Guest Post: A Modern Easter Story
Recently one of our older children text late at night and asked if I had time to answer five very specific questions. I did. He called, and I answered the questions quickly. And then I asked, “Are you doing some kind of writing?” Having been his home school teacher, I recognized research mode. He shared that he was writing about what the resurrection of Jesus Christ means to him. The questions were focused on Nathaniel, and I curiously asked if he would share his work with me. And then I asked permission to share it with the world.
This voice from the birth sibling perspective is not often heard when adoption stories are told. This voice of loss, fear, and deep heartache is not often heard when special needs family life stories are told. The beauty of this writing is not only that these are told with vulnerability and honesty, but that the writer courageously shows us his journey to hope and healing through the work of the cross.
Special note: The author mentions a situation when his negligence could have resulted in Nathaniel’s death. Due to the shortage of nursing support, our teenage children sometimes assisted us in Nathaniel’s nightly tracheostomy care. During one such time, Nathaniel’s trach tube accidently came out, and he rapidly declined. I held this older son deep into the night as he wept over the “what if?” Rich and I realized immediately that there are some burdens in adoption and special needs parenting that we needed to shoulder alone. We changed our practice. We look to the resurrection power not only for Nathaniel, but to meet the suffering all our children have witnessed in this journey with deeper trust. .
In honor of Easter weekend, I offer this equisic essay of an older brother’s love for his little brother and what the resurrection of Jesus Christ means for their relationship.
In 2010, my family sought a new church home, and we landed in a PCA church in St. Louis City. Life at New City Fellowship drastically affected the spiritual journey of our family both as a single entity and our individual faith walks. I heard about grace and mercy for the first time not just in my living room studying with family, but side by side in a gymnasium with immigrants and brothers and sisters from all walks of life. Everyone listened intently to the teaching that flowed from the small riser that the pastors called their pulpit. New City not only affected the faith of our family, but also our calling.
In November, 2012, our family was called to embody the mission of God's people in the specific area of being a father, mother, brother and sister to the orphan. At the time my parents had raised seven children. Raising children, specifically boys, was a job my parents were well equipped for. And so we welcomed eight month old Baby S into our home and our hearts and named him Nathaniel. It was good that my parents had the experience of raising six boys before Nathaniel, because he came with a few extra challenges.
The primary being that he breathed through a 3mm silicone tube in his trachea that was held in with two quarter inch velcro straps around his neck. These tracheostomy ties could come undone at any time, or fail to provide enough tension to keep the tube in, sending him into “respiratory distress,” which is a medically appropriate way of talking about suffocation. Nathaniel was born with excess tissue and cartilage between his vocal cords that almost closed off his lungs from his nose and mouth. His birth defect was a symptom of the brokenness that entered our world through the fall, that single act that would shatter the perfect Edenland that God had created. There was ample evidence of the fall in Nathaniel’s life.
Everyone in our family experienced this brokenness to care for Nathaniel. Older siblings gladly bore the loneliness that comes from parents being parents once again for a new baby and not having time to visit. Middle siblings walked a fine line between being there for the family, and not fully laying down dreams. The kids still at home experienced different hardships that were kept from the elder siblings. Through the grace of God I somehow managed to get through my junior and senior year of high school education as a homeschool student with only weekly or biweekly meetings with my mom.
I’ve woken in the middle of the night to ambulances and firetrucks parked outside in response to an airway emergency. Other times I woke in the morning to a quiet home, having slept through the emergency situation the night before, situations that didn't even allow enough time for a note to be written and left on the counter. I have borne witness to other airway accidents that resulted out of my own negligence and carelessness. The most painful and horrifying experience of my life was watching my little brother suffocating and knowing that if he died it would have been my fault.
My graphic recounting of events is not to elicit pity for me but because I've found my faith to be one that does not need sheltering from the pain, sadness, and hardship of life. We are all too familiar with brokenness and pain. It has looked different to each one of us, but we have all been willing and unwilling witnesses to it. And this being a story of resurrection means that it does not end in that moment of horror, witnessing my brother turn blue, then purple, then pale. It ends in the voice of my mother crying out “Lord Jesus, help us!” and before the phrase left her lips, God guided her hand and a replacement tube into my brother’s neck providing a safe airway for his breath. The best sound I have ever and will ever hear was the rush of air that came from my brother gasping for that first breath after an airway accident.
Though there are situations in Nathaniel’s life that reveal brokenness, there are three situations that display God's power and restorative work in his and our family’s lives. My parents were told pre-adoption that Nathaniel might never sit up or walk on his own. In September of 2017, he walked a set of rings down the aisle at my brother’s wedding. We were told that he may never communicate, and yet I receive a text at least once a week from my mother telling me that Nathaniel asked to FaceTime me using his speaking app on an iPad that I don't even even fully understand how to use. When he arrived in our home he was receiving all of his nutrition from an automated pump pushing formula through a feeding tube in his belly. This past fall he decided to have cupcakes for his birthday and pregamed with a normal lunch taken one hundred percent by mouth. He still struggles to swallow if there is too much peanut butter on his sandwich, but i'm pretty sure he will be able to make them just how he likes before long.
God did not choose to miraculously remove the blockage in Nathaniel’s airway. But he did equip a family to carry out the work of his people. I cried in church the week after we decided to stabilize Nathaniel’s airway with a major surgery. The surgery brought peace of mind and removed the life threatening aspect of Nathaniel’s condition. But it also meant that natural verbal talking was for sure never going to happen. No talking also means no singing in church with your older brothers, which is something I always envisioned doing with Nathaniel. It wasn't until my pastor shared the story of one of his fellow pastoral friends with a special needs daughter that I fully grasped what the resurrection means for my little brother. This pastor refused to be discouraged or spiteful at God for giving him a daughter with special needs because with the resurrection comes a promise that one day he would dance with joy alongside his daughter in the Kingdom of God. I wrote in the margin of my bulletin that Sunday, “Oh Lord how I wait with eager anticipation to one day lift a joyful noise alongside my brother in your Kingdom.”