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.

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God did.

I wonder if He waits for “It”?

 

 

 

 

 

 

 

 

 

 

Called

I just came across an article in a magazine about raising a disabled child.  While I am thoroughly immersed in the special-needs world, I am drawn to articles in publications of a more typical nature.

Maybe I’m drawn because I am so aware of how the normal in this world often forgets about those deemed different.

The article caught my eye specifically as it highlighted a child with the same diagnosis as a close friend of mine’s son.  While rarer than Down syndrome or autism, it often “looks “similar. And yet still different.

Like disability itself.

The scope of disability is broad.  The word scope itself is contradictory to me, because it means “extent”, but my mind sees a telescope. Narrow, but enabling us to see an expansive view of things far away and out of our normal field of vision.

Disability is often like this. For those of us who live it daily, whether physical, intellectual or the many and varied combinations of both, our world can seem very small and closed as we operate with tunnel-vision.

My own experiences have often left me feeling alone and isolated.

Left wondering if anyone except me and those who live as I do really care about the seemingly small, yet realistically broad population affected by disability.

Social activities, clubs, groups and even churches are geared to the typically-developed.  While many strides have been made to accommodate the disabled, there remains the unspoken sense that things just don’t apply my special-needs child.

I parent him differently.  Time and again I have heard to treat him like my others and  have the same expectations, but the reality is – well, unrealistic.

How can I explain right and wrong to a child who often does not understand a word I say?

And if he does, how do I know he does? He can’t tell me. I can only assume and hope.

I never really know how much he knows. Only by extreme repetition and extensive practice is a task accomplished, but I really never know if he gets it, or if it is just rote habit.

The physical, mental and emotional exhaustion can be overwhelming.  For me, it’s the constant and active stage of pre-talking toddlerhood, encased in an 80-pound 12-year old. There is no indication or prediction of when or even if the next stage will come.

Throw in puberty changes and up goes the ante.

And that’s just the now.  The stress of planning for the future overwhelms me and while I lay it before the Lord, I feel irresponsible if I simply don’t worry.

Recently, my son accidentally got locked in our van. Fortunately, it was running with the AC on. But as I motioned repeatedly for him to unlock the door: “Come on, right here,” as I banged on the place the lock would so simply slide, he just looked at me and smiled.

I ordered a tag for his shoe with a safety alert blaring “I have autism and am non-verbal. “ Because running or bolting is a concern.

My typically-developed toddler once ran from me in a parking lot and after discipline never did again.

But again-it’s different.

I long to hear: “I love you Mommy”.  And add cute sayings for my list. My other children have many.

But one has only a name.

I know that words are not always necessary.

But the want in me aches to hear a spoken phrase.

And my self-centeredness makes me ashamed.

I read a comment recently from a mother who lost her baby who would have been severely disabled if he had lived. She said people told her it was for the best.

And she said she would see parents of disabled children and think how lucky they are.

I am blessed beyond measure to be his mother. I am privileged and unworthy.

My reality is the constant check of wanting more for my son and feeling guilty for doing so.

The constant element that permeates my life is only occasionally smattered in a magazine that talks of usual life. My constant different mixed with my everyday normal calling of wife and mother.

It’s where my callings meet –  of those I chose and those He chose.

A ministry given by the same grace by which He sustains me in my weakness.

He carries me through what He’s called me to do.

 “He who calls you is faithful, who also will do it.”

I often hear, “I don’t know how you do it.”  I do not think any of us really know how we do it, except that we just do because we have to.  And I don’t know how those fighting harder battles do it.

But we do because we are called.  Chosen.

Each of us is chosen, by Him, for Him, to do His work and share His heart.

And whether the world ever fully accepts or includes or even mentions those He has chosen me to speak for, I will not stop.

Because He has called me.

Because He is faithful.

Because He will do it.

What is your calling?

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Touched

 

My girl has been on three mission’s trips. One of my favorite times is when she gets home, after she has slept off the jet lag and weary fog of travel has lifted enough to sit and have her “tell me all about it.”

