A Life of Abandonment as a Special Needs Parent, by Jane Stanley
On the day that we received a diagnosis for my son, I suddenly realized it was his feast day. Amidst the sadness and exhaustion, this felt like just one more blow. It was our tiny, beautiful baby’s first feast day and it had been overshadowed by a heartbreaking diagnosis. An aloof geneticist had delivered the news: a rare chromosomal deletion that was associated with intellectual disability, developmental delay, sleep disorders, behavioral issues, and a slew of medical problems. Life had changed dramatically for our whole family, and I almost felt like an entirely different person than I had the day before. Later, I realized that the timing of his diagnosis on his first feast day was a gift from God, a reminder that He had a plan for us.
We had named our little boy for Blessed Charles de Foucauld, a French man who was born in 1858 to wealthy parents who died when he was still young. Like St. Augustine, he partied away his youth and then found himself searching, longing for something more. He began praying, “God, if you exist, let me know it.” And, never one to turn down such an invitation, God let him know it. Charles experienced a profound conversion which led him to abandon his wealth, his mistress, his life of freedom and luxury in order to enter a Trappist Abbey. Later he was ordained a priest and eventually became a hermit, living outside of Tamanrassat in the South Saharan desert. He devoted himself to living the “hidden life of Nazareth,” the simple, ordinary days of the Holy Family. He lived and worked alongside the Tuareg people, sharing their hardships and translating the gospels into their language. His nights were spent in prayer and adoration. On December 1, 1916, he was assassinated by members of another tribe in an anti-French raid. His example of holy poverty and deep love of neighbor inspired religious orders, institutes and associations, and he was beatified 2005.
From the world’s perspective, this is a life that spiralled downhill: a young, attractive man with wealth and prestige who sank to a common laborer, murdered in a strange land without friends. The eyes of faith see differently. A man who found something so precious that he left everything behind to follow that pearl of greatest price. He had everything he wanted, and it could not be taken from him. Love had transformed him.
As a parent of a child with special needs, I feel a kinship with Bl. Charles. By the world’s standards, mine is a life interrupted, broken by tragedy. Full of promise and relative ease, my life quickly became a series of doctors’ appointments, therapy visits, insurance woes, sleepless nights, and IEP meetings. But again, the eyes of faith see differently. Yes, being a parent to a child with special needs is challenging. I’m not sure anyone would deny that. But, stubborn and stupid as I am, love has transformed me. Love has called me to something new.
Each of us has been given a vocation. In one sense, every single one of God's children has the same vocation: love. In another sense, each person's vocation is as unique as his fingerprint. As a parent of a child with special needs, I often feel like it is a calling to a life that is somewhat hidden, like Bl. Charles. It is a life that does not always make sense to others. The other moms on the playground are chatting, making connections, and I am following my son around in case he elopes. We can't go to that church function; we have a therapy appointment and a new specialist needs to be called for a sudden and concerning medical problem. A family member can't understand why we need to stay home from the Christmas gathering, why catching a cold means something entirely different to us. The loneliness can be crushing. The work, the suffering, seem hard and endless.
I have found immense comfort in Blessed Charles’s Abandonment Prayer. There are things that used to matter to me, that no longer do. There are places I used to go, things I used to do, that I no longer do, not because they were bad, but because God was calling me to something else. When I became the mother to my child with special needs, God gave me a new call. Now I realize that it was one step deeper into my life with Him. No matter the struggles, this life is good, because it is His plan for me. Embracing God’s will can feel terrifying, foolish, like stepping off a cliff into endless darkness. I hope He continues to teach me that if I just let go, I am assured of landing in the Father’s loving arms.
Prayer of Abandonment
by Bl. Charles de Foucauld
Father,
I abandon myself into your hands; do with me what you will.
Whatever you may do, I thank you:
I am ready for all, I accept all.
Let only your will be done in me, and in all your creatures.
I wish no more than this, O Lord.
Into your hands I commend my soul;
I offer it to you
with all the love of my heart,
for I love you, Lord,
and so need to give myself,
to surrender myself into your hands,
without reserve,
and with boundless confidence,
for you are my Father.
Jane Stanley is a wife and mother to five children. She reads, writes, and homeschools in Central Virginia.