Your Special Needs Child - The Painful Songs

There are some songs that I just can't sing.

This morning in church, one of them came onto the screen.

Come, all ye pining, hungry, poor, 
The Saviour’s bounty taste; 
Behold a never-failing store
For every willing guest. 

I was already in the last row of the sanctuary, but I slipped out the backdoor before anyone caught sight of my tears.   Off to the bathroom I went to bury my face in tissues.  

A call to the hungry to be fed by Jesus evokes painful reminders of my daughter's condition -- her inability to eat, her body's rejection of food, her tears whenever I announce "mealtime!"   Would my daughter ever know the beauty of Jesus filling her soul if she couldn't understand how food fills the body?  Would she ever cherish verses like "taste and see that the Lord is good," if, in her mind, tasting is never equated with good?

Songs referencing the goodness of food only remind me of the brokenness in my world; how the Fall has affected my child.   For Joanna, food is punishment.  


I remember talking with a dear friend, years ago, whose oldest son has autism.  Unable to speak at a conversational level, she recalled how she still couldn't bring herself to sing, "Oh, For a Thousand Tongues to Sing" without dissolving into tears.   You see, her son has never been able to sing his great Redeemer's praise.  And that's not likely to change.  

I didn't get it then -- how a song of praise and worship could evoke such deep heartache, such longing.
I still don't understand completely, but I have my own songs that I still can't sing.  

At least not yet.  

But Heaven is coming.  

And all things broken will be restored, and all Scripture unfulfilled will find its fulfillment in the eternal throne room of God.


I don't know much about Heaven.  But I do know that there will be a feast -- a great wedding feast, celebrating the marriage of the Lamb and His Bride.  And Lord willing, my daughter will be at that feast.  And she will dine with her Beloved, she will enjoy it for eternity; She will taste, and know that her great God is good, and that Jesus fills her soul.  


Do you have songs that you can't sing?  Songs that, instead of evoking praise, evoke tears?  Songs that remind you of an unfulfilled longing?

Hold on.  You will one day sing.  

Heaven is coming.

Rescuing Love

Not all tears are grief-filled.  Some tears are shed when my eyes encounter true beauty, when God moves, when my Father whispers glorious truths to my heart.

Tonight was one of those times.  A tears-shed-from-beauty time.

It was a simple scene, really.  A child dancing.  But oh, to know the context, is to see something breathtaking.

50 of us filled the room -- family worship night -- and the words to the song came up on the screen and  voices filled the room:

"You are the everlasting God, the everlasting God -- You do not faint, You won't grow weary.
You're the defender of the weak, You rescue those in need, You lift us up on wings like eagles..."

And out of the corner of my eye, I saw children swirling and dancing and laughing as the music continued.  But one child in particular stood out -- a small boy with cocoa-colored skin and piercing brown eyes and a big toothy grin that lit up the room.

His parents stood close by.  They watched their son.  And I wonder if their minds flashed back to that day, years ago, when they first received the call.

Five years ago, dear friends, Peter and Erin, traveled overseas to Uganda, because they got a call that orphaned twins -- two precious baby boys -- needed a family.  And their hearts melted at the thought of calling them their own, and so they got on a plane to rescue their boys and traveled halfway around the world and fought legal battles for weeks and months on end so that one day, they could bring those boys home and speak over them words of affirmation and claim -- we are your mama and papa and we want you. 


And these same boys grew up in a home where love reigned and Jesus was celebrated and the days of being an orphan forgotten, because the word orphan described them no longer.  They became rescued sons. 

And TONIGHT they sing, and dance, and the words in the background speak of the God who saved them:  "You're the defender of the weak, you rescue those in need."  Their dancing affirms the very words they sing.  

And they likely have no idea.  No idea of the "would-be" life that awaited them apart from the glorious intervention of a saving God, and merciful parents, to defend the weak, to rescue those in need.  They are care-free, happy, rejoicing, loved, and largely unaware of the powerful rescue that took place those many years ago.  They sing of something larger than themselves, larger than they could ever comprehend. 

