Made to Excel

This morning I sat in the living room with coffee in hand, enjoying the early morning quiet before the busyness of the day began. I opened up a devotional book I have been reading by Nancy Campbell entitled 100 Days of Blessing: Devotions for Wives and Mothers-Volume Two. One little nugget of wisdom from this morning's reading was as follows:

"Raise your children to excel in the gift that God has given them. Of course they don't have to excel in everything. Go has made each one totally different. We must encourage them to be the very best in that which God has given them to do."

A little while later, after the breakfast dishes were cleared, and the kids were playing in the living room still clad in their PJ's, I happened upon a treasure in the hall closet. The large, black binder I uncovered is filled with things I wrote from 8th grade through high school. As I began to flip through the various folders, some pieces were familiar while others were completely forgotten. There were school essays, writing contest submissions, and old copies of Brio magazine from the late 90's when I was thrilled to place in the top 8 semi-finalists for their Brio Girl contest. There were short stories, small devotionals, and my graduation speech. As I flipped through the old folders, waves of nostalgia swept over me. A few of the pieces I read aloud to Shawn. As a special education language arts teacher, he really enjoyed hearing some of my writing history, especially from my early adolescence. 

Soon after I made the comment to him, "I was one of the rare kids who loved to write. While other classmates moaned over writing assignments, I got excited and poured everything into them!" What was true in my youth is still true today, over twenty years later. As I compose this blog I am seated at my favorite local coffee shop for my weekly "mommy break." The process of crafting words and sentences to share a story refreshes and energizes me. That which may seem as drudgery to another provides nourishment for my soul. 

As I shared with my husband this morning, I was reminded of the truth I had read in my devotional a few hours prior. While there are many things I do not excel in, writing is one thing that has always flowed naturally. I'm thankful that I've had opportunities and encouragement over the years to develop this gift. In the same way, I am praying that Shawn and I will have clear discernment to recognize the gifts and callings in each of our children while they are still young. I want to encourage them and give each one ample opportunity to excel in the things they love and are gifted in. I realize that their pursuits, passions, and gifts may vary greatly, and what motivates one may not motivate another. I am excited to see their unique personalities unfold! 

In light of all of these things, I am also reminding myself that the definition of "excelling" in something is broad and vast and cannot be place in a box. Benjamin is called to excel in the gifts that God has given him just as much as his siblings who do not carry an extra chromosome, though the expression may look very different. His disability in no way detracts from the truth that God has a plan and a purpose for his life that is beautiful in its simplicity and eternal in its significance. To quote from Nancy Campbell's book once more: 

"God has a destiny planned for each one of your children and whether this task is large or small, it is great in the eyes of God. God has given you the awesome task of preparing each child for this purpose."

I am deeply humbled and extraordinarily grateful for the high calling of motherhood. It is not a job for the faint of heart, but it is a job that carries rewards without measure and purpose that reaches into eternity. By God's grace I will excel in this mighty task as I teach my children to be all they were created to be! 

As one who loves to write, a life-long dream of mine since childhood was to write books. My dream stepped in reality in 2014 with the release of Reflections from Holland: A New Mother's Journey with Down Syndrome. You can find it in paperback or on Kindle here.

The Day Two Little Syllables Changed My Life

It has been eight years of waiting, eight years of wanting, eight years of wondering if the longed for day would ever come. I was waiting for two little syllables that contain a world of meaning; two little syllables that reflect an incredible depth of love, nurture, security, and comfort; two little syllables that speak to such a privileged purpose that I call my own. What were these two little syllables you ask? They were none other than the beautiful simplicity of "Mama."

Benjamin is my first born. He is the one who made me a mother. I have always enjoyed his joyful affection and obvious expressions of love, but I have ached to hear him speak my name.

I remember when I was pregnant with our daughter. Benjamin was three years old, and I wondered if I would hear "Mama" from this baby growing inside before I would hear it from my son. The thought was surreal, but I knew it was a definite possibility. Sure enough, one beautiful day 8-month-old Joelle was sitting in her highchair at meal time. Suddenly she reached for me and distinctly cooed "Mama!" My heart felt as though it would burst! I scooped her into my arms and cuddled her with delight as my husband, my mom (who happened to be visiting at the time), and I celebrated. At this point I had been a parent for over four years. I was finally hearing "Mama" spoken to me for the first time!

