Mommy-Son Date

At the end of the school year, Benjamin was awarded a gift card to Braums. With a new baby just around the corner, I want to be intentional to get some one-on-one time in with my kids before Josiah arrives. So, during the first week of summer vacation I took Benjamin out for an ice cream date after his speech therapy appointment one afternoon.

 

 

 

My kids both inherited my sweet tooth, so my son was more than thrilled to dig into his dish of soft serve chocolate and vanilla swirl frozen yogurt while I enjoyed a small hot fudge sunday. I used one hand to steady his dish while he fed himself (big boy!), and I ate with the other, trying to keep up with his pace. I knew that if he finished too quickly, there would be tears of disappointment and a reach across the table to raid Mommy's bowl!

 

While we savored our sweet treats, I talked to Benjamin from across the table, thankful for a chance to give him my undivided attention and taking joy in watching him so obviously enjoying himself. I felt a twinge of sadness as well, though, wishing I could actually have a conversation with my six-year-old. I want to know his thoughts and feelings. I want him to be able to tell me about the things he's learning and discovering. I long to even just hear the word "Mommy" spoken from his lips.

 

  

 

I still believe that Benjamin will speak one day; I just never expected the wait to be this long. In the meantime, though, he finds his own ways to communicate through expressions, gestures, sounds, and a tiny bit of sign language. I reminded myself the important thing was that we were spending some quality time together. There is no doubt that Benjamin knows he's loved, and he clearly communicates his love in return. After all, who could possibly resist that smile!

 

 

 

 





I Didn't Know

Benjamin will turn six years old next week-six years old! I remember when he was only six days old, confined to his NICU bed as my arms still ached to hold my first born for the first time.

I remember when he was six weeks old, only recently home from the NICU and (unbeknownst to us) with a heart surgery only two weeks away.

I remember when he was six months old, my little cuddler who loved to nurse, and his plump little arms and legs full of rolls that resembled the Michelin Man!

When my son was only six days old, I felt so lost and bewildered. I had no idea what the next six days would hold, or the next six weeks, and certainly not the next six years! All I knew was that we had begun a completely unexpected journey into "Holland," and I was scared. 

There are so many things I know now six years later that I didn't know then. I wish my 33 year old self could go back in time and assure my 27 year old self that in the midst of the challenges and heartache, everything really was going to be OK. I would have told her that the journey forward would be full of discovery about her beautiful son, about herself, about life, and most importantly, about God. I would tell her that healing would come, and joy would come, and incredible testimonies would take place. I would tell her that the love she felt for this helpless little baby she only barely knew would continue to grown in strength and intensity, and she would not be able to imagine life without the little miracle in front of her. I would tell her it was OK to grieve and cry and that God would meet her in powerful ways in the midst of her pain. I would tell her stories of the little boy Benjamin would become because now I know...

...the contagious smile and full body, affectionate hugs and giggles that have brightened every day...

...the thrill of accomplishment, delight, and thanksgiving as he reaches each new milestone he's worked so hard for...

...the amazing community of people we've had the privilege of meeting as a result of our son having Down Syndrome...

...the little boy who loves music, his See n' Say and stuffed monkeys...

...the eager pre-school student who waits with excited anticipation for his bus to arrive each morning...

...the big brother who paved the way for his little sister Joelle and his soon to arrive little brother Josiah...

...the child of God who so effortlessly connects with the heart of heaven...

...the little playmate who adores his Daddy and his Grandma...

...the son who I love with every fiber of my being and who loves me in return...

...I could go on and on and on. There are so many things I didn't know six years ago that I am so thankful to know now. Have there been challenges? Absolutely--some minor and some profound. (On that note, though, I experience daily challenges with my beautiful, typically-developing, and perfectly healthy toddler!) I didn't know that I would become a stronger person as a result. I didn't know that my marriage would grow even deeper as a result. I didn't know that I would experience the heart of God in ways that I may never have encountered as a result. I didn't know the privilege it would be to raise this amazing little creation named Benjamin...I also didn't know that my broken pieces, put into written form through this blog and now through my book as well, would give me the opportunity to connect with thousands of people across the nation and around the world. To you, my readers, I want to say that I count it a special privilege to be able play a small part in your lives. Thank you for allowing my son and me into your home and into your hearts! 

Happy Birthday, Benjamin! Every day with you gives me reason to celebrate!

