The birthday party invitation was very much like the others we had received and rejected in the past year. There was only one small difference: It invited family members to attend along with their seven-year-old girls. I sighed and looked over at my oldest daughter, pleading with her big brown eyes for me to let her go. I could no longer justify turning down her classmates’ events because of Covid, so I found the truth falling out of my mouth instead. “You can go, but I’m probably just going to drop you off,” I told RoRo. “It’s really hard for me to be around families and see healthy children JJ’s age right now. It makes me too sad.”
I immediately regretted my words. I shouldn’t have said that. That’s too heavy for a seven-year-old to process.
But RoRo just nodded and ran off to wash her hands before breakfast. A minute later she was back, a pensive look on her face. “You know, Mom,” she told me, head cocked to the side. “I don’t get sad when I see a healthy four-year-old. I just see it as a miracle.”
As I hid my misty eyes behind a milk carton, I wondered how my first-grader had become so wise. But I didn’t wonder for long. I knew why RoRo had a perspective on the situation that was closer to that of a seventy-year-old than a seven-year-old. Being JJ’s sister has changed my oldest daughter in irrevocable ways. Our family—RoRo included—has been through so much in the past two years that none of us is quite the same. But this isn’t necessarily a bad thing. It has turned the two little girls I love into people I also greatly admire. I am proud of JJ for working hard through all of her obstacles and struggles, but I’m just as proud of RoRo for different reasons. I love her for her poise, empathy, understanding, maturity, and the sweetness with which she treats her sister.
Before I wrote this post, I looked around for research and information about how siblings of special needs children benefit from their family situations. I didn’t find much. Many people pay lip service to the silver linings, then spend most of their time giving parents advice about carving out time for their typically developing children and avoiding all the horrific parenting pitfalls of doom. We are supposed to be on the lookout for perfectionism, an over willingness to please, rebellious behavior, anxiety, depression, and a host of other things.
These are certainly important things to keep in mind, but not what I want to focus on. Instead, I’d like to pay tribute to my beautiful, kind, funny, smart seven-year-old and all the ways in which she has risen to the challenge of the past few years. Being JJ’s sister has made RoRo more flexible, more able to live in the moment, more accepting of differences in others, more empathetic, and a rock-star at coping with difficulties.
Because of our family situation, there are many things that don’t faze RoRo. She has personal experience with disabilities, developmental delays, communication challenges, and medical complexities. My oldest daughter is able to deal with these things honestly and head-on, though she has developed a tact I hadn’t thought possible in someone so young. While at the park one day, she caught sight of a mother and her disabled daughter. RoRo was not afraid to approach them, despite the fact that the girl in the wheelchair was making loud noises and unusual movements. Many young children would ask something along the lines of, “What is wrong with her?” or “Why is she doing that?” Still others would be too embarrassed or afraid to acknowledge these people. But RoRo marched right up to the girl’s mother and asked matter-of-factly, “What’s her diagnosis?” She then listened, interested, to the woman’s explanation before describing her own sister’s diagnosis.
RoRo is not only unselfconscious when talking to or about someone with differences. She’s also not afraid to broach uncomfortable, heavy subjects. In our family, we regularly discuss religion, our views about the fairness/unfairness of the universe, what happens after we die, and how people with disabilities are treated. Many adults (myself included) often feel uncomfortable diving into these topics of conversation, but not RoRo. To her, difficult things and people who are different are simply a fact of life. They are a part of her daily reality.
The older RoRo gets, the more empathetic she becomes. She was a naturally sweet child, even before JJ was born. But since JJ’s disabilities have surfaced, my oldest daughter has tried to help out in every way she can. She pushes her sister in the gait trainer, runs and fetches medications and equipment, and picks out songs to calm JJ when she is bored or upset. RoRo inherited her father’s interest in engineering and can often be found building something she hopes will help her sister. She has made paper-and-tape figures for JJ’s therapies, accessories for JJ’s gait trainer, and even a little pillow fort to protect against JJ’s breath holding episodes.
RoRo and JJ don’t have anything like a normal sibling relationship, but this is as much a boon as it is a deficit. It’s true that my two girls have never done many of the things typical siblings do with each other. They have never had a conversation, played a game, shared a secret, and or ganged up together on their parents. But they have also never fought over a toy, tattled on each other, had a physical altercation, or exchanged a single unkind word. RoRo is often very distressed by squabbling siblings and their casual cruelty. The only role she has ever known is that of helper and protector. She once admitted that she wanted to marry JJ when they grew up. Startled, I asked her why. She shrugged and looked at me as though the answer should be obvious. “Because,” she told me, “That way we can live together and I can always take care of her.”
RoRo’s kindness toward her sister is all the more remarkable because she has more reason than most to resent her sibling. Because of the chaos created by JJ’s terrible, screaming meltdowns when her Rett Syndrome first began to manifest, RoRo was sent away to live on my in-law’s farm. My husband and I did not see her for eight weeks. RoRo also missed out on the in-person kindergarten she was so excited about because we needed to shelter her sister from the pandemic. Thanks to JJ’s complicated health issues and breath holding episodes, our family doesn’t often invite other children into our home. We also very rarely travel. When RoRo was asked to bring a picture of her favorite family vacation to her first-grade classroom, she wasn’t able to. But it didn’t seem to bother her. She just brought a picture of JJ instead.
RoRo is not the only sibling of a disabled child with this level of kindness, dedication, poise, and maturity. I often hear moving stories about the typically developing children of friends and acquaintances. These are young children who share their pacifiers and toys so they can help calm their disabled siblings. Grade schoolers who feed their sisters, bite by bite. Teenage girls whose cheerleading squads feature a little girl with Rett at the top of their pyramids. Young men and women who create businesses and run marathons to raise money for a cure. Like RoRo, these siblings care deeply about their brothers and sisters. There’s every chance they, too, exhibit the qualities I see building in my oldest daughter—empathy, flexibility, resilience, and persistence.
As the research points out, there are many ways in which things can go wrong for a child with a disabled or neurodiverse sibling. I know it’s my responsibility to watch out for potential problems. I need to make sure RoRo doesn’t feel ignored, worry about her role in JJ’s future, or feel she has to be perfect to make up for the stress in our lives. But RoRo’s role as JJ’s sibling isn’t just accompanied by parental responsibilities. It also comes with real pleasures. Day by day, it's my privilege to watch my oldest daughter learn, grow, and transform into someone I’m extremely proud to know and love.
Life has thrown more difficulties at RoRo than I would have liked, especially at such an early age. But she is learning to cope with these obstacles with fortitude and kindness. Whatever fate has in store for our oldest child, she has the skills and perspective to face things bravely and sensibly. RoRo is my sweet, wise, courageous, compassionate helper, and I am lucky to be her mother. If I wanted to, I could even choose to see her presence in my life as more than luck. I could choose to see it as a miracle.
How have your typically developing children grown and changed? What are you most proud of?