The last was Honduras.  Something about this place tugs at the hearts of those who visit and beckons back. My brother goes often with his church and mine sends various groups to minister frequently. Missionary friends living there send updates and pictures of a place I have only heard of.

Maybe this place I have never been draws me so because I know of a hospital and an orphanage there.  Places that house the vulnerable and hurting. Places I haven’t been yet the kind of places where my heart lives.

My daughter and her team went to do unto Jesus as they visited the sick, the lonely, the estranged and the forgotten.

They prayed over children in hospitals beds where heat hung thick from no air-conditioning and for whom modern medical care had not yet made its way.

The next day the team went to an orphanage to love those who, for whatever reason, are left parentless.

I can’t help but wonder the reason the children who reside in an upstairs room were left alone.

The special-needs room.

A place for the most innocent, forsaken, and isolated.  I wonder who looked at their “imperfect” child and said no.

“Pure and undefiled religion before God and the Father is this: to visit orphans and widows in their trouble…”

My daughter went to up to one of the rooms, a little room within the larger special needs room where had gone yet.

In a crib, lying alone and shaking, a little boy came with a warning:  “He’s abusive.”

She didn’t care.

And as she touched the trembling boy who was never touched, he stiffened and bristled.

As the power of her gentle touch went through him, he felt the warmth of something so primal, yet rarely experienced except for diaper changes and basic care.

Then he relaxed.   As she told me this story, I pictured this fragile little boy breathing out and releasing the bondage of a life spent in a crib, unheld and lonesome – if only for a moment.

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Photo credit: Joy Dodd

 

She went from child to child and touched the untouchable.

I think of Jesus touching the leper. Unafraid and only desiring to heal.

Compassion stronger than comfort.

In reaching out to a little boy with Down syndrome who was known to scratch and bite, she stood unwavering- maybe because God equipped her through her brother who often does the same.

And even as he spit in her face, she remained unmoved.  Unshaken.

Because loving the different and misunderstood is messy.

“Hurting people hurt people” doesn’t just those who hurl insults or hit their spouses. Those with deep, inexpressible hurt longing to speak only to utter grunts often lash out in frustration.

So they are put into isolation.

The young men on the team brought down the bigger children who normally couldn’t because the “Tia’s” or aunts couldn’t lift them to watch skits, listen to teaching and just be with the other children.

Included and no longer isolated.

Young men and women held children for hours offering the comfort, power and promise of touch. Still I wonder who was touched more.

“If only I may touch His garment, I shall be made well.”

Healing power through a simple act we take for granted. Yet it can be everything to those who exist without it. Being the vessel through which mercy flows and rests on one small child.

And though my own ministry within my home- the very one who prepared my daughter- keeps me here, I can touch His garment through those who go.

And as difficult as it is for me in the natural to allow my own children to travel thousands of miles away, it is my sacrifice as they become Jesus to the neglected and lost.

“For I was hungry, and you fed me. I was thirsty, and you gave me a drink. I was a stranger, and you invited me into your home. I was naked, and you gave me clothing. I was sick, and you cared for me. I was in prison, and you visited me.”

“And the King will reply to them, ‘Truly I tell you, in so far as you did it for one of the least [in the estimation of men] of these My brethren, you did it for Me.’ ”

The least in the estimation of men.  I can’t help think of my own son and those like him who society has deemed as “least”.

But to do for them is to do to Jesus Himself.

They are not least in His estimation.

The Message bible’s translation reads: “Then the King will say, ‘I’m telling the solemn truth: Whenever you did one of these things to someone overlooked or ignored, that was me—you did it to me.’ “

The overlooked and ignored.

The upstairs room.

The children who couldn’t come down.

The ones rarely held.

Done… unto Him.

My deepest desire is to do unto the One Who did it all for me. Doing as Him and being transformed into His likeness- heart by heart of those we touch.