Joelle ended up being our very early talker, and her language quickly took off. In fact, it is very rare that she is not talking! With her fifth birthday quickly approaching, she loves to give us a running commentary on life through her eyes. Sometimes she has me laughing to the point of tears with the things she comes up with! I'm so thankful that Benjamin is able to hear so much speech while he's at home, not just from Mom and Dad, but from siblings as well.

When Joelle was a talkative little toddler, we discovered that I was pregnant with Josiah. Once again the question surfaced in my heart. Will I hear "Mama" first from this child as well? Sure enough, it has happened. Josiah's language is developing much slower than his sister's, but he definitely has his own little vocabulary that includes "Mama." However, he finds it very amusing to call me "Daddy" instead! Did I mention he has an ornery streak?

While Benjamin remains mostly non-verbal at this point, he does have an array of sounds and syllables he likes to make, including "Ba-ba" and "Da-da." In fact, one of his favorite games is for me to look at him and say with exaggerated pronunciation "Ba-Ba Benjamin, Da-Da Daddy, Ma-Ma Mommy." He smiles with delight, studies my mouth from different angles, and sometimes puts his hand under my chin to feel the sounds. He wants to speak, but his language still needs to be unlocked somehow. 

That brings me to November 16 of this year. Our family was sitting around the table at supper time as we do every day. My husband sits next to Benjamin and helps to monitor how fast he eats. Our son has a tendency to keep shoveling food in his mouth. Often, Shawn will take his spoon away and remind him to finish chewing before taking another bite. Once the food is down Shawn returns the spoon to Benjamin's hand to continue. It can feel rather tedious, but we're not sure how else to keep him from getting too much food in at a time. Benjamin does NOT appreciate this process at all. On this particular evening he was extra cranky about the whole thing. Suddenly in his frustration he blurted out "mama!" Shawn and I looked at each other, surprised and unsure what think. A moment later it happened again. At this point my husband was sure that he was referencing me, but I still wasn't so sure. Was he really, or was he just making a new sound? After hoping for so many years, I was skeptical that the wait was finally over. 

The next afternoon when I picked up Benjamin from school his teacher told me that he said "mama" three times that day. Each time, though, it was when he was frustrated about something. I was becoming more hopeful, but I still wasn't convinced. However, that evening changed everything. My super sensitive boy had become very upset about something close to his bedtime. I was sitting on the couch in the living room at the time. He came to me sobbing and wrapped his arms around my neck wanting me to hold him. Through his tears he kept saying, "Mama! Mama!" I was in shock. This was the real deal. I held him for a few moments, soaking it all in as I comforted my son. I then asked, "Benjamin, would you like some milk?" Immediately his tears stopped and he led me to the kitchen. I poured his milk and stood behind him with my hands on his shoulders as he drank. Between sips he continued to say, "Mama." I thought my heart would burst! Shortly after getting him to bed I looked at my husband. Still in a state of shock, I kept repeating, "It really happened. He really called me 'Mama.' After all these years of waiting it actually happened!" That's when the tears of joy began to fall. 

One thing I've learned ever since Benjamin's birth is to never take things for granted. Every little milestone is a cause for big celebration! I remember watching other children with awe when our son was still an only child. I was amazed at the ease with which they mastered gross and fine motor skills--skills that their parents often didn't think twice about. However, those same skills were ones that had taken months or years of therapy, intervention, hard work, and often tears for Benjamin to accomplish. Some were milestones still on a distant horizon. When Joelle was born we were fascinated watching her natural development progress at what seemed to us as a rapid speed. It was beautiful and painful all at the same time, but it was always full of wonder. 

I have waited 8 YEARS to hear my firstborn call me "Mama!" But I must say that I don't think those two little syllables have ever meant as much as they did on the day that the prayers were finally answered, and the wait was finally over. I have much to celebrate!