And I cry tears because I see the beautiful Gospel reminder that I too have been rescued.  Adopted.  Called out of a life of sin, slavery, and fatherlessness, and welcomed into the home of God, who gives me reason for singing and dancing.  He adopts me that I may enjoy the blessings of a Divine Family.

Sing.

Dance.

Rejoice.

Worship.

Know the beauty and freedom of RESCUE. 

Your Special Needs Child: Am I Missing Out?

Flip through my high school yearbook, and next to my name you'll find a list of 10-15 activities.   I was constantly running from one thing to the next.

I was obsessed.  Not obsessed with drama club, or vocal groups, National Honor Society, or sports.  No, no single activity captured my affections and heart.  Rather, I was obsessed, or terrified, rather, with the thought that I was missing out on something.  And so I did everything.

My days of marching band and softball are far behind me, but the fear of missing out on life still pervades my mind and thoughts.

And nothing presses on this fear so much as having a child with special needs.

When my child cannot perform even the most basic of life skills, like eating, one of the most predominant questions that rolls around in my mind is this:

"Am I missing out?"

Are others parents, other kids, getting to experience something better because their child doesn't wrestle with this?

Maybe you know what I mean.

Because if your child has limitations, then by default, you also have limitations.  For some, they are most severe.  But for all, the temptation exists to feel as if there's a part of life that you will never experience.  You watch other parents and what they're able to do with their kids, or without their kids, and you weep, knowing you may never experience that.

"Am I missing out?"

• Am I missing out on a full night's sleep because my daughter vomits throughout the early morning hours?
• Am I missing out on a "family bonding moment" because we never all sit down at the table together?
• Did I miss out  on something when others held their precious newborns while I only watched mine through a sheet of glass?
• Am I missing out on enjoying my second-born, because I'm constantly at the highchair with my first-born?

And the answer is...YES.  Yes, I am. 

And here's the hard part.  It's not imagined.  It's not feeling "victimized."  It's not a simple - "Be thankful for what you have, because others have it worse than you do"- kind of story.

The reality is -- You ARE missing out.  And probably on more than you even realize.

Talk about my biggest fear coming to life. 

And the temptation is always to look at the immediate --- seeing with our eyes only those things that we cannot do, and grieve as those who have no hope, as those who look at the very thing they're missing out on think that's all there is.  We forget there's more to this life.

It's like the small child who cries because his parents say he may not have a piece of candy before dinner, because it will ruin his appetite.  But my friend gets to have one!  He protests with sad desperation, because he is missing out.  And truth be told, he is right.  All the while, he has no idea that after dinner, the most delicious ice cream sundae awaits him.

He IS missing out.

But he is missing out on something small. Something incomparable.  Something so insignificant in comparison to what's to come, that the loss, held in the light of the gain, nearly disappears.  A paltry piece of candy when a brownie sundae awaits.

And the reality is, eating the candy first only lessens our enjoyment of the sundae later.

 If we could only get a glimpse into the "eternal glory" being prepared for us, the beautiful reward for faithful parenting, the "well done, my good and faithful servant" spoken over us by our King because of the tireless sacrifice towards your children, we would never think here and now that we are "missing out" on something.

"For our light and momentary troubles are achieving for us an eternal 

glory that far outweighs them all." 

1 Corinthians 4

When you miss out in this life, for the sake of loving your children, you are actually securing  -- achieving -- for yourself something better.


Do not envy what others may be able to do in this life.   When heaven comes and all is made right, your King, who has entrusted such a precious soul to you, will make up abundantly for all things lost on this earth.  Face with strength and perseverance that which God has called you to, and courageously "miss out" on those things which others enjoy.

The best is yet to come.

Daddy's Happy Girl

Joanna's closet overflows with cute clothes.  Frilly dresses, skinny jeans, corduroy jumpers.

But there's one item in particular that's especially fitting for our daughter - a pretty pink floral t-shirt with 3 words sprawled across the front:  "Daddy's Happy Girl."


