My husband and I are privileged to be the parents of a beautiful daughter with Down Syndrome. God placed Ashley in our care 40 years ago to love, protect, guide, and teach. Today, I look back over those years and question who exactly has been teaching whom.

Ashley exhibits more unconditional love and grace for life's journey than most of us can begin to comprehend. Although she chooses not  to converse a lot, I stand amazed at the impact she continues to have on the lives of those who know her and witness her sweet spirit and winning smile. Regardless of how our day has gone, Ashley continues to give us reasons to smile.

Last year, I submitted two stories and photos of Ashley as a child to be published in a book called Reasons to Smile: Celebrating People Living with Down Syndrome. I am beyond thrilled that my stories were accepted and will be published along with 50+ others in this beautiful photo/gift book. The release date for Reasons to Smile is January 2016.

The editors of the book are excited and grateful. Because of your donations, they have reached their Kickstarter goal and are now able to build a website where they can continue sharing inspiring stories about life with special needs individuals. Thank you for your contribution.

http://bit.ly/Kickstarter_RTS.

Thank you! Starr

A Special Delivery

“And we know that for those who love God

all things work together for good, for those who are called

according to his purpose. For those whom he foreknew

he also predestined to be conformed to the image of his Son”
―Romans 8:28–29, NIV

“God only gives special needs children to special parents.”

Most families with special needs children have been on the receiving end of these words as well-meaning friends grapple for something, anything, encouraging to say in the face of circumstances perceived as tragic. Parents who are trying to make sense of their heartache want to believe this platitude, and in desperation they buy in to its fallacy.

The heartbreaking reality is that scores of special needs children are born to parents who neglect and abuse them or are mentally or physically incapable of caring for them. Furthermore, parents of special needs children soon realize they simply aren’t “special enough” to overcome the challenges that lay ahead. No one, no one, is equipped to handle the pressures of rearing a special needs child (or any child) in and of themselves.

If God gives special needs children to parents who aren’t equipped to handle them, what must He be thinking? What does He hope to accomplish through something that seems so callous and unjust?

In my despair, I wrestled with the reality of our daughter’s condition. Doesn’t Scripture say, “If a child asks his father for a loaf of bread, will he be given a stone instead? If he asks for fish, will he be given a poisonous snake? Of course not! And if you hard-hearted, sinful men know how to give good gifts to your children, won’t your Father in heaven even more certainly give good gifts to those who ask him for them?” (Matthew 7:9–11, NLT).

Though I cringe to recall it, from deep within my desperation and fear, I hurled a defiant fist of hopeless accusation and resentment at God: It would’ve been better for our child to have died than for her to live with the challenges she’ll face. What sort of God allows the affliction of one so innocent? In time, my answer came. The words of today’s text became my lifeline. Romans 8:28–29 reveals the ability of a Sovereign God to take a perceived tragedy and transform it into a beautiful gift―a gift that changes the lives of those who love Him. God was tenderly molding us into the image of His Son. Within this tiny parcel wrapped in pink came a contagious love, tied with our growing awareness of God’s unshakable presence and His overwhelming desire for us to know Him and experience His ways.

No. Special needs children aren’t given to special parents, and they’re not given to exalt their parents in the eyes of others. God blesses us with their presence so that we will exalt the Giver of all good and perfect gifts. The tragedy comes when we miss His point―the birth of a special needs child is a very “special delivery” indeed!

Now it's your turn to "get down." Have you previously experienced a "tragic" life event that you now see as a "gift?"

I always welcome your comments.

Keep your sunny side up!
Starr

Day 5 of a five-day series which first appeared at www.zookeepersministries.com

Rocking My World

“I am the LORD, the God of all mankind. 
Is anything too hard for me?”
―Jeremiah 32:27, NIV

Our daughter’s Down syndrome diagnosis propelled us into a world we’d never have chosen for ourselves. Pink bows, rosebud bouquets, and bubblegum cigars weren’t enough to chase away the heartache that consumed us. However, the light in our daughter’s eyes, the absence of the heart murmur so prevalent in children with DS, and her overall physical strength gave us the hope we needed to press on. We left the hospital resolved to take our little girl home, love her as we did her sister, and trust God with her future.

