Trust

Another week, another Five Minute Friday. Thank you, Kate, for the prompt today. Trust. I didn't write for five minutes. It was definitely longer. October, among others, is Down Syndrome Awareness month. If you are curious, or are doing your own research for your own reasons, I have a page linking to posts about life and learning with my daughter. Who happens to have Down Syndrome. I love her beyond the moon.

The Lord bless you and keep you;

the Lord make his face shine on you and be gracious to you;

the Lord turn his face toward you and give you peace.

Numbers 6:24-26 (NIV)

"You'll spoil her."

"No, Mom. Spoiling is what happens to rotten fruit. I'm teaching her to trust me."

I bent down to scoop my daughter off the floor where she lay in a puddle of sunshine, soaking up essential light. The hospital people said it was good for her; it would combat the little bit of excess bilirubin still in her bloodstream, those sloughed off red blood cells causing a faint yellow tinge to her skin. Better that she was home with me than under the lights of the chamber in the hospital. They also said to feed her more often. If I could.

Four weeks ago. My world turned inside out. Down Syndrome. Heart murmur. Jaundice. Premature. My daughter was born weighing five pounds, two ounces, a tiny, fighting, scrap of a baby, filling the operating room with the sound of her cries.

I remembered sewing all night with my watch next to me on the table, timing the contractions, sending my husband to work, and finally calling the doctor. I didn't want to be sent home and this baby was at least five weeks early.

"Come in."

My neighbors drove me the 25 miles.

I was admitted and hooked up to the machines that indicate strength of contractions and heartbeats. I could have told them, but they had to read numbers. They said the baby was in distress, something about the cord, and had me change my position. Knee/chest they called it. I called it (excuse the visual...) butt in the air.

My doctor came in. I could see his feet. Shoes, no socks, he had been called from swimming laps.

"We may have to do a C-section," he said. "But it would be better for the baby if you can deliver without surgery."

Baby. My only thought. I'm going to have a baby.

They wheeled me into an operating room with a surgical team standing by. Just in case. I pushed my girl into this sterile, echo-y room. My girl with the purple face, the plastered hair, the grasping fingers, and the cry. Between cries, the pouty lips. She rested a moment on my chest and then she was whisked away.

I was released the next day.

"We'll have to keep her here for awhile. We need to settle this thing in her blood. If the numbers don't go down, we may need to do a transfusion."

They sewed me up down there. The stitches were still tender when I drove to the hospital to see my girl, when I sat beside her, talked to her, sang to her. They had her in a special crib - enclosed - with little rubber tunnels so I could reach in and touch her. She wore a doctor's surgical mask like a string bikini, soaking up light to help break down those extra red blood cells.

I timed myself to her feeding schedule, pumping breastmilk in the middle of the night. I said yes to counting chromosomes. It's called a karyotype.

She stayed in the hospital for a week.

The test results came back, telling me what I already knew. Sierra, my beautiful, fighting girl, had Down Syndrome. I spent the next two weeks researching, calling, contacting, loving.

Four weeks. My parents visit. We had finally broken the hospital habit of bottle feeding. Sierra was gaining weight - loose-limbed - pick her up like a broken doll - questions, references, love.

I think my mother was teasing. "You'll spoil her, giving her all that attention."

Smiling, holding my beautiful daughter, "No, mom. Spoiled is rotten fruit. I'm teaching her to trust."

We are children of God. 

Nothing can separate us from his love.

His childbirth was creation.

It was his Son on the cross.

Imagine. 

We have his full attention. 

He is good. 

He is faithful. 

He is sovereign. 

In him, we can trust.

Dream

Hope deferred makes the heart sick,

but a dream fulfilled is a tree of life.

Proverbs 13:12

Ok, so I'm cheating just a little bit. The prompt today is Dream; we're supposed to write for five minutes and then stop. My problem is, I've thought about this prompt before, in life. I don't think I'm wrong to suppose that we've all had dreams, dreams that change, dreams that are forgotten in years of living, years of making the best of, years of other priorities. We've been told to follow our dreams, to reach for our dreams, to dream big and to dream on. We've been told what we should dream, what we could dream, and how to interpret our dreams. We've wanted our dreams to come true, like fairytale wishes. All of us. Dreaming about so many things. And for many, our dreams grow and mature - they encompass more than just ourselves. They include our family, our children and spouses. They include our country. They include our world.

So this is the cheat. I've written for almost five minutes, but I also want to share. My daughter just turned 24 a month ago. I still remember how her birth and diagnosis of Down syndrome rocked my perfect world, how my hopes and dreams for my child were changed, shifted, blown away. Hope deferred... But I didn't remain heartsick - God had different plans. Following is an excerpt from a book-in-the-making about my daughter. Well, really about how raising Sierra has changed my life. The Very-Do Adventure is a description of the journey - 

The road goes ever on and on down from the door where it began.

Now far ahead the Road has gone, and I must follow, if I can,

Pursuing it with eager feet, until it joins some larger way,

Where many paths and errands meet. And wither then I cannot say.

J.R.R. Tolkien

I am in the office, thinking about the past 23 years. Sierra is in the other room, exercising.  I hear the music and I picture her, eyes focused on the video following the steps of an on-screen avatar. That birthday of hers is almost here and I am remembering doctor visits, therapies, early intervention, Individualized Education Plans. I reflect on decisions made, on scaffolding, on choices. There are differences between parenting a child with extra needs and a typically developing child, but the similarities outweigh those differences. Great strides have been made in quality of life, education, health, and acceptance of our differently-abled population. 

Almost twenty-three years on this very-do adventure.

I am in the office, thinking about my wishes and hopes for my girl, for the people around her, for parents and families who are new to the parenting adventure, parents and families with typical and extraordinary journeys ahead. I think big thoughts that float and glitter like giant, helium-filled mylar balloons on parade. Balloons that proclaim Universal Hopes and Dreams. I think beyond Down syndrome.

I hope that my daughter will be safe from any who want to take advantage of her. I hope she continues to search for and find purpose. I hope that others, parents, families and communities learn as much from their sons or daughters, as I have from mine. I wish them joy in the journey. 

