Saturday, June 29, 2019

What You've Taught Me

My sweet son Benjamin,

I can hardly believe that an entire decade has passed since we welcomed you into the world, and you made me a mommy for the very first time! The school of parenthood is one of the most glorious, most difficult, and most complex classrooms of life, and you have been a profound teacher for me, even as it is my purpose to teach you. I have been reflecting today on some of the key lessons you have taught me over the years. A single blog post could never fully encapsulate the depths of this learning, but I hope to at least capture the essence.

You have taught me...the beauty of unconditional love.

From the moment I saw the positive pregnancy test and the happy tears flowed, to your frightening delivery accompanied by torrential tears of fear and pain as I helplessly watched my baby fighting for life, to the tears of relief and joy at your eventual home-coming, I was overwhelmed by the depth of LOVE I felt for you! It was a love that knew no bounds, a love that completely consumed me, and a love that marked me in such a way that I would NEVER be the same again. You are my child. I love you, because I love you, because I love you. And as I have loved you, I have caught a greater glimpse of the unconditional love of our Heavenly Father--a love that knows no bounds, a love that is completely consuming, and a love that marks the very purpose of our existence.


You have taught me...that life will give us many unexpected turns.

After nearly three years of longing to conceive our first child, your daddy and I were sure that we would be welcoming a baby who was completely healthy and whole. We prayed over you every day. I took so many precautions to ensure a healthy pregnancy. We daydreamed about what you would be like and what your future may hold. We were blindsided by the necessary preterm delivery, the life-threatening holes in your little heart, the confirmation of Down syndrome, and the doctor's continuous reminders that you were "a very sick little boy." How could this have happened? This was not how we envisioned your life to be! Yet, in the the midst of the upheaval we experienced, we discovered incredible joy in spite of our pain, and we have been on a continual journey of embracing the beauty of the unique path we have been given to walk. Life holds no guarantees. We can make our plans, but we must hold them open-handed. Whatever unexpected turn life may bring, though, I have learned that God is constant, and He is good, NO MATTER WHAT.


You have taught me...the importance of trust.

As your mother, I have had to learn to trust on a whole new level. I have had to trust God for you in literal life or death scenarios. I have had to trust in God's provision, especially when I left the workforce after your birth to begin my full-time calling as a stay-at-home mom. I have had to trust God for each new milestone that we have worked so hard together for. I have had to trust God to sustain my heart when I have felt overwhelmed and unable to bear the weight of responsibility and care. I have had to trust God for the specific future He has in store for you, knowing that He is faithful, and you will be blessed. I have had to trust the help and support of others He has brought into our lives along the way, realizing with greater clarity the importance of community. I have also learned about trust by watching you. Benjamin, you have such an ability to trust with ease. You fully trust your daddy and me to care for you and provide for you. You don't worry and fret about the future or about how your provision will come. You are free to live in the moment, and I so love that about you!



You have taught me...the power of perseverance.

As you fought for life in the NICU a good friend encouraged us to "Celebrate your son every day." We have come back to this exhortation time and time again over the years. We have persevered together for months and years to help you reach developmental milestones that many would take for granted. Yet the harder the struggle, the greater the celebration! I am so proud of the many hurdles you have faced and eventually crossed--the first time you sat up, the first time you crawled, the first step you took, the first time you held a cup or a spoon, the first time you said "Mama" at age eight, and a myriad of other "firsts." These milestones, both physical and mental, have resulted in great celebration in our home. You are a little over-comer, and I know that many more triumphs are in store!



You have taught me...that my broken pieces can become food for others when offered Jesus.

