A Time to Cherish

I wrote this a week ago...

“One of the best things you can ever do for your son is to have another child.” I heard these words on several occasions from Benjamin’s physical therapist before that happy day in July 2012 when we learned I was finally pregnant for the second time. We had always planned on having more children; having a child with Down syndrome neither discouraged nor motivated our desire. However, I was (and still am) excited about the benefits Benjamin will receive from having a sibling. On the flip side, though, his therapist also told us to expect that new layers of grief would emerge upon the arrival of a “typical” child. Watching our next child naturally develop would cause us to recognize more and more just how hard our son has had to work to meet developmental milestones.

During the months I was pregnant with Joelle, I was intentional to ask the Lord to speak to me about her life. I remember the day He whispered to my heart, “Enjoy her! Enjoy the process of growth. She will be a healing balm.” As we are now quickly approaching the celebration of her first birthday at the end of next month, I am keenly aware of how true all of the dynamics mentioned above have been—benefits, grief, joy and healing.

The healing began early in the morning of February 28, 2013. The evening before, I cuddled Benjamin next to me on the couch as he drifted off to sleep. It was a bittersweet moment as reality hit that this was the last time it would just be Benjamin and Mommy. Starting the next day he would have to share me. I held him close and soaked in the moment.  I could barely sleep that night, due in part to the discomforts of late term pregnancy, but even more so because of the anticipation of knowing we would soon meet our baby girl! (Due to my necessary C-section with Benjamin, I would have been hard-pressed to find a hospital or provider in our area who would allow me to try a vaginal delivery. The C-section was scheduled for one week prior to my due date). When the alarm went off before the crack of dawn, I was eager to change into my comfy fleece pants and pull-over and head for the hospital. My mom, who had arrived the week before to help with the new baby, sleepily saw us out the door. “Dana, you’re glowing!” she exclaimed.

 Shawn and I talked and prayed as we made the drive across town. It was such a new feeling to know we were having our baby today in contrast to the shock of Benjamin’s early delivery nearly four years before. As the surgical team began to prep me for the C-section, I prayed that Jesus would hold me and surround me with His peace, for I clearly remembered the terror of my previous experience. While the spinal was being administered, a calmness rested on my heart, and I knew this time it was going to be so different. Soon my newborn daughter’s shrill, strong cries pierced the air, and I smiled confidently that she would have no difficulty breathing on her own. It was hard to contain my excitement as she was cleaned, weighed and measured. I was going see my baby right away this time! My heart felt like it would burst when Shawn held our swaddled daughter by my head so I could look at her and kiss her face while my C-section was being completed.

Once in my hospital room I had only a short wait before little Joelle was placed in my arms. My mom walked into the room less than a minute later, her face beaming, as I serenely said, “I just got her!” It was a beautiful moment. There were no tubes, wires or ventilator to hinder my view of her tiny features. Instead of touching little hands and feet in a NICU bed, I had my baby where she belonged—cradled in my arms, close to my breast. It was a very healing day!

I won’t go into all the details about the contrasts that accompanied the next several weeks as Shawn and I had the first time experience of what it was to care for a healthy newborn. Benjamin’s early months were mostly spent in the hospital, coupled with his extreme fatigue as a result of the holes in his heart. I was also mostly recovered from the C-section before Benjamin was able to come home. Joelle was a high-maintenance baby from day one, and we were exhausted! While I was pregnant, all I could think about was how glorious it would be to bring a healthy baby home right away. I was so thankful that she was healthy and that she was home, but I had underestimated the degree of work and energy that would be involved, especially while recovering from major surgery. I used to have to wake Benjamin up to nurse. Now I was praying that my baby would sleep for just a little bit between feedings! It took a while before we got into a rhythm and life began to have a normal balance to it again.