Whether a nation far away, the grocery store, the workplace, the doctor’s office, a friend’s kitchen, a child’s bedroom, the walls called home –

Jesus is waiting.

 

Finding Treasure

My 16 year-old daughter boarded a plane (well, actually two) for Honduras today to go on her third mission’s trip.

In preparation for the trip, her youth mission team went on a weekend trip for team-building and visited a ministry in Atlanta called Bethel (an extension of Bethel in Redding, California).

Destination known only to parents and leaders, the team loaded a bus to the great the unknown. First arriving in Stone Mountain, they climbed the mountain and walked sky-ropes, conquering fears and learning to work as a team.

Later they learned of spiritual gifts and demonstrating God’s love to those around them. They learn to listen to His voice.

Then, these young people put words into action by “Treasure Hunting”.  Treasure, by definition, is any thing or person greatly-valued or highly-prized.

The group gathers and prays for The Lord to reveal specific things then they ask to people if they can pray for them. Throwing off inhibitions and facing fear of rejection to fulfill God’s call.

Often they are turned down. Some might think they are those crazy Jesus-freaky, weird religious people.

But for those of us who know Him, Jesus Freak is kind of complementary.  And oh, how I desire for people to understand that following Jesus is not religion. It’s so much more than rules and rituals. It’s showing His love.

When my daughter prayed she felt an impression of bright yellow but had no idea what this meant. A person in a yellow shirt?  McDonald’s ? (Golden arches. I love teenagers and how they think.)

She was turned down several times. She became discouraged.

But then…

And elderly couple accepted her offer and the group prayed for this retired minister and his wife who was losing her memory.

And at the end, the gentleman pulled my daughter aside and asked her to keep his grandson in her prayers.

His grandson is 17 and doesn’t speak. He has autism.

And there it was.  The open door. The not growing weary in well-doing.

With tears, she told this grandfather about her 12 year-old brother who didn’t speak and had autism and Down syndrome.

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Then her friend told her to look down. As she stood on freshly-painted yellow lines at the entrance of Walmart, Jesus showed up in young people willing to be the hands and feet.

The group prayed for the man’s grandson.

Then, they began to pray and speak life over my son. My daughter’s little brother.

In a generation where death is spoken and mocking prevails, the compassion of the Father expressed through the sons and daughters brought hope.

What if my daughter had given up? What if she didn’t obey and told God it was just too hard and she was tired of rejection?

What if she worried more of what people thought than of what God thought?

“I have no greater joy than to hear that my children walk in truth.”

I’ve said of my son, we must love him than what others think of him.

We must love God more than what others think of us.

And obey him when it doesn’t seem to be “happening” for us.

I’ve been in that place lately, wondering if what I care so much about even matters. Growing weary in my well-doing and wondering is this of importance to anyone and most importantly- to the Lord.

How often are we so close and give up? How many don’t let Him in and miss it.

God loves those most weak and vulnerable. I must press on. I must not stop speaking for those who cannot speak for themselves.

“And let us not grow weary while doing good, for in due season we shall reap if we do not lose heart.”

For they are highly- prized. His treasure.

I must not lose heart for those who His heart loves.

I often refer to my children as my treasures. His children are His treasures. Greatly-valued and highly prized.

Find it.

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Embarrassed

It happened today.

A slight blush shone through his little freckled cheeks and small tears hung in his blue eyes. His head hung a little low, and I knew what was coming.

“Mom, those kids were staring.”

His face couldn’t hide the mixture of embarrassment and self- ashamedness for being embarrassed by his older brother.

This kind of embarrassment only comes with having a stare-worthy brother.

As we parked for our end-of the-year celebratory lunch for Josh, I felt a twinge of angst. My eight-year old asked if we were taking the food home.

“Don’t you want to eat inside? What do you want to do? “I prodded and probed for his true “why” for asking and though he said it was fine to go in, but the truth was the proverbial elephant in the room.