And the shirt couldn't be more true.  She may be the happiest "daddy's girl" to ever walk the planet.

On the one hand, I love the fact that she loves her daddy.

I love that the first words she whispers when she wakes up are "Daddy downstairs?"
I smile knowing that her daddy's kisses can heal all wounds, right all wrongs, and fix all things.
I cherish her childlike prayers, asking Jesus to help "Daddy with the big kids."
And my heart brims with joy, knowing that when she's sick, sad, or in need of comfort, she finds rest in peace within the arms of her father.

I long for my little girl to know that her Daddy loves her, and that her Heavenly Father cherishes her even more!


But on the other hand, I resent it.


I feed. I change. I dress. I bathe. I play. I teach. I train. I instruct. I pray. And I feel utterly replaced and unappreciated when MY care of Joanna goes unnoticed, when my daily, and difficult, investments are quickly overshadowed by her "daddy love."

What I WANT is to be the fun one.  The one she runs to at playtime, asks for at bedtime.  What I LONG FOR is her joyful smile and appreciative giggles when I meet her basic needs.  I want Joanna to look at her mommy, and without a doubt, think she's the coolest woman in the world.  Maybe even cooler than her daddy.

I WANT to be appreciated.  And so I struggle when, after meeting all of her needs, she longs for someone else.

A dear friend encouraged me recently with Proverbs 31 - that the children of the faithful woman will rise up and call their mother "blessed!"  They will publicly praise her, thank her, appreciate her.

But her children don't rise up immediately.  They do not publicly praise her right away.  It is only after days, weeks, years, of faithful daily, sacrificial investment, that they look back and begin to see her faithfulness to care for them, train them, nurture them...sometimes even at the expense of "fun."


Mothers -- you are sowing seeds in the hearts of their children.  You may not be the "fun one" now, because caring for your children may sometimes, often, mean that you do things they do not like.  Things that don't make you very "fun."  Things that may not make them "mommy's happy girl."

But the Bible says that your faithfulness in the little things will reap a harvest in the long term.  And even your kids will one day see it.

Your Special Needs Child: Living Out the True Gospel

Before I had children, I was told that being a parent will deepen my understanding of the Gospel.  After all, the story of the Gospel is one of an all-powerful God, who made Himself human, to rescue people who could not rescue themselves.  Ephesians 2 says that we were DEAD, and God made us spiritually alive!

Then, you have children.  You literally bring a person into being.  You give him life.  Your very body nourishes and grows her.  The, you bring him into the world, and you feed, clothe, and nurture this precious, helpless child.  You bring life to one who would otherwise die.  And all the while, you get a glimpse into how God takes care of you - He moves towards you and gives you life in your helpless state.

And parenting images the Lord in a beautiful way.

But in an incomplete way. 

Because here's the difference:  Eventually, those children move from "helpless" to "independent."  What was once a lopsided relationship with the parent serving and the child receiving, has become a reciprocal relationship.  In fact, most children grow up into adults that eventually care for their helpless parents.  Eventually, the roles are reversed.

But that's not the Gospel. 

The Gospel is not about God giving us a little push at the beginning, helping us for a couple years until we're "big enough, old enough," to do things on our own, reciprocate His love, even "help Him out" years down the road.  The Gospel is about a God who nourishes, stretnghtens, saves - continually, faithfully, every day-- until the day of glory.

If you have a special needs child, your temptation might be to resent the fact that he will never outgrow his helplessness.  That she will never become independent.  Please understand, there's something profoundly and eternally beautiful about what you're doing, and what you're learning.

The Lord has chosen to reveal to YOU what not every parent may get to see -- the lifelong, gospel-imaging, care for a helpless person -- rescue and care long after they should have "outgrown" their need.  For that is what God has done for us.  He is the faithful rescuer, pursuer, Father to His helpless children.   And He is the God who calls you to do the same.

Your Special Needs Child: You Are Serving a King

Do you remember the opening scene of Beauty and the Beast?

