. She is my Luisa and I have grown to see her through a different lens. A lens not darkened by visions of what could have been. A lens clear and proud of who she is today. Proud of her squint eyed smiles and the love she so readily gives those in a room. I inwardly laugh when she charges up to an adult, disturbing them from their mindless iPhone scrolling, demanding they acknowledge her presence, look her in the face, smile back at her. I enjoy watching others interact with Luisa, how her beautiful brokenness exposes the human heart. Two years later I attend this birthday party. I laugh. I think the birthday boy is the cutest ever. I do not feel bitterness and I KNOW this is God's grace.
Two years later I move from singing desperately "Strength for today," into confident "Bright hope for tomorrow. Blessings all mine. WITH 10,000 BESIDE." I can sing this even though tomorrow may bring scoliosis or seizures. Surgeries or wheelchairs.
Yes today, July 3, 2016 Tony and I pause to remember but we also kneel in thanks. Thanks that we serve a God who provides new mornings and second chances. A God with power to transform hearts and heal wounds. A God of purpose and peace. At the end of this day, two years later, I confidently say Rett Syndrome is not the yes and no of our future. God is my yes and my no and I leave it all in His hands. He is good. He is faithful. He is sure.
There is not a better example of “common grace” than Spring-time. Common grace, also known as “general grace” is defined as “non saving grace in which blessings are given to humanity for physical sustenance, pleasure, learning, beauty, etc. as expressions of God’s goodness. It is particularly contrasted…. with God’s special or saving grace.” (McKim, Donald K., The Westminster Dictionary of Theological Terms, Second Edition). Common graces are the gifts given all mankind regardless of their belief system, faith, or acknowledgment of God the creator. How gracious and good is our God to lavish mankind with the beauties of nature, the breath of babies, the animals all around, intellect for scientific discovery even if we never choose to acknowledge Him as the giver?
Every good gift, every perfect gift, comes from above. These gifts come down from the Father, the creator of the heavenly lights, in whose character there is no change at all. James 1:17
Spring-time walks made beautiful by eyes specifically created to see color, not black and white. Spring-time with the Forsythia shooting out from it’s bush, out from the winter neutrals, shocking our color starved eyes with life and beauty. The rest of nature snoozes in hibernation as Red Bud Trees awaken and sing of the new morning. Daffodils dwarfed under trees trumpet with their blooms God’s love song. Paper Whites shyly whisper beside….. Spring is coming. And in every petal, in every bud about to blossom is God’s message, “Broken humanity, I love you. I love you…..” The azalea flowers will soon clump together, every hue in the rainbow proclaiming, “I bloom for He is good….” The hydrangea bush in the shade will not collapse under their rotund blooms. They will hold their weight and will say, “God is gentle and kind. Masterful and sovereign over all creation.”
For ever since the world was created, people have seen the earth and sky. Through everything God made, they can clearly see his invisible qualities—his eternal power and divine nature. So they have no excuse for not knowing God. Romans 1:20
Birds will hatch, goat kids will be born their ears floppy and soft. God will feed them from His very hand…
Do you hunt the prey for the lioness and satisfy the hunger of the lions when they crouch in their dens or lie in wait in a thicket? Who provides food for the raven when its young cry out to God and wander about for lack of food? Job 38:39-41
All this glory and yet nature is not where God sets His sight, pours His love. Mankind is the object of His love…
When I consider your heavens, the work of your fingers, the moon and the stars, which you have set in place, what is man that you are mindful of him, the son of man that you care for him? You made him a little lower than the heavenly beings and crowned him with glory and honor. Psalm 8:3-5
Keep me as the apple of your eye; hide me in the shadow of your wings. Psalm 17:8
All mankind was given God’s very breath. All mankind was created in His image. But for those who choose Jesus. For those who surrender to His Lordship… we are the recipients of not only God’s common grace but also His saving grace….
Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me. (John 14:6)
If you declare with your mouth, “Jesus is Lord,” and believe in your heart that God raised him from the dead, you will be saved. Romans 10:9
After salvation His grace continues as He pours His Holy Spirit into us, allowing us to be beauty and light to the broken world around us.
“You are the dwelling place. You are the place where He displays His glory. You are the place where His glory is ‘at home.’” (Altar'd, Jennifer Kennedy Dean).
As followers of Jesus Christ are we shining brighter, acting more lovely, blessing more profoundly the world around us than the flowers blooming outside our doors?