Perfectly Planned

As human beings, we love to make plans. We plot and dream and reason, crafting our ideas in our mind's eye and then pouring our energy into making the plans become a reality. The funny thing is, despite all of our efforts and imagining, reality typically seems to unfold somewhat differently than the well thought-out plans of our hearts. This blog has been writing itself in my mind all morning. Let's see if it comes out the same way as I have been imagining!

I always planned on starting a family before age 25. Since I was married at 23, my plan seemed likely to be fulfilled. However, despite all our planning and scheming, the pregnancy test didn't come back positive until my 26th year. I always planned on having the cute pregnancy pics taken; the ones that would forever commemorate the gift of life growing inside and the love of husband and wife that brought that life into being. However, I didn't plan on the abnormal quad-screen test early into my second trimester or the series of specialized ultra-sounds. I never planned on the necessary pre-term delivery and long hospital stays. I DEFINITELY didn't plan on giving birth to a child with Down syndrome only a few days shy of my 27th birthday. And yet, nearly six years later, my life is more beautiful with the gift of my first born child Benjamin, 47 chromosomes and all! His smile, his hugs, and his laughter warm my heart every day, and the joy of loving him, as well as the many lessons he has taught us, have far out-weighed the grief over his difficulties and delays.

 

 

Shawn and I planned to try for a second child after Benjamin's second birthday. We never planned that our son would be only a few months shy of turning four before we would welcome that child into the world. I always planned on having all my babies by age thirty, yet here I was giving birth near the end of my 30th year and still dreaming of more children to come. In hind-sight, though, the timing was perfect. Benjamin literally started walking independently during the few days that his sister and I were in the hospital. I planned on having the beautiful pregnancy pictures taken the second time around, yet I didn't plan on the complications with a low-lying placenta that arose near the start of my second trimester or the frightening few months of bleeding and constant fatigue. Yet, in early 2013 I gave birth to a beautiful, healthy baby girl. Her very presence has brought healing to my heart. Her affectionate and lively personality lights up my days and keeps me on my toes! She is such a precious gift.

 

 

 

 

Last December, I stood in the bathroom with shock and awe as the pregnancy strip registered positive. We weren't planning to get pregnant; I wasn't expecting to be expecting. Yet here we are, preparing to welcome our baby boy Josiah in early August. This pregnancy has been an unexpected gift and relatively smooth-sailing. I finally got the pregnancy pictures I had previously planned for when our neighbor asked to take our portraits for his photography class. It definitely didn't unfold the way I planned, but I am so grateful. I can hardly wait to meet my sweet son and tackle the rewarding challenge of parenting three small children!

 

 

 

Interestingly, though, we always planned for two boys and a girl. Long before we conceived our first child, three names were dropped in our hearts: Benjamin, Josiah, and Joelle. They have always felt so real to me, before they ever came into being. I suppose that's because they were already very much alive in the heart of God, and He knew the perfect time for each of them to make their debut in history (His-story). I always assumed they would arrive in the order we received the names, but I was thrilled beyond description when the ultra-sound technician announced during my second pregnancy, "It looks like a girl!" I am equally thrilled this time around to welcome a son, as I was the first. I always planned to love my children, but in this area I planned too little. How could I have even begun to anticipate the depth of love I would feel for each one? Life has definitely not gone just as I planned, but the reality has unfolded with such grace and beauty.

 

There is a place for planning. We need vision, and we need direction. Most of us have heard the well-coined phrase, "To fail to plan is to plan to fail." However, I think the greatest plan is to keep my plans yielded to God's plans, Whose vision is eternal and Whose wisdom is supreme. I'm reminded of Proverbs 19:21, Many are the plans in a person's heart, but it is the Lord's purpose that prevails."

 

Tomorrow we will celebrate Resurrection Sunday. In the morning we will read Benjamin and Joelle a board book that presents a simple rendition of Jesus death and resurrection. Instead of a traditional Easter basket, they will each receive a stuffed lamb and a stuffed lion as we explain that Jesus is the Lamb of God who died for our sins, and He is the victorious Lion who rose from the dead and is coming back for us someday. God's plans are perfect and His ways beyond our natural ability to comprehend. I love my children intensely. I would quickly lay down my life for each of them. My love is in no way greater or superior to the love of the very Author of life and love. Yet His perfect plan was to send His perfect, beautiful Son to die for me and to die for you. No human planning or reasoning, and no principality or power could have ever conceived of this plan of Almighty God to send His flawless Son to earth as a helpless baby, to grow up in obscurity in a small Jewish town learning the trade of carpentry, laboring and sweating, and experiencing the weakness and fatigue common to man. No one could have imagined the entire hope and redemption of the human race hanging on the master plan of God to have His Son hang on a cruel, Roman cross and suffer a criminal's death in order to overcome our sin and death and to be resurrected three days later. God's plan made no sense to the natural mind of man, and the coming of the promised Messiah unfolded so contrary to expectations of His people. However, the promise of Jesus' cross and resurrection is the foundation for every other promise of God in all of history. The seeming foolishness of the cross was in fact the very wisdom of God and is the anchor of our hope, our redemption, and our freedom. Today I am reminded that Jesus' first coming and the promise of His second coming is the assurance that no matter how circumstances may unfold in this life, God's eternal plan is ALWAYS perfect!