I wish that being 'special' wasn't an automatic label based on a diagnosis. My daughter has EARNED the description of special based on her unique personality, her unique outlook, her unique actions.

I wish there weren’t disappointments in the disability, but rather celebrations in the ability. I wish, like Chris Burke, it could be called Up Syndrome.

I hope that people take time and effort to get to know my girl. I hope they take time and effort to get past the challenges of understanding her speech, past her conversation loops, her need to please, her drama moments. I hope they discover her sense of humor, her empathy, her distinctive intelligence, spirituality and joy. I hope they appreciate the journey.

I hope she experiences true, unconditional friendship. I hope she experiences Relationship (with a capital ‘R’).  Active, vibrant, caring relationship. Beyond family. 

 ~~~~~

"It is my birthday, next week. Are you scared?” 

Done exercising and back to her favorite topic, my daughter interrupts my thoughts.

“No, Sweetie, not scared,” I fold her Zumba’d body in my arms. I blink back warm tears of hope and love, turn away from the computer and focus on my soon-to-be birthday girl. “I am incredibly blessed.” 

Linking with Five-Minute Friday

Finding the Joy

A note about the picture:

Sometimes, what I catch through the lens becomes an entirely different picture after I take it home to my computer. I crop. Sometimes I crop away. Sometimes I crop toward. Either way, the final picture is the result of a hunt for the best composition. I think, a lot of times, we find joy by looking for the best composition in our circumstances. We can frame it and crop toward it, or we can frame it and crop the extraneous distractions away.

Finally, brothers and sisters, 

whatever is true, 

whatever is noble, 

whatever is right, 

whatever is pure, 

whatever is lovely, 

whatever is admirable—

if anything is excellent or praiseworthy—

think about such things. 

Philippians 4:8 (NIV)

"Tomorrow, I eat my breakfast slowly."

The refrigerator door is open, my eyes focused on the makings of my own breakfast. I only half hear her. Some people need coffee to wake up; I need food in my tummy to take myself off of autopilot. But something about this sentence stalls me out, stops my hunt for the cream cheese container, and has me look at her.

Autopilot means I haven't noticed that my daughter is standing at the counter eating her banana, instead of sitting at the table. Autopilot means I haven't noticed the 'work' bag on the counter next to her, flaps open, purse inside. Autopilot means I haven't noticed she has already changed out of her exercise clothes and into an 'outfit', ready to return to her volunteer position at the Army Community Services center on post.

I know she's excited. We've spent the last three weeks as a family, my husband on leave, boating, fishing, enjoying the crisp weather and blue skies. She has started telling me it is time to go back to work. She has started telling me she will see her friends. She has started telling me she is hard work (yes, exactly in that way...) But what stops my pre-breakfast autopilot is the -ly in the word slowly.

Yes, it's a really little thing. Two letters, to be exact. At the end of a 6-word sentence. But for me, it is huge.

See, my daughter has Down syndrome. Those little morphemes, those little one-, two-, and three-letter word attachments, those little bits of meaning, have been agonizingly slow to show up in her vocabulary. Sierra, my daughter, is very concrete. Very in the here and now. Very visual. So it's not surprising to understand why this part of her language skill lags. Those bits of meaning add abstract information. The -ed shows past tense. The -er shows someone who. The -s shows plural, or possession. For most of us, these little bits get added way back in our toddler and primary years. For Sierra, it's an ongoing process.

And now the -ly. It tells how.

So, I'm standing in the kitchen with my mouth open, just like the refrigerator door. And I'm celebrating my daughter's language. She just turned 24 - and the language keeps coming. Nice, right?

Jennifer Dukes Lee found a barn painted with a sign "Praise God." She interviewed the veterinarian who had the sign done.

He said the two words, “Praise God,” seemed like the best ones to hang over a farm … and over a whole life.

You can read the rest of her post here. It's worth the read.

Today, I'm joining the #TellHisStory Community, and ThreeWordWednesday with a simple praise of my own. I praise God for steadfastly walking beside my daughter and me, in all things, even something as little as an 'ly.

A Fragile Thing

Then Christ will make his home in your hearts as you trust in him. 
Your roots will grow down into God’s love and keep you strong. 
Ephesians 3:17 (NLT)

Fragile: 

• (of an object) easily broken or damaged, flimsy or insubstantial, easily destroyed
• (of a person) not strong or sturdy, delicate or vulnerable

-Web definition from Google search

We are at chapel. My daughter is wearing her favorite blue dress, the one I bought her for a homecoming dance four years ago. She is excited this morning, and has been telling me about her 'friends' on the short ride over, the chaplains and their wives whose names she has learned in the past few months of attending. She tells me that Cody will be out of town, but his wife, Jenn will be there. She tells me she is a leader; she has a job. She tells me she is a good usher. 

We walk through the door into the back of the sanctuary together. We are early. I watch her look around at the people who have arrived before the service, like us. I see her eyes light up as she spots those she knows. We find a seat. Her friends are spread out, mingling and talking. They are all engaged. I sense her impatience; she wants to say 'hi.' She wants to say 'Happy Father's day'. She wants to mingle and talk.

I tell her that she can't interrupt. She needs to wait. So she sits next to me; she's smiling in anticipation. I'm proud of her; this is social maturity. She is learning. 

I see her favorite chaplain break away from his conversation. She sees him, too. I nod my ok and she jumps up to greet him. She says all the things I expect and more. She asks him if he likes her dress. She tells him her father has a cold. She tells him where we had lunch yesterday. He smiles and nods; I can see he tries very hard to understand her. From my seat, I tell him that yes, we had a great day with lunch out, and no, unfortunately my husband has a cold so will not be at chapel...I want to translate without making her think she's spoken wrong, and without him feeling like a frustrated listener.

This is a fragile thing.

The ushers are called to the front and the plates passed out. My daughter doesn't get a plate. She doesn't understand. I anticipate her confusion even before her arms raise and lower in question. Her friend of the do-you-like-my-dress conversation rescues two more offering plates from behind the pews in the front. He hands one to my daughter. I see her breath of relief. I hear her voice in my head: I am an usher. 