Those next few days were a roller-coaster ride, a torrent of contradictory emotions. A joyous event, filled with pain. Trying not to think, yet doing nothing but thinking. Offering prayers of gratitude, yet continuing to ask for miracles: miracles that would change the diagnosis, miracles that would somehow make everything different.

In the days that followed, I thumbed through mounds of books from the library searching for any tidbit of information about Down syndrome. I was overwhelmed with the scores of birth defects and abnormalities that can occur during pregnancy. My thoughts soon turned from Why me? to Why not me? as I realized that to receive a Down syndrome diagnosis on the scale of “what could have been” was a blessing.

Ten days after our daughter’s birth, a neighbor insisted on keeping our girls for the evening so my husband and I could enjoy a much needed respite. We made a pallet on her living room floor, placed our newborn on her tummy, and left, grateful for moments to exhale. We enjoyed our alone time, but our daughter and the challenges that lay ahead were never far from our thoughts.

When we returned to our neighbor’s, she met us at the door with uncontrollable excitement. “Your daughter flipped over from her tummy to her back!”

This had to be a fluke. What baby does that at ten days old? “Normal” children take sixteen weeks or more to achieve this milestone. I would definitely be watching her every move in the coming days.

It was no fluke. Our daughter kept rolling over from her tummy to her back. It was the miracle I’d prayed for; the miracle I needed. God’s message was very clear: “Everything is going to be fine. Turn her over to me. Trust in me, and I will do the rest.”

God was answering our prayers. He was making everything different. Not by changing the diagnosis, but by changing our perspective. Humanity places limits on our abilities, but with God, there are no limitations.

God’s unexplainable peace flooded my soul. He’d turned my world right-side up again. My job, for now, was to hold that world in my arms and rock her.

Now it's your turn to "get down."
Is some unexpected challenge rocking your world? Remember, nothing is too hard for the Lord. He’s got this!

I welcome your comments.


Keep your sunny side up,
Starr

Day 4 of a five-day series which first appeared at www.zookeepersministries.com

Mark of His Love

“Every good and perfect gift is from above, 

coming down from the Father of the heavenly lights.”  

―James 1:17, NIV

We sometimes have the erroneous notion that if everything appears well on the exterior everything is okay. At our daughter’s delivery, I equated her ten fingers and ten toes with perfection. Caught up with her external appearance, I gave little thought to the possibility that something was wrong on the inside.

My obstetrician immediately suspected Down syndrome because of some of our daughter’s distinct facial features: almond-shaped eyes, a small head with a flatter profile, a thicker neck, a somewhat flat nose, a smaller mouth and ears, and a thicker tongue. None of these features is abnormal in itself, but when a doctor sees a number of these features combined, Down syndrome is suspected. Because of these and other distinguishing physical features, people with Down syndrome will resemble one another as well as bear a resemblance to their family members. My doctor was convinced of his suspicions when he looked into the palms our daughter’s hands and saw the simian line.

In the average hand, three lines intersect the palm―the head, heart, and life lines. A simian line fuses the top two lines (the head and heart) into a single, deep line that crosses the palm horizontally. This line is present in approximately 3 percent of the general population and appears in about one-half of individuals with Down syndrome. (It can also show up in the palms of a person who is gifted mentally even to the point of genius.)

Further chromosomal testing supported the doctor’s conclusions. Intricately woven into every cell of our daughter’s body was an extra copy of the twenty-first chromosome―the distinctive marker of Down syndrome. Our daughter may appear flawed to some, and she may fall short of humanity’s expectations, but in the eyes of her Creator she is perfect and ideal for the role she was destined to play in our lives.