 

 

 















"Listen to Your Mother"--Passions Combined

What do you do when some of your specific passions come together in one setting? For me, I have been doing a happy dance! Before I share the reason for my rejoicing, though, here's a bit of background...

I have always been passionate about writing. My first book attempt came in 5th grade with my pencil written story entitled "The Land of the Unicorns." I had high hopes of a published children's book with colorful and engaging illustrations and a wide audience of readers. My story never made it off of the notebook paper, but at least I was starting to dream! Since then the love for writing has only increased with each passing year. There is something so magical about carving out words and sentences with description and feeling, communicating my thoughts and passions through letters on a page and having the opportunity to connect with the hearts of readers, some of whom I will never meet face to face. Since beginning this blog and later publishing my book, I have been especially passionate about sharing our amazing journey in the world of "Holland" as we raise a child with special needs. It is my desire to create greater awareness concerning Down syndrome, to demonstrate the beauty and value of children who happen to carry an extra chromosome, and to share the goodness and faithfulness of my Savior every step of the way.

We will now move on to passion number two. I was very much one of the shy kids in my school growing up. I was soft-spoken and easily intimidated by my peers. When I enrolled in the required speech class during my junior year of high school, I did so with fear and trembling. When the time came for me to deliver my first speech, I walked up to the front with clammy hands and a pounding heart. However, as soon as I opened my mouth and the words began to form on my tongue, I found myself coming alive and made the shocking discovery that I absolutely love public speaking! That love evolved into a passion for theater in college, during which time I performed in three musicals and two stage plays. As an adult I have enjoyed various opportunities to preach, teach, and lead worship in a number of settings, and while I may still experience butterflies in the stomach at times, I love every moment of it!

So...back to my happy dance! In January I was introduced to an annual show called "Listen to Your Mother." To quote directly from their website, "The mission of each LISTEN TO YOUR MOTHER production is to take the audience on a well-crafted journey that celebrates and validates mothering through giving voice to motherhood–in all of its complexity, diversity, and humor–in the form of original readings performed live on-stage by their authors" (http://listentoyourmothershow.com). This year, shows will be held in 39 cities across the U.S. including Oklahoma City. Each live show is recorded and broadcast on the LTYMShow YouTube channel over the summer. My mother, also a passionate writer, and I were encouraged to submit a piece of original writing for the OKC show and wait to see what would happen. As soon as I learned about this event, something inside of me leaped and said "Yes! I want to do that!" I was thrilled when we were both invited to come and audition our pieces for an opportunity at landing a spot in the production. A few weeks ago we made the three hour drive to OKC on a beautiful sunny day for our 10 minute audition slots. It was worth every mile! (Of course we were sure to stop somewhere for a sweet treat before commencing our journey home). I was glowing later that night after receiving a phone call offering me a spot on the show and learning that my mom had received a similar call!

The next month will be very busy with multiple trips to OKC to meet with fellow cast members, rehearse the show, and culminate on the actual production day at Will Rogers Theater on April 26 at 2:30 p.m. I feel extremely humbled and honored to have this unique opportunity to join my voice with the voices of other mothers around the nation and share a little portion of my journey with an audience I would have never had the chance to touch otherwise. Getting to share this experience with my own mother makes it extra special!

To learn more about the Listen to Your Mother Show and this year's OKC cast, follow the link below:

http://listentoyourmothershow.com/oklahomacity/2015/03/14/2015-cast-announcement-ltym-okc/

From Heaven's Eyes

This week I came across a startling article on LifeNews.com entitled "7 Incredibly Shocking Quotes from Planned Parenthood Founder Margaret Sanger." As a white supremacist and a eugenicist, she was determined to purge society of those she referred to as "human weeds," and the "dead weight of human waste...human beings who never should have been born at all." She had a deep disdain for minority groups, especially African Americans, as well as those who were poor, those who had immigrated to America, those who had disabilities and those who had diseases. She was even quoted as saying, "We do not want word to go out that we want to exterminate the Negro Population." The following quote sums up her main goal in founding Planned Parenthood. "Birth control is nothing more or less than...weeding out the unfit." Today, the money-making abortion giant has built its bloody empire off of this woman's evil ideals.

