E-Lationship

We argue, on occasion. True confession. It's a question of expectations and opinions and belief in the right or wrong of a situation. A question of statements, and disagreements, and finding common ground to go on. Never loud; no yelling, not even volume raised, but argument nonetheless.

And my daughter knows. She's sensitive to tone and innuendo, to body language, to abrupt silence. I don't know what goes through her mind. A storm cloud looming? A rocky path? It's ok that she witnesses our disagreements; she needs to know that people have disagreements. Even people she loves. Even her parents. She needs to witness respect in the difference. And resolution. It's ok that she recognizes things are not always hunky-dory. That life goes on. That love goes on.

And that's when I learn from her.

"It's e-lationship, Mom," she tells me. "You and K...., it's e-lationship." She puts her arms around me, the empathy master working on comfort, and all I can do is smile at the Sierra-ism. She skips first letters on her words sometimes, in this case, turning relationship into e-lationship.

But isn't that just like her. To show me the joy?

Elate - the verb means to make someone ecstatically happy. It originated from a combination of two Latin roots: ex -- meaning 'out or from,' and ferre -- meaning 'to bear.'  These became 'effere', which then became 'elat' which means raised - which then travelled over to late Middle English as the verb we now know.

I like that. Relationship and Elationship. We raise up, we bear. From two minds, from two people, out of two hearts -- we raise up.

Love is like that.Relationship is like that.

"At that season Jesus answered and said, I thank thee, O Father, Lord of heaven and earth, that thou didst hide these things from the wise and understanding, and didst reveal them unto babes: yea, Father, for so it was well-pleasing in thy sight. All things have been delivered unto me of my Father: and no one knoweth the Son, save the Father; neither doth any know the Father, save the Son, and he to whomsoever the Son willeth to reveal him.

Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light."

Matthew 11:25-30 (ERV) 

Five-Minute Friday and the prompt is Season. It is the beginning of Advent and the sometimes crazy Christmas season is upon us. In looking for an anchor for this post -- a scriptural anchor -- I came upon this passage from Matthew. In every translation except English Revised, season translates as time. As in - in that time... Curious. 

I tend to do this thing - this choosing of the 'underdog', so to speak. This choosing of a scriptural anchor that only uses season in one translation. When the whole prompt is season.

Hmmm....

I'm sure it's because of the reference to children -- to the wisdom of children. Because I am a witness to this through my daughter. My 24-year old daughter who is not a child, yet, because of her unique capabilities and differences, perhaps because of her extra chromosome, shows me a different perspective.

In Matthew, Jesus was most likely at his wit's end (if you can imagine), revealing himself through supernatural means -- miracle upon miracle -- over and over, in cities and towns far and wide, yet realizing that the people he came to redeem still did not see or believe his true nature. How frustrating. So, instead of ranting and raving at those people, he turned the situation around and thanked his Father for the children - children without the burden of worldly knowledge - who believed through heart rather than head.

It reminds me of my daughter - who believes through heart rather than head. 

"It's e-lationship, Mom."

Of all the seasons of the year, it seems to me that this is the one where we need to stress the elationship in our relationships. 

Love is patient and kind; 

love does not envy or boast; 

it is not arrogant or rude. 

It does not insist on its own way; 

it is not irritable or resentful; 

it does not rejoice at wrongdoing, 

but rejoices with the truth. 

Love bears all things, believes all things, hopes all things, endures all things.

1 Corinthians 13:4-7 (ESV)

Bacon Bacon Bacon

Today, I am excited to join a community of writers. A one-word prompt and five minutes. Now, what in the world to do with this:  BACON!

I read the word 'bacon' on the page and my mind goes right to that commercial with the low-camera following a dog on his way through a spotless, gleaming kitchen.

"I smell bacon..." The voiceover is an adolescent, voice-just-changed, emphasis-on-the-BAcon. And the dog's front paws slide out sideways as his rear end tries to keep up with the nose in the air and the tail wag. Excitement on both ends.