The unspoken. The un-admittable.

Embarrassment.  And shame for being embarrassed.

According to Wikipedia:

Embarrassment is an emotional state of intense discomfort with oneself, experienced upon having a socially unacceptable act or condition witnessed by or revealed to others.

Joshua’s condition is considered socially unacceptable by some.

And though he does not know it, those who love him do.

His brother doesn’t want to feel this way.

But he’s eight. And things are a big deal at eight.

So as I tried to explain that they may just be curious, and even if they weren’t  we need to stand up for Josh and not worry about what others think, and people just don’t know what our lives are like and all the blah, blah, blah…

In my ramblings, I struggled between anger at those boys who were staring and my boy embarrassed about it and myself for feeling it sometimes myself.

I will clearly state that we not embarrassed by Joshua. We are not ashamed of him. Embarrassment creeps in rises up when those who do not understand him make us feel like he is less.

I needed to glimpse into my young son’s heart. As my own heart poured out sympathy and shared his pain so intensely, I felt Joshua’s pain unaware. My soul tore for each for different reasons.

“They think he’s weird. And that might mean they think I’m weird.”

“Well, I’m weird,” I said in some lame attempt to somehow make this whole “thing” better.

Then I told him that we needed to love Josh more than what people thought about him.

My oldest son, who often does with Josh what I cannot, had moments before pulled him out of the booth when he didn’t want to leave , put him in his car seat, then took him out of the van when we arrived home.

As we walked in, my soft-spoken and gentle son said to his youngest brother, “You know, I used to feel that way too.”

And I asked, “What changed your mind?”

He simply stated: “What you said.”

I can’t change people’s minds. I can’t know what they are thinking. I don’t know if they are curious or think my son is weird.

I don’t know if they are whispering prayers of thanksgiving that they don’t have a child like mine.

I could say I don’t care.

But I do.  I hate the stares. I hate them for all of us.

I hate that we look at people through our eyes instead of God’s.

And as I told my son in eight-year old language, “God loves all of us the same. God loves Josh as much as he loves you. God loves the homeless man drunk and smelly on the street as much as he loves the man who lives in a mansion.  We should all love each other like that. But unfortunately, people don’t.”

Later, we talked a little more and I asked him if he felt bad for being embarrassed and he said he was. Because he loves his brother.

But he said that people think Josh is stupid and they might think he’s stupid.

“So what can we do about it?” I asked.

I can love my son more than what people think about him.

Is that enough?

And what can we do about it?

 

Out Dancing

“The anniversary of your death comes around every year and you never know it.” -Momma

Written by the finger of God and etched on the minds of those left walking earth until the inevitable happens.

At his kitchen table, one year ago, my Daddy looked up to Heaven and stepped in.

One year ago today, my husband uttered those words etched on my heart, “I’m so, so sorry. Your Daddy…”

One year ago today, my dear friend dropped everything in her busy life to come over and offer her shoulder and her help and her prayers.

One year ago today, I became an orphan in the earthly sense.

But as those unidentified, invisible persons known as “they” say: “Life goes on.”

And it has – at break-neck pace as I run on the treadmill of this extraordinary and abundant life I’ve been graciously given.

The quiet moments are few.

But when they come…

The emptiness of my childhood laid at the house on 395 Lake Circle Drive beckons me. And I know I can never go home again.

Our Saturday trips to the white brick house around the lake I bicycled around so many times in my youth, is no longer mine.

And I grieve.

Yet, there is no time for that. “Life goes on.”

After all, my daddy lived a full life. This is how it was “supposed” to happen.  I didn’t lose a child.  I would never compare as that horrific pain would be too indescribable.

I wouldn’t compare it to a sibling or a young person who had their whole lives ahead. That unfairness wrecks my soul.

My daddy was old. I came into my parent’s life as a “bonus” and I am so grateful and often quite surprised I had them as long as I did.

And I rest knowing where he is.

But it still hurts.  And I find myself apologizing for the sorrow.