My heart was filled with grief as I went on to watch a short video attached the article. It shared statistically that, while African Americans make up 13% of the U.S. population, they account for 30% of abortions. Abortion is currently the leading cause of death in this precious community, greater than all other causes combined. As I sorrowed over these horrible realities, I though of my own son. While individuals with Down syndrome make up a very small percent of the overall population, the abortion statistics are sky high, with over 90% of women who receive a pre-natal diagnosis choosing to end the life of their child. All I could think was, "How many lives have been destroyed? How many destinies have been lost?" The numbers are staggering.

Later that same day Shawn and I attended an incredible community worship service called "Releasing the Sounds of Heaven." I was deeply impacted by a beautiful group of people who I didn't even know would be there. At least 17 young people, ranging in ages from young adulthood down to childhood gathered at the front, forming a small band and choir. Most of them were either African American or Native American. The most incredible thing is that they are all connected to the same family through adoption. An elderly Caucasian woman who has had these children on her heart since her childhood has adopted the majority of them, and her daughter has followed in her footsteps, adopting several herself. One of the lead singers introduced their group and shared that though they all came from broken backgrounds, they are not allowing that to hold them back, but are stepping into the plans and purposes of God in their lives. I later learned that they all get together a few times a week to spend time with each other and to worship Jesus through their original music. I found myself weeping as I looked at all these beautiful faces, each one created in the image of God, whose lives were not destroyed and whose destinies have not been lost. Their birth mothers chose to give them life, and some extraordinary families have seen the treasure in each child, taking them in as their own and raising them up to be world changers!

Once again, I think of my sweet son Benjamin, who just happens to carry an extra chromosome. There are those in the world who would see him as "defective" or "damaged." There are those who would even go so far as to say that he should have never been born. However, my son's life looks very different from Heaven's eyes. According to Ephesians 1:4, God "chose (Benjamin/insert your own name) in Him before the creation of the world to be holy and blameless in His sight." There is something unique that my son brings to the world that no one else can bring. There is a portion of the heart of God that cannot be seen in anyone else than him. This is true of each and every life. Sadly there are many lives that never discover their God-given destinies, but this does not change the fact that each individual carries purpose, even from the womb. May we learn to recognize, honor and value each an every life through Heaven's eyes!

The picture below is a few years old now, but I believe it captures the beautiful reality of the grace on my son's life to connect with Heaven and the God Who loves him so much. Benjamin, may your life always resound with the testimony of the goodness, faithfulness, power, and eternal love of our Lord and Savior Jesus Christ!

 



Time to Dream Again

It's time to dream again...

Yesterday a friend shared a video with me on Facebook titled "They Said This Girl With Down Syndrome Would Never Sing. Her Response? Stunning." This beautiful, twelve-year-old girl has overcome the common hindrances associated with Down syndrome, including low muscle tone (which affects the mouth as well), a low-pitched voice, and poor short-term memory, and has worked diligently to learn to sing. In the video she sang a beautiful song with a fairly broad vocal range and hundreds of memorized words; she even had a sinus infection while doing so! She has defied the limits that others have placed on her due to her genetic condition, and she desires to inspire as many people as possible.  As the video came to a close, I suddenly realized how desperately I was in need of this encouragement.

When you are raising a child with special needs, new layers of grief will undoubtedly emerge from time to time. Sometimes they hit as huge, crashing waves that feel as though they will pull you under. Other times you feel their impact as small ripples pressing against you as you walk through your very ordinary days. Lately, I've been experiencing the ripple effect...

I felt the ripples after Benjamin's recent bath time. I helped my big boy lay down on his towel that is almost too small for him as I dried him off and fitted him in a clean diaper. As I dressed my five-and-a-half year old, I encouraged him to assist me in the small ways that he is currently capable of doing. I found myself saying, "Benjamin, you need to learn to dress yourself. Mommy doesn't want to still be dressing you when you're ten." At the same time I wondered if I would be.

I've felt the ripples as Benjamin yells in frustration when he wants something or things aren't going his way. We have been trying to curb this behavior and encourage him to utilize the few communication skills he does have. My heart hurts for him. I know he desperately wants to communicate, and at times he probably feels so overwhelmed. I wonder when he will finally be able to speak his first word.