"Bacon, bacon, BAcon...." Voiceover enthusiasm intensifies until he finally gets his treat. His bacon-flavored treat. From loving hands in that gleaming kitchen.

Yup! Our family does the commercial every time we cook up some bacon. Which really isn't very often, but special, just the same. I'm smiling just thinking about my daughter, with her little bit of a Down syndrome accent...

"Mom! Bacon bacon BAcon!!" And she literally breaks into peals of laughter.

"It's my favorite."  Yup. Of course it is. Because EVERYTHING is her favorite!

Ya know, I wondered how this would work. Five minutes and bacon. How the words could somehow turn a 'pig's ear' into a silk purse....  (you know....)

Well, maybe it's not a silk purse, but I'm smiling, and it's early early. And these moments, these simple things, these uncomplicated memories are precious.

Aren't they?

My heart is not proud, Lord,

my eyes are not haughty;

I do not concern myself with great matters

or things too wonderful for me.

But I have calmed and quieted myself,

I am like a weaned child with its mother;

like a weaned child I am content.

Israel, put your hope in the Lord

both now and forevermore.

Psalm 131 (NIV)

So thank you, Five-Minute Friday community. Thank you for choosing this yummy word today.

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.

This Is Forgiveness

Then Peter came to Jesus and asked, “Lord, how many times shall I forgive my brother or sister who sins against me? Up to seven times?”

Jesus answered, “I tell you, not seven times, but seventy-seven times.

Matthew 18:21-22 (NIV)

The other day, I read something so profoundly full of grace and forgiveness, it brought instant tears to these feel-like-I've-seen-everything eyes. I was cruising through Facebook, skimming through the words and stopping briefly at the pictures. This particular picture caught my eye.

If you know me at all, you know that I have a daughter who is proud to tell anyone and everyone, that she has Down syndrome. That she is a young woman with Down syndrome. She doesn't lack for self-esteem. And she doesn't lack for compassion, or empathy, or friendliness, or helpfulness, and sometimes, just, plain stubbornness. Which can sometimes make me crazy. But that's not the sum total of who she is.

She's the girl who texted the wrong Uncle Jerry (my sister's husband) to tell him happy birthday - because she saw my happy birthday message to MY Uncle Jerry on Facebook (her great-uncle -- thus, the confusion). She's the one who tells my husband about his birthday present within five minutes of telling me that it's a secret. She just can't keep good news to herself. She's the one who showed me a series of texts to my sister:

My daughter: love you
My sister: I love you, too! So much!
My daughter: love you now let me work

So, this picture caught my eye, and I just HAD to click on the MORE. I had to read the whole story.

Well, it wasn't a story, really, it was a letter. The letter was to a young woman, quite pretty, a news reporter in fact. Apparently this news reporter described President Obama as a 'retard' in a tweet, and the letter was written in response.

True story. It actually happened in 2012, during the Presidential debates.

For me, hearing the word 'retard' feels like a punch in the stomach. It wasn't too awfully long ago when my daughter was in fifth grade at the school where I was teaching. Fifth grade. My classroom sat beside her classroom - two portables along the fire road behind the main school building, right next to the playground. We used to call them our little cabins in the woods. Our classes had recess together, the teachers taking turns to monitor.

One day, during my partner's turn at recess, a couple of girls from her class came to see me. Upset and fidgety, they told me about an on-going incident involving my daughter and one of the boys from my class. Apparently he had told my daughter that his name was JackAss. My daughter is really good with names. Just last weekend she kept all 38 of our relatives straight during our visit to Indiana. It's one of her superpowers. So this boy told her this name and then proceeded to follow her around the playground asking her his name. When she said what he told her, he laughed at her, and called her a retard.

I could barely thank the girls for letting me know what was going on.

