Saturday, October 27, 2018

Beautiful Repetition

Well, October is nearly over, and I'm just now getting around to writing a post in honor of National Down Syndrome Awareness Month. (Not that life with four children is busy or anything!) Honestly, I struggled at first with what to write. For nearly eight years now I've been writing about life with a child with Down syndrome. So many sentiments and stories have been shared over and over again. But then I realized...repetition of that which is worthwhile is both necessary and beautiful. Also, what is familiar to some may be a breathe of fresh air to others. With this in mind, I want to share five truths I've learned through this messy, beautiful, overwhelming, and extraordinary journey of raising a child with special needs.

1. Life almost never goes as planned.

From my earliest memories, I dreamed of being a mother one day. I dreamed of a houseful of happy, healthy, talented children, who of course would be so well-behaved the majority of the time. I would thrive as a stay-home mom, drinking in the joys of motherhood with grace, patience, and fountains of creativity! (Insert laughter here). Then real life happened. After over two painful years of infertility I finally conceived life in my womb. Yet, I was so unprepared for what was to come...a preterm baby fighting for his life in the NICU, a diagnosis of Down syndrome that I couldn't begin to wrap my mind around, and the terror of a heart defect that would require surgery in the near future. In a moment's time my heart experienced a depth of love and a depth of pain that I had not known was possible. (You can read more about Benjamin's birth story here.) I also wasn't prepared for all that motherhood truly entails. (But really, who is?) It is a glorious, beautiful, love-filled calling, but it is also HARD WORK! My idealistic daydreams have had to be laid down as I travel an unknown path that has stretched me further than I knew I could be stretched and has forged character in my heart that can only be achieved through a process of pressure and refining fire. This leads me to the second truth...



2. Deep joy often springs from deep pain.

The pain of those early days and months after Benjamin's birth was dark and intense. My dreams had been shattered. I was anticipating a homecoming with a healthy, thriving baby. Instead, I was helplessly watching my precious son fighting for his life. There were days on end in which I was just longing to be allowed to hold him. Every day I was longing for him to be well enough to come home, free of frightening tubes, wires, and machines. Once he was home, there were still many medical hurdles to overcome as well as the many developmental delays and constant questions of what life would truly look like for Benjamin with his disability. There were days of anger, days of intense grief, and days of emotional numbness, all intensified by the depth of love I felt for this tiny little human in my care. Yet in that very valley of pain, Jesus met me, poured love, hope, and comfort into my heart, and allowed me to experience a nearness to Him that was deeper and sweeter than I had ever known up to that point. In that place of deepest pain He taught me that He is faithful and He can be trusted no matter what difficulties may come my way. During that first shaky year He showed me what a gift it is to worship Him in the midst of my pain, the One who endured so much pain and agony for my redemption. It is a gift that I can only offer to Him in this brief life on earth, because a day is coming when He will wipe away every tear and heartache forever! (If you would like to read about a particular time the Lord ministered to my heart early on, go here).



3. There is much beauty in simplicity.

This is a truth that my son Benjamin has been teaching me for nine years now. He is a simple boy. His interests are few. His communication is limited. Yet his love for life is contagious! Raising him has often forced me to slow down, especially as we work towards new milestones that can often feel few and far apart. We live in such a fast-paced culture, and we often expect things to happen quickly, allowing impatience to rob us of joy when things don't move at the speed we would like. Benjamin has taught me to celebrate and appreciate the little things. He has reminded me of the wonder that is present in our world if we would just take the time to slow down and notice it. He draws deep joy from simple activity, and he has no pretense about sharing his exuberance with others. He has brought smiles to countless faces over the years by simply being himself. He is my beautiful little boy!



4. Unconditional Love

This reality has been three-fold. Until you have had a child, you cannot truly understand the intensity of love that floods your heart. I love Benjamin because I love him. I love him because he is mine. I love him regardless of what he can or cannot do. I LOVE him. Period. He is the one who ushered me into this amazing world of parenthood, and in the process I have been able to grasp at a deeper level the unconditional love of my Father in Heaven. I am a flawed human being, but if I can love my child this deeply, how much more does He love His children, including me--He Who is perfect love? Benjamin has also demonstrated unconditional love to me time and time again. Of course he can and does experience that whole gamut of emotions common to man, including anger and frustration. But he never holds a grudge. Just as quickly as his emotions turn sour, they can turn back to happy again, and he never withholds his affection. His love is simple, and it is real.   



