With the birth of my third child, Steele, God transported me from the comfortable main parenting boulevard to some sort of extreme off-road trail, obscured by fog and punctuated with occasional falling rocks. After what felt like an eternity, at 17 months old, Steele was diagnosed with Crouzon Syndrome, a craniofacial syndrome much like Auggie’s syndrome in the movie Wonder. Over the next 18 years, Steele would endure hundreds of medical appointments and 25 surgeries.
I rapidly learned a whole new language, finding myself participating in a proverbial spelling bee of medical terms, repeatedly asking for the definition. “Can you define that for me please… coronal craniosynostosis…?”Among other medical trivia, Steele spent his sixth grade year without a large part of his cranium, wearing a specially designed helmet during all waking hours. I didn’t know there was such a thing as a shunt or pediatric craniofacial plastic surgeon. I certainly had not contemplated the blessing of modern technology in the development of a 3D printed prosthetic skull. Using the words of King David, God illuminated this land with three clear lessons. I hope these truths encourage others who find themselves on a similar trail.
If Only
As Steele’s infancy careened from crisis to crisis, our lives catapulted from the wide path filled with friends with strollers and playgroups to an often lonely, windy narrow trail. Playdates were cancelled, vacation plans were scuttled, and the church nursery became a danger zone due to the frequent presence of other children with colds as well as Steele’s anaphylactic allergies. I joked that I should adorn myself with yellow caution tape and an orange sign: “Warning. If you befriend me, you might babysit my children while I run to the ER or cook meals to feed my family.”
During this season, I looked at other mothers – mothers at the playground, mothers driving vans piled with kids to soccer practice, mothers effortlessly (at least from my vantage point) attending church each Sunday – and it seemed to me that they had an easy life. If only I could load my children in the van and go to the park. If only Steele wasn’t sick and we could go to church. If only…if only. If only I was on that other path!
Thankfully, the Lord didn’t leave me lost in the fog of “if only.”
Dwell in the Land
A truth-speaking friend (we all need one of these, don’t we?) shared a powerful message with me during this season: My family and I were called by God to be exactly where God put us. She pointed me to Psalm 37:3-4: “Trust in the Lord, and do good; dwell in the land and befriend faithfulness. Delight yourself in the Lord, and he will give you the desires of your heart.”
Dwell in the land? How does that relate to anything? Roughly three years later (slow learner here), I had a defining moment walking into Seattle Children’s Hospital holding three-year-old Steele’s hand, flanked by my older two children and pushing a stroller with our youngest. My friend’s words, spoken a few years earlier, finally bore fruit. What land? This land.The land of blood draws, IVs, waiting rooms, ER’s, nurses, surgeons, schedulers, and doctors. These are my people. This is where God is calling me to be. The land of durable medical equipment, insurance calls, sleepless nights, beeping monitors, and medications.
No one actually wants to hike this trail. We don’t homeschool our children or pay for private school or enroll teens in SAT courses or sign children up for ballet or club sports because our goal is to somehow gain an entrance here. But wait…this is where God firmly planted my feet. Be where your feet are.
Do Good, Befriend Faithfulness, Delight in the Lord
Psalm 37:3-4 rang with increasing intensity in my heart over the coming years. The foggy path provided incredible opportunities to teach my children that they were unique, beautiful and created by God, and that God was still good even when life didn’t make sense. Faithfulness meant helping an infant, small child, young tween, teenager, and young adult navigate pain, uncertainty, difficulty, and untold physical challenges in a manner that glorified God. What a calling!
God did not accidentally send our family the wrong direction. He chose us. Steele’s syndrome occurs in 15 of every million births. What if God had chosen some other family? What if I had not been picked? Over and over, I saw God’s goodness in stark relief, his blessings shining brighter with this child with Crouzon Syndrome. Another birthday? Something to marvel. Crushing medical news? God’s comfort in the grief. A driver’s license and success academically? God’s victory against all odds. College? God’s extravagant provision. Writing and releasing his own music album at 18? Words fail. God’s good gifts and presence through it all poured forth and spilled over…utter delight.
Right Desires
Being given a child with serious medical issues forced a refining of my heart’s desire for my children. What actually was my desire anyway? Sometimes the hardest questions have simple answers, answers that emerge clearly when walking a dark, bumpy path in the fog next to a cliff. Who made Steele? God. Why did God make Steele? For his own glory. Do I understand all of this? No. Can I trust God? Yes. Lord, all I ask is that this child love you and love people. That is all. That is everything.
With his extensive experience navigating terrifying pathways, King David’s words remind us to trust in the Lord, regardless of the situation. David saw with eyes of faith the coming of the Messiah, King Jesus, who would lay down his life for his sheep, taking the punishment for their sins and raising them to eternal life with him. Jesus loves Steele more than I ever could. As David also proclaims in Psalm 23, Jesus is with us on that path, protecting, guiding, comforting and blessing us.
And so, I have learned, and am still learning, that the Lord may not give me what I want, but that he will give me the right desires and his presence. God leads many of us to trails off the beaten path – cancer, mental illness, autism, a rebellious teen, a child with medical challenges. What then should we do?
Be where your feet are.
If you’re looking for more Gospel-centered encouragement in parenting, check out Rooted’s Parent Podcast.
