Tuesday, October 29, 2013

Buddy Walk 2013

On a sunny Sunday afternoon on October 20, the Hemminger family plus Grandma Jan loaded into the car and headed to Tulsa for the Down Syndrome Association of Tulsa's annual Buddy Walk. This lively event that celebrates individuals with Down syndrome and raises awareness is one we look forward to each year. Our fourth year to attend, this year's Buddy Walk was extra special for a number of reasons. For one, it was Joelle's first time to participate. I keenly remember the physical discomforts of last year's walk with a baby in the belly! Secondly, Grandma Jan was able to join us, not as an out-of-state guest in our home, but as our neighbor across the street! At this time last year, none of us could have imagined that she would have just moved to Oklahoma within a year. Having her here is such a gift for our family! The thing that made this year's walk the most special, however, was the joy of seeing Benjamin actually WALK during the Buddy Walk! What a celebration! Here is a photo album journey to commemorate the day:

Here's Benjamin picking a prize from the bucket. He tried to get a whole handful!
Daddy helped Benjamin "fish" for a prize.
They caught one!
Ring toss!
How does this work, Daddy?
He's not sure what to think of this game.
Father and son working together
He got the ball in the cup!
Spin the wheel for a prize!
My little man is sporting his new green beads!
Daddy's so fun!
My two sweeties!
Shoulder ride!
The walk has begun...
I get to hold Mommy and Grandma's hands!
Way to go, Benjamin!
Joelle's received a participation medal too. : )
Happy family!
We love Grandma Jan!

Saturday, October 5, 2013

The Low Down on Down Syndrome Awareness

October is National Down Syndrome Month:

Did you know?....

  • In 1866, John Langdon Down, an English physician, published a description of a person with Down syndrome. The syndrome was later named for him in acknowledgement of his historical work.  Benjamin is a child who happens to have Down syndrome. He is not a "Down's kid," and he is not a diagnosis.

  • Down syndrome is a chromosomal abnormality that occurs in about 1 in 800 live births. For some unexplained reason, an error in cell developement results in 47 chromosomes rather than the usual 46. There's nothing we did to cause it, and there's nothing we could do to prevent it.

  • There are many medical challenges that a child with Down syndrome faces. Most of them are treatable with the advances of modern medicine. Heart defects occur in about 40% of the Down syndrome population. God blessed us with an amazing heart surgeon, and He has seen us through each new challenge. Benjamin now has a healthy heart!

  • People with Down syndrome are more likely normally developing individuals than they are different. There is a great diversity within the population in terms of personality, intelligence, appearance, emotions and attitude. Benjamin cannot and should not be put in a box. He is his own unique person, lovingly created by the same God who made you and me!

  • Thousands of people with Down syndrome are livng their lives without fame or fanfare and transforming their communities just be being there. Our son is already making a difference in the lives of many people.

  • Individuals with Down syndrome may be identified by physical characteristics which may or may not be present themselves in any one individual. One such characteristic is the beautiful almond shaped eyes. Benjamin does have beautiful eyes, but when we look at him we don't see Down syndrome, we see our son.

  • Down syndrome can occur anywhere in the birth order (first, middle or last). It occurs evenly in boys and girls and in all races, nationalities and ethnic groups. Benjamin is an awesome big brother and is adored by his baby sister!

  • On standard IQ tests, children with Down syndrome most often score in the mild to moderate range of mental retardation. These tests do not measure many important areas of intelligence, and you will often be surprised by the memory, insight, creativity, and cleverness of these children. Benjamin has surprised us many times, and we are so proud of him!

  • About 80% of babies with Down syndrome are born to mothers under the age of 35. I was 5 days shy of 27 when my son was born.

  • The medical term for Down syndrome is Trisomy 21. It is so named because there is an extra chromosome associated with the 21st pair of chromosomes. And we love all 47!

