Enter your zip code here

“But How Are You- Really?”

While I’m sure this probably isn’t just a southern thing, my whole life I’ve followed, my greeting of choice- “Hey,” -with, “How are you?” It just sort of runs together and people usually answer with the obligatory, “Fine, thanks,” or “I’m good. How are you?”

We all say it, because let’s face it – do people really want to know how we are? Does the acquaintance I see in the restroom really want to hear the whole, sorted story of my life at the moment? Does the cashier at the grocery store really care what my typical day is like?

True friends love us through our snark and are woman (or man) enough to tell us to get off our pity pot or conversely lend us that shoulder to cry on at just the right time.

The friends that ask, “But how are you – really?” and really want to know. My momma was that kind of friend. I’m so grateful for those friends.

Now, I don’t want to be that special-needs mom who just writes to complain how hard and constant it is, how different or dependent, or sick my child is. I have written such things at times because I think those who don’t live our kind of life need a glimpse in order to give parents and families of those with special-needs the understanding that is so needed and desired at times.

I also have three neuro-typical children and as much as I’ve tried to treat Joshua the same, his needs are different, his development is different, and parenting him is just, well, different.

Parenting any child – babies to young adults and in between, special-needs or not- is one tough job. But it’s the one I love with everything I am.

But some days, dang it, I just want to say, “I’m tired. I’m over adulting and want to just do something fun. I don’t always feel like the “strong mom.” But I have to be to because I am the mom and there is no break, no vacation because even if I were able to get away, my mind would never rest.

But I tell myself when I’m not good that things could be worse and I’m very blessed. Others would love what many of us complain about and that thought flips my gripe into grateful.

When it comes to “those” days with my son, I remember that he is worth every hard thing I must do.

Recently I was asked at church and I responded, “I’m doing very well,” and I truly was at that specific moment.

But then there is today.

And I’m not really sure how I am. I’m doing the daily, but it lingers somewhere behind, creeping up and in as I plan.

Because in one week from today, even at this very moment as I write, my son- the one with Down syndrome, heart condition, non-verbal autism who can’t tell me his pain level or express his fears – will be having a six to seven- hour surgery to fuse rods into his back in order to fix his 60-degree spinal curve.

Preparing by list-making for the week-long stay, coordinating with my older kids about who wants to be there and determining what to do with my youngest distracts me and I welcome the distraction.

This journey to next week should have been over a year ago. A hump/bump I noticed on his back started in motion a roller-coaster I didn’t see coming. We set a tentative date, and then were hit with another challenge that put the spinal surgery on hold.

Joshua had started at a new school after nine-years at his elementary school (he started at age three and we held him back in 5th grade) and he simultaneously started regurgitating his food. We thought it to be adjustment issues – not liking the cafeteria, the noise, the food. We packed his lunch and tried to figure what made it happen.

Finally, we concluded it must be physical and he had endoscopic surgery. He received a diagnosis of severe inflammation of the esophagus and reflux, with a stricture which inhibited his food from going down. After several months of medicine, three endoscopies and seeing a nutritionist to help with weight-gain, we returned to the orthopedic surgeon to reassess.

While the reflux was remarkably better, the scoliosis had worsened and surgery became inevitable.

Joshua is never a “typical” case. Normally, bloodwork and heart tests (EKG and echocardiogram) are done under anesthesia when he has other surgeries. But this time we had to hold him down for them to do these pre-operative tests and he doesn’t understand why and it takes much physical strength (on my husband and teenage son’s part to hold him) and emotional strength because, it honestly breaks my heart to watch.

Surgeries are not new for Joshua. In addition to the endoscopies, he has numerous dental procedures done under anesthesia, ear tubes, tonsils out, adenoids removed, hearing test (because he can’t respond to the typical ones), ear canals cleaned, tear-duct probe, and I’m sure I’m forgetting something because surgeries and illnesses and hospital stays all run together after a while.

But one I will never forget. Open- heart surgery. The first and most daunting.

October 30, 2002 is branded in my mind. The anticipatory feelings occasionally rise up and overtake me even almost 14 years later.

I hesitate to say I’m more “used to” him having surgery, but while it doesn’t get easier, it does get familiar.

I remember my daughter having a tear-duct probe as a toddler (same as Joshua) and thinking it was monumental.