The grief is silent and hidden. There is no time to wallow and I feel as if I shouldn’t.

Because he was old, lived a full life and is in Heaven.

My head knows, but my heart isn’t listening.

I am selfish and want more time.

I want my children’s Papaw to see them graduate and get married. I want him to hold my grandchildren.

I want to call my Momma and hear her defend me when I’ve been hurt and hear her sympathy as she asks” Don’t you just get so tired sometimes, darlin’?”

I want to hear Daddy say just one more time “Suits me and I’m hard to please.”

Ironic since he was most easy to please. Even more so as he grew older.

As I watched him struggle in his frail body care for my dying mother, I saw Jesus in my father pouring out his all without complaint.

I miss hearing, “You must have been out dancing,” whenever I missed his call.

And I’d ask him the same if I called and he wasn’t home.

I miss his gentle spirit, quiet manner and funny sayings. I miss a thousand things I could say this very moment.

Yet, I will take the advice of a friend and surround myself in some memories and let myself grieve today because our relationship deserves that time.

And in the midst I will make cupcakes to take for Josh’s birthday and take them to his class.

My earthly life is still overflowing with those entrusted to me and I look to a time of celebration for the anniversary of a new life created in God’s image twelve years ago.

And as our family remembers and celebrates this week among the tears, I pour out my thanksgiving like oil and wipe my tears with His robe for His sacrifice so that my sorrow is but for a moment.

To everything there is a season, and a time to every purpose under the heaven.  A time to weep, and a time to laugh; a time to mourn, and a time to dance.

I look to my Jesus, I remember His death. But then…

Resurrection.

You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy.

Only because of the hope I have.

If I don’t answer it’s because I’m out dancing…

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Bittersweet

Bittersweet: combining sadness and happiness – a simple definition for a very complicated emotion.

This week is bittersweet.

Yesterday was the two-year anniversary of my sweet father-in-law’s passing into eternity. While at church attending a women’s conference, amongst the chatter and music of an after-party celebration, I received a call from my oldest son who in a shaky voice relayed the message “Dad is going to St. Augustine because they think Pop-Daddy is dying!” Stunned, I attempted to gather my scattered and swirling thoughts and told my daughter we had to go and why. As she and I cried,  my sisters in Christ – my friends – surrounded us, offered help and prayed for us.

Bittersweet is the comfort of the saints during times of uncertainty.

Thursday will be one year since my own Daddy started his forevermore in Heaven. One year ago, I went about my normal routine, oblivious to the fact that my sweet father had met His Heavenly Father that very morning.   My husband walked in with tears in his own eyes, gently backed me into a chair, and as he shook his head and repeated, “I’m so sorry, I’m so sorry….”

Bittersweet is the gentleness of the one who knows us best during times of sorrow.

Friday we remember what Jesus did for us on the cross. Two-thousand years ago, the Lord of Heaven came down in flesh and had that flesh torn and broken and beaten beyond recognition and hung naked on a cross to pay a debt I could never pay. He took our sin and sickness so that we may be forgiven and healed and no longer be condemned.

Bittersweet is the sacrifice of death so that we might live.

But Saturday…

Saturday is my precious Joshua’s birthday. As he turns twelve, I am stunned in amazement of all we’ve gone through in such his short time. Children with special needs often live lifetimes very quickly. I see a boy with a mind of a child, yet the body beginning to grow into a man and still wonder why God saw fit to choose me for the honor and sometimes daunting task of being his mother.

Bittersweet is the wondering what might have been while celebrating the what is.

And Sunday…

Resurrection Sunday.  Easter. The third day and the empty tomb. He has risen.  He has conquered the grave and the sting of death. The veil has been torn. A new beginning. An empty cross. Redemption that was bought by the ultimate sacrifice and available to all who choose.  Living water for those who are thirsty.