We have circled back to sleepless nights. The duo which I call "GracieLu" have coordinated together to bring on a new level of exhaustion in this cozy, often rowdy, rarely germ-free house. Christmas will always be characterized by babies in my memory and with babies come sleepless nights. Three out of four of my children were newborns at the time of Christmas (the girls) and Vincent was but 6 months old at his first Christmas. Having just fallen asleep on cold nights in December I would frequently awake to baby cries, stumble across the hall, glancing over to see the lit Christmas tree in our living room. Often I would bring the babies out of the nursery to sit quietly in front of the tree. Nursing, singing, falling asleep sitting up together. This was the joy and peace of Christmas. These were the sleepless, holy nights...
Last night was sleepless in a new way. Luisa slept from 7-10 pm then not at all. Grace was up frequently, awoken by Luisa's screams across the hall. Our Famed Warrior was happy but alert through the night, her screams really shrills of delight? Of urgency? Of curiosity? Her screams, her cries lack the differentiated communication you find in many babies. They all sound the same so you are left guessing. We seem to have entered a new phase in our Rett Syndrome journey. Perhaps it will be quickly passing, perhaps it is indicative of things to come, or perhaps it is but a bump in the road. I will not go into all the details but we are trying a new medication, starting new therapies, seeking the advice/help of others who have gone before us on this journey. One aspect of this new phase/bump in the road/who really knows? is increased night wakefulness. They are sleepless yet holy nights for we are called and set apart to His purpose in caring for our children, for caring for our Luisa....
This video shows how Luisa is losing her hand function. Notice how she struggles to get food to her mouth. Notice the tremor in her left hand.
If I were to tell the story behind the pictures I would share with you the joy of Christmas in our home. The cookie decorating, the presents, the surprises, the snuggles, the shrills of delight.
But if I were to be authentic, if I were to be vulnerable I would share with you a more complete picture. Alongside the joys, there are heartaches that seem "holiday specific." For months leading up to this Christmas Day I painstakingly picked through Amazon for toys, items that would please Luisa. This is a task full of a grief only fully understood by others walking the special needs journey.... On Christmas Eve, I scroll through Facebook with images of girls with Rett Syndrome who seem to be doing so much better than our Luisa right now. I scroll through and see Luisa's peers, typically developing little girls or little special needs girls with far less severe challenges opening doll houses and stuffed animals and tea cup sets. Their hands grasp their new toys, hug them tight, their eyes dance with joy, they sit and play. Grief of physical disability. Grief of mental disability. Grief of what could have been versus what is given sovereignly and lovingly from His hand. This is Christmas for so many. Gratitude in one hand, heartache in the other.
Lest I feel sorry for myself, sorry for Luisa, sorry for the challenges, I am reminded of the Holy, Sleepless Night 2000 years ago. Who better held joy in one hand while simultaneously holding sorrow in the other? Who knew both the holiness of her calling but also the brokenness of the world in which she lived than Mary, than Joseph? The Bible tells of her treasuring her newborn babe. She treasured the confirmation of shepherds sent to adore and worship this Son that was both fully God and fully man(Luke 2:19). I picture all the beauty and sweetness that holy night of baby legs, toes, and eyes. I picture her cradling Him close on many a holy and sleepless night. This is what Mary held in one hand - treasure and beauty and joy. In the other she held something entirely different. In the other Mary felt the weight in her palm of a world gone astray, of kings hunting down and killing baby boys (Matthew 2:16-18). Of unexpected detours to a stable not an inn, to Egypt not Galilee (Matthew 2:13).
Long lay the world in sin and error pining
Till He appeared and the soul felt its worth....
Lean in and I will tell you a little secret. I will whisper it quite because it is a message many do not want to hear. Suffering. Suffering brings deeper understanding. Suffering brings meaning. Suffering brings hope. Do I really suffer? Not really. I am healthy. I am loved. I hold many a delight, many a joy in my hand. But Luisa? Luisa suffers. This is true. And when I watch her, when I hold her near on many a sleepless, holy night, I think to myself, "This world is a mess. Something has gone astray in our very DNA." This world has been decomposing since the first bite of rebellion, tart in our mouth - an apple with worms. This world with it's brokenness. We hold safe Christmases in our cozy homes with cider and feasts in one hand while the world holds in it's palm the refugees and the slaughters and the hunger of real people, real children.
Where is the hope? Are there really broken bodies, feeble minds, hands no longer working and then death and then nothing? When will it all be made right? I am weary this Christmas. Weary of political fighting amongst images of grown men, desperation in their eyes putting their toddlers, their pregnant wives on boats crammed too full.