5. We are all "disabled."

Raising Benjamin has brought me face to face with my own weaknesses in ways perhaps nothing else would have. I have had to recognize my own selfishness, my own pride, my own entitlement, my own lack of faith and trust, my own helplessness, and the list goes on and on. In truth, the whole of humanity has been disabled...disabled by sin. Everywhere around us we see the evidence of a sin-sick world. People are hurting. People are suffering. We have all experienced rejection, hatred, and disappointment. We all carry wounds. And we are all guilty of sin. Just as Benjamin has needed purposeful intervention to develop and grow and thrive, we are in desperate need for One to intervene for us. Just as Benjamin has needed us to love him and help him through the process, we need One who loves us right where we're at but who's committed to walking us into healing and wholeness. Caring for my son has given me an even deeper gratefulness for the Gospel of Jesus Christ. He loved me in my sin. He intervened for me in my sin through His death on the cross. And my Risen Lord has led me out of darkness and into His glorious light! He is committed to leading me into greater healing, greater freedom, and greater purpose in my life. He wants to form His very nature inside of me. Yet He is so gentle and tender toward me in my weakness, loving me and enjoying me every step of the process as I take His hand and allow Him to lead. When I fall down, He picks me up. When I cry and complain, He patiently waits and we try again. When I want to give up, He lovingly nudges me forward and encourages me along the way. He is so good! And while we all have stories to tell, they find there truest meaning and beauty in His story--a beautiful story to be repeated for all of eternity!


If you enjoyed this blog and would like to read more about our journey with Benjamin, please check out my book Reflections from Holland: A New Mother's Journey with Down Syndrome.  As always, thanks for reading!  

Saturday, September 22, 2018

Loving Motherhood

I have officially been a stay-at-home mom for over nine years now. It has simultaneously been very fulfilling yet very draining, very lovely yet very messy, completely natural but at times completely overwhelming. In short, I affectionately refer to it as the beautiful chaos of my life! In fact, I am currently sitting in my favorite coffee shop, slowly typing with one finger as I try to nurse and comfort my fussy baby. My stomach is rumbling for the lunch in front of me that I hope to eat before it gets cold, and I am hoping she cooperates enough for me to craft the words that have been flowing through my heart and mind all morning. I sure do love this little lady!


As a full-time mommy, I am so keenly aware of a mother's need for encouragement. I am always on the look-out for that which will strengthen and inspire me in this most worthy calling. A few years ago I was blessed to stumble across an amazing ministry called Above Rubies, founded by Nancy Campbell, committed to "strengthening families around the world" by offering encouragement to women as wives, mothers, and homemakers. I truly discovered a treasure! Since then I have regularly read their articles, read (and re-read) several of Mrs. Campbell's books, and subscribed to their free magazine which comes out a handful of times each year. I have never felt so affirmed as a mother!

Recently I was given the privilege of sharing an article in the most recent edition of the Above Rubies magazine. My piece was entitled "They Could Never Guess" and is a condensed version of the chapter "God's Formula" from my book Reflections from Holland: A New Mother's Journey with Down Syndrome. What a gift and a joy it was to be able to add my voice to this beautiful ministry to women!


As I stated earlier, motherhood is both a rewarding and difficult occupation, but it is a high-calling deserving of the utmost respect. Each little child is an eternal soul entrusted to us to raise and nurture. Mother's are truly shaping the next generation. Sadly, we live in a culture that has progressively devalued the significance of motherhood.  On several occasions, Mrs. Campbell has written about her observation that, while all mothers love their children, many mothers sadly do not love motherhood. The two are not completely synonymous. To truly love motherhood, we must have a deep sense of purpose and vision for the task before us, even in the midst of the repetitive and the mundane. Loving motherhood involves living with intention and dying to ourselves on a daily basis as we love, teach, and nurture with joy these vulnerable, little human beings given into our care. Loving motherhood means not viewing our children as an inconvenience but as the great purpose of our lives. Loving motherhood means recognizing that there is nothing more significant that we can be pouring our time and energy into during this season of life while our children are being raised in our homes. 