As human beings, we naturally shy away from pain and suffering. We want to avoid it and often try to shield ourselves from a myriad of possible scenarios by insisting, "That could never happen to me." But the truth is that none of us are immune to pain, and all of us will experience suffering in our lives. These things will take on many different forms, but in some measure they will come to every life. How we choose to respond will either keep us bitter and broken or lead us to greater compassion and purpose. I have offered my pain to Jesus countless times over the years, knowing He is big enough to shoulder it and to bring healing in my heart. One specific way I have offered my pain to Him has been through the written word. When I first began composing bits and pieces of our story, it was simply a personal outlet to release my emotions and process the journey we were on. Soon, I was encouraged to begin this blog (something I had never considered myself) to share our story with others. I felt such a deep sense of satisfaction and purpose as the words continued to flow, and the blog posts were birthed. More time passed, and I realized that a book was in the making. With nervous vulnerability and bubbling excitement, my heart was placed into print form with the release of Reflections from Holland: A New Mother's Journey with Down Syndrome. Through this blog and my book, I have been given the privilege of connecting with the hearts of people across the country and around the world. Many I will never hear from, but sometimes I'm given the gift of hearing how people have been touched and encouraged through my writing, and I thank God for the opportunity to serve others in this way! 


You have taught me...that our value is not measured by our performance.

This is a sentiment that I would have always insisted was true, but my internal reality was very different. Since childhood I wrestled with insecurity and the faulty belief that my worth was tied to how well I could perform in any given area. If I was doing well, I felt worthwhile. If I was doing poorly, I felt shame. I knew deep down that this was not true, but I was living in a bondage that was difficult to break free from. Over several years, God has worked healing in my heart in this area (and I'm still a work in progress!) One way He has done so is through your beautiful life. Benjamin, you are a good and precious gift just as you are! While I am always thrilled when you overcome another hurdle related to your disabilities, the love I have for you, and the value I place on you are in no way contingent on these things. You are valuable because you are you, a beautiful child created in God's image! There are many things you may never be able to do, but that's okay. Your life has purpose and value and meaning, regardless of how simple or complex it may be. This leads me to my last point...


You have taught me...the simplicity of joy. 

Son, you have a smile that can light up a room, and a laugh that brings delight to the heart. Of course you can and do experience and communicate a broad range of emotions, but joy has always marked your life. I love to watch your wonder and enthusiasm over the simple pleasures of life: a favorite song, a scrumptious meal, a walk in the sunshine, a kiss and a cuddle, and the list goes on and on. You have taught me to slow down and savor the moment. Life is full of little blessings and opportunities for joy in the midst of the common and the mundane, if only we have the eyes to see and a heart of gratitude to receive. Thank you for demonstrating to me day in and day out that there are always reasons to celebrate and smile! My sweet Benjamin, I celebrate you today, and I thank you for all that you have taught me over these past ten years. I look forward to how much more we will learn and grow together in the next ten years to come and beyond. Mommy loves you so much!


Saturday, April 20, 2019

Regaining Perspective



I've been intending to write again for quite awhile now. Really. It's been on my "to-do" list, always hovering around somewhere in the back of my mind. I could blame my two-and-a-half month lapse on extra activity. I could blame it on my nursing baby. I could blame it on many things. But...if I'm truly honest, the real reason is that I've simply lacked the inspiration. As a writer, when a fresh idea hits me, the words flood my mind and my soul, and I simply have to get them out! My loving and supportive husband always ensures that I find a way to do so, nursing baby and all. Yet lately, I have simply felt dry.

I have been writing about this life of raising a child with special needs for over eight years now. In those early days, I could hardly keep up, because there was SO MUCH I just had to get out. I rarely lacked a direction or inspiration for writing, as there was just so much story to be told. There were monumental challenges and monumental breakthroughs. There were new discoveries both internal and external all along the way. There was a sense of purpose and satisfaction that, by sharing our story, I could be a source of encouragement to others who may be walking a similar path. There was the exciting joy and the nervous vulnerability of the 2014 release of my book Reflections from Holland: A New Mother's Journey with Down Syndrome, which I dedicated to "everyone who has ever loved a child with special needs." Writing has always been a passion of mine, and life with Benjamin has given me a special outlet through which to channel it.

So, why the writer's block in this season? I'm sure it is a conglomeration of many factors, but the few things I can most readily pinpoint are the relative plateau I feel with my son's development combined with an underlying sadness that has been clouding my days as of late. Next month we will celebrate Benjamin's 10th birthday. It's hard to believe that we've had our sweet son with us for a decade now, but as my firstborn is about to enter into his double digits, I have had to come face to face with some new layers of grief. I have had to grapple with the fact that what I once envisioned for my son by this age is very different from the reality in which we live.