I. Was. Furious.

Did you know that God can calm a storm? Thankfully, I said a little prayer before calling the boy to me - to hear his side.

Long story short, my classes, from that time on, were educated on the word 'retard'. They were educated about it's history -- how it used to be used to describe the mental capabilities of people with delayed cognitive abilities -- how it had slowly evolved into an insult -- how using that word as an insult, meant that they considered people like my daughter to be insults.

Not too long ago, I wrote an article about the word, very much like my classroom lecture. You are welcome to read it on page 10 of the July, 2014 Christian Journal.

But now this true story. This beautiful, grace-filled letter by a young man with Down syndrome. I don't know if he had help - the writing is leagues beyond anything my daughter is capable of. The forgiveness may be leagues beyond anything I feel I'm capable of.

See, he asks the pretty reporter why she uses 'retard' as an insult. He explains that, as a man with Down syndrome, he struggles to break public perception that intellectual disability means being dumb or shallow. Then he gives examples of the kinds of people she could have possibly meant to link to President Obama by calling him retarded. The people he describes are victims who rose above the bullying they received in school, or people who have to consider what they say, people who don't jump on the quick-comeback-snarky-soundbite bandwagon. He asks if she is perhaps linking President Obama to people with intellectual disabilities who live in low-rent housing, with state-provided health care who STILL, in the midst of poverty, manage to see life as a precious gift.

I've seen these people, friends of my daughter's, friends of mine. They participate in Special Olympics, supporting each other with encouragement and enthusiasm. They worship at churches and help with missions. They participate in meetings about living conditions, and jobs; they show up and sometimes even speak up at rallies and forums. They work. They play. They argue. They gossip. They forgive.

They forgive.

That's what made me cry when I read this letter. The young man was very clear and concise about how the word 'retarded' is used as an insult. He was very clear and concise about the link between a population of people and that insult. If you don't read the whole letter - then here are the final seven sentences...

After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me. You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV. I have to wonder if you considered other hateful words but recoiled from the backlash. Well, Ms ___, you, and society, need to learn that being compared to people like me should be considered a badge of honor. No one overcomes more than we do and still loves life so much. Come join us someday at Special Olympics. See if you can walk away with your heart unchanged.

A friend you haven't made yet,

John Franklin Stephens 

Global Messenger Special Olympics Virginia 

... A friend you haven't made yet....

"YET..." This is hope. This is forgiveness.

Linking with Three-Word Wednesday, TellHisStory, Coffee For Your Heart

Try: In Which My Daughter Teaches Me, Yet Again!

It's Five Minute Friday, again, the day when writers 'just write', on a one-word prompt, for five minutes. No time to edit, no time to revise, no time to rethink. Just. Write. So, once again, much as I try, I can't seem to bring it all in under the five-minute mark. But I'm getting closer. This week's prompt, appropriately, is TRY,

We drive home from the clinic with the radio on. At first it is simply background noise because we talk about my daughter's appointment. This appointment was to start the process of a referral for a second opinion for a possible upcoming procedure. Sounds kind of wishy-washy, doesn't it? But the possible procedure is a big deal.

And now I have to digress. From the time she was in grade school, my daughter participated in Special Olympics in some form -- she's competed in cheerleading, and basketball, bowling, and track-and-field. It was during her high school years in track-and-field that we started noticing a more pronounced hitch in her step. A definite limp. Not that we ever really cared about her times, we noticed a distinct slow-down and kick-out. She still told us she was 'fast as a rocket', but it was becoming obvious that her orbit was on a slow decay.

So started the process of finding out what was going on with our joy-in-the-running girl. The first orthopedic doctor had her walk on her toes, then try to walk on her heels, then he measured the lengths of her legs. He told us that this hitch-step we observed was related to the low-muscle tone which was related to her Down syndrome. He told us it would probably get worse as she aged, but that there was really not much to be done. We let her keep running; after all, who can stop a rocket?