I deeply love my four children Benjamin, Joelle, Josiah, and Ava. Over the last nine years I am learning more and more to truly love my motherhood, even those portions which cause me to grieve. Embracing motherhood takes on unique dynamics and struggles when raising a child with special needs. The demands are oftentimes greater. The progress is most definitely slower. By this I mean that the natural progression of childhood and maturity is much more drawn out and sometimes halted altogether. The "season" of childhood may in fact be a lifelong one as the child's physical body grows into adolescence and adulthood but the mind and emotions do not. The "empty nest" will most likely never come, and, when we're really honest with ourselves, the future can sometimes look bleak. "Will he ever be able to talk?" "Will we still be changing diapers when he's a teenager or an adult?" "Will I still be singing The Wheels on the Bus and Patty-Cake to make him smile another ten years from now?" "What will happen if we reach a point where we are no longer physically able to care for him?" The unknowns and fears can quickly creep in and suffocate us if these thoughts are not taken captive and given to the Lord. We do not know what the future path will look like, but Jesus does, and He can be trusted with every detail. 


I have often been told the faulty sentiment, "God gave you a child with special needs because He knew you could handle it." No. I cannot handle it. I do not have the strength and patience within myself. But Jesus does. He offers me His sufficiency in the place of my insufficiency. He offers me His peace in the place of my fear. He offers me His strength in the place of my weakness. He offers me His victorious life in the place of my sinful state. He is enough. And I don't just need His grace and power to mother my sweet Benjamin; I need Him to mother all my children. I cannot be the mother He has called me to be on my own. 

I truly believe that embracing motherhood first involves embracing a Person--Jesus Christ. He is the one who gives the eternal vision and purpose for raising children. It is not about us. It's not even about them. It's about Him and His kingdom that will never end. He is looking for those who love Him wholeheartedly and who will be faithful with however much or however little has been entrusted to them. 

Last week my husband was asked to preach at our church's Wednesday night service. He talked about living for eternal rewards. This life is fleeting, but it is in this life that we prepare for eternity. We can invest our lives in that which will fade away, or we can invest our lives in that which will remain. This principle is the very core of true motherhood. Shawn shared the example during his message that God is looking for faithfulness to Himself and to the callings He's given to us, and He does not judge the way the world does. He said, "My wife is a homemaker, and many people may look down on her for that. But her calling is no less significant to God than Billy Graham's calling was to preach to the masses. It's about faithfulness."

If you are a mother reading this, I hope the reflections of my heart today have encouraged your heart. You may be feeling weary and forgotten in the trenches of motherhood, especially if you are raising a child with special needs, but take heart! You are doing a mighty work! Though often unseen and maybe unappreciated by the world, you are seen and known by the Lord of all creation. Your labor is not in vain!  


"You're greatest contribution to the kingdom of God may not be something you do, but someone you raise." --Andy Stanley 
         

Saturday, August 25, 2018

Time Flies

Time can certainly fly by at a rapid rate! When I posted my last blog, I was about to pop with baby number four, and summer vacation was just around the corner. I feel like I blinked, and now the school year is up and running, and my newborn just turned 3 months old! I can hardly believe this much time has lapsed since I last took the time to write, but better late than never. Let's start with some updates...

On May 24 we welcomed our beautiful Ava Rose into the world, weighing 7 lbs, 8.5 oz and perfect in every way! This particular pregnancy/birth experience was such a healing one for me. When my husband and I discovered (to our delight) that I was expecting again at age 35, my daily prayer was that this pregnancy would be completely complication free. I had yet to experience such a blessing. If you've followed this blog or read my book, you know that we had a terrifying start with Benjamin literally fighting for his life and facing huge medical hurdles. You may or may not know, however, that we had some scares with our next two children as well. When I was pregnant with our daughter Joelle, I suddenly began bleeding at 12 weeks. It lasted for over a month and was one of the most frightening months of my life. Thankfully the Lord sustained her in my womb, and she was born perfectly healthy. My pregnancy with Josiah was without incident, but his delivery was another matter. I was required to have a repeat C-section. The moment he was pulled from my womb he inhaled amniotic fluid into his lungs and began to drown. He was very critical for about 20 minutes until they were finally able to get his lungs mostly cleared. He was kept under an oxygen tent and supervision for a few hours and then had another breathing episode. He ended up being taken by ambulance to a hospital an hour away and placed in the NICU. Meanwhile I was confined to the local hospital for recovery. I did not get to see or hold my precious baby for three painful days. Needless to say, I was nervous entering into this fourth pregnancy!