  • About 6,000 babies with Down syndrome are born in the United States every year. The national population of individuals with Down syndrome is estimated to be 350,000. At first it was easy to ask "Why me?" However, our lives have been enriched through this journey of raising a child with Down syndrome, and we are so grateful to have Benjamin as our son.
(*Information taken from the Down Syndrome Association of Tulsa 2010 calendar)

Tuesday, August 27, 2013

Dream Come True

What do you want to be when you grow up? This is a question that every child is asked throughout their years of childhood, the answer to which may change from year to year as they develop and mature. I remember the many answers I had to this question during my own growing up years: singer, writer, teacher, actress, veterinarian (only for a short time until I realized I would actually have to do things that involved blood and needles, not just play with animals all day)! While many things from this list still ring true to the passions of my heart, there is one answer that has always been deeply rooted inside of me, unchanging amid the many changes of childhood and adolescence. What do you want to be when you grow up?—a Mommy!

As a teenager I would have told you that my ideal life scenario would be to marry a pastor and be a stay-at-home mom. I envisioned the beauty and romance of being married to a godly man and ministering together, raising adorable and well-behaved children, and being a model homemaker as I spent my days in the bliss of motherhood—reading books, singing songs, baking cookies, making crafts, playing imaginative games, etc…In my mind it was a picture of true contentment, my “happily ever after” if you will.

This was my dream at sixteen. I am now thirty-one, and by most outward appearances I am living my dream. I did marry a wonderful and godly man. In our early years of marriage we were involved in youth ministry together. For the last two years he has been ministering in a pastoral role at the small church we helped to plant. He also has the opportunity to pastor young hearts in his new job as special education teacher at one of our local middle schools. I love him and respect him, proud of the man he is and is becoming. I am privileged to be a stay-at-home mom for our two precious children and believe that in time there will be more to come. I do spend my days reading books, and singing songs, and rocking babies, and cooking meals, and keeping house, and the list goes on and on… Yet in the midst of these blessings, I’ve had to come face to face with the restlessness of my own heart. For one thing, when I was sixteen I didn’t always take into account the amount of hard work and monotony that actually comes with maintaining a marriage, raising a family, and keeping a home. I also didn’t fully take into account that no dream fulfilled, no matter how beautiful or noble, can truly satisfy my heart—only Jesus can.

I was talking with my husband in the car awhile back and sharing with him some of the struggles I was experiencing. I was feeling lonely in my role as a homemaker. I was feeling disappointed that I was limited in the activities I could be involved in, especially at our church. I was feeling discouraged thinking I was missing the mark in almost every area of my life. I felt like I was somehow “missing out.” As is often his advice, Shawn exhorted me that I needed to ask the Lord for His perspective on things and allow Him to change my paradigm. Somewhere in the midst of this I recognized the irony of my own woes and had to laugh at myself. You said you wanted to be a pastor’s wife and homemaker. God has given you the desires of your heart!

Recently the Lord has been bringing me wonderful encouragement concerning my role and calling as a mother. Some of it has been through the heartfelt writing of other moms, some has been through spoken testimonies, and some has been through His own whisperings to my heart. But Jesus said, “Let the little children come to Me, and do not forbid them; for of such is the kingdom of heaven,” (Matthew 19:14). He has been lovingly reminding me of things I’ve known to be true but have sometimes lost sight of in the midst of the busyness and demands of each day. Mothers are given the extraordinary responsibility and privilege of raising up the next generation of world changers. We are called to nurture, teach, and disciple the little ones who are to inherit the Kingdom of God. Our words and actions are forming our children’s earliest framework for how they will view God; we are called to be a representation of His heart! We are entrusted with stewarding, for a season, the lives of the very ones who hold such immense value in His heart. These are the ones He created, the ones He poured out His blood to redeem, the ones who have been in His heart for all eternity. Motherhood is a high calling, but it is a calling that must be walked out in the ordinary, mundane, everyday issues of life. It is also a calling that can only be fulfilled as I set my heart to love and worship Jesus in midst of these very things. This is where true life and contentment is found.