We saw him a second time, the following year; the hitch-step was worse; she was throwing her leg to the side as she labored down the track. Smile as wide as the stadium, dead last every time. My husband didn't accept his opinion this time, and we asked our insurance company to send us to someone else. Much has been said about military insurance - our experience has been very good. Within a month, we were seeing another orthopedic specialist.

This one took an x-ray. And showed us that Sierra's hip was not completely in its socket, showed us that her socket wasn't quite as round and deep as it should be, showed us that there was much more going on with our daughter than mere low-muscle tone. Then came an explanation of a possible surgery that could correct the joint. In involves breaking the bone around the socket and pinning it back in a new position - a deeper, rounder position that will better cradle the head of the femur. It possibly involved breaking the ball off of the head of the femur and repositioning it so it would better nestle into the newly-formed socket. This doctor suggested the procedure might need to be done in the future; it was not imminent because my daughter was not experiencing any pain. He also let us know that complete hip replacement was also an option -- but that we would want to hold off for a time -- the life span of hip replacement is around 10 years and Sierra was only 20 at this point.

My brain whirled. I memorized the name of the complicated surgery - periacetabular osteotomy, with a possible femoral osteotomy. And I went home and started looking it up online. It is a very specialized procedure and not really done by many orthopedists. Our instructions after this visit, were to keep an eye on Sierra's joint; watch for further movement out of socket, and watch for arthritis (a new character in the saga -- and not a very nice one).

So - long story short - four years, two military moves, and four orthopedists later - we are looking at a more imminent procedure. And the clinic visit yesterday was to request a second opinion and if-we-have-to-have-it-done request that Sierra be seen by the hip specialists at Boston Children's Hospital.

So, my daughter and I are on our way home from the clinic where I requested the referral to send us 330 miles away to see these specialists, and we are talking about how friendly her primary care manager is, and my mind is whirling again because this process is a bit daunting - and remember, the radio is playing... It's one of my favorite songs - upbeat and catchy. I look at my daughter and tell her I love this song, and her actions show me that she has shifted from the conversation to the music. First, she starts clapping. Then the clapping widens to include an on-the-beat shoulder swing. Then she gives me an eyebrows-raised, wide-eyed grin of recognition. "It's SHAKE, Mom, look!", accompanied by a shimmy and a hair flip. And finally, the statement that practically makes it impossible for me to drive, I'm laughing so hard...

"It's SHAKE, I wrote it."

Oh God! Help me to look at life through my daughter's eyes. Help me to enjoy each moment. Help me to push away the whirling worry of things I can't control, and help me to put into place, the things I can. Help me to laugh more, dance more, sing more.

Not a New Thing

The Adoration of the Christ Child
Flemish Painting circa 1515,
www.metmuseum.org

Dear friends, let us love one another, for love comes from God. 

Everyone who loves has been born of God and knows God. 

I John 4:7 (NIV)

I purchased a doll for my daughter, Sierra, years ago. Of course it wasn't her first doll, and it wasn't to be her last. But I thought this particular doll was important for Sierra to have, so I gathered up some rare-at-the-time money and I sent for her, Dolly Downs, through a mail-order site. I think my daughter may have just turned two.

Up at the top of this blog, is a list of my pages. My home page carries posts in backwards chronological order, the further down you scroll, the farther back you go. There is a page of stories, I pulled out the titles and first paragraph or so and linked them to the original post so they wouldn't get lost in the archives. There is a page for poetry as well. Then, there's a page of old posts from a blog I started and discontinued years ago. I just couldn't let them go away, so I saved them here. But the first link on that page list is titled Down Syndrome. See, my daughter has Down syndrome (DS); this page includes links to every post I've written about my girl. And it includes links to other websites and blogs by and for people with DS.

