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!  

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