Everything is monumental when it comes to our children.

During one meeting with the surgeon, my husband had to leave as he described what he would be doing to fix our precious son’s back.

I listened.

In the car on the way home, I looked at my husband and said, “I’m going to have to cry for a little bit.”

And while spinal surgery isn’t open-heart, it’s still major and while I am honestly okay this very minute, I’m not sure about the next.

I’m pretty certain that the feelings I had turning over my six-month old to a surgeon to fix his broken heart while mine broke too will most likely resurface as I watch my 14 year-old young man-child be wheeled away as I put my trust in my God and a highly-skilled surgeon.

And I will wait.

And pray.

And cry.

I really haven’t yet cried the ugly cry. Tears have come, but not the real, the body-shaking, tear-streaking, contact-lens fogging, “God, please protect my baby” cry.

There’s something cathartic about weeping. I will let myself at the proper time because I know I will because I know me and I am a mama and I love that boy with every bit of my breath and will fight for him for everything that is in the deepest parts of my soul.

And I know God is listening and will put those tears in a bottle and hold them and hold me and most of all hold Joshua.

So, how am I?

I’m good.

Maybe.

I honestly don’t know.

I’m busy and distracted and putting off the thinking too much. I’m Scarlett O’ Hara and will think about that tomorrow.

I’m grateful as I hear him in the other room making his noises and knowing that when I walk in to check on him, he will smile at me and I will tell him how much I love his face and he will pull it to mine.

And then I may not be okay.

But he will be, and that is all I need.

Paradox

Sometimes the very thing you never thought you wanted becomes the very thing you would die for.

Sometimes the dying gets real – putting to death pride, offense, ignorance, whether it’s within ourselves or in those around us.

I never thought I would have a child with Down syndrome. The concept was foreign to me as I would soon find is to so many. No one thinks “it” will happen to them.

I wanted no part of it.

At one time, I would have been one of those shouting, “Hallelujah,” when a diagnosis of Down syndrome was negative.

And I would have said, “I’m sorry,” when a parent got a diagnosis.

I would have continued to say, “I don’t care if it’s a boy or girl – as long as it’s healthy.”

Maybe I would have inadvertently and ignorantly used the R-word.

I would have, until I knew better.

But my most gracious God gave my husband and me a gift, wrapped in a slightly different package. Opening this gift opened up a whole new world.

It gave my other children the gift of compassion and fierce love along with the courage to defend and be proud of him and love those like him.

In life, the paths we anticipate to travel change in a moment and our journey changes for a lifetime.

A single chromosome.

Something too small to be seen with the naked eye, yet displays itself for the world to see.

Today, that world celebrates that little something extra.

But many still fear Down syndrome. For many it is the enemy. Many wish it away and even fight to eliminate it by eliminating those with it before they even have a chance to be born.

It’s not the desired outcome.

The irony is that the undesirable are often the most loving and become the most loved.

Today as I scroll through my Facebook feed I see the beautiful faces of those being celebrated and read words of those who celebrate them. Famous people and not-so-famous people alike honoring those they love.

Down syndrome in my world isn’t uncommon. I live with it, around it, through it. It envelopes and surrounds. I am always aware and never preoccupied. It is never far from my thoughts and yet it is never on my mind.

An extra chromosome. Minuscule yet enormous.

An enigma, this Down syndrome.

Such a part of him, but not who he is.

Yet he is all he needs to be.

Alternate Reality

Trudging through social media, I am reminded time and again of the old adage about opinions and how everyone has one. For the shy and the outspoken, Facebook and the like give all who wish to climb upon it a platform- a level opportunity to express one’s opinion – and I find that opinions are as widely varied as the subject matter.

I also find that sometimes conversations are needed. It was evident as I scrolled through my Facebook news feed last Wednesday morning.

A&E premiered Born This Way, a reality show featuring young adults with Down syndrome. I anticipated its showing; I consider myself as a special-needs advocate, so I support anything that promotes awareness.

As I watch shows or movies, or read novels featuring those with special-needs, I feel this on-edge anxiousness, waiting for some derogatory comment or inaccurate statement. In conversations over the years, I have learned to wait for something hurtful to be said.

