Our 2-year-old son Eli’s diagnosis of a rare brain disorder called FOXG1 Syndrome upended our lives in every way imaginable. Without a cure, he is not expected to walk, talk or do anything independently, and he's at high risk for life-threatening seizures and many other frightening complications.
Nothing could have prepared us for this. It’s all-consuming. It’s frustrating and depressing. And it’s really difficult to accept, each and every day.
And yet, over time we’ve seen the beauty that emerges from intense pain. There is nothing as beautiful and as pure as sibling love.
She wonders whom Eli will marry, when he will go to school, when he will utter his first word.
Our daughter Emelia is 20 months older than Eli. She doesn't quite understand how abnormal her brother's development has been or what lies ahead, but she has an innate awareness that something is not as it should be. Emmy calls Eli “a big baby” — a recognition that he’s much larger than an infant, but without the skills that typically accompany physical growth.
She wonders whom Eli will marry, when he will go to school, when he will utter his first word, when they will be able to run around and play together. She has begun to observe other kids around Eli's age and, heartbreakingly, she asks us how old the other kids are — she knows that Eli should be doing the things that kids his age normally do.
Despite Eli’s limitations, Emmy loves her little brother. Her passion and empathy is difficult to explain but obvious to anyone who sees them interact. Emmy seeks Eli out. She brings him toys. She reads him books. She longs for him when they aren’t together.
She replicates what she sees his therapists do with him so she can be part of the process. Taking cues from how we try to soothe him when he’s upset, Emmy has become a mini-mom to Eli, caring for him and telling us when she suspects something is amiss. When we aren’t in the room, we often hear her assuring him, “Don’t worry Eli, your big sister is here.” She is his protector, his guardian angel.
Despite this horrible journey we are on, we are lucky.
In return, something magical happens between them. Eli responds to Emmy more than with anyone else. He hears her voice and he laughs. She calls him a nickname and his face lights up. He lets her hug him so hard and pull him in every direction without complaining. He calms down when she rubs his head or kisses his cheek. He rolls with glee in his crib when she stands over him. He can’t talk or communicate, and yet he speaks to Emmy and to us in unexpected ways. He shows us that love does not need to be spoken in words, and that the connection between siblings is more than blood: It is transcendent and divine in ways that go beyond our understanding.
What is especially magical is that for Emmy, her relationship with Eli translates into other areas of her life. She has a natural sense of compassion and empathy. She is drawn to younger children and loves to nurture them. She gravitates toward underdogs. She defends anyone whom she perceives to be slighted. In our family, she is the mediator — the one who brings us together in difficult moments, who moves us past the tears to find joy, and who reminds us that there are still reasons to be happy and silly.
Emmy and Eli truly are the very best of friends. They bring out each other’s gifts. They have molded one another in ways we could never have predicted.
Despite this horrible journey we are on, we are lucky. As parents, there is nothing better than seeing your children love one another. Although our picture looks different than most families, the sentiment remains the same. Together, Emelia and Eli have deepened our spirits, enlarged our imaginations and given us the strength to continue. They remind us of the words of Albert Camus: “In the midst of winter, I found there was, within me, an invincible summer.”
We would do anything to be on a different journey. But in the depths of our winter, our children have found in each other, and in us, an invincible summer.