As believers, we too carry a distinctive mark―the seal of the Holy Spirit. The Spirit’s indwelling presence in our lives signifies that we belong to the family of God and are joint heirs with His Son, Jesus. When we grow together in Christ as His children and assume His nature, we begin to resemble one another in character and deeds. After a while, others come to know us as members of God’s family because we resemble our Father.

If we could look into the hands of Christ, we would see within His palms distinctive marks―marks of His love for us: His nail scars. Regardless of our genetic make-up, Christ considered us worth dying for. Now, as believers forever marked by His love, we each have that extra something that makes us perfect, inside and out. Pretty special, huh?

Now it's your turn to "get down." Do you bear the mark of God's love? Reach out and make Christ visible today by giving someone a hand up.

I welcome your comments.

Keep your sunny side up!
Starr

Day 3 of a five-day series which first appeared at www.zookeepersministries.com

Expecting the Unexpected

“Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.”
―Proverbs 3:5-6, KJV

I was four months pregnant when I was rushed into emergency surgery―the diagnosis: acute appendicitis. Afterward, I clung to my unspoken fear that the anesthesia would adversely affect our unborn child.

At our daughter’s birth, five months later, I was more anxious to know if our baby had ten fingers and ten toes than whether or not our child was a boy or a girl. Counting all her digits, I breathed a sigh of relief and a silent prayer dedicating her to the Lord and His will for her life. I didn’t realize the significance my prayer would have a few hours later.

The next morning, my husband, along with his mother and our pediatrician, entered my hospital room. Their downcast expressions pierced my joy-filled heart. Although words seemed unnecessary, the doctor proceeded to tell me our daughter had been born with Down syndrome.

Surely, he was mistaken. I’d just held her. Hadn’t I marveled at her strength as she lifted her tiny head from my shoulder? Hadn’t I unwrapped the pink flannel blanket to reveal all seven pounds of wrinkly flesh and counted every last finger and toe for myself? They were wrong. Our child was nothing less than perfect!

Reflecting on my surgery, I blamed her disability on the anesthesia. Our pediatrician assured us that nothing we did had caused this, and there was nothing we could have done to prevent it―Down syndrome is a chromosomal abnormality that results in intellectual and developmental disabilities.

Later that night, in the shadowy stillness of my hospital room, warring thoughts grappled for prominent position in my mind. I could do nothing to silence the incessant replay of our physician’s words inside my head, nor to dismiss the unwelcome companions of doubt and fear lodged deep within my heart. I thought of the delivery room and my initial relief. Now my joy suffered a crushing blow, unleashing an avalanche of contradictory emotions and prayers.

Oh, yes, the prayer―that prayer―the one surrendering our daughter to the Lord’s will. I so wanted to retract my words of grateful submission. Instead, I pleaded for miracles, miracles that would change the diagnosis, miracles that would somehow make everything different.

Life seldom unfolds as we expect. Mary’s didn’t. An unforeseen pregnancy interrupted her plans to marry Joseph. What questions and fears must have raced through her mind, yet her response was, “Behold, I am the servant of the Lord; let it be to me according to your word” (Luke 1:38, ESV). Mary yielded her plans to God and trusted in His wisdom―the outcome: salvation for all humanity.

It’s easy to offer prayers of grateful submission when things are going well, but to yield our ways to God’s when the unexpected comes crashing in is a true test of our character and faith. Surrender you challenges into the care of the One who holds your future. He is your salvation. Trust Him.

Now it's your turn to "get down." Have you ever wanted to retract a prayer or promise you've made to God? What was the end result?

I always welcome your comments.

Keep your sunny side up,
Starr

Day 2 of a five-day series which first appeared at www.zookeepersministries.com

Sunny-side Up

“Oh, how sweet the light of day, and how wonderful to live in the sunshine! Even if you live a long time, don’t take a single day for granted. Take delight in each light-filled hour.” ―Ecclesiastes 11:7–8, MSG

Hitting the snooze button for the last time, I rolled out of bed, shuffled to the kitchen, and took two eggs from the refrigerator tray. Determined to start my day sunny-side up, I tapped one egg on the side of the cast-iron skillet and watched its contents slip into the sizzling pan.