I believed Born this Way would portray Down syndrome in a positive light, so I went in with no trepidation. I knew my friends within the DS community would be talking about it but I was not prepared for the discussions that would follow nor did I think my own questions would become a catalyst for such conversations.

Fellow parents of children with Down syndrome asked if the show was truly representative. Opinions varied, naturally. Posts and comments from moms whose children are more like my Josh were not being able to watch because they said their children will never to be like these young people.

Others with younger children were encouraged. They felt their children could grow to be like these young people and nothing could stop them from reaching their full potential.

Small white boxes held very different words. Hopeful parents lovingly compared their children’s progress and accomplishments, thinking optimistically about their future. Others anguished over multiple diagnoses, things their children still haven’t done and might not ever.

My own Facebook post initiated a discussion between moms that have been on my journey with me since Josh was a baby. We met at our local Down syndrome association and have remained friends. And the opinions of the show were as varied as our children’s abilities, but not necessarily because of them.

I remember back to Josh’s diagnosis. I craved encouragement. I sought out support. I wanted others to know that Down syndrome was not the end of the world. I even worked on a pamphlet of information for new parents that presented Down syndrome in a more positive light.

I too thought nothing would limit him. With intervention and therapy, nothing would be out of our realm of possibility for him to reach his full potential.

When I read about the show, someone commented that it should be shown an OB offices when a Down syndrome diagnosis is given.

Maybe.

Or- maybe not?

Many times the lines become blurred between expectation and reality. Sometimes those lines are so distinct and bold that reality is a slap in the face. Our own reality can be far from the reality on TV and certainly from “reality TV”. Even in the Down syndrome community.

Last year I wrote a blog post called “A Different Kind of Wonderful” and it was shared on another blog, title rewritten as “A Different Kind of Beautiful”.

However, my original idea was actually, “A Different Kind of Down Syndrome.” But when I mentioned that term in a comment, a fellow mother of a child with DS told me this was divisive.

So I changed it. Divisive is the last thing I would ever want to be within the community that needs to be bound together in order to support each other and advocate for our children.

But I am finding that there is division.

A friend expressed that she is afraid to tell of her son’s accomplishments. She finds herself apologizing that her child is doing well when others struggle so greatly.

There are moms like me whose children function at a much lower level and have additional diagnoses. We feel hurt and cheated that our kids “aren’t there “and may never be.

The young people on Born This Way are all – pardon the term, because I know many don’t care for it – high-functioning. But even the father of the young man with Mosaic Down syndrome himself said his son was higher-functioning.

And as I watched, I mentally pictured a collective eye-roll among many of my friends who can’t relate. I confess, I’ve rolled my eyes. I’ve thought, “If he just had Down syndrome,” or” If only he could talk.”

My heart sank as I read comments of friends and their friends on Facebook Wednesday morning. Many cried as they watched. Others won’t watch because they knew it would be too painful.

I know that pain. I quit attending Down syndrome association meetings and Buddy Walks after Josh’s ability to participate in the activities ceased. As autism became part of our reality, watching his peers pass him by developmentally sent me into a pit that took me years to climb out of.

Some days I still claw my way up from that dark place where I could only see through disability-colored lenses. The place where I didn’t think other moms “got it” because their kids could talk and sing in circle time and went to the bathroom and held a pencil and wrote and drew and read books and sat still at a table without turning it over.

After all, their kid had “just Down syndrome.”

I still get the cheated feeling.

Yesterday, my youngest son was in a Christmas program at our church. Before I had children, I used to dream of my kids being in precious pageants and watching them play on sports teams and dancing on a stage.

I’ve gotten to watch three.

But not Joshua. Never him on the church platform. Never him singing, filing in with the others and me seeing his face on the big screen as the camera pans to each child.

While some children with Down syndrome can, Josh cannot.

I know what it’s like to be smile with joy for my other children through tears about another.

I felt their pain and anger – anger about a show that is to represent Down syndrome, yet seems to only highlight the brightest and the best. Resenting the fact it doesn’t accurately paint the broader and wider picture of what Down syndrome looks like in many lives.

But I have to say I did not feel that pain or anger as I watched. I don’t know if I somehow detached myself or if it’s just where I am in my own in my journey.

Many days have been spent with me on my face before my God and Him showing me that my path is my own and not anyone else’s.

And that He chose my son for me.