This is a fragile thing.

I think about the responsibility of holding someone's esteem. I think about how it must feel to realize someone has gone out of their way to see you, to speak with you, to listen to you. To be with you. How do you handle the attention? Do you watch what you say, realizing that your words are an influence? Do you want to make sure you listen well? Do you want to rescue them? Teach them? Build a relationship with them? Respect them? 

This is a fragile thing.

It is humbling. It is heavy. I think of depending on, living for, trusting. I think of parents and teachers. I think of friendships. I think of outside influences and pressure. I think of self esteem and confidence.

These are fragile things.

I think of Jesus.  I think of God.  I think of love. 

Love through Christ is not a fragile thing.

Heavenly Father,

Thank you for your mighty love. 

Help us to recognize our fragile things and to cover them with your strength, 
your kindness, your compassion, your righteousness.

Thank you for placing people in our lives who demonstrate how this is done.

You are amazing. 

Linking with Sunday Stillness, and Spiritual Sundays

I Caught A Fish

I pray that out of his glorious riches 

he may strengthen you with power through his Spirit in your inner being, 

so that Christ may dwell in your hearts through faith. 

And I pray that you, 

being rooted and established in love, 

may have power, 

together with all the Lord’s holy people, 

to grasp how wide and long and high and deep is the love of Christ, 

and to know this love that surpasses knowledge—

that you may be filled to the measure of all the fullness of God.

Ephesians 3:16-19 (NIV)

"I caught a fish!" Her voice rose effervescently like bubbles in a soda. In her case, red cream soda, sweet, with a single note of vanilla. Uncomplicated. Like my daughter.

"I caught a fish, Mom!" She couldn't contain her excitement, bouncing up and down on the cushion of the pontoon sofa.

Here's the thing.

The fish was caught on the rod that my husband bought for her. The rod I set up with hook, and weights, and a red-and-white bobber. Not to mention a big, fat Canadian nightcrawler. It was caught while she was on the seat at the back of the boat eating lunch.

There is theology in this. Beside the symbolism of fishing.

She couldn't have been prouder as she watched me reel in her fish. On the line I had cast out, in a first effort to teach her to fish with us. Really, she was eating lunch. Really it was my fish. In my universe.

But in her universe, what was caught on her rod was hers and really, she couldn't have been more excited if she had set the hook and reeled the fish in herself. I know, because later, she actually did hook and reel in a fish, a little panfish, like the one I caught on her rod. And she was just as excited, equally thrilled, to do it herself as to see me do it with her pole. They were both her fish. And she didn't even mind when I unhooked them and tossed them right back into the river. They were, after all, too small to keep.

"Catch and release," I told her. Feeding new language into her life, preparing her for more boat trips, more fishing, more success.

It started this morning when my husband and I, drinking coffee in the office, were discussing our plans for the day. We were deciding where to take the boat, how long we'd be out, whether or not to take the dog. Sierra came down rubbing sleep from her eyes, moving in slow motion the way she does before her coffee. She walked to each of us for a morning hug and then into the kitchen to pour that cup of wake-up. Apparently her ears were on fine-tune mode despite the sleepy appearance. She brought her coffee to the desk, pulled up her chair, sat down, and proceeded to join our discussion.

"I not go." This in her no-nonsense voice.

"Sure you'll go," I brightened my voice, trying to convince her with my enthusiasm.

"I am twenty-four years old." Her comeback was to remind me that she is a young woman with Down syndrome, capable of making her own decisions. 

My husband looked at me over his cup of coffee. Smiling because he knew what she was saying, without words. He knew the second, unsaid part of her statement, the invisible part.

"Yes, you are twenty-four years old. And you're going fishing with us today. You like the boat. Make sure to pack your books and ipad." This is a redirect. The fishing isn't a choice, but what she brings with her is...

She moved to her favorite spot on the sofa at the mention of her ipad. It was time to catch up on Facebook. My favorite army guy and I continued talking about where and when and what for the day.

Voice from the sofa: "I can not go fishing on the boat. I do not have it, my fishing pole." Exact words, no kidding.

OK, this stopped our conversation cold. See, the backstory is, a couple of days ago we went fishing, and my husband dropped Sierra's pole while he was setting it up for Sierra to use. Well, yes, it dropped right off the side of the boat and we all watched as the bobber disappeared. Pole gone. Big oops. It happens.

But, what doesn't always happen, is Sierra's increasing sophistication in communicating. Two complete sentences with a plausible argument. Umm, wow.

So, we added 'new pole for Sierra' to our list of items we needed before our trip. She packed her own backpack so she'd have something to do with downtime. And we went fishing.

"I am fishing, Mom." This said from my colorful daughter, sitting on the edge of her seat, holding a pole with great tenderness and trepidation, eyes and attention focused on watching the red and white bobber floating. Right next to the boat. Lots of scaffolding, lots of help to promote her success in this new endeavor. Lots of encouragement, lots of repetition, lots of redirect.

There is theology in this.

Christianity is really simple sometimes. It's all about a sovereign God, keyword God, who is omniscient, omnipotent, omnipresent, and omnibenevolent. It is all about this sovereign God who made us in his image, gave us free will, and then continued to love us even when our choices went awry. Even when our choices led us away from him. It is all about the gift this sovereign God gave to us, the gift of himself, really, wholly God, yet willing to take on our own flesh in the form of his son Jesus, in order to redeem us to him. Because he loved us so much. Love that surpasses knowledge. It is all about the fact that God didn't create us to be alone, to stand solitary, to take on the world by ourselves. It is all about the fact that, through the blood sacrifice of Jesus, we have God in us - we have Godstrength, Godlove, Godforgiveness, Godcompassion, Godenthusiasm in us. We are filled to the measure with all of the fullness of God. Amazing.

I picture God in my life, working out the scaffolding, the support, the encouragement. I picture him sometimes a little impatient with the repetition, but infinitely patient bringing about result. I picture him managing the redirect. All for his plan. And that plan surrounds us. Always.