Wow! A double yolk. I couldn’t remember the last time I’d seen an egg with two yolks.

As any appreciative twenty-first-century recipient of such good fortune would do, I first chronicled this rare occurrence with my camera and then googled the significance of a double yolk. Wikipedia informed me that the superstitious say a double yolk means double good luck: the recipient will get double their good expectations.

This eggspert view of life is amusing, but basing our expectations on false hope is a slippery slide into discouragement. The hard-shell reality is that regardless of our sunny disposition, at some point we’re going to end up in a frying pan full of hot grease. What does the outcome look like for you―scrambled or sunny-side up?

In general, I view life from the upside. I attribute a great portion of my optimism to the unrealistic portrayal of family on television in the late fifties and early sixties. Although I viewed the lives of Beaver Cleaver and Ozzie and Harriet Nelson on our twenty-one-inch black-and-white TV, I projected my future in wide-screen living color. Of course my life would be nothing less than perfect.

It didn’t take long for my imaginary universe to morph into reality as I transitioned from youth into adulthood. My latter teen years were peppered with the usual girl drama, heartbreak, and life adjustments, most of which could be remedied, and yet they groomed me for the unalterable hard knocks that were soon to follow. 

I never envisioned my future to include a child with Down syndrome. In fact, at age twenty-seven, I’d never even heard of Down syndrome. Nevertheless, thirty-nine years this side of our daughter’s birth, I can’t imagine our journey taking any other course. Like many others who travel this road, we are blessed to accompany a child who experiences life at a slower pace and marches to the beat of her own drummer.

Perhaps, like me you’ve collided with a future you don’t recognize as our own, and you’ve found yourself in a procession you didn’t sign up for. I pray you know Christ. I can’t imagine walking this road (or any road) without Him.

Regardless of your challenge, Christ 
will always lead you to victory and is waiting for opportunities to reveal Himself along the way. In the mean time, your task is to keep in step and walk on the sunny-side, for with Christ we always have reason to hope. Walk on.

Now it's your turn to "get down." When your life takes an unexpected turn, what do you do to maintain a sunny disposition?

I always welcome your comments.

Keep your sunny side up,
Starr

Day 1 of a five-day series which first appeared at www.zookeepersministries.com

What A Difference A Day Makes

When my daughter was small, she would always get up in the morning and look out the window to see if the sun was shining.

I called her "my sunshine girl." 

She still is.

She loved the musical, Annie, and its theme song, Tomorrow.

She still does.

When I was sad, she could always lift me up.

She still can.

She would pat me softly on the shoulder and say, "Don't worry, Mommy. It'll be all right. The sun'll come out tomorrow."

It always did. 

May your day be filled with sunshine. And if not today, look outside tomorrow. 

Perhaps, the sun'll come out.

It still does!

Now it's your turn to "get down." What is something you do on a gray day to maintain a cheerful outlook?

Please leave a comment.

Keep your sunny side up!

Starr

You Choose!

“Choose for yourselves this day whom you will serve.”
―Joshua 24:15, NIV

Years ago, I walked past the room of my special-needs daughter and overheard her talking to her make-believe friend.

"Leave my ear alone", she said. "Quit trying to get the Lord out. I want Him in there."

I’ll never know the scenario being painted in her head, but her words went straight to my heart. Her conversation speaks of our relentless struggle with good and evil as we live out our days on the earth. At times, it’s as if we have an angel on one shoulder pleading with us and a demon on the other taunting us while we wrestle with which voice to obey.

At a specific point in time, believers make a conscious decision to follow Christ. But choosing to follow Christ is not simply a one-time decree, it’s a daily resolve―a moment by moment determination to invite Him into every aspect of our lives. The choices we make are crucial.

Satan unremittingly says, “Get the Lord out,” but he doesn’t make us do it. That decision is uniquely ours. 