We all have different dreams, but the truth is, no matter how big or small a dream may be, no matter how ordinary or extraordinary it appears, a dream in itself is powerless to bring lasting contentment, and it is ultimately meaningless if it is not rooted in relationship with Jesus Christ. There have been many great accomplishments in the eyes of man throughout history that will be forgotten in eternity. Yet there have been many simple, hidden lives, unnoticed by the world around, loving Jesus wholeheartedly and faithfully serving in the situations of everyday life that will be remembered and celebrated in heaven. This gives me great hope and renewed vision for how I want to live my life in this season and every season. When I focus my heart on Jesus in simple love and worship as I sweep Cheerios off the floor for the second time today, or as I change another dirty diaper, or as I sing “The Wheels on the Bus” for the hundredth time, it is noticed and remembered in heaven. When done in love of Him, no task is insignificant, and it carries the promise of eternal reward.  And as I speak words of life and destiny into my children and shower them with love and affection as we go throughout our very natural days, I am helping to paint a portrait for them of a supernatural God Who loves them crazy and has called them to be His own.

Yes, being a wife and mother is a dream come true, but the greatest dream of my heart is to be a whole-hearted lover of my Lord and Savior Jesus Christ and to grow in the knowledge of Him. It is only in the pursuit of this dream that I can be the wife and mother He has called me to be. This is the dream that must consume all other dreams. This is my true dream of happily ever after!


Tuesday, June 18, 2013

No More Excuses

Where has the time gone? During this last year of pregnancy and welcoming our second child into the world, Benjamin seems to have suddenly grown up before my eyes. A year ago he was still crawling everywhere, pulling to stand some with lots of support, and being carried all the time. Though he was three, he was still in many ways operating in a baby stage. Now at age four he is walking all over the place, getting into everything, and able to go from happy laughter to angry temper tantrum and back again in less than a minute! Shawn and I are extremely proud of the progress our son has made this year, but we are also becoming more painfully aware of some of his delays and behavior issues. While every child with Down syndrome will develop at their own unique pace, we are realizing that Benjamin could be farther along in several areas had we been more intentional. We had a heart to heart about this recently and reminded each other, “No more excuses!”

Raising a child with Down syndrome does hold many joys, but it also holds many challenges. There are no easy answers for anything. Intervention is essential for Benjamin to progress in his abilities, and this means extra work, extra frustrations, and extra tears from all parties involved. My little boy does not like change, and he fights hard against anything new. Since he is not yet verbal, it is often difficult to discern what his level of comprehension is in any given area. It's been easy to make excuses. It's been easier to play the “Elmo's World” movie than to deal with a temper tantrum. It's been easier to give him more assistance than necessary when he's eating than to clean up the mess he creates on his own. It's been easier to give him the soft spout sippy cup that he chews on than to fight with him to drink from an open cup. It's been easier to let him play with the familiar toys than to deal with the screams and cries when we introduce something new. The list goes on. Now, we don't always take the easy way out, and there have been countless times that we have worked hard with him over extended periods to develop new skills. However, we've realized that with the extra responsibility of a second child we've been more and more prone to let things slide. What's easier in the moment, though, does not serve Benjamin in the long run. No more excuses!

A few years ago a ministry team prayed over Benjamin while we were visiting the International House of Prayer in Kansas City. One person shared with us, “Others will say that he can't do (fill in the blank), but God says he can!” At the time I envisioned the “He can't...” coming from people on the outside. I pictured battles with school officials or kids from his peer group. However, the morning Shawn and I had our talk, I came to the sobering realization that I have been the guilty party in this! Even if I haven't actually said that Benjamin can't do something, it's been communicated by my own attitude and actions. I asked the Lord to forgive me and to give me greater vision for my son's life. As I tearfully shared this with Shawn, my sweet son threw his arms around my legs laughing and grinning from ear to ear. He looked up at me with delight in his little face as if to say, “It's OK, Mommy. I love you!”

As I said, there are no easy answers with Benjamin, but we know the One who holds all the answers. We may feel so inadequate in ourselves to face the challenges of raising a child with special needs, but the same God who knit Benjamin together in my womb lives inside of us, and He will supply all the grace we need to raise our son well. When I feel overwhelmed I must ask myself, “Am I accessing that grace?” In those moments it's good to remember what the Lord spoke to my heart during my son's first year:

I have chosen Benjamin for Myself, and I will release My glory through him.