"I caught a fish."

Indeed.

Heavenly Father,

Thank you for your love. 

Thank you for your Son, Jesus. 

Thank you for this life that is so full of You - your love, your strength, your wisdom. 

Thank you for living parables, and for unexpected teachings. 

Thank you for grace unimagined.

Linking with Spiritual Sundays, Sunday Stillness, The Sunday Community
Monday's Musings, Tell Me a True Story, RaRaLinkup

I Am Volunteer

The Lord bless you and keep you;

the Lord make his face shine on you and be gracious to you;

the Lord turn his face toward you and give you peace.

Numbers 6:24-26 (NIV)

I thought I knew all of my daughter's smiles. You know, kind of like smiles-in-a-closet, hanging in order from the brightest, sunshiny-est, to the bite-your-lip, I'm-trying-to-hide-that-this-is-funny, to the shaky-mouthed, teary-eyed, barely-there shadow of a smile. Just like she hangs her clothes, by color and by type, dark to light, short to long. I thought I knew them all, until I saw a new one.

She stood at the front of the room with this new smile on her face. A complicated one. It didn't start with her mouth. Her mouth was serious.  It started with her eyes.

She was planted at the front of the room to receive an award. My favorite army guy and I had gone over protocol and procedure with her beforehand. I had him take the lead because, after all, this was a military event and he knew best. He told her she could not, under any circumstances, hug. Handshakes only. And we practiced the handshake that she is surprisingly good at.

So, the smile started with her eyes. For a half a second, I thought she wasn't going to smile at all, her face was so focused, there didn't seem to be room for a smile. She was focused on the rows of chairs filled with rows of people sitting before her, on the certificate in the hand of the woman next to her, on the uniforms milling about in the back by the door. Mostly, she was focused on the words being said. Words about her work, about her attitude, about her joy.

That's when it started. With her eyes, at the word joy, like the word was a cue to turn on a light.

Her eyes crinkled. Then her eyebrows raised, as if the crinkling had surprised her in some way. Those eyebrows raised, and that lifted her hairline up, which created a chain reaction with her mouth and her nose. First the corners of her mouth turned up, every so slightly. Then her nose wrinkled up, just a tad, right between those laughing eyes. Then the lips parted. Then the corners of her mouth curved up more, which opened it wider. The eye crinkles had deepened and eyebrows were back home, but the mouth stayed in its full-on grin. By the time my girl went to shake the hand of the presenter, she was smiling all the way from the inside out. You could hear it in her voice.

"Thank you," she said. Then, holding the certificate with great, tender pride, she looked at me and her dad and winked.

"I am volunteer." She told me later.

Yes. She is.

Heavenly Father, 

You have shined your face on us in ways we never dreamed of. 

Thank you for the many blessings you have given us. 

Thank you for my daughter's many smiles.

Sharing with #TellHisStory and Unite

It is God

But I, God, search the heart and examine the mind. I get to the heart of the human. 

I get to the root of things. I treat them as they really are, not as they pretend to be.

Jeremiah 17:10 (Message)

We are standing together, shoulder to shoulder with friends and strangers.  The lights are low.  I see people in silhouette, arms raised to the ceiling, faces upturned.  Like black cutouts against a luminous stage, I see their bodies sway in time to the music.  The music is what we came for, my daughter and I.  Just the girls.  A Christian concert at a local church.  Some friends invited us.

My daughter.  I glance sideways to see how she’s doing, to see how she is navigating this sea of emotion, to see if her head is above the spiritual waters.  This image is frozen like a snapshot on my brain.  Eyes closed, face tilted in the dark slightly raised hands in front, palms up to receive.  I think about her.  This daughter.  This blessing.  I wonder if she understands that this is worship.  This is praise.  I wonder if she is copying the hands of others.  She is, after all, a concrete girl and this… this is an ocean of abstract.

“Sierra,” I bend down and whisper, “what are you doing with your hands?”

She opens her eyes and I think I can see straight into her soul.  I don’t remember these depths, these layers.  I think I don’t know this girl.  I see complication, and understanding, and compassion.  I see abstract.  I see clear eyes full of wisdom.  I see an old soul in my daughter with Down Syndrome.

“It is God, Mommy,” and she raises her hands higher for me to see.

Oh God of the Universe, Help us to open our hands and our hearts to receive you.

Help us to be your hands in this broken world.

Linking With:  #TellHisStory, Three Word Wednesday, Unforced Rhythms

Are You Amazed?

So what shall I do? I will pray with my spirit, but I will also pray with my understanding; I will sing with my spirit, but I will also sing with my understanding.

I Corinthians 14:15

"I am leader this year, are you amazed?"

This has been a sentence-in-the-making with my daughter, the unstoppable, the charismatic, the give-her-an-inch-she-takes-a-mile daughter with the extra chromosome in the 21st pair.  I think stubbornness is imprinted on that extra chromosome.  And indefatigable will.  And unflagging optimism.  And empathy.   And stubbornness - did I mention stubbornness?

She started off with just telling me about her leadership.  Every day.  About fifty gazillion times a day. I helped her add the time frames - just trying to extend her communication.  First it was today.. but that wasn't necessarily true because she has designated herself leader for our high school youth group, and they only meet once a week.  So, today became this week.. but that sounds like one of those jobs you're assigned in the classroom at school.  You know the kind - this week you're line leader, next week, paper passer, etc.  So, week became year... which will probably work for awhile (a year, at least...drumroll, please).  The changes are molasses-slow, over many often-amusing and always-revealing conversations and question/answer sessions.

The second part of her new sentence, however, is all her.  I have no idea where she got it and how she hooked it together with being a leader.  Did I mention how important being a leader is to my girl?  Yes, I'm amazed.  I'm amazed because while I was studying the leadership of Nehemiah, I saw the same qualities in my daughter.

She leads by example.  She walked around after the kids in youth group had eaten pizza, picking up their plates and throwing them away.  As she took mine, she gave me one of those of-course-I-would-do-this looks, and said,  "It's leader."  Yes, leadership is another thing we've talked about.  What it means to be a leader.  I was concerned that she just wanted the attention of sitting in the front.  I was concerned she was all about the reward with none of the responsibility.  So we talked about it.  We talked about the responsibility, the doing...  Seeing something that needs to be done and doing it.  Over time - little conversations every day, weeks turning to months.  And I think she's getting it.