However, early on the Lord's peace descended on my heart, and I went on to experience my easiest pregnancy yet! Every thing went smoothly from start to finish. As I was being stitched back up after my C-section, Ava was placed right up by my face so I would kiss her and talk to her right away. Once I was wheeled to my room after surgery, she was immediately placed on my chest. My heart overflowed with gratitude as I drank in the beautiful privilege of holding my healthy baby close to my heart where she belonged!


The blessing and wonder has continued as Ava has turned out to be the EASIEST baby we've ever had. She has a happy, mild personality, and she actually lets us SLEEP! It's been amazing to say the least. She loves watching her siblings, and they have all adjusted better than we expected to their new sister. Joelle absolutely adores her and is always eager to help. Josiah is getting used to not being the "baby" anymore. He doesn't pay her much attention, but he is gentle. Benjamin has been fantastic, and has appeared to be very accepting of another baby in the home. (He had a really hard time adjusting when Joelle was born and still struggled with Josiah...) Shawn and I are absolutely delighted with our lively little household and the amazing treasures that have been entrusted to our care! 


After attending summer school part time over the vacation, Benjamin was extremely eager to begin full time again for his second year at Paths to Independence school for autism. We continue to be so grateful for this exceptional school that is playing such a key role in unlocking his potential. The staff genuinely love him, and he genuinely loves going! The summer school program ended a few weeks before the school year began, and the last week especially was a difficult one. Benjamin was so bored being home all day, and my time and attention was obviously divided with four children to care for, including nursing my baby full-time. As his frustration mounted, he acted out more, and I found myself feeling increasingly frazzled (just being real)! 

One day I was slammed again with a wave of grief over the more recent diagnosis of autism. At times I feel that the autism is a greater hindrance to Benjamin that the Down syndrome. The older he's gotten the more sharp the contrasts have become between him and his peers who only have Down syndrome. Sometimes I feel so helpless to reach him, even though he is an affectionate little boy who knows he is loved. However, our communication continues to be so limited, and his interests are so few. On this particular day when my heart felt extremely heavy, I logged into my secondary e-mail account that I use primarily for writing purposes. I was so surprised and so encouraged to discover a  message from a young mother who recently read my book. She had to request it through an inter-library loan and had a lengthy wait time to receive it. However, the Lord's timing was perfect. You see, she was approaching the one year anniversary of her own child's (successful) open heart surgery, and the memories brought a re-surfacing of the pain associated with that difficult experience. On that exact day, she ended up reading the chapter in my book about Benjamin's open heart surgery, and the Lord used it to bring such comfort to her heart. I was amazed, and my own pain began to take on its proper perspective. In a response email to her I wrote, "I discovered your message at the perfect time--a ray of sunshine in what's felt like a gloomy day! Thank you for reminding me that our trials are never wasted when offered to the Lover of our souls. He is so good!" How beautiful it is when God takes our broken pieces and weaves them into something beautiful that can be a blessing to others. 

Within the first week of Benjamin returning to school, encouragement once more started to pour in. As I walked into the building one afternoon to pick him up, I saw one of the high school students, who also has the dual diagnosis of Down syndrome and autism, walking out with his mother. He was enthusiastically telling her about his day. His speech is not easy to understand, but he does talk, and his parents have told me before that it was around fourth grade when his language started to really emerge. Their story gives me so much hope! Any way, as I headed down the hall to my son's classroom, I whispered a prayer to the Lord that in time Benjamin will be able to speak as well. His teacher greeted me at the door with a glowing report. Apparently, the day before he had accidentally whacked his elbow, and she heard him say, "Ouch!" She was surprised and asked, "Did you just say, 'ouch'?" He then repeated it! Then, that afternoon during a snack time, he used sign language to form the simple but clear request, "More eat please." WOW!