Sierra was developmentally delayed. This is typical for kids with DS. In fact, I suppose that at age 24, she continues to be developmentally delayed, but I just don't tend to notice it these days. Our world focuses on her CANS and not so much on her CAN'Ts (but that's another post). So, back in the early days, she was barely sitting up on her own, she wasn't walking, she wasn't drinking from a cup, she wasn't crawling. But, I had placed a mirror sideways along the wall where she could see it. She scooted up to it and looked and looked. I wondered what she saw. I wondered if she recognized the girl in the mirror. I wondered if she needed a role model, if she needed to see another face that looked like hers, with the button nose, the bright smile, and the epicanthic fold that crinkled her eyes to nothing when she laughed. That's when I ordered the special doll with the special features.

  

Then the doctor said she'd need glasses. At two. I went right out bought a couple of packages of those party-favor sunglasses from Walmart. I took them home and popped out the darkened lenses and put them on every single face I could find. Mine. My husband's. ALL of Sierra's dolls. I put a couple of pairs of those crazy frames in the bathtub with Sierra so she could get used to wearing them. She was finally wearing her real glasses by the time Dolly Downs arrived, so I drew a pair of glasses right onto that doll's fabric face. My daughter was, quite simply, delighted.

Here's the point. A lot has been written about models and role models and diversity. No one really wants to be an island. From the rising representation of diversity in advertisements, to the recognition of worth and accomplishments of people of all races and ethnicities, male and female, typically-abled and challenged, we (meaning humanity in general) want to see ourselves. We want to know that we're not alone. We want to know that we matter. We want to feel like we're somehow important enough to notice. And this isn't a new thing.

I recently came across this painting from early in the 16th century. The artist is unknown, but by the style and subject, thought to be a follower of Jan Joest of Kalker, a Flemish painter. There are two figures in this painting with Down syndrome. Imagine! One is the angel just to Mary's left. The other is the shepherd directly behind (and above) the angel centered on the manger. One a heavenly being, the other, salt of the earth. Included. In places of honor.


We want to see ourselves. We want to know that we're not alone. We want to know that we matter.

Linking with Monday Musings, and Small Wonder

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.

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

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

The Schedule

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

gentleness and self-control.

Galatians 5:22-23

"I love you more," she says as she walks by with the sound of flip-flip-flopping from orange-jewel-sparkle sandals.  My daughter rarely ventures into the office these days - these summer days of headphones and HGTV, of books on her lap, and ipad FB messaging.  Her favorite place is the end of the sofa.  The end with the table, with the lamp, with the space to spread out.  Her nerf-dart gun.  Her flashlight.  Her phone.  Her papers.  Her space.  I think it might be the 21st-chromosome-Down-Syndrome-doubling that gives her this hyper organization.

Sometimes I sit in her seat; I tease her.  I want to see what she'll do; I want to hear what she'll say.

"That's my spot," she stands in front of me, hands on hips, chin jutting forward.  The words hang for a moment before they are shattered by an eruption of giggles.  Her posture changes; her expression changes.  Her eyes widen, as if she's surprised by the laughter - her own laughter.

"It's Sheldon," she says - in reference to a character on a popular TV show.  She has just quoted one of his lines.  Like she has to explain the context of her remark to me.  

"I love you double more,"  I call after her, smiling to myself because I am behind in my plans for the day and she loves me this time because I just finished printing off her schedule for her.  

She has been reminding me all morning.  Right after she delivered her morning hug.  "Mom, my schedule...."  During her morning coffee, "It is Monday, my schedule..."  While eating breakfast, "My schedule yet..."  Her hands in the air emphasizing - palms up in the I-don't-know position - like she wants to say so much more.  Shaking her head at me, voice accusing.  "I need it, my schedule."