When Benjamin was little, I would draw so much strength and encouragement from peering into the lives of older children with Down syndrome, via books and articles, social media posts, and the local support group. As time went on though, my husband and I recognized that our son's development looked increasingly different from others in the Down syndrome community. Two years ago we received the fateful dual diagnosis that he has autism as well. You can read more about that here. In many ways we are still learning about and adjusting to this unexpected twist in our journey with our son. It has not been an easy road.


Walking the dual diagnosis path can be a fairly lonely trek. We are blessed to have Benjamin enrolled in an exceptional private school that is specifically designed for children with autism, and he is doing very well there. However, we've also had to realize that our world with Down syndrome looks VERY different than those who do not have the additional challenge of autism. The same stories that used to bring me hope and encouragement often just leave me feeling more sorrowful and despairing as I longingly wonder what life would be like if Benjamin only had Down syndrome. Would he be talking now? Would he be potty-trained? Would he be interested in new activities? Would we be able to enjoy more family outings without the fear of meltdowns? Would he show affection to his three younger siblings? Would he actually interact with them? Would he be able to connect on a deeper level with his dad and me? Would he have friends he enjoyed spending time with? If I dwell on these thoughts and questions too long, the grief can begin to feel crushing.


When Benjamin was born, I had to grieve the loss of my expectation for a child who was healthy and whole. In time I knowingly or unknowingly created new expectations for what life with Down syndrome would look like for my son. Since receiving the autism diagnosis, I have had to grieve the loss of those expectations as well. The future now feels so uncertain, though it was obviously always uncertain to begin with. We are never guaranteed what tomorrow will hold.

I adore my son. I love him deeply. But lately, I have really been hurting inside. I've been trying to focus on enjoying him in our present reality while simultaneously grieving and longing for what could have been. At times I've wrestled with guilt for feeling the way that I do. Today, though, I realized that I didn't need some fresh inspiration to write. I simply needed to be honest about where I'm at--right now--instead of waiting for my emotions to get to where I wish they would be. Because just as the future is uncertain, so are my emotions. They will always ebb and flow, and they need to be taken in stride. I remembered that simply getting my thoughts out is often all I need to help me regain a fresh perspective. In the introduction to my book I wrote, "In the Psalms of the Old Testament, King David poured out his heart before the Lord with unhindered abandon. He expressed every emotion known to man. In the midst of this all, though, he clung to the Shepherd of his soul. This has been my story; clinging to Jesus only to realize He is holding me securely in His hands while I do my best to trust Him with each new step."   

So, here's the true perspective I'm reminding myself of today...My hope cannot be in a certain circumstance or outcome or dreamed up future. My hope must be in a Person--Jesus Christ. Anything else is shifting sand. My expectations for what life would look like for Benjamin have had to shift and change many times. But Jesus never changes. His love, His goodness, and His nearness are constant no matter what difficulty may come my way. His eternal Word contains the truth to securely anchor my heart, no matter the storm.

When I feel weak and overwhelmed He tells me:

"My grace is sufficient for you, for My power is made perfect in weakness." --2 Corinthians 12:9a

"Come to Me, all you who are weary and burdened, and I will give you rest." --Matthew 11:28

When I become fearful about my son's future He tells me:

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." --Matthew 6:34

"The Lord makes firm the steps of the one who delights in Him; though he may stumble, he will not fall, for the Lord upholds him with His hand." --Psalm 37:23-24

When I'm struggling to feel peace He tells me:

"I have told you these things so that in Me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." --John 16:33

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." --Philippians 4:6-7

Ultimately, He reminds me of the temporary nature of this life and its struggles. Tomorrow is Easter Sunday when Christians around the world celebrate the Resurrection of our Savior. We remember that our hope is not to be placed in this life at all but in the eternal life to come. Eternity is what truly matters. Loving and trusting Jesus in the midst of this uncertain earthly is what truly matters. Loving others and pointing them to His grace and mercy is what truly matters. Finding purpose and contentment in Him is what truly matters. In the end, it's all about Jesus. It may even be that He allowed us to walk this unique journey of raising a child with special needs for the very purpose of knowing Him more and making Him known. Through this journey I have learned to love and trust Him at a deeper level. Through this journey I have seen His power on display in our lives. Through this journey I have discovered great joy in the midst of great pain. And through this journey I have had the opportunity to share the testimonies of His love and faithfulness in our lives with others I would never have connected with had we not been asked to walk this road. I think I'm regaining some much needed perspective!