If you want to read more about our amazing journey with Benjamin, check out my book Reflections from Holland: A New Mother's Journey with Down Syndrome

A Quiver Full

As I was growing up, I often dreamed of becoming a mother someday. I was naturally drawn to babies and children. I loved to nurture, and the thought of having my own little ones in the future filled my heart with such joy. At the beginning of my senior year of college I met my best friend and future husband. Two years later we were married, and within the first year we were eager to begin our family. However, weeks, months, and then years began to slip by, and we were still waiting. The ache of desire during that season was nearly unbearable at times as we continued to pray for a baby. We had a sense all along that our first born would be a boy. Shawn had known he wanted to name his first son Benjamin ever since he was in high school. The night before I finally had a positive pregnancy test, the Lord clearly spoke to my heart, "Read Psalm 68." When I reached verse 27 the words jumped off the page, "There is little Benjamin their leader." Sure enough, the next morning my pregnancy was confirmed, and Benjamin was indeed growing inside my womb! You can read that story here.

Overjoyed that we had begun our journey into parenthood, we never could have fathomed what was in store for us within the near future. We never could have imagined the challenges we would face upon the arrival of our sweet son. We had no idea we were about to land in "Holland." Since that day in May of 2009, we have been on an incredible journey of learning and growth. We have experienced great heartache, we have been filled with overwhelming joy, we have faced daunting challenges, and we have witnessed genuine miracles. The first four years of this amazing journey is recorded in my book Reflections from Holland: A New Mother's Journey with Down Syndrome.

A few years after Benjamin was born, we felt ready to add to our family. Once again the wait was longer than anticipated. However, a few months before our son celebrated his fourth birthday, we welcomed our beautiful daughter Joelle into the world, and took our first trip to "Italy." Holding my healthy newborn against my chest on the day of her birth was an incredibly healing experience as I took in the wonder of her tiny features and drank in her sweet newborn scent. She has been an incredible source of joy in our lives. She is lively, inquisitive, full of imagination, and will be celebrating her fifth birthday in a matter of months.

The conception of our sweet son Josiah was a thrilling surprise. He made his debut on the same day Joelle turned exactly two-and-a-half years old. His arrival was filled with it's own scary challenges, though. I was required to have a repeat c-section, and in the process he inhaled amniotic fluid into his lungs and began to drown. For several scary minutes he was very critical, but God's hand of protection was upon him. After nearly twenty minutes the medical staff was able to suction his lungs and get him stabilized. Unfortunately, however, he was taken to a NICU an hour away. My husband went to stay with him while I recovered in the hospital and cried for my baby. My mom and family friends cared for our other two children during these shaky couple of days. Three days after Josiah's birth I was released from the hospital and eagerly went to see and hold my newborn for the first time. Those three days were painfully long, but not so long as the nine days I had waited to hold Benjamin. Thankfully, Josiah was discharged shortly after we arrived, and he is now a spunky two year old, who is very much a Mommy's boy!

 

This fall we were once again thrilled to learn that another little blessing is on the way! I am currently three months pregnant with number four, and we couldn't be happier! One thing that has really marked this pregnancy so far is the strong sense of peace that has covered my heart. After our experience with Benjamin, I really wrestled with fear when I conceived the second time. I had some placenta complications early on and had a few frightening months of bleeding with Joelle. The fear continued into my third pregnancy as a result, though it was not quite as intense. However, I can look back and see the Lord's hand of faithfulness over each pregnancy and each child's life. My due date this time is the same week as my 36th birthday--an age where many women have decided to stop bearing children. However, I have such a calmness in my soul, and I am so grateful! I am praying to be able to fully enjoy the entire process this time. I am praying for the gift of a complication free pregnancy and delivery, but ultimately I know that the baby and I are in the Lord's hands. He is faithful.

This week I had a sweet video come up on my Facebook memory feed back from the time Benjamin was an only child. I was holding him and kissing him as he belly-laughed with a face full of glee. I watched it over and over, enjoying the precious memories of the time he had me all to himself. Even though beginning parenthood with a child with special needs was very difficult, I am so thankful that he was our first born and he had the experience of our undivided attention for nearly four years. The Lord knew he needed that time, and we did too. I am equally grateful, though, that he is growing up with siblings who will love him, teach him, and ultimately be a vital part of his life. They are all a gift to each other.