I pray you will choose as my daughter did, to “want Him in there.”

Keep your sunny-side up!
Starr

AND SHE SCORES!!!!
No need to frantically chase the ball.
Just wait till it comes to you and drop it in.

Photo: Ashley receives some pre-game advice for Special Olympics basketball. 

A Different Drummer

"If a man does not keep pace with his companions,

perhaps it is because he hears a different drummer.

Let him step to the music which he hears,

however measured or far away."

― Henry David Thoreau―

"None of you may be puffed up in favor of one against another. For who sees anything different in you? What do you have that you did not receive? If then you received it, why do you boast as if you did not receive it?" ―1 Corinthians 4:6-7, ESV

The video below simply makes my heart sing.

Kudos to Waxahachie High School's exhibition of true school spirit ―the spirit of inclusion. The pride on this young man's face is almost more than I can stand.

Be still my heart!

 

Also, note the thrill of the drummer with the glasses just to the right of the one with Down syndrome. His joy seems to equal that of the young man with DS.

Helping someone shine in the face of affliction has a way of lifting one's own spirit.

"Do nothing out of selfish ambition or vain conceit. Rather, in humility value others above yourselves, not looking to your own interests but each of you to the interests of the others." ―Philippians 2:3-4, NIV

Now it's your turn to "get down."

Is there something you can do today to include someone who marches to the beat of a different drummer? If so, strike up the band and step to the beat any way you please.

Please leave a comment.

Keep your sunny-side up!
Starr

Photo taken of our daughter, Ashley, in the late '70's



Destination Unknown

“We worry about what a child will become tomorrow, 

 yet we forget that he is someone today.”

~ Stacia Tauscher ~

"Trust in the Lord with all your heart,

And lean not on your own understanding;
In all your ways acknowledge him,

And he shall direct your paths."

―Proverbs 3:5-6, NKJ

I am an idealist at heart. After all, I grew up in the Beaver Cleaver and Ozzie and Harriet Nelson era. (Huh? You mean not everyone grows up to meet their husband at the door in an apron and pearls?)

In the fifties and sixties, life was portrayed on television as almost perfect―complete with a rose-covered cottage and white-picket fence, a handsome husband, well-behaved children (of course), and the cat and the dog.

News flash: not everyone arrives at the destination of his or her dreams. Sometimes the unexpected happens and we collide with a future we don't even recognize as our own. It doesn't necessarily mean that the latter is any less desirable than the former, it simply means it's different.

I never envisioned my future to include a child with Down syndrome. In fact, at age twenty-seven, I'd never even heard of Down syndrome. I found myself at a destination I didn't sign up for and one I knew nothing about.

Our daughter was in her teens when I ran across the following story. The emotions and truths expressed by the author reflect those I've experienced on my own journey to this foreign land. As you read it, perhaps you will come to understand why many of us who travel here consider it a blessing to accompany a child who experiences life at a slower pace and marches to the beat of their own drummer.


Although I never pictured myself as the mother of a child with Down syndrome, thirty-eight years this side of her birth, I can't imagine my journey taking any other course. It has been the opportunity of a lifetime and a detour I'm privileged to take.

I hope the following story blesses you. Sit back, relax, and enjoy your view.

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans... the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It's all very exciting. After several months of eager anticipation, the day finally arrives.

You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland!" "Holland?" you say. "What do you mean, Holland? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place.

So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, " Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

Emily Perl Kingsley wrote "Welcome to Holland" in 1987. Since that time, it has been translated into numerous languages and published on scores of websites. Emily has been a writer for Sesame Street since 1970. When her son Jason was born with Down syndrome in 1974, Emily and her husband Charles became activists, educating the public and developing resources to help Jason and other kids with special needs fulfill their potential.

Now it's your turn to "get down." What is something you might have missed out on if your life had not taken an unexpected turn?

Please leave a comment. 

Keep your sunny side up,

Starr