His condition is not a tragedy but an opportunity for Me to show Myself strong.

Do not grow weary and do not lose heart for I have chosen your family

for such a time as this. I will yet wipe every tear from your eye and

restore joy where there has been sorrow. I AM God and I will do this,

so look to Me. Always look to Me.

No more excuses!

Sunday, May 19, 2013

You Could Marry Him Someday

“You could marry him someday.” Those words flashed through my mind completely unexpected and unbidden as I sat taking notes during a college class. I was in the first semester of my senior year and happened to be seated next to a freshman named Shawn, who I only knew on an acquaintance level. He had just leaned over and asked me how to spell a word (I wish I remembered what) that I thought any college freshman should have been able to spell. The shocking phrase passed through my head even as I was laughing inside at his poor spelling skills. He seemed like a nice guy, but he was younger than me and not on my screen as a potential match. Besides, I had already experienced two painful break-ups during my college years, and I was just trying to focus on finishing school and starting the next phase of my life, whatever that was to be. Wondering where in the world such a strange thought had come from, I dismissed it from my mind and tried to turn my attention back to the class lecture.

A few days later Shawn and I both stayed behind after class to ask the professor a question. In the process we struck up a friendly conversation that continued as we left the classroom and headed toward the cafeteria. I was amazed at how naturally our conversation flowed. We were able to talk as easily as if we had known each other for a long time. Over the next few weeks, it seemed as though we were running into each other all over campus. Granted, we were attending a small Christian university, but this was happening all the time. Conversation continued to come easily, and soon our “chance” encounters became “planned” encounters.

Our first date came soon after, though we were still technically just in a “friendship phase.” The campus held an event that year called “Create-a-Date” in which two couples would team up with $10 and three hours in a contest to see who could come up with the most creative outing. Afterwards everyone met back at the campus to share their stories and awards were given. We paired up with another couple with a budding romance and planned our evening. We started at a local dollar store to pick up some water balloons, a plastic bat, paper and water-color paints. We then headed to the grocery store to pick up some cookie dough. Back on campus the other couple got busy baking cookies while Shawn and I made water-color thank you cards for the local police department. With cookies fresh out of the oven and our original art we headed down to the police station. They were not quite sure what to make of us, but they enjoyed the cookies, and one easy-going officer hand-cuffed Shawn and me together while posing for the camera.

Next we headed downtown and played water-balloon baseball, ensuring that we each got a soaking! With one dollar to spare and another hour on our hands, we headed to McDonalds and ordered a hot-fudge Sunday, which we all shared. We played in the play yard and finished our evening by painting water-color portraits of our dates under the glow of the golden arches. We didn’t win any of the awards, but we had a great time and made some lasting memories!

It wasn’t long before the “friendship phase” officially transitioned into an exclusive dating relationship that lasted for the next two years. Then, on December 18, 2005 I walked down the aisle and married my best friend in the whole world. To make the day even more magical, we had chosen to save our very first kiss for the altar. We knew we didn’t have to, but we wanted to, and I would never go back and change that wonderful moment! After the pastor told Shawn “You may kiss your bride,” and our lips finally joined, my new husband unknowingly did a hop of joy, and the pastor encouraged him that he better kiss me again!

At the time of this writing we are in our 8th year of marriage, and we have two beautiful children. I am more in love with Shawn now than ever, and I feel so very privileged to spend the rest of my life with my best friend, an amazing man, husband and father. I’m so glad that “You could marry him someday” went from a strange possibility to a beautiful reality!

Sunday, February 10, 2013

Step by Step

We have waited over three and a half years for this milestone, and even so, it is not yet fully complete. When I learned that I was pregnant with our daughter Joelle at the beginning of July 2012, one of my initial concerns was, “How can we possibly get Benjamin walking before then?” I addressed this concern with his physical therapist (P.T.), and she assured me that this would be our main focus throughout my pregnancy. The issue of walking became a regular prayer request in our home as well because, naturally speaking, it looked so unlikely that Benjamin would reach this milestone any time soon. He was very content to crawl everywhere, and he was still resistant to being held in a standing position, though he was getting into the habit of pulling to stand on furniture when it was his idea. I also had a growing concern about lifting him, especially since I had some complications with a low-lying placenta arise at the end of my first trimester. Thankfully, though, that issue resolved itself within the next few months.