As I quit comparing him to others, and only to him, was I able to see him for whom he is and he is not the sum of his limitations, nor his accomplishments.

In turn, it has made me be more open to those of all abilities and simple celebrate people. I write and tell our story because I want people to know that while having a child with special-needs is life-altering, it is not a tragedy.

Will this show help change the perception of Down syndrome? Can it accurately do so if it doesn’t represent the community as a whole? Do we as parents want the most positive or the most realistic picture presented of living with DS?

These are questions I am not sure how to answer, because if I’m honest, my feelings are fickle and can change at a whim. I don’t always know what I feel about Josh’s disability. Some days it’s no big deal. Other days it is all-consuming.

I just know what I feel about him. And that absolutely nothing will change the depth of love I have for that precious soul.

Will I watch tomorrow night? Most likely. Simply because I want to and because I can now. I may not have been able to before. And that would have been okay.

A few tears may fall from my eyes for the young woman who cannot bear to hear the words “Down syndrome” because it makes her feel uncomfortable. Or be angry toward her mother because for taking her 20 years to accept her.

I may laugh because some are witty and I may even have to shoo my youngest out of the room if they begin talking about more adult subject manner.

I may cry because certain days it hits me harder and just because it didn’t last week doesn’t mean it won’t.

Stay tuned…

Invisible

I really don’t have time to write today. But it’s one of the days that if I don’t, I may explode, the pieces of me, of my brokenness scattered for all to see.

And though writing is like breathing and sometimes I just have to, I hesitate to be real. To write real.

So I hold my breath. Because I never want to invite my friends to a pity-party with me as guest of honor sitting on my pity-pot like the queen of I’ve-Got-It-Bad-Land, sobbing as my tiara gets ripped of my head from my steroid-raging, non-verbal child while my subjects scurry to get towels to wipe the plethora of mess I’m privileged to clean numerous times daily.

Privileged? I changed that three times before I actually left it because it kept coming back and I could not shake it no matter how I tried. So, I must be. God has given me this life and I am to be thankful in all things. Not for all things, but in them.

And while being a wife and mother is my heart’s desire, some days, I sense that it’s not enough.

As a young woman, I felt that need would be satisfied with a career. As I’ve gotten older and dedicated my life to the Lord, I admit I can envy those in ministry, those preaching inspiring messages and leading magnificent Bible studies. I want to tell my story on a stage, be given a platform for what God has called me to do through speaking and writing. I want to go on mission’s trips and even envying my own children who can and the fact they have their whole lives ahead to serve God. I wasted so much time with foolishness.

Yet I know comparison produces nothing and I must walk my walk and do what I am called to do right now.

But sometimes, my legs get cramped, my feet become calloused and my body weary and sore. My arms bear the physical marks of a frustrated and ill child.

I cry to God, “Do you see this??”

“Do you see what I am doing?”

“Do you see me?”

No one sees.

I am invisible.

My other children bear the brunt and carry my hurt. It’s unfair to them, but I know no way around it.

I looked at my oldest son as he helped me one day. I just looked at him and said, “It’s a different life,” and he nodded. He often carries a load I feel unfair but am so thankful for his heart that is so soft, yet must be so burdened. But he never complains.

But I do at times. I complain when I shouldn’t because others are facing worse. I complain that others complain about things that seem insignificant.

I am a hypocrite when I complain. I have much to be grateful for and the greatest at this very moment is that God’s mercies are new every day.

Every minute.

When I am at the end of my rope, He grabs the other end and pulls me to Him.

He wipes my face and bottles my tears. He does not judge me for them. He knows my heart and feels my hurt and sees my thankfulness even as I shake my fist at Him.

And He sees me.

To the mommy of a new baby with Down syndrome…

Dear Mommy,

I don’t know you. But I know you just found out your baby has Down syndrome.

I don’t know if, while gazing into your newborn’s almond-shaped eyes, you were told your precious baby has an extra chromosome.

I don’t know if you are still carrying your blessing beneath your heart and are waiting to hold the wee bundle that isn’t exactly going to be born the way you expected.

I don’t know you.

But I am you. I am you almost 14 years ago as I watched my tiny son’s face emerge on ultrasound while the doctor echoed words that wrecked me.