We were shopping the other day.  I had stopped at the shoe racks, where the boxes of shoes were stacked beneath the displays.  As I tried on shoes, my girl kept herself busy taking the mismatched boxes back to their proper shelves.  It was something that needed to be done... And she wasn't doing this just for show.  She and I were the only ones in the aisles.  I teased her about it.  "It's leader, Mom", she told me.  Hmmm... maybe I shouldn't tease.

She's been doing little helpful things around the house - like bringing the dishes from the table to the sink.   She stands by her chair before breakfast and dinner and shakes my husband and my hands welcoming us to the meal.  Little things above and beyond her regular jobs - little things that she thinks need to be done (gotta love the greeting at the table...) And when I ask what's made her so helpful, she says, "I am a leader, Mom."

She prays.  If she hears a bad news report, she prays.  If she hears a good news report, she prays.  The youth share their God-is-Awesome moments from the week and celebrate with alligator claps.   They also share prayer requests and we pray together.  Sierra has taken alligator-awesome-God claps to a whole new level.  "My dog, Mongo, he threw up, he is sick,"  I have to admit, my heart sank when I heard these words.  I was thinking she wasn't understanding the praise part of the sharing.  But she wasn't done speaking yet.  "Awesome God, we pray for Mongo."  Oh my goodness, she spun the situation!  She took a prayer request and turned it into an Awesome God - because in her mind, it IS a praise to pray.

And here's the cool thing - watch, here's our God at work, even in the language... Praising... Praise into prayer... Praysing.   Pray-Sing.

Did I tell you that I learn so very much from my daughter?

Our family is navigating a difficult stretch of water - it has to do with mis-placed blame and impossible requests and expectations.  About my daughter.  And how I work to guide and direct her as she negotiates the social world around her.  Around us.

I am ever amazed by our God.  I started writing this post weeks ago.  Before events.  Before hard decisions.  And today, when I read it, when I added recent examples, when I looked to finish it; I was guided to the lesson.  Pray Sing.  That's what praise is - a singing prayer of thanksgiving.  And that's what this situation needs - what every situation needs - some PraySing.  There is joy in that.

Did I tell you that God teaches me so very much through my daughter?

She is a leader.  I am amazed.

Thank you, God. 

 Linking with TellHisStory

Imperfect Prose

Three Word Wednesday

So Much

I remember the day I took out my Concordance and looked up Joy.  Because I needed it.  Because I craved it.  Because my ex-husband and Satan had taken my daughter away from me on charges of child abuse.  Trumped up charges and lies.  Because she couldn't explain.  Because her communication ability was incomplete.

I looked up joy because my joy, my daughter, was not waking up in my home, padding through the carpeted rooms to give me the first hug of the morning.  Because my sun wasn't rising - it had fallen.  Fallen in the anguish and tears of a broken heart.  And I had fallen.  Fallen into a pit of despair and un-hope.  And I had fallen to my knees in prayer - begging, wrenching, soul-crushed prayer.  Over and over, waking and sleeping, pacing through the house, the empty empty silent house...

Father.  Oh Father.  Jesus.  Jesus.  Jesus.

Because all I could do was call on the name...

So I looked up joy and found this:

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything.   James 1:2-4

God is amazing.  He showed me this passage and gave me hope.  That's when I started to pick up the pieces and fight back.  Perseverance is working through - surviving through the hard times to get to the better times.  And I did.

My daughter is with me.  Her life is free from the shackles of her father's lies.  And we have never stopped counting the joy of her in ours.  Now I write about joy - about finding joy in the ordinary and the everyday.  Even in the worst of times.  Consider it pure joy.... God, our Father, loves us SO much!

Linking With 5 Minute Friday

Beyond Down Syndrome

A new commandment I give to you, that you love one another, even as I have loved you, 

that you also love one another. 

John 13:34

But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, 

gentleness and self-control.

Galatians 5:22

I am in the office.  The room is dark except for the light of the computer screen in front of me.  I am reading another birth story, another family surprised in the birth of their son, a son with Down Syndrome.  A family whose joy at the birth of their child was tempered by the diagnosis of Trisomy 21.  And it is so familiar.  And heart wrenching.  And I feel tears pool again because this scene, this moment still lives fresh in my memory - 22 years later.  Because in that moment of revelation there is loss.  Loss of a life expected.  Loss of dreams of what could have been.  Loss of solid ground.

And then I hear the creaking of the floor above me, and soon the sound of feet on carpeted stairs.  And then I feel my daughter's soft arms wrap around me from behind my chair.  I reach up and pull her arms tight to my chest, savoring the moment.  Good Morning. My voice breaks the stillness.  I turn and look at her face, reflected in the light of a thousand pixels.  And my heart, oh my heart overflows with the love I feel for her, captured by that morning hug like a beam of warm afternoon sun caught in a prism and then exploded into a hundred rainbows.  My heart explodes in a hundred rainbows of love.  For this daughter.

And I know that I share this feeling, this expansion of the heart, with a thousand other mothers - a million mothers - countless others who love their children as I do mine.  And I realize, again,  that there are fewer differences between us than there are shared experiences.  My daughter has Down Syndrome.  It has been a journey of joy, not a death sentence.

Yet there are differences.  More doctor visits.  Therapies.  Early Intervention.  IEPs.  Inclusion vs self-contained.  There are decisions to be made and scaffolds to be built.  There are differences.  However, great strides have been made in quality of life, in education, in health, and in acceptance of our differently-abled population.