Chains shall He break for the slave is our brother
And in His name all oppression shall cease
Weary of the depravity of man playing out in violence against children, innocents, friends. Weary of disease, of sickness, of death too early. Weary, weary, weary of Rett Syndrome and how it is taking my girl little by little. The weary world rejoices?!? How? How will we rejoice?
There on that holy, sleepless night was a manager and in it lay a Savior. In it lay Hope. In it lay our Answer. The greatest gift ever given to a world weary with all the hurt. Weary with their inability to get it right. Weary that try as we might, we continue to do wrong, to hurt others, to hurt ourselves. A world weary down to the fibers of it's very being, weary down to the ocean floor now given over to the laws of science gone haywire. Weary. Weary, holy night...
A thrill of hope
The weary world rejoices
REJOICE! Because in your core you know you want it to be made right. REJOICE because it is made right through the Christ babe given to us in a manger through His atoning sacrifice on a cross. Luisa - the brokenness called a mutation that is encoded in every cell of your body? REJOICE! Thrill in hope. Jesus came for you! He was wrapped up and given so that you might have hope. You will be made right someday....
For yonder breaks a new and glorious morn...
Glorious morn. This world with all it's suffering grieves God too. He has been working, fighting to make it right from the minute it went haywire. And finally on that holy, sleepless night so long ago, God began the rescue of His people, the beginning of a new, glorious morn. For from a manger grew a man who laid down His life so that we might someday stand on the shores of a new and glorious morn. Where we are given new bodies. Where we are finally and completely freed, from pain, from suffering, from the brokenness of this world, from the sin that has enslaved....
Fall on your knees...
Fall on your knees you broken, you hurting, you weary. I have chosen to do just that. Fall on my knees. Fall in worship to the Creator, the Judge, the Holy One who will make all things right. Sleepless, holy nights will one day give way to one, long glorious morn. This is the story of Christmas, the beginning of morning, the beginning of HOPE...
So in my weary, sleepless nights I will remember it is but temporary. The Gift has been given. The Price has been paid. The Promise sure. A glorious morn is around the bend...
Then rang the bells more loud and deep
God is not dead, nor doth He sleep (Peace on Earth, peace on Earth)
Grace Evelyn I wait for you every morning. We share a quiet conversation as we both wake for the day. I turn to my side because, despite a meticulously crafted cocooon of pillows I've managed to flip on my back in the final hours of the morning. I wait with anticipation for your movements within. If your body is slow to wake, to move, then I push at you through the muscle and fiber and tissue that is the miracle of the womb. Soon enough, to my relief and delight you begin to jab. I imagine tiny fists stretching with the morning, finding contact with my nerve endings. You punch then shift. Sometimes despite your now cramped quarters you manage a roll. When you do this my whole abdomen jumps to life, my skin stretches upward and my belly becomes misshapen with movement. Only at this point do I feel the need to bring anyone else into our private world, our private conversation.
"Tony! Come here!" I call from the bed into the bathroom where your Daddy is at the sink getting ready for the day. "She's really moving!"
I desire looks, exclamations of awe and disbelief at the sight now before him. Occassionally your daddy will turn just in time to see one of your persistent pushes against my flesh. Most of the time, though, you grow still under his touch. Four lives have graced my womb and only now at the last do I come to the realization that this business of jabs and punches, twitches and twirls are but a secret langauge between mother and child. It is a quiet time, a sacred time. As others move about their day unaware of the life growing, thriving - mere inches below a rounded stomach, the mother is every conscious of the life she carries. The world moves unaware. The mother does not. In those moments of sacred life movements I think only of you baby girl and of Him. I often pray, sometimes just still myself in the awe of it all.
Tomorrow, God willing, we will meet you Grace Evelyn. Your feet and legs, arms and hands all tucked in tight will reach out and through to life, to this broken world waiting. And Daddy and I will be there. To sing you the familiar songs you have heard through water and flesh for months. To whisper your name now loud and clear into the air so much thinner than the womb, "Grace Evelyn, welcome to this world!" And you and I will no longer share a private conversation, the world will no longer be ignorant of your life. You will be here for all to see. But baby girl, I won't forget the quiet mornings it was just you and me. I will not forget the gift of carrying you for so long.