I titled this blog post, "Time Flies." However, when you are raising a child with special needs, sometimes it can actually feel more like time is standing still. This handsome little man turned nine years old two days before the birth of his baby sister, but the developmental milestones have often felt few and far between. In many areas we will get stuck for years at a time. Yet when breakthroughs do happen, the celebration and joy runs deep. It is a very bitter-sweet process. Though I have been a parent for nine years, my five-year-old is by FAR my "oldest" developmentally, and this season of having little ones to care for has been all I have known. The day-in-day-out mundanes of life can make it feel as though it will stretch on forever, even though I know that's not true. This week I listened to a wonderful podcast about the seasons of motherhood. I am still in an early season, and with Benjamin, the seasons will inevitably take on a different course then they do with our other children. However, they are no less precious or valuable. Time truly does fly by. The Bible tells us...


Life is precious, and it is not guaranteed. Motherhood is an extraordinary gift, and it is not one I ever want to take for granted. I want to cherish this time of caring for my little children. I want to be intentional with this time of raising them up in a God-honoring way. I want to celebrate this time and all the precious memories to be made. I don't want to waste this time because once it is spent, it cannot be regained. I want to make the most of this gift of TIME, whatever the journey may look like and whatever the future may hold!








Saturday, May 12, 2018

The Gift of Motherhood


Tomorrow is a day I look forward to every year--Mother's Day! I didn't always feel this way, though. In fact, there was a season of time when this day was one marked with sadness and disappointment. Mother's Day of 2008 is one that I especially remember in this regard. Shawn and I had been trying unsuccessfully for a couple of years to conceive our first child. I LONGED to have a baby, and Mother's Day was a pointed reminder of my seemingly barren womb. We were currently employed at The Salvation Army, and the night before my husband received a call from his supervisor that they would be leaving first thing in the morning for disaster relief services in a tornado-ravaged town a few hours away. It was a sudden and unexpected departure with no time table for how long he would be away.

After an early morning goodbye, I got myself ready and headed to church on my own, feeling especially lonely and depressed. During the Mother's Day service, they had all of the mothers stand in recognition. My heart ached that I could not stand myself. As if on cue, a young girl in our small congregation blurted out, "Dana, you should stand up. You're Oreo and Gizmo's mom!" (We owned two little Shih tzus at the time). I can definitely laugh at her innocent comment now, but in the moment I was anything but amused!

However, by Mother's Day the next year, our prayers had been answered, and I was blooming with our first child. I received flowers from my husband and from the church, and I rejoiced in the reality that I carried little Benjamin Lee in my womb. We had no idea at that point that he would make an emergency arrival within the next few weeks, nor that our little warrior would be born with an extra chromosome, fighting for his life. Nonetheless, our miracle boy launched me into the wonderful and frightening world of motherhood. I can hardly believe we will be celebrating his 9th birthday in less than two weeks! 

Since then, we have been blessed with our daughter Joelle Malise (2013), our son Josiah Gage (2015), and I am once again in full bloom with child. We will welcome our daughter Ava Rose on May 24 via repeat c-section (though I won't be at all surprised if she chooses to grace us with her presence sooner)! These little treasures light up my life every day, and I feel so privileged to be their Mommy!
 

Earlier this week I posted a picture on Facebook of my basketball (or perhaps watermelon?) size belly with the statement, "Growing a tiny human being is incredibly rewarding and extremely exhausting!" However,  the truth of this statement is not limited to pregnancy alone; it's true of motherhood in general! Raising a child with special needs only amplifies this reality. The exhaustion can often run deeper, but I believe the rewards are less likely to be taken for granted. In many ways, having a firstborn with special needs has offered an amazing gift of perspective. We have learned to celebrate each little breakthrough because each one truly is a big deal! At the same time, I've been more in awe watching the natural development of my younger children. I so cherish each one!

This morning I was reading in a devotional book called 100 Days of Blessings: Devotions for Wives and Mothers by Nancy Campbell. It seemed fitting that the title of today's reading was "The Nurturing Anointing." Mrs. Campbell writes,

The "nurturing anointing" is not only relegated to mothers with children. It is God's intention for all women. If we were to ask who was the greatest mother of the last century, there would be a unanimous reply. Mother Theresa. Was she married? No. Did she bear her own children? No. But she was a great nurturer. She fed the poor. She loved the unlovely. She poured out her life to the needy. She sacrificed her own goals to bless others.