 Children are such an incredible blessing, and I am so thankful that God has entrusted these little treasures to us. Parenting is definitely hard work as well, but the rewards far outweigh the challenges. Psalm 127:3-5a reads...

Behold, children are a heritage from the Lord, the fruit of the womb is a reward. Like arrows in the hands of a warrior, so are the children of one's youth. Happy is the man who has his quiver full of them...

Our quiver is getting full!

BENJAMIN LEE

As many of you know, October is National Down Syndrome Awareness Month! A number of years ago I wrote an acrostic name poem in honor of this, and I felt like trying one again. This is for you, Benjamin!...

BEAUTIFUL BOY, BORN A BLESSING

ENJOYS THE SIMPLE THINGS (INCLUDING ELMO!)

NEVER HOLDS A GRUDGE

JOY-FILLED

ALWAYS AFFECTIONATE

MUSIC LOVER

INSPIRING INDIVIDUAL

NAME MEANS "SON OF MY RIGHT HAND"

LOVES TO LAUGH

EXPENDS EFFORT TO LEARN AND GROW

ETERNAL DESTINY OF ENDLESS POSSIBILITY

WE LOVE YOU, BENJAMIN, AND WE ARE SO PROUD OF YOU!

If you would like to learn more about Benjamin's remarkable story, check out my book Reflections from Holland: A New Mother's Journey with Down Syndrome 

My Little Boy

This morning a wave of nostalgia hit me. I started reminiscing about Benjamin's baby and toddler days. I remembered the chubby hands and cheeks, the high-pitched giggles and squeals, and the constant kisses and cuddles. I can't help but share a few of my favorite pictures from those early years...

Now, I may be a bit bias as his mother, but can you say CUTENESS OVERLOAD!!! How is it that my chubby baby is now a growing 8-year-old and big brother to a little sister and brother? If I had a dollar for every time I have heard someone say, "Enjoy them while they're young because they'll grow up so fast!"...Well...

Honestly, I used to get so tired of hearing people say that, especially before our other children came along. When you have a child with developmental delays certain things feel like they are moving at a snail's pace. Sometimes I wondered just how long the "baby stage" was going to last...

When will he be able to roll over?

When will he be able to sit up?

When will he crawl?

When will he walk?

When will he be able to eat and drink independently?

When will he learn to speak?

How long will he be in diapers?

In reality, there are some of these questions we are still asking, yet many of them are now distant memories. Though many days feel long, years are flying by, and sometimes I wish I could just hold on a little bit longer to certain seasons. Ironically, I often catch myself telling other young moms, "It goes by so fast!" Each stage holds its own challenges, but each stage is unique and precious, and I don't want to take any of them for granted. (There are too many great pictures--I have to share just a few more!)

Earlier this week Benjamin had an eye check-up appointment. The waiting room was full of parents and children as we waited for our turn to be called back. My son was restless, but overall he handled himself extremely well. He sat in my lap or stood in front of me bobbing up and down as I sang him some of his favorite songs. He occupied himself with his unique little vocalizations and characteristic hand-flapping. He tried to wander off exploring a time or two. He hugged my neck like a small child wanting some comfort and reassurance. In short, Benjamin was simply being Benjamin--the little boy I love and cherish... 

...However, the longer we waited, the more aware I became of the looks coming our way from other adults, as well as the unabashed stares from other children. I get it. My son's sounds and behaviors that are so familiar to me are out of the ordinary for others. Things that are different draw attention. No one said anything, and I don't want to presume what people were thinking. I was realizing, though, that we are in a new season. When my son was small, he drew lots of attention because people were simply smitten with his cuteness. He seemed to make friends everywhere we went. (I even had a particularly bold stranger come up and plant a kiss on his cheek when he was a toddler!)  I still think he's an incredibly cute kiddo (more potential mommy bias!), but he's older, and things are changing. And that's okay... 

