The trial of caring for a medically fragile daughter crushed my hope, and I knew a spiritual desolation like never before.
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My husband, Ben, and I walked out of the geneticist’s office stunned and in stony silence. We’d just received a crude copy of a page from some antiquated medical textbook about our newborn daughter Sarah’s rare disease – Apert syndrome.
As I scanned the information, my heart grew heavier: cardiovascular, pulmonary, dermatological, hearing, vision, and gastrointestinal issues, among others. The list included virtually every bodily system and how Apert syndrome potentially affects each.
Tears welled in my eyes, and I couldn’t muster any conversation with Ben during the car ride home. Sarah peacefully slept in her car seat, while Ben and I attempted to secretly, separately, process what we’d just been told point blank: “A life of many specialists … 20 to 40 surgeries, some very risky and life-threatening.”
After the realization of what our new normal would become, I panicked with the overwhelming knowledge that our lives would be filled with perpetual medical bills. The image of them piling up over time suffocated me, and this terror superseded any semblance of faith, any iota of trust in God’s providence. Quite simply, I didn’t know how we would make it.
The next few weeks only reiterated my fears. We weren’t rich enough to cover the bills that would come in, nor poor enough to get government assistance – every state or federal aid that existed for the sake of persons with disabilities was denied us based on Ben’s salary. I could, sadly, feel my soul sinking into the pits of despair.
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In the past, I had always ridden on the wings of hope. Hope was my life source, beacon, and refuge when the going got tough. But somehow, the trial of caring for a medically fragile daughter crushed my hope, and I knew a spiritual desolation like never before.
One agonizing and sleepless night, I lay awake with silent tears streaming down my face. The only prayer I uttered was, “Lord, we can’t do this. We’re going to go bankrupt. We can’t afford this life.” And in the shadows of night, God responded with mercy and unwavering clarity: “I will provide for Sarah.”
The verse from Proverbs 3:5, “Trust in the Lord with all your heart and rely not on your own understanding,” resounded in my soul, overcoming the despondency I carried within. I prayed that verse as the fear simply dissolved – and was replaced by a peace that settled upon me, like the nightfall outside my bedroom window. A peace that has remained constant.
My tears transformed from worry and trepidation into heartfelt gratitude for God’s love and mercy. In that solitary moment, I knew God would send us help for Sarah – that people would rally with us and support our family somehow, some way. I knew there were countless Samaritans awaiting their mission of mercy, and that God would send them as messengers of encouragement to someone who desperately needed it – someone like me.
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And, as the anonymous donations, holy hours, Mass cards, free babysitting and house cleaning, and meals flooded our mailbox and our home, my heart was, once again, raised to the heights of Heaven on hope’s wings.
Uplifted, renewed, and confident in the God who provides for every detail of our lives, I chose to live in that place of hope, even and especially in the midst of mystery.
And hope, indeed, prevailed.