Saturday, February 9, 2019

Worth Living

Time has gotten away from me again, and too much has gone by since I last took time to blog. Today's reflections have been weighing heavy on my heart for the last few weeks...

Tears began to fill my eyes and run down my cheeks as my husband sat beside me on the love seat and we lifted our voices in prayer for our nation. The horror and brutality of New York's recent late-term abortion laws (which legislators cheered and celebrated) were heart-wrenching; the shocking and chilling callousness of Virginia Governor Northam's comments suggesting infanticide were staggering. My heart was aching within me as I pondered, how have we come to this place?

Lest anyone is unfamiliar with what I'm referencing, Governor Northam's comments (for which he claims no regret) are as follows...

"When we talk about third-trimester abortions, these are done with the consent of obviously the mother, with the consent of the physicians, more than one physician, by the way," Northam said. "And it's done in cases where there may be severe deformities, there may be a fetus that's non-viable. So in this particular example, if a mother is in labor, I can tell you exactly what would happen. The infant would be delivered. The infant would be kept comfortable. The infant would be resuscitated if that's what the mother and the family desired, and then a discussion would ensue between the physicians and the mother. So I think this was really blown out of proportion." (cbsnews.com)

Blown out of proportion! His language is suggesting a decision about whether or not to allow a newborn baby to live or to die! His jaw-dropping statements hit me especially hard because he could have been describing my son. You see, Benjamin had to be delivered at 35 weeks due to complications. Upon birth he was immediately placed on a ventilator that was doing most, if not all, of his breathing for him. Genetic testing was ordered right away, as the characteristics of Down syndrome were immediately evident. It was soon discovered that he had three holes in his heart that would require surgery if he survived, though we later learned that none of the medical staff expected him to. Medically, he was "non-viable" without immediate and drastic intervention. (Read more of Benjamin's birth story here and here). 



According to Governor Northam's rationale, Benjamin's life only had value if we decided it had value. According to him, if in a moment of emotional distress (and believe me, we were feeling distressed) we decided that we were too overwhelmed by the prospect of raising a child with special needs, it would be perfectly acceptable to allow nature to run its course and leave him to die, or possibly even facilitate his demise! According to this logic, it's as though a child is nothing more than a commodity that can be returned or discarded if the consumer has decided it is unsatisfactory and/or defective. What a dangerously slippery slope we have been sliding down since Roe vs. Wade where one imperfect human being gets to determine whether or not another innocent human being is deserving of life. How far we have fallen!

Last Tuesday night President Trump delivered his second State of the Union address. Love him or hate him, his comments concerning abortion and the sanctity of human life were striking and rightly drew the thunderous applause of the pro-life community...


“There could be no greater contrast to the beautiful image of a mother holding her infant child than the chilling displays our Nation saw in recent days. Lawmakers in New York cheered with delight upon the passage of legislation that would allow a baby to be ripped from the mother's womb moments before birth. These are living, feeling, beautiful babies who will never get the chance to share their love and dreams with the world. And then, we had the case of the Governor of Virginia where he basically stated he would execute a baby after birth.”

He went on to say...

“To defend the dignity of every person, I am asking the Congress to pass legislation to prohibit the late-term abortion of children who can feel pain in the mother’s womb. Let us work together to build a culture that cherishes innocent life. And let us reaffirm a fundamental truth:  all children – born and unborn – are made in the holy image of God.” (lifesitenews.com)



The contrast of our nation's divide was overwhelmingly apparent as he made this plea for the protection of innocent babies. As one side of the chamber rose to their feet with loud cheering and applause, the other side, including all the women, the very ones divinely designed to nurture and sustain life, sat and scowled in deafening silence. It was truly heart-breaking to watch.


