In my life, worry has become a constant companion, particularly when it comes to the health of my youngest sister, Shelley. She was born with Beckwith-Wiedemann Syndrome (BWS), a condition characterized by various signs and symptoms that have shaped her journey from the very beginning. But through it all, we have witnessed the power of God's grace, carrying us through the challenges and providing strength when we need it most.
Beckwith-Wiedemann syndrome has left an indelible mark on my sister's life. From her larger body size at birth to her taller-than-average height during childhood, and the presence of a large tongue, the syndrome has presented its unique set of challenges. Yet, the most devastating blow came at the tender age of two, when our family received heartbreaking news: the doctors found a Wilms tumor in her right kidney.
Our hearts sank when we received the news. However, through the hands of skilled doctors, her right kidney was successfully removed, and chemotherapy was administered for six months to prevent the tumor from coming back. Despite this victory, Beckwith-Wiedemann Syndrome has persistently presented itself, resulting in a series of surgeries (23 to be exact), ranging from tongue reductions to hip replacements and heart ablations. The list seems endless, and it breaks my heart to witness the immense challenges she faces at such an early age. No one should have to endure such trials, and it reinforces our determination to support her every step of the way.
Whenever we receive difficult news or, yet another surgery is needed, I am reminded that it never gets easier to witness her endure so much. These are the moments when I find myself yearning to trade places with her, to shoulder the burden of another surgery. Yet, in the face of it all, Shelley has exemplified unwavering grace—an attribute that coincidentally coincides with her middle name. My mother always believed that God's grace was the reason for Shelley's presence in our lives, and it is through His unwavering love and guidance that she continues to persevere.
In the Christian faith, grace is considered the foundation—the unmerited favor and love God extends to us. Ephesians 2:8 reminds us that we are saved by grace through faith, as a gift from God. It is not something we can earn or achieve, but rather something freely given.
Reflecting on the challenges my sister and our family have faced, I am filled with overwhelming gratitude and thankfulness. The journey with Beckwith-Wiedemann syndrome has not been easy, but it has taught us the immeasurable value of God's grace. Throughout the years, God's grace has been our guiding light, providing us with the strength to endure the most trying times. We find solace in the assurance that God will never abandon us, faithfully working all things together for our good. It is through His grace that we discover the resilience and unity needed to weather life's storms.