It would be a half-truth to omit that you come to our family after a difficult season. Perhaps, even in the midst of a difficult season. Maybe you will read my journals someday. This blog. My written prayers and wonder why you had to follow such a difficult time in our family's life. You know that thing called Rett Syndrome? Not your sister Luisa. No not her because she is wonder and delight and joy and God's creation. But that disease that makes her life more difficult, brings challenges to our family structure? Perhaps you will feel you are in the shadow of that syndrome. I surely hope not. I pray not. We will work towards not making you feel that way. But baby girl you are not in the shadow of anything. You are Grace Evelyn. You are His creation. And God has great things in store for you.
Your name, "Grace," means unearned favor or being gifted with something we do not deserve. Grace is also the idea of being looked upon by God with His favor. As we pray your name over you, we pray you will be the recepient of God's grace and also the dispenser of His grace to a world so desperately in need of that gift. Also sweet girl, you are God's unearned gift to your Daddy and me. Someday I will tell you the story of how in the midst of grief we lost sight of God's plan and in fear thought surely we needed to go a different path. And how despite our plottings and plannings and decisions made in despair, God gave us the gift of you. I will tell you that story someday and I hope you will smile with the knowledge of how loved, how desired you are....
Evelyn is your middle name. It means "wished for child." How perfect is Evelyn? Wished for child. Wished for Grace.... Also, Evelyn is the middle name of my mother, your Jean Jean. Mothers and daughters. You are my last daughter. You should carry the name of the mother who helped your mother through all her pregnancies and newborns and child-rearing. Someday I hope to be to you what your Jean Jean has been for me. God willing, I will clean your kitchen and bring you coffee in the wee hours of the morning. I will love your children and just be present. Your name will remind me of my example of just how to do this mother thing....
So here's to tomorrow Grace Evelyn. To meeting you for the very first time. Wished for child. Unearned favor. Grace Evelyn....
This family of 5 is so excited to meet its new member - Grace Evelyn!!!
"For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you." Isaiah 41:13
I brace myself for the question, a literal bracing or stiffening in my body, "How is Luisa?" How touched I am that people ask. How sad, upsetting it would be if they didn't. And yet, it's the hardest question to answer. Do I stay positive, sharing the answers to prayers, the walking, the increased stability? How she can now stand up in the middle of the room, bend over and pick up her duck? Or do I mention her struggles - that she falls often, runs into things, and is constantly trying to maintain balance - and seem like a downer? What about those aspects of what's happening to her body that I don't understand, are they just a passing phase not worth mentioning? Her progress, her "regression," it varies week to week, so nothing I report about our little girl feels definitive. Next week her increased stability is traded for falling over in the middle of the floor and ataxic walking (much like a person under the influence of alcohol). And then the next day she's back to herself. And always I wonder, what will it be when this "regression" is over - walking or not, hand use or not, continued sensory processing issues or not, irritability and anxiety or not?
Since so many people ask from sincere hearts, since so many ask because they really want to know, they really do pray for our little girl - I think I will share with you how Luisa is doing today. And in the process I will share with you a bit of how our family is coping/dealing.
1. Speech - We are technically still in the regression stage and will be until Luisa is 3 or 3 1/2. This regression stage has many challenges: behavior challenges (see below) and the loss of skills. So far, Luisa appears to be losing skills slowly, hardly noticeable until you look back at old pictures and videos. Most pronounced and most noticeable though is Luisa's loss of speech. The day after she was diagnosed, July 4, 2014, I wrote down all the words she was saying, they numbered 12. Today she is no longer using any meaningful words. "Momma" is gone. I'm not sure when it left but I haven't heard it in months. She frequently puts her lips together to say "baby," but no sound comes out. The silence aches our hearts but I'm not giving up hope. Everyday we work on imitating. On the changing table I say, "Mama, mama, mama, baby, baby, baby." Luisa studies my mouth intently and will imitate with her sweet lips. Sometimes Luisa's speech therapists and ABA therapist will ask Luisa to talk. Usually we are asking her to look at her loaner eye gaze device or choose a picture. In response to our requests she looks at our eyes and begins to move her mouth, popping her lips open and closed, looking at us as if we understand. No sound comes out. It is sweet and heartbreaking all at once.