The fact is, I AM running behind.  Wake up with husband - check.  Coffee with Sierra - check.  Exercise - check.  Help Sierra in the shower - check.  Shower myself - check.  Get breakfast, let dog out, get dog's breakfast, empty dishwasher, put breakfast dishes in, go back upstairs - brush teeth, wash face, fix wet hair, call mom, wash Sierra's face, fix her hair - check, check, check, check, check, check, check.  I haven't written my post yet.  I haven't checked the paint in the garage.  I haven't put a load of laundry in the washer.  I haven't checked my job status, or my emails, or .... 

 It is for freedom that Christ has set us free. Stand firm, then, and do not let yourselves be burdened again by a yoke of slavery.

Galatians 5:1 (NIV)

It only needs one appointment - one change - and then I can print it.  My daughter's schedule.  Then she will be able to relax into her day.  Into her week.  She'll look at her watch, placed just so on the arm of the sofa, and she'll check the boxes off as she completes them.  She'll keep the schedule on the coffee table with a pencil - checking off boxes all week.  At the end of the day on Friday, after she checks that she made the coffee for Saturday and set the table for dinner...the last two items for the week...she will throw the schedule away.  Completed, purpose fulfilled.  She'll need another on Monday.

Context.  The I love you more statement?  Yes, she can finally pick it up from the printer.  But it's more than a simple thank you, it's also an I-know-I've-been-bugging-you-and-I-want-to-be-sure-we're-still-ok. 

Context.  The smile behind the I love you double more?  First - I'm always working on communication skills with my daughter.  According to the Down Syndrome experts, her speech falls far behind her thinking.  We are always working on ways to bring her thinking to us - to the people around us - to the world in general.  She's 23, and hasn't stopped progressing, hasn't stopped trying, surprises my husband and me on a daily basis.  So, we've gone through I love you to the moon and back, I love you to the ends of the universe, I love you most, I love you....times a million, I love you bunches of flowers... I'm proud of the way she's using a variety of these formulaic phrases.  Extend, extend, extend. Second - it strikes me as humorous that I'm giving my daughter a schedule when it is obviously me who needs one.

How often does it happen that the thing we provide to others is the thing we need the most?  I plan and provide a schedule for my daughter to keep her on track and to help her a navigate a world of independence within the big, broad world of anything goes.

Context.  So I say, walk by the Spirit, and you will not gratify the desires of the flesh. For the flesh desires what is contrary to the Spirit, and the Spirit what is contrary to the flesh. They are in conflict with each other, so that you are not to do whatever you want.  Galatians 5:16-17 (NIV)

Guess what - we ALL need something to keep us on track and help us navigate a world of independence within the big, broad world of anything goes.

Heavenly Father, thank you for the gift of your Holy Spirit.  Thank you for guiding and directing us in our busy lives.  Help us to hear.  Help us to listen.  

Linking with:  Women Helping Women, Monday Musings, Mama Moments Monday, Unite

Pure in Heart

Blessed are the pure in heart,

for they will see God

Matthew 5:8  (NIV)

"Oops, I am messed up."

My daughter is telling me that she forgot to rinse her plate after lunch.  It's that am in there that gets me.  She inserts those little verbs to be in many of her statements.  Usually I find it charming.  Today.  Not so much.

I don't want her to think she's messed up.

Meet my daughter.  She is a 23-year old young woman with Down Syndrome.   She recently discovered the Down Syndrome part and insists on telling me at least once a day, if not more.  At first, I thought maybe she didn't really understand what she was saying - what having Down Syndrome meant.  But she kind of, sort of does.  I knew for sure because of an episode on Dancing With the Stars (DWTS) this past spring.

A little background.  There are three things you need to understand about my daughter.  One - my daughter loves reality TV.  She IS every contestant on every show: she chooses her team color on Survivor (before the merge, of course), she sits on the judges panel for American Idol, she renovates and designs for ALL the shows on HGTV - and points out all of the 'issues' in our house (I have chosen to be amused rather than alarmed).  Two - she ALWAYS picks the best-looking men on any show and calls them cutie pie.  And finally, three - she is an empathy master.  She feels the unspoken, the unacknowledged, the unheard.

