Jimmy’s Life Is a Gift
COMMENTARY: What My Brother With Down Syndrome and Autism Has Taught Me About Life and Love
Anyone who saw my sisters and I belting Adele’s Someone Like You one evening might assume that we had all suffered a recent heartbreak. The song is a nostalgic ode to a lost love, but for my family, it is one of our special ways of connecting to my brother Jimmy, who, despite being mostly nonverbal, inexplicably loves this song and will occasionally sing along.
Jimmy was born with deep blue eyes, a gentle gaze — and an extra chromosome. It was hard for me at the age of 6 to fully understand what this diagnosis of Down syndrome meant, but I could hear the concern in my parents’ voices as they tried to explain it to me and my siblings. They met this challenge with faith, telling us that Jimmy was a blessing for our family and trusting in God to accept the unknown challenges ahead.
We could not anticipate the ways in which Jimmy would change our ways of thinking about the world, life and love.
Jimmy was so fragile in the beginning. He came home with two holes in his heart and scary breathing troubles. Our pastor provided an emergency home baptism, and our parish community prayed for his healing. When the holes in his heart closed without the need for surgery, I felt the power of prayer and the support that surrounded us. It seemed very fitting to me that Christmas, when my little miracle brother portrayed Baby Jesus in our parish’s living Nativity.
There were still so many unknowns as Jimmy grew older and slowly developed. We were able to meet other families who had children with Down syndrome. At first, I pictured Jimmy becoming like some of these children, showcasing big, sweet smiles and talking at length about their interests. They were free with hugs and hilarious comments and could go on to work at local businesses or even attend college.
Over time, we began to realize that Jimmy was very different from these children. Despite endless rounds of flash cards and books, Jimmy never got past repeating words to directly communicating with us in full sentences. We started to notice repetitive behaviors accompanied by loud repetitive noises. Eventually, it became clear that Jimmy was one of the roughly 16% of children with Down syndrome with a “dual diagnosis” of Down syndrome and autism.
This diagnosis is painted by some as a worst-case scenario. Helga Sol Olafsdottir, a genetic counselor in Iceland, where nearly 100% of babies with a prenatal diagnosis of Down syndrome are aborted, told CBS in 2017 that “you have to look at Down syndrome as a spectrum: you have this little cute one who has Down syndrome and none of the other problems and then we have people who have Down syndrome plus lots of other complication.”
She was referencing the dual diagnosis as a cautionary tale to encourage abortion in these cases. As she spoke, CBS showed footage of a smiling and talking little girl with Down syndrome contrasted with her unsmiling, uncommunicative older brother with the dual diagnosis.
Olafsdottir, who confidently counsels ending the lives of those like my brother to prevent “suffering for the child and for the family,” appeals to many in today’s society who want to avoid not only having children with Down syndrome, but also having children at all.
The truth is that Jimmy’s life is a gift to my family, and there has been so much beauty amid the challenges.
Over the years, we changed our focus from attempts to change Jimmy into some idea of normal to meeting him where he was, loving him in that place, and being creative in our communication with him. Amid our different attempts to teach and engage him, we noticed that Jimmy simply appreciated time that was spent with him even if he did not always learn things in the way we hoped.
Jimmy’s distinct personality is apparent along with his autistic tendencies. He loves music and even sings along with family members on occasion. He has deep empathy and cries along with someone, even when it’s a person crying on a television show. He loves being read to, even if his attention seems to be divided from the book. I know this because if I pause in reading to him, he taps his hand urgently on the book, telling me to continue.
There were moments where we saw that he internalized and understood things more deeply than we realized.
Every night, my mom traces the Sign of the Cross on his forehead as part of nightly prayers. Once during Mass years ago, Jimmy insistently reached out from her grasp to solemnly trace the Sign of the Cross on the priest’s forehead as he was processing out. The stunned priest simply looked at Jimmy and thanked him.
Beautiful moments like those were few and far between, though, and the real struggle was the acceptance of the everyday meltdowns, noise and communication barriers. We learned that he becomes overwhelmed by crowds, loud noises, unfamiliar textures and disruptions to routine. Jimmy’s behavior often meant leaving a gathering early or moments of embarrassment or confusion as he became overwhelmed and had to be taken out of Mass.
Mass especially became a struggle as Jimmy got older and the family started to take turns going because Jimmy simply would not sit through the liturgy. God provided us with special grace through this challenge when my parents discovered that Jimmy could sit through the traditional Latin Mass because it was quieter and not so overwhelming to him. He is now a regular Latin Mass attendee.
While navigating life with Jimmy’s sensitivities meant moments of isolation and difficulty, there were also moments when people went to great lengths to help our family with Jimmy. At the recent wedding of one of my sisters, various extended family members each took turns walking with Jimmy around the garden venue after he had become overwhelmed by the large gathering. They did this so that my parents could be fully present through all of their daughter’s wedding reception.
Nowadays, my parents are Jimmy’s constant companions, as the rest of the children have grown up and moved out of the house. My mom tells me that she can see how Jimmy continues to be a road to sanctity for her and my dad and how he has been one for myself and each of my four other siblings. He formed each one of us by calling us to serve him over the years in both subtle and very unsubtle ways.
I often find that when life feels complicated and negative, I am renewed by Jimmy’s love and gratitude for something as simple as watching a show with him while sharing some tangerines or going for a walk.
Jimmy reminds me of the beauty and love contained in the things I cannot perfectly plan and control. He calls my family to a radical kind of love to rise up and meet the unexpected, confusing and difficult. I repeatedly fall short in answering this call, but my brother has shown me that real love is about seeing the person amid all of their human frailty, embracing them, striving to understand them, and sacrificing for their good.
Pope St. John Paul II once said that “the wounded humanity of the disabled challenges us to recognize, accept and promote in each one of these brothers and sisters of ours the incomparable value of the human being created by God to be a son in the Son.” He called those with disabilities “humanity’s privileged witnesses” because “they can teach everyone about the love that saves us.”
This Down Syndrome Awareness month of October is an opportunity to reach out with love to a family meeting the often-unseen challenges of raising a child with Down syndrome and autism. Consider offering assistance, inviting the family to a gathering where their child has space to make noise, or simply reassuring them that they and their child are an appreciated part of the parish community.
As my miracle baby brother has grown into a mostly nonverbal but loud adult with a quizzical brow, he remains a blessing to my family, a source of our growth in holiness, and an intrinsically valuable human being made in the image and likeness of God.