The world waits to feel the anointing of God's nurturing heart. And it starts with us. It starts in our homes. It starts with pouring out our lives to nurture our own children and then flowing over to meet the needs of the needy around us.

Motherhood is an incredible gift and calling. I am so thankful that God fulfilled my desire to have children, and I do not want to take lightly the important job I've been giving of nurturing them and raising them physically, emotionally, mentally, and spiritually. However, I am reminded today that motherhood is not limited to those who have borne natural children. There are many women who give of their hearts and their lives each and every day in loving and serving those around them who may have never had children of their own. They are just as deserving of honor and recognition. As we celebrate Mother's Day tomorrow may we rejoice in our own children and honor those "mothers" in our lives who have given of themselves, enriching our lives in the process!





Saturday, March 31, 2018

Immeasurable Value



What is the value of a life? How is it determined? Success? Accomplishment? Quality of life? Relationships? I believe the true answer is not and never has been contingent on any of these things or any other elements of which the world may try to convince us. Sadly, we live in a culture that has often devalued life. From our heart-breaking history of slavery, to the devastating loss of over 60 million babies murdered in the womb since the passage of Roe vs. Wade, to the more recent rise of school shootings and violent crime, we see the lack of respect and value for human life. This sentiment has deep inroads in our entertainment industries as well where violence and loss of life are glorified on the big screen, the T.V. screen, and behind the video game controllers. If we consider the nations around the world we see darker and darker examples of terrorism, tyranny, and the world-wide atrocities of the sex slave trade. For children such as my precious Benjamin with an extra chromosome, the womb has become one of the most dangerous places to be. We even have nations celebrating the "eradication" of individuals with Down syndrome. Their lives are not valued but proudly "terminated." (Now, this post is not meant to be political, nor is it meant to be depressing. I am simply trying to paint the backdrop to magnify the truth and hope from which I write).

So how do we determine the value of a life? I believe that the answer is loudly and eternally  proclaimed in the reality of the day countless millions will be celebrating tomorrow--Resurrection Sunday! The value of a life--of every life--is found in the passion of Jesus Christ. The perfect, sinless, all powerful Son of God left His glory and entered the world as human embryo in the womb of a poor Jewish girl. He lived a life of simplicity, compassion, and suffering as He proclaimed and demonstrated the heart of His Father in Heaven and destroyed the works of the devil. He willingly laid down His own life in unspeakable torture and agony on the cross, taking on the penalty of our sin, so that we could be forgiven and receive His righteousness. He was laid in a tomb and three days later defeated sin and death forever through His resurrection and his ascension back into glory. With unrelenting love and unspeakable value for human life, the Father willingly sacrificed His Son, and the Son willingly became the sacrifice.


He did this for you, and He did this for me. His love and mercy are beyond measure. The value of a life is not found in anything we can do or be. The value of a life is measured by the price that was paid for it, and the life of Jesus Christ is immeasurable in worth and value! We were worth it to Him!

God teaches me so much through my sweet, little Benjamin. He was born with a genetic imperfection. He has a disability which he is powerless in himself to overcome. Yet his chromosomal count, his weaknesses, and his inabilities have never caused my love for him to waver. He is my son, and I value him because he is mine. The truth is that we were all born with imperfection. We are all disabled by the curse of sin, and we are powerless in ourselves to overcome our weaknesses and failures. Yet God looks down on us with a heart of unconditional love and says, "I love you because you are Mine. Receive My love. Receive My forgiveness. Receive My very life within yourself. You are worth it all to Me." Our response is simply one of acceptance and surrender, but He will never force us to do so. We each have a choice on how we will respond to cross of Jesus Christ, and this response is the MOST IMPORTANT DECISION we will ever make. Our eternal destiny hinges on our "yes" or our "no."


My prayer is that this Resurrection Sunday, you will experience the power of God's love, grace, and forgiveness in the cross of Jesus Christ. Whether it is a deeper revelation of His heart or a first time surrender to His Lordship, He is calling, "Come, beloved one. You are valuable to Me!" 


Saturday, March 10, 2018

Unlocking Potential

Over the years since Benjamin's birth there are moments when he blows past my expectations (which admittedly are sometimes too limited), and he displays a new level of comprehension and understanding of which I was not aware. It was present all along, but he simply needed the right outlet to unlock the potential within. When these moments arrive I am reminded to not underestimate his ability, and I'm given renewed hope for future breakthroughs. This past week held one of these moments...