October is Down Syndrome Awareness Month.  I'd like to share a few facts:  one out of every 691 babies born will have an extra 21st chromosome.  Although the age of the mother is a factor, the majority of these babies are born to mothers under the age of 35.  Down Syndrome occurs across the spectrum of race and economic level.  There are approximately 400,000 people living with Down Syndrome in the United States.  The life-expectancy of someone with Down Syndrome has increased from 25 in 1983, to 60 today.  Cognitive and developmental delays are very much a part of life with Down Syndrome - and the range of these delays can vary greatly.  With help and support, people with Down Syndrome lead full and productive lives - they work, they attend school, they participate in their own life decisions.

I am in the office - thinking about the things I wish and hope for my daughter - things I wish and hope for the people around her - things I wish and hope for new parents and other families with sons and daughters.

I wish that being 'special' wasn't an automatic label based on a diagnosis for a young woman who, in my eyes, has truly EARNED the description based on her unique personality, her unique outlook, her unique actions.

I wish that people would take time and effort to get to know her - get past the challenges of understanding her speech, past her loops of conversation topics, past her wanting to please, past her drama moments - to her sense of humor, to her empathy, to her unique intelligence, to her spirituality, to her joy.

I wish there wasn't disappointment in the disability, but rather celebration in the ability - I wish it was called Up Syndrome.

I hope that other parents, other families, other communities can learn as much from their differently-abled members, sons and daughters, as I have learned from mine.  I wish them joy in the journey of mixed challenges and blessings.

I hope that my daughter will be safe from any who want to take advantage of her.

I hope she continues to search for and find purpose.

I hope she experiences true friendship.

I wish for more than surface acceptance - I wish for relationship - for my daughter, for others like my daughter, for the families of people like my daughter, and for the communities in which they ALL live.  Active, vibrant, caring. supporting.  Beyond Down Syndrome.

Jesus calls us to fellowship - to love one another as He loves us.  Unconditionally.  With compassion, forgiveness and grace.   I wish for the kind of fellowship that sees the heart of its members - that celebrates the differences - that cultivates all parts of the vine - and recognizes the fruits of the spirit in every member - no matter the number of chromosomes.

Heavenly Father, Today I thank you again for the gift of my daughter.  She is your perfect child.

*** If you are interested in more about Down Syndrome, or about reading some other blogs, please feel free to use my Down Syndrome tab.  I highly recommend the blogs by Noah's Dad, and Kelle Hampton for stories.  The National Down Syndrome organization sites are full of information and other resources.

Linking with:

TellHisStory

Three Word Wednesday
BlogLovin Blog Hop
Imperfect Prose

A Small Huge Thing

Behold, I belong to God like you; I too have been formed out of the clay.

Job 33:6

It was just a small thing, really.  Just a flip of the hair.  The hair that we had finally been able to grow out after years of Buster Brown haircuts she had long outgrown - after years of forced visitation to a poisonous environment (read I-won't-say-any-more-because-it-isn't-very-nice).  The hair was finally long.  Finally her own to choose to do with as she wanted.  Finally so many things.

And then this small gesture.  We were at lunch.  My teacher friends, me, and my daughter.  We'd made a date to go to the outlet mall for some shopping and long overdue relaxation.  And we were at lunch.

And the waiter was a young man.  And my daughter asked for a diet coke and then flipped her hair.  At him.  With a smile.  A big smile.  And a little giggle.  And she turned to us and said, "I love men."

Oh dear!  Such a small thing and then it was huge.  This girl, my daughter, my beautiful, then-seventeen-year-old Down Syndrome daughter was making her hormones known.  Like a typical teenager.  Like any other girl.  Flipping her hair and giggling.  Oh dear!

And in an instant, I saw her in a different light.  Perhaps in God's light.  This child, this teen, this young woman.  Doing the normal, the typical, and doing it out loud.  Such a small, huge thing.

Linking with Five Minute Friday

#TellHisStory: He Very Is

Jesus answered, “I am the way and the truth and the life. 

No one comes to the Father except through me."

John 14:6

"I very am," my daughter stated, with her sincere eyes on - trying to convince me with the power of her stare.

"You very are, what?"  This inserting of very into her statements is a new one - apparently she feels she needs some extra emphasis.

"Leader," she answered, "Youth ministry - I very am," and she showed me the church bulletin insert that she had filled out.  The insert for Mission Sunday.  She had checked every box and filled in every line.  She'd even checked off the box that said she couldn't attend - and she'd written in homebound plants for Pathways etc.  

She pointed to the line for her name.  "I told you remember.  I very am."  And I saw where she had put leader.

Who can argue with that?

I was always charmed by the inclusion of Chris Burke in the show Touched By An Angel.  He's an actor who has Down Syndrome - like my daughter - and he played the part of one of God's angels in the show.  Why not?  He's written a book - an autobiography.  I read it when my daughter was young.  She's 22 now.   He wrote that he'd always wanted to be an actor.  His parents corroborated - telling about his scriptwriting and play-acting from a young age.

They got me at scriptwriting.  I just couldn't see it - creative writing - was just way beyond anything I saw my daughter or any of her friends doing.  Not to say I didn't believe it - I just thought Chris must be one of those exceedingly high-functioning individuals with Down Syndrome.  He actually decided to call it Up Syndrome, because he didn't like the connotation of Down.

My daughter, on the other hand, has been pegged by cognitive evaluations in the moderate range - numerous times.  She can be difficult to understand - beside creative vowels and consonants and stuttering - she drops morphemes - those little bits of meaning that define tense and possession.  She sometimes gets her pronouns confused.  She changes syntax - oftentimes using a subject-object-verb order - I call it Yoda-speak.

You have to listen.  You have to have context.  You have to want to know what she's saying because it's going to take a little effort.  But she helps out.  In the past year, she has begun using more synonyms when I don't quite understand a word.  Those pronouns are almost always right.  She's picking up on some word endings that she used to skip.  She has started bringing out papers and written copy - pointing to words to prove her point.  Like leader.   

Imagine having to use everything you can think of just to communicate one simple message - saying it, writing it, using synonyms, telling stories, acting it out.  I wonder that I wouldn't give up - the effort outweighing the thought.  Thankfully, thankfully thankfully, Jesus didn't give up.  He presented his Message in every way possible - even by dying - so that we would receive it.