So, we were watching a get-to-know-the contestant-better clip for James-the-cutie-pie on DWTS.  Somewhere in his celebrity life, he had received a video invite to the prom by a young woman with Down Syndrome named Hannah.  In the clip, he said he regretfully would not be able to accompany her because he was booked on that date.  So instead, he sent Hannah and her mom tickets to see him compete on the show.  I don't believe they ever mentioned Down Syndrome in the clip, but my daughter looked at me as we were watching and told me that Hannah had Down Syndrome.  Then she proceeded to name everyone else she knew or had ever known who had Down Syndrome.  And she had tears right along with mine - tears for the kindness and joy.

I love when things click with her.

So when she said she was messed up, I didn't want that phrase to click.  I wanted her to know she is amazing.  She is beautiful.  I wanted her to know how proud I am of her, and how much she is loved.  So I told her.  Simple as that.  And you know what she did?

She gave me that I-know-what-you-mean look, the old-woman-wise-face, and told me she is a young woman with Down Syndrome.  Like, of course you love me and are proud of me - how could you not?

I don't know why I was worried.

Heavenly Father, 

I know I thank you for my daughter all the time.  I just want to thank you again.  She is such a blessing.  You are an amazing God - how did you know I would need a teacher like her in my life?  At this time?  Thank you.

Linking with Unite, Unforced Rhythms, and Women Helping Women

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

Hearts Like Jesus

You show that you are a letter from Christ, the result of our ministry, written not with ink but with the Spirit of the living God, not on tablets of stone but on tablets of human hearts.

2 Corinthians 3:3

A team-building activity.  Simple rules: tie a rope at the waist height of the tallest group member between two trees.  Each member of the team needs to go from one side of the rope to the other without going under or around.  No talking.  First group done wins.

Her group didn't win by being first.  They didn't win the prize.  They won my heart.

Sometimes I just have to stand back and let things work themselves out.  And it's hard when I want my daughter to succeed so badly.  And these rules seemed impossible.

I watched her group from across the parking lot.  Each girl, except my daughter, tall and lanky.  Athletic.  They started jumping over the rope.  They were laughing and having a great time - and my daughter, who has Down Syndrome, was right there with them, laughing along as each girl took her turn.  Easy breezy.  Except my Sierra - low tone, short stature, a little extra weight.

It came to her turn.  I watched without speaking; I knew she couldn't jump it.  I wanted to wave a magic wand and give her just a little bit of their athletic ability, of their carefree confidence, just a little bit of their typical.  But those kinds of magic wands don't exist.

Her right arm crept up her back behind her, a sure sign that she's unsure of herself.  A sign that she's going to forge ahead anyway.  I've seen it so many times - when she walks into and introduces herself to a group of people she desperately wants to be part of.  Her graduating class at rehearsal.  The 70-member youth group in Texas.  Special Olympics - track and field, and bowling.  And she wanted desperately to be part of this group of girls - the girls who didn't think twice about jumping over that rope.

I watched them - gathered on the other side, talking and laughing.  I saw them look at my girl; I saw the realization of her limitation dawn on their faces.  And I saw them wave a different kind of magic wand.  A heart-like-Jesus wand.

Walking back around the trees, they gathered my girl up in their arms and lifted her over the rope.  Laughing and having a great time.  Easy breezy.  They were the last team to finish.  I have heard that sometimes you have to be last to be first.  I believe it.

Thank you, Jesus, for showing us your heart.  Thank you, Holy Spirit, for guiding us to live with a heart like Jesus.  Thank you, God, for putting these girls, these letters from Christ, in our lives.

Linking with Jennifer, Beth, Michell, Tracy, and Emily at:

TellHisStory

Three Word Wednesday
Doing You Well Wednesday
Winsome Wednesday

Imperfect Prose

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

I DO Wish...

Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here!