My prayer for Luisa is that we can find a way for her to communicate her wants, needs, and opinions. Luisa was tested for an augmentative communication device that will use her eye gaze paired with pictures to communicate. Basically the computer screen contains buttons of pictures representing people, objects, actions, feelings, and social phrases. Luisa looks at the picture that communicates what she is thinking, the computer tracks her eye gaze, and once she has gazed intentionally at the picture for a set amount of time the computer will say aloud what the picture represents. In the words of the speech therapist that tested Luisa for this device, "she blew the test out of the water!" An answered prayer is that we acquired her augmentative device Wednesday of last week! We are busy programming and exploring and enjoying Luisa's new "voice." There are times Luisa gets quite frustrated with the eye gaze device. She is, after all, learning a whole new language where she has to memorize motor pathways to select just one word or phrase. Then there are times she amazes us with her speed and clear intent with the device. Please pray she will have success on this device and we will have patience and determination in teaching her how to use it.
2. Walking - Luisa is walking!!! She learned to walk shortly before her 2nd birthday. Over the last few months her stability has increased. She can bend over and pick up objects from the middle of the floor and she has started to stand up in the middle of the floor! Uneven surfaces still trip her up. Luisa has "bad days" when her stability is quite off. On those days she falls in the middle of the floor and her legs give out from under her when she is walking. There are times she reaches for a table for stability, misjudges the distance and falls forward on the edge, nicking her forehead or chin. Our prayer is that walking will become so automatic that if she neurologically regresses more in the next year, walking will stay. Also we are prayerful that she will be protected from any serious falls.
Rett Syndrome is puzzling in it's progression. For awhile we were vigilant about putting up the wood gate at the bottom of our stairs. Luisa's newly acquired skill of climbing the stairs was being tested everyday and we wanted to make sure she was safe. I'll never forget losing sight of Lu for a short time while we were both downstairs, only to find her upstairs a few minutes later - she had climbed the whole flight of stairs!!! Luisa started climbing stairs shortly before she learned to walk, a few months after her diagnosis. Around the same time she was also climbing up on chairs and standing up. I delighted in this typical exploratory behavior. These daring feats surprised and encouraged us. We were so proud. And then the skills just disappeared. No more crawling up stairs. No more crawling into chairs. The wooden gate has been stowed away - no longer needed. Back and forth, back and forth we go. Yet we do not stop. We are back to teaching her to crawl up the stairs using her hands and knees. I am hopeful that someday we will be forced to find that wooden gate we've put away, to keep our adventurous girl safe.
3. Behavior - This is an area that brings much bewilderment. Luisa is not our first two year old to parent and certainly not our most strong-willed. So many of her behaviors, sitting in the middle of the floor crying and screaming because she cannot have what she wants (either because we don't understand exactly what she wants or because no, you need to work right now, not watch Elmo) is typical two year old behavior. But there are other behaviors that extend far beyond typical two year old antics. Gastro-intenstinal issues that sneak up on us even as we try to be vigilant cause her great physical discomfort and pain. It sneaks up on us and suddenly we have a full day of crying, and I beat myself up - how did I not notice we were headed this direction?
Anxiety. Specifically anxiety in the car. Luisa practically lives in the car as we shuffle to and from therapies, take big sister and brother to school, and around for various family activities. God has been most gracious in sending people to help us with some of the transportation load but large hours in the car are inevitable. Luisa hates the car. She screams and cries. There are things that seem to help, such as an Elmo video, having a duck to hold and bite, or her bunny. But many times even these things do not work. I feel so torn about this issue. My heart breaks because obviously the car causes her anxiety but on the other hand, we can't stay locked in our home, church and therapies are non-negotiables. It is a helpless feeling and it puts everyone's nerves on end. When I say "scream," I mean ear piercing screeching. Please pray this intense dislike for the car improves for Luisa and for our family. Please pray for mood regulation issues, a common problem in girls with Rett Syndrome.
4. Hand Use - Alongside speech, hand use has been the most significant change in the last year. Her hands have become increasingly limited as the hand movements that characterize girls with Rett syndrome - constant movement or frozen posturing - are taking over Luisa's waking hours. Luisa clasps her hands at mid-line for most of the day, usually while squeezing a duck, moving it rhythmically to her mouth and then back down again and then to mid-line as she clasps and squeezes her hands together or her duck. When the duck is removed from the equation, her hands continue in their nonsensical pattern but Luisa grows agitated. She needs the duck for the mouthing feedback and honestly, I think to cope with her hand movements. Luisa still self-feeds. She is adamant about self-feeding. I would say about half of the food actually makes it to her mouth. Often she will drop her food before it leaves the area of the tray or drop it just before it reaches her mouth. She rakes rather than pinches to pick up food. Really though, her self-feeding, limited as it is, is something to be celebrated. I am thankful she is still able to do this task. We are extra vigilant as to how much food she is actually consuming and we eat all day long, rather than scheduled meals. At the end of every meal we spend time feeding her ourselves. She's a sweet little bird at this point. Opening her mouth willingly, after being given the opportunity to do it herself.