He is the Truth, the Life, and the Way.  He very is.  Who can argue with that.

Thank you, Father, for my daughter, who teaches me.  Thank you, for Jesus, who never gave up teaching us.

Linking with TellHisStory

Humbled By Kindness Part 3

If your gift is to encourage others, be encouraging. If it is giving, give generously. If God has given you leadership ability, take the responsibility seriously. And if you have a gift for showing kindness to others, do it gladly.

Romans 12:8

“You know, I still didn’t completely trust – much as I’d like to say I did.  Not at first.  I left CeCe on the line – explaining that I would be in the auditorium, but that Daniel would make sure she did what she was supposed to do,  then I immediately checked up on this Daniel guy.  I spoke with one of the APs – the one whose wife headed up our Special Olympics track team – the one I thought would have the most sympathy and understanding of CeCe’s situation and needs.  I asked him if this Daniel guy would actually help CeCe out, if he would actually take this added responsibility on.  The AP assured me – he said the boy was one of the good guys – and he said he’d keep an eye out for her as well…”

“So I sat back and watched the kids come into the auditorium.  I couldn’t help but smile when I saw CeCe and that Daniel walking in – she had his attention, she looked like she was talking a mile a minute and he looked like he was listening….he had that attentive pose – slightly bent to get an ear closer to CeCe – there’s no other way to say it – he had a bemused look on his face.  You know, the kind of look that says ‘I really have no clue what you’re saying but I’m going to go along with it anyway…’.  It was wonderful, watching them.  Tall and short.  Black and white…”  She trailed off, eyes blinking again behind her glasses. 

I watched her; she was staring off again – that see-all-see-nothing stare.  A slight movement directed my attention.  Her hands were trembling – tracing over the picture in the album.  She caught the edge of the page and turned it, slowly, smoothing over the new sheet of old photos tenderly. 

“I miss her, my girl.”  The whisper floated,  journeying across the space and time that separated us.  The old woman and me. 

I leaned in closer to see what her fingers were remembering.  The girl’s eyes were riveting.  Her blonde hair was lifted up and away from the somber robe – making the whole picture playful.  Teasing.  Her eyes, though.  Her eyes were staring right at the camera.  It looked like they were staring right at me.  They were tilted slightly at the corners, flat lids.  Young.  Young and innocent and joyful and wise.  Could they really be all those things?  To a camera?  To a stranger across the years?  I noticed the details – the cap was a little too big – coming down over her brow just a little too far, creating a shadow across her forehead because it didn’t quite fit.  She was looking away – at another camera, another photographer in the next couple of pictures.  In one, she had her arm around another student.  In this one, it was her smile that captivated me.  So honest.  Pure.  Sweet.

“.,,Last year….”   The old woman had turned toward me again.  She, too, was smiling.  “Yes,”  she agreed.  “My CeCe had that same effect on everyone.  She spilled over with joy.  She was all about relationship.”  Her finger rested on the photo of the two friends.  “I miss her.”

“So, do you want to hear the rest of the story?  About that boy?  And my girl?  It was something special.”  The woman’s lifted her eyes – sparkling – from the album in her lap.  I nodded.

  

“Well, there’s really not much more to it all, really.  Not anymore with my memory, anyway…”   She laughed – a short burst of a humph-y laugh, and continued.  “That boy – Daniel – he caught up to us from the class picture,” her finger pointed to the photos.  “He said he’d been watching for her – from the top row.”  She looked up at me again.  “Can you just imagine?  Him in his graduation robe, looking all sharp and eyerything with his tie and honors medal around his neck, in the middle of his own graduation, looking for my girl?  Right then and there I prayed a little prayer of thanks.  He was truly a gift.”

“CeCe and I walked with him into the Expo Center where this thing was going to take place.  It was big and there were a lot of people, crowding into the doors and looking like they knew where they were going.  We were shepherded outside and back in to an area just for staff and graduates.  Did I tell you that CeCe’s principal had issued me an ID so I could be with her before the big line-up?  So I was there in the middle of all these students.  CeCe had to pick up her name card from a table and get ready to line up.  After I zipped her robe back on, Daniel told me he could watch her, and would stay with her from there.  I trusted him – CeCe was so excited.  She told me to go – she would be fine.  So I left.”

“The next time I saw my girl, she was being helped down the stadium steps – by Daniel – in her graduation line – in time with Pomp and Circumstance.  Of course, I got all emotional.  Still do when I think about it…Somehow that boy knew those steps were going to be difficult for my daughter to manage.  She was in seventh heaven holding his arm.  You could see the relationship all the way down the steps, then all the way down the aisle….right up until the moment the row behind them blocked the view – of the tall boy and the short girl – taking care of each other – I could just picture that bemused expression on his face because her face was tilted toward his and her mouth was moving – a mile a minute.”

“It’s like snapshots in my head – these memories of the ceremony,”  my Aunt had closed her eyes and was leaning back against the cushions of her chair.  She turned those closed eyes toward me and continued.

“She was in the third row, on the side closest to where we were sitting.  We saw the row stand and watched as they lined up along the opposite wall – moving toward the stage and their handshake.  CeCe had been practicing that handshake for weeks – reach for the diploma with the left, shake with the right, look the person in the eye.  She actually had a surprisingly firm grip.”

The woman moved her hands away from the album.  They had been covering a few more of the old pictures.  Blurry again.  But knowing the story, now, I could see the tall and short – in line against a the far side of an arena.  It was obvious they were talking – his head tilted down, hers tilted up.  In one, it looked like he was guiding her – arm behind her back. 

“You see it, now, don’t you?”  The woman’s voice was muted in the stillness of the room.  She turned her head toward me – eyes still closed.  “My camera may not have gotten the detail – but it captured the important stuff – you see, don’t you?  The relationship.  The trust.  The caring.”  She opened her eyes and pointed to the final picture on the page. 