Again, how have we come to this place as a nation? I believe much of the answer lies in our turning away from the profound truth that President Trump so clearly articulated: "all children-born and unborn-are made in the holy image of God." For several decades America has been steadily moving away from our identity as "One Nation Under God" into an increasingly secular and humanistic society. Self-importance and self-fulfillment reign supreme, while the belief that we evolved from some cosmic explosion long ago leaves little meaning to our existence. Without recognizing the fingerprint of God and the divine purpose and value placed upon each new life, human beings, especially those hidden in the womb, become expendable. If there is no God, then what is the basis for morality, and who or what gets to define it? In turn, we've shrouded the gruesome reality of abortion in emotional euphemisms and bought into the lie that the "moral" choice is giving a woman the "right" to choose what she does with "her body" without any interference or judgment, even if that means ridding herself of the "products of conception," (i.e. killing the very life she helped to create). With noble-sounding phrases such as "reproductive rights,"  "reproductive healthcare," and "reproductive freedom," we have sanitized and rationalized and even idolized the brutal murder of untold millions of innocent human beings, a staggering 61 million and counting. At the same time we applaud ourselves for the "progress" we've made in the name of women's rights and protecting women. How desperately we need to turn back to God!

   
As we've lost sight of our Creator, we've also seemed to lose sight of the beauty and significance of motherhood itself. With the rise of feminism, the mindset has become increasingly widespread that motherhood is burdensome and children an inconvenience. Success for a woman is defined by her career aspirations and accomplishments, while motherhood is seen as secondary and even inferior. In particular, women who choose the path of homemaking are often frowned upon or met with indifference, but surely not celebrated or given honor. This disparity was once again on display during Tuesday's SOTU. The same women who sat in stone-faced silence for the plight of the unborn, danced and cheered in celebration for their own accomplishments. 


Now I am not accusing all these women of being hostile to motherhood. I am sure that many of them are mothers who dearly love their children. I am, however, trying to draw attention to the societal trends that have led us to the place that abortion, especially late-term abortion, is seen as a necessary and fundamental "right" for women. This would not be possible in a society that truly values and esteems motherhood as the sacred calling that it is intended to be. 


Since I was a little child myself, I daydreamed about being a mother one day, and I have been passionately pro-life for my entire adult life. I could continue on and on about this issue that is so close to my heart, but I will turn the attention now back to my sweet son Benjamin. In the midst of the painful and shaky first few weeks of his life, a trusted family friend exhorted us to "celebrate your son every day." That which we celebrate most speaks of that which we value most. I value my little miracle boy, who beat the odds and is now a happy, healthy 9-year-old. He has taught his dad and me much about celebration. We have celebrated every new milestone that he has worked so hard to achieve and have learned that sometimes the seemingly smallest of things merit the greatest of celebration. We have celebrated the improvement of his health over the years and the gift it is that he is with us today. We have celebrated the simple joy and delight he finds in the day-to-day; indeed we have celebrated watching him celebrate with exuberance the little pleasures of life! We have even celebrated the pain and struggles we have walked through, for we have grown closer in our marriage, and we have grown closer to the heart of God. He has met us time and again in the midst of our pain and poured in His grace, His strength, and His joy. We have also celebrated the expansion of our family, which now includes four precious children, each one beautiful, each one unique, and each one made in the image of God.

(Simple Reflections Photography)

Benjamin gave me a sweet gift last week when I picked him up from his classroom at Paths to Independence (an exceptional school he attends that is specifically designed for children with autism--more on his dual diagnosis here). When he heard me call his name, his face lit up with a huge smile as it does every day, but when he stood up, he smiled back at his teachers and happily declared, "Mama!" He wanted them to celebrate with him that Mommy had come to pick him up! It's only been a year since my mostly non-verbal little boy said my name for the first time, and he usually reserves it for when he's upset and wanting comfort. But this day he said my name in celebration, and my heart soared. Benjamin's life may be simple, but his life is happy, his life is beautiful, and his life is worth living! 