One challenging thing about Luisa's decreased hand use is her inability to interact with others appropriately. Think about it for a minute. How much of our connection to others is based on physical touch - a handshake, a pat on the arm, a hug, a touch to the cheek, the holding of your child's hand? We instinctively need and desire to give touch. Luisa is no exception, she longs to touch others. Recently we were trying out a new sitter. I stay home and observe how new sitters interact with Luisa for about a week or two before leaving them alone with her for short stints. During one of these supervised days I overheard the new sitter scold Luisa for hitting. Luisa wasn't angry when she hit the sitter. She wasn't upset in the least. She was trying to touch the sitter, perhaps put her arm around her neck as the sitter carried her. Unfortunately her hand and arm frequently move at speeds she cannot control and overshoot their destination. Rather than caress our face, she hits us across the nose. Rather than pick up the toy off the table she knocks it down along with everything else on the table. If gravity is working against her, she will drop the toy every time. Children her age will often flinch as Luisa's hands go up. She most likely wants to greet them with a touch and her hands and arms just won't cooperate. I'm there to explain but it pains my heart to see her so misunderstood. If people would look into her eyes they would understand what her hands cannot communicate as she pierces her bright blues into your eyes with intent - "hello!" "I like you!" I pray Luisa will always be able to self-feed, pick up her duck, move her bunny to her mouth for comfort. I pray for grace for those who interact with her, that they will understand her limitations.
5. A Cure - Tomorrow we will host our 2nd Lemonade Stand - "Lemonade for Luisa." I think back to last year's success. Almost three months post diagnosis we were gathering sponsors, coordinating an event, setting up a fundraiser. Underneath all the lemonade and raffles and donation jars we were still processing, still wondering what this diagnosis would mean for our little girl, for our family. A year later I cannot say we have "arrived," at some sort-of acceptance or higher-level of understanding. We have, however, found a "new normal."
I think back to our stand last year. The amazing, overwhelming show of support. God's hands and feet loving on our family, blessing Luisa. That lemonade stand was an important step in healing for our family. We needed to do something tangible for our girl. We needed to invite others in.
This year we will once again open our yard, offering lemonade and coffee, muffins and sugar cookies. Luisa's friends have been hard at work crafting for our lemonade stand. Their art work will be on display, donated with the hope for a cure.
For you see our family, families everywhere never, ever give up hope that a cure will be found. And before that cure is found we long for medication specifically tailored to the mutations found on the MECP-2 gene. Medication to change the chemistry and cellular make-up of this disease, reducing or wiping out just a few of the many daily challenges our girls face. This is not a "pie in the sky" dream. This is reality. Articles here,here, and here, show evidence of the radical advances towards pharmaceutical intervention and a cure for our girls. I believe giving to this research is a most worthy cause. Why? Because of this girl.... And this girl.... And this girl.... And this Famed Warrior, my beautiful girl....
I believe it is a worthy cause because medical advances in one neurological disease, will lead to breakthroughs in other diseases - specifically Autism Spectrum Disorder, Parkinsons, and Anxiety Disorders.
I believe that if we don't raise the funds for research who will? Rett Syndrome is classified as "rare," because only 1 in 10,000 live births are affected by this disease. Government agencies see "rare" and say "no funding." So guess what? Families step up with passion and purpose because rare just doesn't mean anything when it is your girl who is suffering. Rettsyndrome.org has invested $35 million dollars for Rett Syndrome research. Thousands of lemonade stands and Strollathons contributed.
And finally I would say this. If you are praying for Luisa will you be praising too? Because God is most worthy and He has supplied everything we've needed for this journey over the last year. Many of you reading this blog are God's answer to our prayers. Meals brought, car pool for our big kids, your friendship, your notes of encouragement, your donations to rettsyndrome.org - they've all served to encourage us and meet our needs. More than anything God has given us gracious gifts of answered prayers (walking, eye gaze communication devices, competent, empathetic therapists). But where the answer has been "no," He has been more than enough, supplying the strength and peace we've needed each day to face these challenges. God is teaching us contentment, submission, and joy in all circumstances.
I will lift a glass of lemonade tomorrow morning and pause to reflect - God is good all the time, amongst wringing hands and lost speech, ataxic walking but eyes so bright. All the time, God is good.