Feeling utterly helpless and shattered, all I heard was a diagnosis of doom and all I felt was fear. Anger. Betrayal by the very God Who I prayed to for it not to be. Inconsolable and overwhelmed.

I have a confession – I still feel some of these at times- when the days drag long, the challenges loom large, and the future feels uncertain.

But most times, I am overwhelmed with gratitude instead – for being given for such a gift, to be entrusted with such a beautiful soul whose love knows no conditions and whose smile makes my heart nearly burst.

I don’t know you, but like you, have been entrusted with one who is fearfully and wonderfully made, exquisite and unique.

I don’t know you. But I know you will love your child with a fierceness you never thought possible. I know you will be a mighty momma who fights and you will be able to do this.

I don’t know you, but we are connected, linked by an extra chromosome and placed on a path that only those who walk it understand. Don’t rush, because the pace may be a little slower and at times and it may be frustrating. But it makes us stop and linger and enjoy the moments that slip like sand through our fingers far too fast.

Your journey waits for you to embrace.

And though I don’t know you, I do. And you will walk it with grace and love.

And I will walk it with you.

Love,

Another Mommy

On Mother’s Day

Mother’s Day. As a young woman, even before I meeting my husband, I longed for the day I’d become a mother. I never thought much beyond that-then imginary first child. My family plan was planned more by God than us.

I never considered homeschooling and and not going back to work once my children reached elementary school age. I certainly never expected to have been given the gift of a special-needs child. Life turns unexpected and sometimes hard and often bittersweet.

I miss my momma. That early, middle-of-the-night-morning as she began her forever in Heaven, I wiped my tear and sleep-filled eyes and thought, “What am I going to do on Mother’s Day?”

Not her birthday, not my birthday, not even her funeral, but Mother’s Day.

This day. I confess, I love waking up as I did this morning to gifts waiting to be opened.

I was even given an early gift late last night after 14 hours of baking for my son’s mission’s trip bake sale today. A dress to wear to church this morning. Because my daughter knows I don’t buy much for myself. And also because I’m sure she likes and wants to wear it too. And I love that.

I love her. She is my fiery soul unleashing her inward and outward beauty growing into her own woman as she shares her love of Jesus and passion for people with the world. She is not only my daughter, but my friend. My firstborn. As I held her the first time, I thought, “This must be what Heaven feels like.”

And my boys. I adore my boys. My oldest son, my quiet man-child finding his voice. He embodies Proverbs 17:28, “A truly wise person uses few words; a person with understanding is even-tempered.” His heart is of a servant and a protector. He is much like Jesus.

My special one. My own heart died a bit when I found out his was sick and he would not be what I expected. I discovered that all gifts do not have to come in the usual packaging to be exquisite and journeys begin with a single step. I may be on this one for my lifetime, and I welcome it. He has made me love with a fierceness I didn’t know I possessed and has given me a ministry without ever speaking a word.

My baby. He’d hate being called that as he will soon enter the year of “double-digits”. My child of trust – the one God spoke to me so clearly about. He is his daddy. He gives me a glimpse into what must have been my husband as a boy. He is all boy, all the time and thinks he’s a teenager too, yet still comes to me to sneak his hand up my arm – my “cold arm” as he called it when he was little and ask for a hug. I am so glad I listened to God, and not to man.

As much as I love this day, it makes me weepy. Not just because I miss my own momma, but for those childless mothers. The ones who want so desperately to be mothers. Newly married, I sat in church and watched my friend stroke her toddler’s hair as his head lay in her lap. I desired that so much I could taste it.

And I have no idea why God blessed me so easily with children when I have friends who want them and can’t or have had to go to great lengths to have them.

I think this day must be agonizing for so many. Especially in a world where children are idolized and parenthood seems to make one complete. I am guilty of sharing too many “mom” stories and getting so caught up in my busy-mom everyday, that I forget.

I think of the childless mother. Those who long for children, yet arms remain empty.

The grieving mother. Those without their children this first Mother’s Day. And those who have had to endure this day year after year.

For many, today will take every effort to step foot out of bed and breathe. Many will walk the halls of churches with plastered-on smiles covering a hollowed-out heart. I pray I am sensitive to those who may be hurting this day and am a source of grace and healing.

A mother is an influencer. A mother is an encourager. A mother is a mentor. A mother is a teacher. A mother is a friend.