The bittersweet is now the sweet and the bitterness is gone. Choose this day whom you will serve…

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Aware

Today is Autism Awareness Day.  A day I never thought I’d be writing about, let alone living.

We are aware of autism every day.

While pregnant with Joshua and learning his diagnosis of Down syndrome, I developed a sinus infection induced by crying.   The doctor reassured me, “Down syndrome is the ‘Cadillac of disabilities’. I’d much rather have that than autism.”

Just as I was getting used to my Down-syndrome-may-not-be so-bad life, it reared its head – The Scarlet “A”.

There is no prenatal test. No blood test. Not even a really definitive test.

Not like with Down syndrome in which chromosomes glare black and white declaring disability.

Autism sneaks in and overtakes without warning. I did not see autism coming.

I never knew autism could co-exist with Down syndrome.

“Josh is way too affectionate to have autism. He smiles and hugs and looks me in the eye.”

An unscrupulous thief crept into my life and robbed me of all the possibilities I was told could be for my son with Down syndrome.

My heart broke bit by bit as I listened for newly-babbled new words which had faded into non-existence.

Hard-earned skills exchanged for obsessive and destructive behavior.

Play drifted away and excessive video-watching became the only interest.

The gap between milestones reached by his peers with DS widened and soon the chasm became too obvious to ignore.

I wanted the diagnosis to prove I was not in denial about Josh’s limitations.

A dual-diagnosis brought relief.

Relief that my son was not “just low-functioning”, but had something else “wrong”. That it was not that I had just not done enough.

Because I thought “enough” -enough therapy, enough hard work – all those things I was told would be “enough” – would make this helpless little baby reach his full potential.  After all, that is what we are all told. With the proper resources and opportunity, people with Down syndrome can be contributing members of society.

So I hunkered down and did it all – therapies and specialists, meetings and workshops. I reluctantly put my baby in school at the ripe old age of three and waited. I waited for it and all the experts to make it “work”.

During this time, I had another baby and wondered if this contributed to Josh’s regression. Others seemed to have more time to devote to their special needs child, yet I couldn’t seem to “do it all” with four children under eight.

Accolades to the moms whose children did so well cut me to the core, as I couldn’t keep up.

Slowly, the little boy with Down syndrome drifted into a little boy with no words and upsetting meltdowns, overturning tables and biting classmates.

My precious little boy once praised and adored by his teachers became a problem.

My quest to find answers was met with opposition and seeming futility until at last it came.

The diagnosis of autism simultaneously comforted and terrified me.

My dreams shattered yet again as I grieved again for the son I thought I would have and the black hole deep in my heart grew until everything became clouded by a disability lens.

Wondering how my son could ever fit into this world where achievement rules, ability is applauded and being the brightest and the best is the goal.

Nothing seemed to apply to Joshua.

No sermon preached. No Bible verses studied. No meeting attended. No one seemed to have my “problem’.

My different kind of normal was again challenged. I felt alone in my noisy house-full.

I was afraid to tell my friends within the Down syndrome community that I prayed for Joshua to be healed. I feared judgment and criticism for not accepting him. Or worse – that I didn’t love him.

But my heart ached because of my intense love for him. My mother’s love, fierce and protective – burning against those who were deeming him a difficult child and raging against those who looked down upon him.

Offended at those who thought he needed to be healed and angry at myself for wanting him to be.

And not strong enough to live this kind of existence without help from God.  I had cried to the Lord upon his diagnosis of Down syndrome and a severe heart defect, “God, I can do one, but both?? I am not strong enough for this!”

The wonderful thing is that I don’t have to be.  When I am weak, He is strong.

God has allowed the different than what I ever expected and yet, He has shown me that I have been given a great honor in being Joshua’s mommy.

And that jealousy and comparison have no place. I need not compare him to anyone.

And as I continue to pray and ask for God to help me bring up this lovely creation He made in His image, I am reminded that He is my strength.

I am reminded that all feelings of failure and defeat are not of God, but as I lean not unto my own understanding, I find a path.