On a cold wintery night, an old beggar approaches a forlorn castle, seeking shelter from the one inside.  Yet instead of taking her in, he disdainfully casts her out.  Oh, if only he knew!  For the old woman was not who she appeared to be -- she was actually a beautiful enchantress, who would curse the selfish prince, for he could not see past her outer shell to see the person within.

We all know its a fairy tale.

But perhaps we're more similar to the prince than we realize.   We too forget that there's royalty in our home.

We forget the words of the rightful King:

I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me,  I was naked and you clothed me, I was sick and you visited me, I was in prison and you came to me ...Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me.’

Matthew 25

Jesus implores His disciples: when you care for the weak and the helpless -- for the "least of these" -- you are indeed caring for Him.

Every faithful act of every faithful parent is indeed real service to the King.  The most menial tasks of your day -- feeding, clothing, changing, caring -- can in actuality be the most significant, for you are actually serving royalty.

Most children will outgrow the helpless stage, the need to be fed, clothed, served, cared for when they're sick.  But not all children.

Some of you may be spoon feeding your  6-year-old.
Speaking for your 8-year-old.
Dressing your 10-year-old.
Changing diapers on your 12-year-old.
Reading to your 18-year-old.
Making decisions for your 30-year-old.

Some kids, in some areas, may never outgrow their helplessness.  Your faithful, long-suffering, care for the "least of these" children, is in fact a gift of faithful service to the King of Kings.

Your Special Needs Child: The Privilege of Advocacy

I often find myself exhausted trying to get my daughter the medical and developmental help she needs.  We battle with insurance companies, plead with doctors, discuss with therapists, all in the name of getting her the help she needs.  And most of the time, we are powerless.  We have nothing to offer except our passion to see her healed.


It may be similar for you.

You may feel incompetent next to doctors and specialists. You may wonder if you're doing the "right things" when you watch therapists experimenting with the latest techniques and tools.  After all, THEY are the ones who know what they're talking about.  You don't have the background, the degree, the language.

But you have something that doctors, specialists, therapists, special education teachers, don't have.

You have a special assignment.

And it's from the God of the Universe:

you alone are your child's spokesperson.

It may seem like an insignificant, trivial, normal part of your parental role, but don't this lightly:

You are your child's advocate.

And you may be the only advocate your child has.

___

Remarkably, the pattern and esteem of advocacy is upheld throughout the Scriptures.


Read through the Gospels, and you'll find story after story of people approaching Jesus -- not for themselves--but on behalf of those they love, someone who couldn't go to Jesus on their own.

Matthew 9.  Four men lower their paralytic friend through a roof in front of Jesus.
Mark 9.  A Gentile women approaches Jesus on behalf of her demon-possessed daughter.
Luke 7. A Centurion pleads with Jesus to heal his dying servant.

And it each instance - Jesus heals the sick.  But He does so based on the faith of their advocate.

There's something beatufiul about an advocate.  It about more than just championing a cause.
An advocate is one who stands between the HELPLESS and the HELPER -- pleading the case of the helpless, appealing to the heart of one who can help.

And when you advocate for your child, you represent something far greater than a simply a parent who wants whats best for her child.  

You represent Jesus Christ Himself. 

1 John 2: 1-2

"If anybody does sin, we have an advocate with the Father—Jesus Christ, the Righteous One.  He is the atoning sacrifice for our sins, and not only for ours but also for the sins of the whole world."

Jesus Christ champions the cause of the helpless.  He approaches the Father to plead on our behalf.  And He does not use a medical degree, or specialized language, or a persuasive argument.

He uses His very blood.  Jesus Christ sacrificed His very sinless life, so that we -- the helpless -- could get the Help we needed.

Most children will outgrow their need for "advocacy" -- eventually, they learn to eat on their own, write on their own, sign their own name, make their own money.  But not all kids.   Some children will need someone to speak for them, think for them, fight for them, decide for them -- maybe for the rest of their time on this earth.

If you have a child that needs a little extra advocacy than most -- you are blessed. You are privileged.  With your very words and actions, you live out a greater advocacy that takes place in the heavenly realm - Jesus Christ advocating for us.