For all mothers. Those with children and those without.

Happy Mother’s Day.

Some Days

Yesterday was a particularly difficult day- special needs-wise. I try not to “vent” or complain too much on Facebook, but there were several times I was tempted to jump on and let the world know and possibly get a little sympathy.

Because some days, I hate autism.

Some days, I scream it out loud.

Ironically, yesterday I happened upon an old TV show, the doctor adamant that “autistics” were intelligent and teachable and not “retarded”.

I turned it off, because it pained me to watch – not just because of the archaic terminology – but wondering about the fact my son has both cognitive delays from Down syndrome and aggressive behaviors I’ve always blamed on autism. Where in the world does that leave us?

Some days I am confused.

Some days I think too much.

Some days I wish he didn’t have both.

Some days I simply don’t know what to do.

Some days I let him get away with too much, using the excuse that he doesn’t understand, because I often don’t know what he does and doesn’t.

Some days I resort to letting him have his way in order to save myself from physical harm.

Some days I sometimes get weary.

Some days I’m just not fast enough to get away and “block” him.

Some days I just don’t feel like doing it all.

Some days I want to scream, “This is so hard!!!” but I don’t want to. Because then all those who think a child like mine shouldn’t be born, or isn’t as worthy as typical children, might have a reason to believe it.

Some days I feel horribly guilty for complaining, because I see on my news feed a little darling with Down syndrome whose parents must say goodbye because of heart defect like my son’s and am so grateful for him.

Some days I don’t want to let anyone know about those ugly parts because he is such a good-natured and loving boy.

Most days.

I have been blessed with and entrusted with much.

Some days I must make myself count all joy and be thankful while in the trenches.

My trenches include teenagers.

Some days they are hard.

Some days, I miss baby and toddler-hood when hurts were little like their squishy bodies I that I could scoop up and hug the hurt away.

And as rocky as these years can be, no one suggests we don’t have children because they one day will be hormonal, emotional and both independent and relying on you all at the same time.

Some days, homeschooling an active nine year-old boy frustrates me into a mom-fit because he would rather do a zillion other things than sit and do math.

But no one suggested I abort him because he was perfect and healthy. Not like my baby seen as damaged and defective by those who will never know him.

Some days, this angers me.

Most days.

Every single day.

Some days, I have to cry out to God for physical and emotional strength. Out loud.

Some days are harder than others.

Just like for everyone.

But then, last night…

As he laid in bed, ready for sleep, that precious little soul who had angered me so earlier pulled my head to his and would not let go.

And all the hard of the day left.

I remembered it no more. Like our Father who remembers it no more when we come as little children, even like those who can’t speak and simply love Him and ask for forgiveness in the only way we know how.

Some days I would live over a thousand times for that one moment.

Some days I need to tell the world that no matter the cost, the price is worth it.

Like today…

Christmas Lights

Yesterday lights on my tree went out. We thought a plug came loose – although we all know this could never happen since my kids and dog are so calm and never throw things or hit the tree. I woke up thinking about how to do this. I may have actually dreamed about it.

Therefore, today, I will take everything off and re-do my tree if necessary. Even though I need to shop and do a zillion other things, the tree is a priority.

Why? Needles will be everywhere and I will be sap-sticky and aggravated. Why I am I slightly obsessed (although after last night, Jerry would argue that the obsession is more than slight) over a tree? After all, it’s just a tree.

Is it because reminds me of Christmases growing up? Is it because for years when Jerry and I had no money to give each other gifts, the tree WAS my gift? Is it all for the kids? Why is it that I, in all my frugalness and practicality, must have my real tree instead of buying an artificial one time and using it every year when that makes so much more sense?

I think the tree feels like home.

A real tree looks uneven and has holes. When the lights are off, the branches look bunched up and the wires show. The ornaments look a little dull.

But when the lights are on, it becomes transformed. The wires fade into the green and the ornaments are illuminated. The imperfections are covered and it draws us to sit and enjoy it. It becomes beautiful and inviting.

Kind of like us. We are real and messy, imperfect and full of holes. When Jesus comes to live in us, we take on His light and become light. We are still imperfect and bunched-up but His light covers us and illuminates through us.

The Light of the World Himself asks us to be Him to the world. His light is inviting. His light is comforting.