2 Corinthians 5:17 

My husband and I were discussing recent advances in gene therapy.  And the question came up - would you 'fix' the Down Syndrome in our daughter?

What an interesting question.

First, to say 'fix' implies that something is broken.  I don't feel like my daughter is broken - in any way.  In fact, she has probably taught me more about how to live than any book, class, or sermon.  Just by her example.  She is forever optimistic.  She is incredibly fair-minded.  She encourages and rejoices in the successes of others.  She is helpful.  She has a quirky sense of humor.

But, am I being selfish by wanting her to continue to be my teacher?  By wanting to continue to enjoy her budding sense of independence and self-worth.  By liking to have her close?

Do I want her to be accepted by the people she meets?  Yes.  Do I want her to experience some of the 'typicals' in her life?  School dances, friends, sleepovers, boyfriends?  Yes.  Do I want her to experience ALL of the typicals?  Drama, temptation, substance abuse, premarital sex, disappointment, heartache, rebellion?  No!  Do I believe that we, without mental and/or physical/communication delays, benefit from overcoming difficulty and hardship.  Yes.  Do I want my daughter to overcome difficulty and hardship.  No!  Does that mean that I wish to stunt her potential?  Of course not!

Do I think that she would choose to change if she could?  I suppose that would be the true litmus test - the one on which I would base my final opinion.  What if she wanted to change?

I know that, in her mind, she is already part of the typical world.  When she does her Zumba in the morning, she calls out the eight counts and talks her 'class' through the routines.  Today, she turned around in the middle of one of the songs and told me she was still on 'So You Think You Can Dance'.  She told me she hadn't been cut yet.  She tells me everyday (several times a day) that she is 'a leader' this year.  She is in 'youth ministry'.  It was how we could justify her continuing to go to the church youth group even though she had already graduated high school.  Every year she 'goes to Hollywood' during the American Idol tryouts.

But the world she imagines is a world in which she is the STAR.  She doesn't know about cutthroat competition.  She doesn't recognize cheating.  She has been protected from real-world sin, real-world evil, real-world anger, real-world disappointment.  And it's not always a conscious protection on our part - it's partly due to her unique comprehension ability, and her joyful outlook on life.

I had to explain with pictures, how people voted for the finalists in choosing her high school's homecoming queen.  I drew votes next to fourteen stick-figure faces, then crossed off nine because they didn't get enough votes.  The stick figure face with her name got crossed off.  It took a couple of times.  But I knew she understood when she told me she wouldn't walk on the football field with the other finalists because she was crossed off.  Not because the students didn't know her, liked someone else better, or any of the other reasons she didn't receive the votes, but because she was crossed off.  She wanted to go to the game to see the finalists, to say 'hi' to the girls who didn't get crossed off, to congratulate the winner.  See, she doesn't get that she wasn't popular enough -  she just found joy in the whole process (yes, I keep learning from her...).

So - hypothetical question - would I 'fix' my daughter's Down Syndrome.  My husband had the best answer.  He said he would only ok making her typical if the process could be reversed at her request.  If she found that being typical was not all it was cracked up to be - she could go back.

I think about Jesus and His radical vision of a different world.  The Kingdom of Heaven.  Unlike my daughter - we are definitely damaged goods.  We need to be fixed.  Unlike the hypothetical question of being able to manipulate my daughter's genes to take away her Down Syndrome, changing her from the inside out, changing the foundation of her DNA - we have a way to change from our foundation.  The name of that way is Jesus.  Unlike my daughter, who, after all of this hypothetical thinking and second guessing, I wouldn't change FOR the world - I DO wish I could change the world.  I can't, but we can.  In the name of Jesus, we can.

Heavenly Father, help me to do your work in this world.  Let me continue to learn your lessons from my daughter.  Help me put those lessons to work in my life, and in the lives of the people around us.  Thank you for your Son, Jesus; through Him, we really can change the world.

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Thankful Thursday