During these last ten and half months, I feel like I’ve had to learn to be a parent all over again. I know that every child is different, but I believe that when you have a child with a disability the differences are so much more apparent. It has been both thrilling and heart-wrenching at times to watch Joelle’s natural progression of development. As she will suddenly master a new skill, I will remember the great amount of time and effort involved for Benjamin to reach the same milestone. The day I first offered her a sippy cup I was shocked as she immediately latched on and began to suck. (To get a fuller picture of how monumental this was for me, see my June 2011 blog post “Lessons from a Sippy Cup”). I have been amazed at her alertness and curiosity as well as her motor and language development.  Last week I was reading a book to her and pointed at a picture on the page. Without skipping a beat, she extended her index finger and pointed at every page in the book as we continued to read. I wasn’t trying to teach her to point; she just did it. I was a bit dumbfounded because one of the skills Benjamin’s speech therapist and we are currently working on is to teach him to point!

With speech in mind, there was the amazing day when Joelle was eight months old, and she spoke her first purposeful word. She was sitting in her high chair while Shawn, my mom and I were seated around the table. Looking at me, Joelle began to say, “Mama! Mama!” and clearly wanted me to hold her. It was simultaneously one of the most beautiful and painful moments of my life as a mother.  I had waited over four years to hear that word spoken to me, and while my heart melted to hear it from my baby girl, my heart broke that I am still waiting to hear it from my son. I know it will come in time, just as so many other things have before.

Though they are nearly four years apart, many of my interactions with Benjamin and Joelle are very similar at this point. The same games and songs bring delighted squeals and laughter from both. The same books and movies capture their attention. The same toys are played with (and fought over). There are moments when I want to laugh and cry, such as the day when both children sat on the floor chewing on a sock! In those moments, I have to choose to laugh. In those moments I have to remind myself to enjoy and cherish the present. The developmental stages that have felt so dragged out with Benjamin will continue to progress over time, and I don’t want to look back with regret that I didn’t savor this time when my children are young.

I also have to remind myself how very far my son has come since the arrival of his sister. I remember so well the day I was still recovering in the hospital, and Shawn brought Benjamin in to see me with the news that he had just walked unassisted all the way from the parking garage! It was a huge turning point and answer to prayer. He is now walking around everywhere and gaining more and more independence. He is learning to feed himself and play with more focused attention. He is communicating through some sign language, and is thrilled at attend Pre-K every morning. He is branching out to new relationships and becoming more and more of his own little person. I am so proud of him!

As anticipated, the adjustment to having a sibling has been a challenging one for Benjamin, but overall he has done better than we expected. His initial response when we brought Joelle home from the hospital was to ignore her. (He even ignored me for the first day, which I never would have imagined)! In time his curiosity won over, and he began to look at her and touch her, often smiling and laughing as he did so. For the most part he has been gentle with her, though there has been some hitting along the way. He is also careful to step around her when she’s playing on the floor. There is definitely jealousy, too, as he adjusts to sharing Mommy and Daddy’s attention, not to mention his toys! However, none of his responses have been any different from what would be expected from any first child. Joelle continues to be fascinated by her big brother and everything he does. She is so eager to follow him and try to do whatever he’s doing. This will really get interesting once she begins walking! I look forward to witnessing the continual unfolding of their relationship.

The contrasts between my two beautiful children will become more and more apparent as time goes by, but I am reminded that I need to celebrate them both at exactly where they are and for who they are. Even as I drove to the coffee shop this morning with this blog already beginning to compose itself in my mind, I found myself praying, “Lord, help me be free to be me. Help me to be who You intended for me to be.” How quick I can be to compare myself with others, either feeling that I am coming up short or wondering why they are struggling with an area I’ve had grace to overcome. When I am aware that I am going down this road, I ask the Lord to forgive me, but I will often find myself walking there again. I am so thankful for how incredibly patient He is with my weaknesses. He is neither offended nor surprised by them, and He is committed to helping me to grow and overcome. My children remind me that we all have different areas of strength and weakness, and we need each other. We are to bear with each other in our weaknesses and rejoice with each other in our victories. Above all, we are called to love. As I raise my children I want to maintain the perspective that the greatness of their lives will not be measured by their level of abilities but by their ability to love. My greatest dream for them both is that they will love Jesus, the Lover of their souls, with all that they are and that they will extend that love to those around them. This will be a life well-lived, a life to be cherished!  

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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!

 

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)



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!

 

 

 

 

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!

 

 

 

 

 

 

 

 

 



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 8^th 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!