In August Benjamin began attending a school program two mornings a week that is specifically designed for three-year-olds with developmental delays. It is held at one of the local elementary schools, and besides classroom activities, he receives on-site therapy with the school’s physical therapist, speech therapist and occupational therapist. He adjusted well to the program, and Shawn and I were so relieved that he would be having added intervention to help him with his development. The weekly in-home therapy we received through Sooner Start had ended in May when Benjamin turned three. A month into the school year, though, I realized that he needed more than just four hours a week of interaction with other children. In the weariness of pregnancy, I realized that I needed more breaks as well. So, I looked into the local Head Start child care program and began the process to get him enrolled. I attended Head Start as a child and had a positive experience, so I was optimistic about taking this route. Shawn and I thought it would be very good for our son to be around a larger group of typically-developing children. The agency was willing to tailor things for Benjamin’s unique situation and allowed me to sign him up for only two mornings a week. They also assured me that an aid would be provided for him to assist with his specific care needs. He was able to start the program near the end of October, and after a rocky first few days, he got settled in and now loves to go! He shares an aid, who he adores, with another little girl who has cerebral palsy. She also happens to be a member of his class at the elementary school. Our son is now receiving intervention and reinforcement of the things we are working on from multiple sources!

We continued to work hard in physical therapy. Our biggest hurdle was figuring out how to teach Benjamin the concept of placing one foot in front of the other to take steps. He was cruising the furniture stepping side to side by this point, though he had a tendency to drag one leg behind the other. One day in therapy his P.T. and I both sat down feeling perplexed by this issue. After the progress we had been making, it felt like we had hit another wall that Benjamin was unwilling to scale at this point. We had tried so many different things to motivate him to take forward steps, all to no avail. In one final attempt, she had me sit on a stool several feet away and start encouraging Benjamin to come to me. In that moment, we suddenly had a breakthrough! Benjamin is still very much a Mommy’s boy, and even though he is with me most of the time, this became the motivation he needed to move his feet forward with her assistance. We were both ecstatic as he smiled and laughed and moved in my direction! In that brief minute, something flipped in his brain, and Benjamin grasped the concept of stepping forward instead of side-to-side. I call it Divine intervention!

With this large hurdle behind us, we were now ready to introduce Benjamin to a child-size walker. His P.T. pulled one out soon after and had Benjamin practice standing with it while holding the handles. He wasn’t sure what to think of this new contraption, and, as usual, he was resistant to the change. However, it didn’t take long before he started to grasp the concept of how to use the walker to his advantage. Shawn and I were amazed at how quickly he took to this new-found skill. Before long he had learned to pick up speed and to re-adjust himself when he bumped into something. Shawn started taking him on walks around the block, and though it was often slow-going, Benjamin loved every minute! He was experiencing a new level of independence, and his strength and stamina were increasing. Meanwhile, we continued to work on having him walk with our assistance. We practiced at home almost daily. I would sit on one side of the living room with his favorite toy (a See-and-Say) in hand and spin it while Shawn supported him at the other end of the room and helped him move towards me. Bit by bit, he required less and less support. The main thing was helping him to gain his confidence. Sometimes our little guy would hold his own hand as he took shaky steps towards me. Though I’m not sure that it helped him physically, he definitely found a level of psychological support using that method! I was so relieved that I could now hold Benjamin’s hands and walk him places, since he had become too heavy for me to carry around.

Over the Christmas holiday break, Benjamin’s P.T. encouraged us to take the walker to the mall for practice. It wasn’t until we got there that I realized we had never had our son use his walker in this large of a public setting before. Shawn had already considered that fact and was feeling a little apprehensive. Within moments we were very much aware of all of the stares from passers-by. Though we didn’t like to admit it, there was a sting of embarrassment as we realized again that what has been normal for us is so far from normal to the general public. However, we took things in stride and encouraged our son along. Meanwhile, Benjamin was having a great time! We were shocked and thrilled that he was able to go the entire distance around the mall. We had to laugh inside by the end of the outing. A three-year-old with a walker is not a sight you see every day, much less a three-year-old who is as enthusiastic as our little boy behaved. He let out shouts and squeals of delight the whole way around the mall. We really couldn’t blame people for looking, and we were so proud of him!

