Glimpses of Purpose

“What are we going to do about school for her?” This was among the first questions my husband and I asked each other as we processed the news of our daughter’s genetic diagnosis.

Louisa’s arrival had been a joyous occasion. As parents of four boys, we were excited to welcome a daughter into our family. Our sons could not wait to meet their baby sister, and we were all looking forward to adding a little bit of pink to our home. Our newborn bliss lasted four days. Five days after she was born our precious baby began having seizure-like episodes. This launched us on an unexpected trajectory. It was the first of many times we experienced that desperate, gut-wrenching feeling you have as a parent that there is something terribly wrong with your treasured child. It was the first of many times we had to trust that God does not make mistakes when He knits babies together in the womb. It was the first of many times we wrestled with the tension of God’s perfect purposes amidst hard providence. Louisa’s first two years of life have been marked by the paradox of intertwining heartache and abundant joy.

Louisa has global developmental delay as a result of a rare, genetic mutation. At this time there are less than one hundred individuals known to have this genetic mutation, and Louisa is the first with her specific genetic variant. All of this means her future prognosis leaves us with more questions than answers.

All parents have hopes and dreams for their children, and we all fear the possibility that something will thwart these hopes. I distinctly recall passing certain milestones with our sons and feeling a sense of relief that each was seemingly on a typical developmental path. With our daughter, rather than relief there is an ever-present undercurrent of concern and suspicion that infuses our interactions with her. We engage her with both hopeful anticipation and simmering dread of what her future might hold. “She smiled!” But was it purposeful? “She looked at my face!” But did she really make eye contact? “She is making progress!” But she is still quite behind her peers. Through our disappointments we are learning to trust the Lord rather than our own understanding. We are learning that our job is faithful labor and advocacy for Louisa; only the Lord brings growth. We are learning that His thoughts and ways are not like ours; His way is always best, and we can trust Him with our daughter’s future.

As a reader, I have turned to books to help process suffering and disability. I found John Piper’s Disability and the Sovereign Goodness of God particularly helpful. In this small booklet, the author discusses the passage in John 9 in which the disciples, upon passing a man born blind, ask Jesus who sinned, the blind man or his parents. The disciples are looking for a cause, but Jesus points them to instead consider the purposes of God in disability. Jesus tells His disciples that this man had been born blind so that God’s glory might be displayed. This has caused me to ask, “How might God’s glory be displayed through Louisa’s life with disability? What is my role, as her mother, in this pursuit of declaring God’s glory through our family’s story? How does Louisa’s story fit into God’s grand redemptive story?”

Alongside heartache, these two years with Louisa have also presented us with many sweet surprises—glimpses of glory amidst the ashes. Thankfulness has been an unforeseen fruit. Not knowing what Louisa’s  capabilities will be has brought immense thanksgiving with each small milestone she passes. Her circumstances provide our family with opportunities to celebrate her accomplishments together and create a sense of teamwork as we rally around our precious girl.

Another surprising gift has been the effect of these circumstances on our four sons. We have begun to see a cultivation of tenderness within each of them. We knew they would love their baby sister, but Louisa’s vulnerability and unique needs have produced gentleness and compassion for her that has been noticed even by those outside of our home. Our boys have also begun to demonstrate care for other children with disabilities, with new eyes to notice these children and new understanding from which to engage them. And we have noticed growth in their desire to defend the defenseless, as they have expressed compassion for vulnerable children and have taken opportunities to defend them. All of this growth in virtue has been a delight, and something for which we daily thank God.

My husband and I chose classical Christian education for our sons because we believe this will teach them to live as image-bearers of their Creator, shaping their hearts to love Truth, Goodness, and Beauty. As we absorbed the reality of our daughter’s unique design and future needs, we knew that we believed Louisa, too, was made imago dei, in the image of God. We knew that she, too, must learn how to live as an image-bearer of her Creator, and learn to love what is True, Good, and Beautiful.

Currently, there is very limited access to this kind of education for children with significant learning challenges in our community, but we are working to change this. In the meantime, we teach from Simply Classical Level A: Readiness, Rhythm, & Rhyme. Louisa’s occupational therapist has marveled at her progress.

In just two years we have already begun to see the impact on Louisa of being given language-rich instruction at home. She is communicative and responsive and learning to love stories and songs that promote that which is True, Good, and Beautiful. We begin to see, too, potential glimpses of God’s purposes for Louisa’s life with disability. Because of Louisa, families in our community may have a classical Christian school option for their children with disabilities. Because of Louisa, such students might experience delight in learning to love Truth, Goodness, and Beauty as faithful image-bearers of their Creator. Because of Louisa, our family has grown in thankfulness to God for His many provisions, and we have become more compassionate toward children with disabilities and toward their families. We know also that her life has purpose beyond our limited understanding.

We thank God for allowing us to see these glimpses of His work through Louisa’s life, knowing that His purposes and glory are more vast and all-encompassing than our finite minds can comprehend. It is a privilege to participate in His grand redemptive work in this small way, for Louisa’s sake and for others who might benefit. Soli deo gloria!