Benjamin is happy. He is content in who he is. He knows that he is loved. He is secure. He is oblivious to the stares of others. He only knows how to be himself--no pretense, no guile--just a beautiful simplicity...

...And I am PROUD of my son! By God's grace he has overcome incredible hurdles, and I know there is so much we've yet to see. My little boy is growing up, but I still get to enjoy an abundance of kisses and cuddles, just as when he was little. He still wants to crawl up in his mommy's lap. His face still lights up with glee when I pick him up from school each afternoon. I never want to take his sweet affection for granted. 

On the evenings that I put Benjamin to bed (Shawn often does while I take care of the younger two), I am almost always sure to tell him "Benjamin, Mommy loves you so much. I'm proud of you. I'm so happy you're my son!" He smiles and laughs and hugs my neck. I pray over him, and then he giggles as I whisper the familiar words in his ear, "It's bedtime now. Mommy's going to turn on your music, turn off the light, and shut the door. I'll see you in the morning. I love you!" It's our little routine that we've had for years, and he loves it. 

So much life has happened in the eight years since my son's birth. I look back with gratitude for the experiences we've had, and I look forward with expectation for what the future will hold. No matter how many years go by, though, Benjamin will always be my little boy!

  

Paths to Independence

With his hands clasped in ours, Shawn and I led Benjamin through the double doors of the Paths to Independence (PTI) school for autistic students to attend their open house and view their new (to them) facility. Crossing the thresh hold represented so much for our family. It was the glowing reviews for this unique school that prompted us to pursue having our son tested for autism, which was confirmed in May. We are in a brand new season of learning about Benjamin's dual diagnosis and providing the best opportunities we can for his growth and development. His enrollment in PTI is a huge answer to prayer. The school is private and accredited, and employs a very large staff, ensuring the students have the vital one-on-one interaction they need to thrive. As a result, the price of tuition is high. Thankfully, most students are eligible to receive a large state scholarship, greatly reducing the cost. Benjamin was approved, but we still needed some additional assistance. Through fundraising efforts and the generosity of friends and family, we were able to cover nearly half of the remaining cost of his tuition. The leftover amount we owe is much friendlier for our one income family. We are beyond grateful that the way was made for our son's education this year! Back to the open house...

Since their recent founding in 2012, PTI was operating out of a former daycare facility, as well as renting some building space across the street. As the school has quickly grown it became necessary for them to find a larger facility. Thankfully, they are now able to rent a former elementary school building in the heart of our town! Benjamin was given the opportunity to attend a few free days during their summer program before they transitioned to the new building. I had been impressed at how efficiently they had used the space they had to work with prior, but it was thrilling to see the new opportunities available for the staff and students now that they are housed in an actual school building!

Our first stop was in Benjamin's classroom. It was spacious, bright, and inviting, and our little guy wasted no time in wandering around and checking it all out! His initial look of surprise as he processed where we were quickly changed into a smile of delight. There is no doubt that he loves school. He was especially excited about an open area of carpet and happily planted himself in a nice comfy spot as he rejoiced in the new, yet familiar surroundings!

 

 

Once we convinced him to relinquish his spot on the carpet, we headed across the hall to the large resource room designed for his class. It was full of sensory stations, as well as tables and chairs where the younger students can eat their lunch. This room is designed to compliment the main classroom, and it offers a place for the students to go if they need a separate space to calm down should they become over-stimulated (a common need for children with autism.) Once again Benjamin was happy to explore, and Shawn had a bit of fun himself...I'm sure he'll forgive me for posting the picture!!!

  

  

  

Next we headed to the gym, which offers a large trampoline, a ball pit, sensory swings, etc. Benjamin enjoyed wandering around, but his highlight was getting up on the trampoline. We are still working on his balance, so he prefers to lay on his stomach, but he enjoys gentle bouncing. When Daddy got in with him, his excitement hit an all time high! It was so much fun to watch him so clearly enjoying himself! (Not to mention Shawn...)