To read more of Benjamin's miraculous story, please check out my book Reflections from Holland: A New Mother's Journey with Down Syndrome








Saturday, November 24, 2018

What Would You Say?

My sweet son, Benjamin,

At the time that I write this, you are 9.5 years old. You are my firstborn, one of the greatest treasures of my life. As your mommy, I know you possibly more than anyone else, yet there is so much more of you that I long to know. Last year, my heart burst with joy when you finally uttered the longed for word, "Mama." I had waited so long, and it was music to my ears. To this day you will only use this word when you are upset and in need of comfort, which I delight to give to you. I am still hopeful for the day you will say it with joy, just as I hope for the day that your language will be unlocked, and you will be able to give voice to the things on your mind and heart.


If you could speak, what would you have to say? You find little ways to communicate--sounds, gestures, expressions, some simple sign language, but how much do you wish to share that you are unable to? At times I can sense your frustration as I desperately try to interpret your wants and needs. Sometimes I am able to understand; other times I am at a loss. Two days ago we celebrated Thanksgiving, but it was a difficult day. As the morning wore on, you were showing increasing signs that you were not feeling well, but you couldn't tell us what was uncomfortable. You were acting lethargic, and then you refused to eat your lunch. We laid you down for a nap, only to check on you awhile later to find you covered in vomit. You couldn't tell us when it happened, and we could only hope that not much time had passed. Your daddy and I cleaned you up and tried to comfort you the best we could. You had little to no appetite the rest of that day or the next. At times you would break down crying, but you couldn't tell us what you were feeling. As your mother, I hurt when I see you hurting, and I wish I could make everything better again. I was relieved this morning when you eagerly ate your breakfast and seemed interested in playing again!

We missed the joyful demeanor you typically bring to a holiday meal. On a normal day, you leave the table as soon as you have finished eating, but holidays and birthdays are different. You know something special is going on when you see the table cloth laid out and the decorative centerpiece. You delight in the fact that extra friends and family have joined us. You are always the first one done, but on these special occasions you linger at the table, celebrating with gleeful sounds and expressions. Your exuberance blesses us all! What would you say to us in these moments of feasting and festivity? Maybe one day I will know.

Until then, I will choose to celebrate the ways you do communicate. On many a morning I will be sitting on the couch sipping my coffee, and you will approach me with a big grin on your face as you eagerly show me one of your beloved See-n-Say toys. These simple toys have mesmerized you since
your toddler days, and their songs and sounds have become the familiar background noise of our household. I love it when you show me your toys; you are intentionally finding a way to invite me into your world. Thank you! I will continue to cherish that happy smiles and hugs, and the simple signs and gestures you use when you want me to sing you your favorite songs. I will enjoy your animated dancing as you place your hands on my shoulders as I kneel in front of you, and you bounce up and down to the tune. I will appreciate your purposeful request for another toy from your closet shelf when you smile at me, grab my hand, and lead me into your bedroom. I will do my best to interpret your frustrations, when you express yourself through tears and grunts. When I can fulfill your desire I will do so with joy, and when it is necessary for me to say no, I will strive to communicate with loving firmness as I seek to teach you that there are boundaries and expectations in our family life. When you want to be held, I will happily cuddle with you, and when you are needing some space, I will respect your independence. In all things I will seek to demonstrate to you the depth of love in my heart that you may always feel cherished and secure.

My precious, Benjamin, your daddy and I love you so very much, and we will continue to pray for and believe that one day your language will burst forth, and you will be able to welcome us more deeply into your world. But even if our wish is not granted, we will diligently love you, care for you, and study you that we may better understand you. You are a little over-comer, and we look with expectation towards the future, not only in this life, but in the one to come. One day we will all leave this temporary life behind and enter into the eternal joy and presence of our Lord Jesus Christ. In that day you will be made completely whole, and I cannot wait to hear all that you will have to say!
(photo by Simple Reflections Photography

All my love,
Mommy

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

 

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!