A path often rocky and dirty yet cleared by His grace little by little to guide me each step of the way as I muddle through this journey.

And while I am aware every day of autism, I am also aware that every day has new mercies, new opportunities and a new awareness of things wonderful and to be celebrated.

Lord, help me to live aware. Aware of all the wonderfulness that is life.

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A Different Kind of Wonderful

Recently a beautiful, inspiring video went viral called ‘Dear Future Mom”, addressing a mother-to-be whose unborn child has Down syndrome.  Children and young people with Down syndrome themselves speak to her, telling her what life will be like.

“He will hug you.”

“He will run to you.”

“He will be able to speak.”

But wait…

My son has Down syndrome.

He is less than a month from his 12th birthday and completely non-verbal.

“He will say, ‘I love you mommy.'”

Words I’ve longed to hear with a deep, hollow ache.

I’ve wept a thousand prayers asking God to loosen his tongue for him to speak.

Because words are life-changing.

My heart pleaded for comforting words as I felt my son’s stirrings within my womb; instead, I heard, “You do know he will be moderately to severely mentally-retarded.”

Stories and blogs and video clips of those with Down syndrome accomplishing great things fill the World Wide Web.

I too searched the internet in its more limited scope twelve years ago. I became an information junkie and sought to prove that doctor wrong.

Scouring the internet and scrolling through picture after picture to find hope instead of the dread and anguish I felt.

One particular picture of a young teen-aged blond boy on a surfboard took my breath away.

It was my picture of how my Josh would look one day.

My Joshua looks very different than that imagined boy.

Our life with Down syndrome looks different that video.

Our life with Down syndrome is sprinkled with autism.

Would Future Mom want to watch our video?

My life looks like waking to the sound of a loud toddler toy at 5 am.

Most days like look like most others: watching movies, looking at books and DVD cases, throwing toys, wandering around the house and maybe going for a car ride. We have spent this entire spring break week at home.

Well-meaning friends often suggest things to do and I find myself replying, “No, he can’t do that,” way more than I would like.

I don’t attend workshops explaining puberty to my growing son who wouldn’t understand. I don’t go to seminars and conventions because the subjects don’t apply, the activities are too difficult and I delete a lot of emails from our various associations.

“He will help his dad fix his bike.”

Josh can’t ride a bike.

“He will be able to write.”

Josh doesn’t hold a crayon.

The stated possibilities of Joshua working, earning his own money, renting an apartment and living alone seem light years away for a boy who just learned to drink from a cup.

Countless times I have heard, “Treat him like your other children.”

I’ve tried, but it’s too different.

I was told that with early intervention and therapy and inclusion that nothing would be out of the realm of possibility.

But I did all that. I still do. And for a while it was the picture of what it was supposed to be like.

Then it became different.

We were no longer “More alike than different.”

We are now more different than alike.

Yet I still have hope.

And realize that different is not necessarily bad.

It’s just that, different.

Joshua says, “I love you mommy,” differently in his smile, in the gentle pull of my head to his and in the way he twirls my hair with his soft, chubby fingers.

His middle-of-the-night giggles make a sweet alarm.

I treasure this precious time, as I sit on the couch and write and listen to him clap, then sigh with delight.

I hear him smacking his tongue which tells me he’s thirsty and soon he’ll be up looking for a drink.

And I should make him do it himself, at least I’m told.

But I probably will get it for him.

I don’t mind his dependence on me, really.  But we work toward independence while trying to focus on the “can” and not the “can’t”.

Independence and accomplishment are good things.

But they are not the thing.

Joshua is fearfully and wonderfully made. His life is worthy because he is a child of God.

He is not Down syndrome.  He is not autism.

He is Joshua.

“He will be happy.”

Josh is happy.

“And you will be happy too.”

And I am.

The video of our life with Down syndrome is every bit as beautiful even if not the same.

It’s just a different kind of wonderful.