His light is home.

Sorry I’m Late…

I used to be an on-time person. Not particularly early, (unlike those who show up annoyingly early before things are ready and we all know who those people are), but at least arriving at the proper hour. However, lately, (no pun intended), I have just been, well – late.

I stay up late, my kids stay up late, sleep late (don’t judge- they are homeschooled and that means we can), my husband works late. And I run late.

I’ve become that friend who gets there last. The one who calls to say, “Sorry, but I’m running a little late…”

I’m even late on the newest technology. We still own VCR’s, we still have one TV that isn’t a flat screen and I just got an iPhone 5. But apparently the 6 is way better. Or so I hear. So please, just let me have my fun and enjoy my thumb sensor unlocky- thingy, panorama pictures and be happy for a little while.

I will say that one thing I don’t do late is sleep. Late, that is. Well, sometimes I don’t sleep either, but I digress.

This year, (every year), I am late decorating for Christmas. At least according to Instagram and Facebook where I see all my friends’ tinseled trees and evergreen-ed mantels.

But I’m working on it. Last night was the Neely-Annual-Picking-Out-the-Tree-and-Family-Dinner-Out. We got started late. Remember the hard-working husband who works late?

After proper tree-stand adjusting, branch-cutting and the boy’s box-tossing- from -attic antics (if any of my Christmas ornaments are broken….), it was late. “I’m sorry kids, but 11:30 pm is a little too late to start decorating the tree…” Even I have to draw the line.

So Josh slept late. And was late for school. And taking him late means homeschool starts late. Again.

Daddy used to say, “I’m a day late and a dollar short,” but I never remember him being either.

Unlike me. And I can also excuse my tardiness with “Better late than never.” That is if I’m going to start quoting clichés.

Yet, somehow in the business of life, it all gets done. At least the important things.

So the tree will wait until tonight after church. Although, I really could do it today. I could squeeze it in while my girl is at work, between school and all the other stuff I have to do. I could even decorate it just the way I wanted – all symmetrical and color-coordinated. Not that it would be wrong…

But then it wouldn’t be “our” tree. And the point of it all is to do it together.

Isn’t it about the journey rather than the destination? Another cliché. I must stop.

So here is an original:

Isn’t the doing it better than it just getting done?

Here is a peek at my naked tree and mantle scattered with things just sort of left there and tossed upon it. Definitely not my usual decked-out mantle decor.

But I kind of like it. It’s simple and a bit rustic. I may decide to keep it.

Some things we come upon by accident. Sometimes they come late.

I’m thinking that late doesn’t always mean after the proper time.

Just maybe, sometimes late is the perfect time.

Waiting for “It”

A few months ago, a friend and I were discussing a comment made by Michelle Duggar on her show 19 Kids and Counting. Mrs. Duggar was consulting her doctor about having more children at her age and as they discussed the risks, she remarked that she has been “dodging these odds” for over a decade already.

My friend said that as she watched the show, she waited for “It”.

I recently read a blog post about a mommy and a surprise pregnancy- at the “high-risk” age.

“It”.

I remember a conversation with a friend who didn’t want to have any more children after 35, because, “you know-the ‘risks.”

“Oh, you mean like having a child with Down syndrome?” I asked as I bounced my little “risk” on my hip.

“It. Again.

Children with Down syndrome are born to mothers of all ages. In fact, more babies with Down syndrome are born to women under 35 simply because more women in that age group give birth.

According to the CDC, one in 700 babies is born with Down syndrome.

That number is pretty large actually considering the number of babies born daily.

And for those of us who didn’t “dodge the odds” – however small or large those odds happened to be…

We wait for “It”.

“It” looms large and hangs in the air.

“It” may be on a TV show, a movie, in an article, a blog or during a conversation.

I find myself holding my breath until “It” comes.

“When the doctors told me my daughter could have Down syndrome because of my age, he put me in a room full of these pictures. So I turned my chair the other way. I confessed she would not have “It” and she didn’t. And she is SO smart.” This from a dear sister in Christ, who finally told me because she thought I was ready to hear it.

No, not really ready.

One friend, on several occasions, a friend revealed to me that she would have aborted her baby if the test came back positive for Down syndrome.

Confession is good for the soul they say, but not always to the one hearing.