 

During our time there that evening we also viewed the two separate playgrounds and spent time visiting with teachers and staff. One thing that really warmed my heart was the multiple, first name greetings my son received from so many as we walked the halls and visited the rooms. As I mentioned earlier, Benjamin attended some free days over the summer, but it was clear that he was already known and loved by the staff. Paths to Independence is a small school, but it has experienced rapid growth. When it made it's initial launch five years ago, they had one student enrolled. By the end of the year they had four full-time students and several part-time students. They received their accreditation the following year, and they are beginning this school year with 46 students, spanning elementary to high school. In the school's own words:

Paths to Independence was founded to offer a supportive school community for children with autism and their families. We believe all students can learn and focus on helping each child develop as much independence as possible in all aspects of his/her life. PTI believes all children will thrive in an appropriate environment, so we will exhaust all possible options to help a child succeed. Paths to Independence believes that a strong family is essential for a child's success. Part of our mission is to give families and students the tools they need to be a full part of their communities. Paths to Independence accepts all children with an autism spectrum disorder.

  

At the time of this writing, Benjamin has attended seven full days of school, and so far it's been a wonderful experience. He is thriving within the intentional structure of the days as he works on realistic goals physically, socially, and educationally. His classroom teacher is a gentle, grandmotherly woman with a big heart for the children and years of experience. He does very well with her. He is also quickly becoming a favorite among the aids! Each morning I drop him off in the big, circle drive where a few of them are waiting to escort students inside. My son gives me an affectionate goodbye and does his little happy dance of bobbing up and down, all geared up for another day of school. They love it! I pick him up in his classroom each afternoon and find him calmly working one-on-one with an aid. He is always delighted to see me and commences his happy dance once again! 

We are already seeing some little signs of breakthrough in his attention and socialization. One day after school last week his teacher told me that Benjamin happily engaged in play with her using a sensory ball for ten minutes! This may not seem like much to some, but it has been a big deal for us if he will do something like this for even two minutes. The next day he even chose the sensory ball over a snack, and this kid NEVER turns down food!

The most touching moment for me thus far came yesterday when I dropped my son off for the last day of the week. His teacher was intentional to come out and stop me before I could take off. We had a meeting with her before the school year began, and I had mentioned that I wrote a book about our early journey with Benjamin. I told her I would be happy to bring her a copy, if she was interested, so she could have a better understanding of our son's history. She happily agreed, and I gave her a copy at the end of last week. Yesterday she told me that she had already finished reading it and had passed it along to some of the aids. She found it touching and inspiring, and with tears in her eyes she told me that it brought back some personal memories as she began to unfold her own story...

She told me that one of her children, a daughter, was born with a congenital heart defect (as was Benjamin). At first my heart sank, thinking I knew where her story was going, but I was wrong! Her daughter had open heart surgery while she was in the third grade, and was one of only three children in the USA to survive this particular surgery up to that point in time! She said that my book brought back so many memories--things she had not thought about for years. It was then that she revealed to me the most stunning part of her story. Her daughter is the founder and director of Paths to Independence! I never even knew they were related! She said to me, "The Lord knew she had important things to accomplish." WOW!

I thanked her for sharing her story and told her how very thrilled we are to have Benjamin attending PTI. She re-emphasized how well he's doing and how happy they are to have him. He is their first student with the dual diagnosis of Down syndrome and autism, though she and her daughter have both worked with children with Down syndrome in the past. I mentioned that I am learning that this is a good dual diagnosis to have because the Down syndrome often helps as a buffer for some of the struggles associated with autism, especially in areas such as socialization, affection, and overall temperament. (Now I realize that there are many other factors that come into play with this as well, such as home environment, personality, cognitive ability, etc...). She affirmed this observation and said that her daughter has always been excited to have children with Down syndrome present with children with autism because they often become good role models for behavior. They feel they are already seeing this at work with Benjamin. 

As we said our goodbyes, and I drove away, my heart was overflowing with gratitude to the Lord. Each morning as I drive my son to school, one of the things I pray is that he will be blessed AND be a blessing. In such a sweet and unexpected way, He was showing me that my prayers are already being answered. It's going to be a great year!