 

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To Those Who Use the “R” Word

Today is the Spread the Word to End the Word day. A day of awareness to end the use of the “R” word” retarded, retard and any other forms of such, like ‘tard’.  A day recognized as a day for change.

But I and many others live this day every day fighting against the use of a word.

A word once used as a diagnosis is now used as a term of insult and mocking.

No place is sacred.  Not stores or schools or even church. Corridors and walls echo “That’s retarded “, “I’m so retarded,”  “You look like a retard,” and the list goes on. The word invokes such creativity is seems.

From “My hair looks retarded,” (Statements like these are so grammatically incorrect and frankly ridiculous I won’t even waste my time to comment) to a Facebook meme referring to laughing like a retarded seal.

Just how is the seal retarded?  He flaps his hands, like one with autism.  Is that what is funny? Is this what makes the seal “retarded”?

I ashamedly and reluctantly admit I used to use the word before it became personal.

And I don’t really recall my thought processes as I so flippantly berated myself by mumbling, “I’m so retarded.”

How I wish someone had asked the questions so I would have realized how hurtful it was.

So I ask you who continue to use the word: What makes something “retarded”?

What makes someone or something sound “retarded”?  Is it noises like those who cannot speak make?

My son makes that “retarded” noise when he opens his mouth and has so much in him to say but only a grunt will come out.

And I often tear up because he wants to speak so badly and I see the frustration swimming in the pools of his blue almond-eyes.

He acts “retarded” with his obsessive towel-twirling and uncoordinated movements and not being able to use the toilet on his own while having to rely on others to change his large pull-up type pants exposing him in ways that would  mortify a typical almost-12 year-old.

But he cannot express his embarrassment. He must deal with it because we have to change him. He cannot tell me when he’s sick, or sad, or just plain in a bad mood.

He’s developmentally delayed.

Retarded.

Do you see my son when you say it?

Or do you see a young man in a wheelchair with his head slumped over with drool seeping from his mouth?

Do you see a little girl with almond-shaped eyes whose tongue might hang out a little when she gets tired?

Or do you see a teenager who talks a little like he has marbles in his mouth and is hard to understand?

Do you see an adult with her caregiver in Walmart who runs up to give you a hug?

Do you see my son when you say it?

I see my son when you say it.

And it breaks my heart.

Because I see a smile that can reduce me to a sobbing mess because the soul behind it is so pure.

Because I feel a chubby hand in mine and on my face and I hear a belly-laugh from a boy who sees angels.

You – the one who still uses the word: Do you realize that it cuts so incredibly deep because I know there is an unspoken idea that maybe you are so thankful you don’t have a “retarded” child?

Or think it will never happen to you.

I sure didn’t.

What about you who are politely asked to stop and yet simply refuse?  Who tell me or my kids it’s just what you say and you aren’t going to stop?

Do you think I’m too sensitive?

What about you who tell me that I am and that it’s just what “everyone” says.

And that it’s not aimed at my son.

Does the “N” word offend you?  It does me.

But if it’s not aimed at you or one of yours or even one of my friends, should it be okay?

Hardly.

We are to speak life and not death.

The “R” word speaks death because my heart dies a little every time I hear it used by someone in the halls of my church who I know also loves my son.

Death every time my children have to hear friends use it and being mocked for standing up against it.

Would Jesus say “retarded”?

Would He fight so hard for His “freedom of speech” and right to say it?

He came to heal the brokenhearted. He spoke life and love and honor.

The “R” word speaks death and hate and disrespect.

Yet I’ve been told so much to the contrary.

I’ve been told that because the word simply means “slow” I shouldn’t be upset by it.

But is that really what someone means when by using the word?  What image do you see?

I see my son who would smile and touch your hand even if you called him that vile, horrid word to his face.

Maybe he’s too “retarded” to know better.

Maybe He is like Jesus and forgives them because they know not what they do.

Maybe he knows his mommy will not stop speaking out for him because he cannot.

What do you see when you say it?

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