I often shake inside as the conversation unfolds. That building and escalating to the peak of that point when I know “It” is coming … and I often struggle with what to say.

“I wonder how many babies are aborted because the doctors were wrong and they were perfectly fine.”

My mind hears that to aborting a baby without “It” would be worse.

And my heart hears an underlying insinuation that people without “It” are more valuable.

I often weep that people find my son and those like him so undesirable and worth dodging.

Even the website for the CDC classifies “It” under birth defect. I shudder as the URL pops on my page.

According to the CDC, my son has a defect. Why after twelve years of his life is this still so fresh?

Is it because I never even had “It” on my radar? Is it the attitude that “It” is the undesired result?

”It” is not just Down syndrome, but any disability. The attitude is much the same. So I nod and smile as people discuss the baby who was supposed to have this and that condition and is now the smartest, the most athletic, and the-whatever-opposite- of-what-they-were-told, – all the while I am screaming inside.

“Don’t you see?!?! There’s more to him! He is not “It”! I love him just as much as my children who don’t have “It”!

Why can’t the world see? Why did I never see before “It” entered my life?

I am saddened that a godly woman, known for her desire to have as many children God allows, missed an opportunity to tell the world she would welcome a child with Down syndrome.

Yet, I do believe Mrs. Duggar’s comment was not meant to be hurtful.

She and her family are obviously pro-life, making their beliefs very public. Recently, her daughter Jessa was blasted by the media for comparing abortion to the Holocaust. She specifically referred to Down syndrome:

“Millions of innocents denied the most basic and fundamental of all rights–their right to life….The belief that some human beings are “not fit to live.” So they’re murdered. Slaughtered. Kids with Down syndrome or other disabilities. The sickly. The elderly.” And she goes on to say all life is precious.

I realize our words do not always line up with our intent; I believe Mrs. Duggar was trying to prove a point to those who think she may not need to “risk” having another child.

Unfortunately, “It” becomes the reason.

I am, however, horribly offended that a mother would look at a child with Down syndrome and tell her mother, “God would never do that to me.”

What is it about “It” that makes people so brazen?

I hear countless stories from my fellow special-needs parents of rude remarks, opinions, and unsolicited advice.

What makes “It” so horrible and frightful that doctors suggest ending an innocent baby’s life?

Why does not having “It” prompt cheers of Hallelujahs and testimonies of God’s goodness?

Did God not show Himself faithful to me? What about those, like me, who prayed for “It” not to be, but is?

I know now that “It” is not a failure, lack of faith or unanswered prayer as I once thought.

On this side of “It”, I see the delicate beauty of those who look a little different but love unabashedly.

I treasure friendships formed by bonds of “It” that I otherwise may have never known.

On this side, I cling to His promises, praising Him for each new success, no matter how seemingly small.

I am struck by the enormity of a tiny word as I look back to one of the most difficult times of my life – when I awaited the test results for “It”.

The fear of the unknown and pride of the unfathomable plunged me into a chasm of anguish when “It” was confirmed and would soon be my reality.

Then I saw the face of “It”…

And love overwhelmed my soul while gratitude flooded my eyes for the exquisite creation from my God Who trusted me with such a gift.

A good and perfect gift just the same as if he were born without “It”.

“It” looks with longing almond eyes and smiles with hope.

“It” speaks with no words, while I beg God to quench the suffocating silence.

But challenges and differences don’t make us less, but make us stronger because through Him, the weak are strong.

The strongest I’ve known are weak in the eyes of the world.

If only my mere, fallible words could express my mama’s heart and tell of the love that is so deep and saturating to the point of that it practically hurts.

“It” will always be a part of my son’s life. Of my life.

I’ve heard so often when speaking of “It”, “Doctors are not always right. They don’t know everything. ”

Misdiagnoses do occur. But in our case, the diagnosis was correct.

But the doctor didn’t know everything.

Because no doctor could predict how much I would love and protect and guard my precious boy with a fierceness I didn’t know I possessed.

The doctor, who during his bleak announcement of doom and who could not see past “It”, would never see the exquisite and unique little soul that is my son. He didn’t know that child I was carrying would change hearts and minds.

No one prepared me for what “It” would mean for our lives.

God did.

I wonder if He waits for “It”?