I've felt the ripples as I've observed his very limited interests in play, which often involve pulling the handle on his See n' Say or twirling a stuffed animal in front of him. I've felt them as he actively resists anything new, and I wonder when his play will finally begin to progress. When will he start using his imagination? When will he be willing to roll a ball back and forth for more than 30 seconds, or push a toy car, or build with blocks, or color a picture?

I've felt the ripples as I've watched my small toddler quickly passing her big brother in so many areas of development. How long will he behave as a very small child?

Sometimes the ripples are subtle enough that I don't even recognize that I've been confronted with grief again. Watching that inspirational video helped me to recognize where I've been and encouraged me to start dreaming again for my son. His present delays and challenges are not the final say in what his future will hold. His current limitations do not define his potential for growth. This seemingly endless season is just that--a season. It will pass. I've been reminding myself of how very far Benjamin has come in the last few years. I'm reminding myself of what a miracle his little life has been so far. I'm reminding myself of the many lives he's already touched just being him. I'm reminding myself of God's promises over his life. I'm reminding myself that the One who knit my son together in my womb is the God of his past, his present, and his future, and with Him all things are possible.

It's time to dream again!

 

Peers and Play

"TAG! You're it!" A gym full of four and five year olds run all around, shouting and giggling in a delightful game of freeze tag. Instead of using hands to tag each other, they wield giant foam pool noodles. The energy and excitement in the room is electric as they exert the bubbling energy that only a small child can produce. Among those running and laughing is an exuberant five-year-old named Benjamin, who happens to carry an extra chromosome. He squeals with unhindered joy as he makes his way around the gym, thrilled to be a part of the activity surrounding him. I wish I could have been there to see it!

When Benjamin returns home from school each day, I am quick to check his backpack, where his aid keeps a daily journal of his activities and behavior. A few days ago she wrote about the game of freeze tag during their gym class. She clearly communicated my son's excitement in the midst of it, commenting, "I wish you could have seen him!" My heart swelled as I envisioned my little boy taking part in a game with his peers and having so much fun doing so. Sometimes it's the little things that can be the most meaningful!

Benjamin is attending his second year of Pre-K, and he loves it so much! Next year we will transition him to Kindergarten, and we may decide to complete two years of that as well. We are letting him take his own pace, not in a hurry to push him through anything. His experiences in school, first as a three-year-old at Head Start and now as a student at a local elementary school, have been wonderfully fulfilling and relieving.

When he was still a small toddler, some other stay-at-home moms and I set up a weekly play group. We  initially met during story time at the library and realized our children were all very close in age. We took turns hosting the play time week to week. Benjamin was the only child with special needs, but I was happy to give him the opportunity to be around his typically developing peers and to have the opportunity for some adult conversation during the day! Our children were still young enough that they didn't really play with each other but were content to play side by side. In reality, the other children played while Benjamin sat and watched, sometimes twirling his small, stuffed gorilla by the arm or playing with a light-up musical toy. Though I enjoyed those times, I wrestled with some insecurities as well. It was difficult to see the numerous skills that the other children had easily accomplished, especially since so many of them were still on a distant horizon for Benjamin. Sometimes my mind would wander to the future when my son would be in school, and I wondered how the other children would treat him. Would he be a target? Would he be teased all the time? Would he have many friends?

I realize that no child is immune from being teased by their peers. I experienced teasing multiple times as a child myself. I know that my son is still very early into his school years, and I recognize that he will undoubtedly have to deal with poor treatment from classmates at some point, as all children do. However, I have been so pleasantly surprised thus far at how warmly Benjamin's peers have received him. When he was attending Head Start, he would be given an enthusiastic greeting from the other children upon entering the classroom. "There's Benjamin! Hi, Benjamin!" His year-and-a-half attending Pre-K has been just as encouraging. His classmates approach him almost daily, inviting him to play. He has had notes and pictures sent home with him from other students. Last year, his classmates would often argue over who got to read a book to him. While the other children recognize that there is something different about my son, they readily accept him. In some ways, it seems that his delays make him even more endearing to his little friends.

I am so thankful that going to school is something Benjamin looks forward to each day. I'm so thankful that it is a place where he feels safe and accepted. My prayer is that this will continue as he gets older. I pray that he will be able to form meaningful friendships in time as his social skills and social awareness increase. I pray that he will grow up feeling confident in who he is. I pray that he will always feel that he is loved and valued, by teachers and peers, by friends and family, and most importantly, by the One who created him and who calls him a masterpiece!