“Look.  Closely.  I almost missed it myself….yes, that’s CeCe shaking the hand of her high school principal.  You can see the school board members lined up – she had to walk down the line.  Three hands.  Then there’s the photographer.  You can see his camera and his concentration.  Catching the moment.  But look behind him.  On the floor – where the students are lining up for their second picture.  He’s the one turned around to watch.  He’s still keeping his eye on my girl – still watching out for her.  Now, that…” the old woman turned to me, concise and crisp, big smile forming, finger pressed into the book, “That’s special.” 

She was blinking behind her glasses – blinking away tears.  “I just can’t tell that story without crying – even now, after all these years.”  It was almost like she’d forgotten I was even in the room – a comment to herself.  “I’m always so humbled by his kindness.”  She stopped the blinking.  Tears tracked along the fine wrinkles.  She gave me one of her special teacher looks – the sternish one – the look that said listen to what I’m about to say…  “I made him introduce me to his mother – at the end – I wanted to make sure she knew what a good boy she’d raised.  It was the least I could do…for all he’d done for my girl….”

“You know, he never did stop taking care of her – He helped her move her tassel, throw her cap in the air – and retrieved it for her, walked her back up the stairs, and even stayed with her – us – when she traded in her card for her diploma.  He told me CeCe had calmed his nerves.  Imagine that!  He stayed right up until I met his mom – and his sister, his grandma, his girlfriend.  They were all proud of him – his graduation….He was such a good boy.”

She closed the album and pushed it to the side of her chair.  Her face was composed.  She smoothed her hands over the tears, then back to her lap where they lay, calm and still.  “I’m a little tired, now.  Gonna take a catnap – visit my girl.  She always brought out the best in people.  I miss that. ..miss her….”.  I watched her drift off – quiet breathing, chest barely moving.  And then a smile – forming just like a rainbow, twitched at the corners of her mouth…and stayed.  Serene.  Pure.  Sweet.

I think she found her girl. 

Heavenly Father, Thank you for kindness; help us to recognize it in our everydays.  Help us to appreciate and encourage those who choose kindness.  Bless them.

Humbled by Kindness Part 1

Thus, by their fruit you will recognize them.

Matthew 7:20

This is the first of three parts of a story I wrote last year, a true story based on my daughter's graduation - told in a fictional setting.  Finding joy is sometimes a question of balancing today's news with our own experience - I was truly humbled by this young man's kindness to my daughter.  Humbled by his actions, and humbled by the fact that for whatever reason, his actions were unexpected - 

“There’s always a story”, the voice cut through the velvet-quiet of the Home, “behind the story.”  Her hand was cool, skin papery with a map of blue veins and those old-people discolorations, resting on the arm of the chair.  Her chair.  Upholstered in thick pink satin and embroidery – just a little worn at the piped edges.  Like her  - buttoned into a Zsa Zsa bed jacket, hair all poufed and perfect in a fine-line-powdered-face way – just a little touch of lipstick coloring outside the precisely drawn mouth.  I watched her mouth as she spoke.

“She was just a little girl – cute in that special way of hers – and thrilled to be in that cap and gown.  Her eyes danced between us all – flitting from person to person like a hummingbird.  And her smile just lit up the place.  She swished when she walked, making the gown and tassel swing.  Looked like she was playing dress-ups – even though she had just celebrated her 21^st birthday.  Oh, but that was our CeCe.  She had a way of showing us the joy in the smallest things – and it was contagious, that joy.”  The old woman, my Great-Aunt, shifted in her chair, smiling – and reached to point to a photo in the album on her lap – focus all gone fuzzy, like looking through vaseline.

“Can you see her?  In the blur?  That’s my CeCe – the little one, right next to the big one.  His name was Daniel – going to one of the big Texas Universities on a football scholarship – six-two at least, and around 240….”  Her mouth stiffened slightly, “Silly camera could handle lights or distance, but it just couldn’t do both.”  Pause.  “Sure wish I’d taken pictures of all the moments between the two kids.  She was over a foot shorter, probably at least three years older, and you can just imagine the social distance - between my Down Syndrome girl and the football star….. “  She raised her eyes from the book, seeking mine.  “That’s the story…. ”

 Sniffing a little, shaking her head, she continued.  “It began on rehearsal day.  I had to take CeCe up to the high school to practice the lining up and walking in and all that pomp and circumstance.  Oh, but my girl had a funny way of saying things – kind of Yoda-speak, always putting the verb before the subject, and mixing up her pronouns and tenses.  She just couldn’t get her mind wrapped around time – everything was last year….”

This pause lasted a long time – like listening to a thousand-mile stare.  Then abruptly she tapped her finger back on that out-of-focus picture,  “….last year,” she smiled slowly and continued.  “Every once in awhile, my girl would come out with a completely understandable sentence – perfect syntax and surprising clarity.”

“Mom, I am nervous.  She said in her deepish voice – the ‘r’ not quite pronounced sounding more like nauvous.”

“I could usually put a positive spin on stuff like that,  Nervous?  You’re just excited, sweetie.  I told her.  Shoot.  I was nervous.  I had no idea how CeCe would do with this graduation thing – but better that she try….”

“Anyway, we made our way into the auditorium where the kids were gathering.  I kept looking around for CeCe’s teachers, or for one of the aides from her classroom – but I didn’t see anyone.  The high-schoolers were moving toward the front of the room and finding seats – so I told her to go on up. “

“I watched from my seat in the back.  When she’s nervous, she walks with one arm wrapped around her back.  I remember thinking she was so brave-she just forged ahead with that arm reaching up behind… She was unsure, but wanted so badly to do and be with the other kids.” 

“And then she was in the bleeder-seats with me.  Her face was twisted up in that stop-my-lip-from-quivering thing that comes before tears. “

“Mom, stay with me,” she said, and she reached out to take my hand.  Her hand was shaking.  She doesn’t know what to do, where are her teachers, she’s scared to death, don’t they know she can’t do this alone, why am I making her go through this, she’s so anxious.  Thoughts were tangled up in my head – empathy, blame, pride.  I told her to stay with me until things got started.  As she sat down, I held up my right hand to her left – thumb, forefinger, and pinky up – she bent her fingers into the same position and we I love you’d – kind of our secret ‘It’s ok’.”