I arrived at Benjamin's school to pick him up in the afternoon and was greeted by his teacher with a glowing report from the day. They have been utilizing an iPad speech app with him that gives him simple word buttons to choose for various activities. While working with the speech therapist he had formed a COMPLETE SENTENCE all by himself! "I want more Wheels on the Bus." (This has been his all-time favorite song since he was a toddler). Now I would have anticipated him hitting the button, "Wheels on the Bus," but he blew my expectation when he showed the unprompted understanding a simple sentence structure!


As a reward for his hard work he earned some time with his beloved See-n-Say! I've expressed this is previous posts, but I am so very thankful that Benjamin has the opportunity to attend a school that is tailored to his needs. They are helping to unlock the potential he holds inside, and I am continually encouraged to keep on dreaming for his future. I am so proud of this boy!



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

Saturday, January 27, 2018

Some Days Are Harder Than Others

It was a typical Monday morning. I was scurrying around, trying to get myself and three children ready and out the door in time to drop Benjamin off at school by 9:00. As is our routine, I popped in a short DVD for them while I focused on getting cleaned up myself. Their movie ended about 15 minutes before we needed to be out the door, and I did not see any point in giving them another one. There were shoes to put on, teeth to brush, and coats to round up. Benjamin, however, was of an entirely different opinion. When it became apparent to him that his movie-viewing time was indeed over, the meltdown ensued,...and IT DIDN'T STOP! For the next 15 minutes my indignant eight-year-old cried and wailed with all his might, smearing snot and tears all over himself as he very vocally let me know just how mad I had made him.

By the time we shuffled out the door, he was still at it. Getting all three rounded up and into the van always feels like herding cats anyway, and this morning my nerves were already raw. As I buckled everyone in as quickly as I could, my son's protests continued. "Benjamin, that's enough!" I snapped as I slid my tired, pregnant body into the driver's seat and started the engine. Of course, responding in anger NEVER improves the situation, and his cries continued for the next few minutes.

As I pulled out the driveway, I began to pray, as I always do on our way to school. This morning, however, burning tears were welling up and stinging my eyes as I was honest with the Lord about my weariness and frustration. Sometimes a simple incident like the morning's meltdown is all it takes for an unexpected layer of grief to be peeled back. My heart was aching over my son's delays. My heart was aching over the many barriers to communication. My emotions were raw and my body weary from the demands and challenges of raising three small children, one of whom operates as a 50 lb toddler. I was TIRED.

As I prayed, I was reminded of the simple strategy of speaking aloud what I know to be true in the midst of pain and disappointment. "Benjamin, Mommy loves you so much. Benjamin, I'm happy you're my son. Benjamin, Mommy is proud of you." As I spoke these words of affirmation over my child, his demeanor calmed, and he began to smile. As I listened to my own words, my heart calmed too, and the proper perspective returned. No matter how difficult certain days may be, these truths will never change.

I was reminded once more how desperately I need God's grace at work in my life to be the mother He has called me to be. My natural, human love and good intentions are not enough. I need His life flowing in me and through me to truly be able to nurture life in my children--in their spirits, souls, and bodies.  I was reminded too that, just as I need grace, I must extend grace to these little ones, especially in the hard moments. My responses and behaviors towards them are teaching them, whether right or wrong, about the heart of God. Benjamin needs my grace as we navigate day-to-day life with his disabilities. He needs my patience and understanding, my affirmation and tangible demonstrations of love. Finally, I was reminded that I must also give myself grace. It's okay to admit when it's hard. It's okay admit when I'm hurting. It's okay for me to take time for myself to recharge and refresh. As I type this I am enjoying my weekly, Saturday morning, "mommy break." I swung by an estate sale, did some shopping at the mall, and now I'm sitting in my favorite coffee shop, taking the time to reflect and decompress from the daily demands of homemaking and motherhood. I am so incredibly thankful to my husband for insisting that I take this time on a regular basis. He knows how much I need it!

It's true that some days are harder than others, but it's also true that grace is always available to me in abundance. "...My grace is sufficient for you, for My power is made perfect in weakness..." (2 Corinthians 12:9). May every day be filled with grace!