By the beginning of the New Year, it was becoming obvious that Benjamin’s season with the walker would be a short one. In fact, we just retired it for good on February 3! The month prior, on January 8, there was much rejoicing when my little boy took independent steps towards me during his physical therapy appointment! Shawn was thrilled to hear the news, and we were able to get him to take some more independent steps during our practice times at home over the next week. January 14 was another magical day for us. When I picked up my son from Head Start, his teacher told me that he had taken 6-7 steps on his own initiative! I couldn’t wait to tell Shawn when he got home! Benjamin and I were playing with a toy in end of the living room closest to the front door when my husband walked in. I immediately told him the good news and then stood Benjamin up and encouraged him, “Walk to Daddy!” With a huge grin on his face, our little boy took 7-8 steps all by himself into his Daddy’s waiting arms. It was the first time he had ever walked to Shawn before. A very proud father enthusiastically exclaimed, “Yay! You walked to Daddy!” Then with tears in his eyes he repeated, “You walked to Daddy.” I started to cry too. There are no words to express the joy and gratitude that rose up in both of our hearts at that moment. We had waited and waited and waited for this, and it was overwhelming and a bit surreal that it was finally happening.

That was less than a month ago, and our little champ continues to make progress. He’s still not walking independently on a regular basis, but we know it won’t be long. As we eagerly anticipate the arrival of our beautiful daughter at the end of this month, I am filled with gratitude as I look back and consider how far Benjamin has come over these last several months. What felt so impossible has become a reality. Our prayers have been answered, and all the hard work has paid off as we keep taking things step by step!
Coming out of a therapy session.
Wearing his special Theratogs that help support his low muscle tone and his orthodic braces that give him ankle support.


Tuesday, January 1, 2013

Our Family Christmas

It's hard to believe that another Christmas has come and gone! Christmas 2012 was a new experience for the Hemminger family as it was our first to celebrate at home. Typically we make the trip up to MN for a whirlwind of family gatherings and fun, but I did not feel equipped for the 12+ hour drive in my third trimester of pregnancy. (With all the crazy weather they've had, we probably wouldn't have made it through anyway!) So, even though we missed seeing our extended family, we were able to enjoy a quiet, family celebration in the comfort of our own home.

Shawn was probably the most eager of our clan to open presents Christmas morning! (He had been bugging me almost daily for weeks "Can we open some early?") Benjamin has yet to get excited about the concept of unwrapping presents, though he had the majority of gifts under the tree. We spaced them out for him, letting him play with his familiar toys inbetween. We stayed in comfy pajamas for most of the day and dressed up later to enjoy a small Christmas feast for three. (I guess you could say for four, because by Joelle's kicks, she seemed to enjoy it quite a bit too!)

After supper we read the Christmas story together, first from Benjamin's board book Bible and then from the Gospel of Luke as our son played on the floor. Being pregnant this year made Christmas extra meaningful for me. As I felt my baby's kicks, I thought of Almighty God made flesh, kicking in His own mommy's womb. The miracle of His incarnation took on a greater reality for me, and I was struck again by the extravagence of His love and the depth of His humility as He took on our humanity so as to redeem us into a new identity as sons and daughters of God. Jesus truly is the greatest gift! It is with great expectation that we welcome this new year, excited to see all that He has in store!

Time for presents!

Who's more excited--Benjamin or Daddy?

Lookin' good!

Two amazing movies--Smile As Big as the Moon and October Baby!
New books from Mommy and Daddy
The face of cuteness!
Daddy using Benjamin's newly assembled toys as props for his action figures. (For fun I put a Batman action figure in his stocking and opened up a whole new can of worms!) I wish there was a way to include the sound effects!
Our Christmas feast!
Happy New Year from our family to yours!