I'm a Special Needs Sibling. These are 10 Lessons I've Learned from My Brother That Can Help All of Us Live More Fully

My brother Eric’s birth was “normal,” but our parents soon noticed that something about his development wasn’t. After a series of examinations and consultations with various doctors, he was diagnosed with cerebral palsy, a neurological disorder caused by damage to or abnormalities inside the developing brain that impairs brain function, and for which there is no cure.

For some people with cerebral palsy, this diagnosis presents with minimum, though noticeable symptoms such as reduced speech or movement. For Eric, his condition was far more profound, with brain damage denying him use of language to communicate and no control over his muscles.

Last week, Eric passed on. I was with him, our sister Rachel, and our loving parents as he died peacefully. In the days since, Rachel and I have talked a lot about how we may not have had a typical sibling relationship with our brother, yet he was the most important teacher of our lives.

Here’s what Eric taught us—and what it can show all of us about how to live more fully.

Lesson 1: Appreciate Everything You Can Do

It’s estimated that the average adult makes 35,000 conscious decisions each day. Tasks like turning off our alarm clock, brushing hair and teeth, choosing what to eat, adjusting persnickety socks, and saying, “I love you” are just a few. For Eric, executing any one of these deeds would be a miracle, making me acutely aware and abundantly appreciative of my own abilities.

I first internalized this the day I learned how to swing on a swingset by myself, immediately understanding that my brother would never know the joy of such independence. Feeling guilty for being “well” is a common experience for siblings like me, and while it would be easy to be swallowed by sadness, something else helps me to transmute it: living with gratitude. By appreciating every little thing that your body and mind can do, over time you will realize that not one of them are in fact, “little.”

Lesson 2: Empathy is the Answer

Nobody chooses to live with a neurological disorder or to be born with a disability any more than we choose our height or skin color. No matter why someone is disabled—be it a birth trauma, a childhood accident, a genetic anomaly, or something else—not one soul asked for it. Still, we aren’t as kind as we could be.

Over the years I’ve paid close attention to how others encounter the differently abled in public. Whether at a grocery store or a park, common reactions include ignoring, staring, and not-so-subtle avoidance (turn and go!). Unfortunately, mocking and name-calling happen frequently, too. As hurtful as this is to experience, I suspect such actions stem from modeled behavior or a fear of “other”. Perhaps some were simply never taught what to do.

The answer is simple: extend empathy.

To do this, imagine what life might be like from their perspective and consider how they may feel. Then, consider how you might want to be treated if this were you—and act accordingly.

Lesson 3: Speak Up Even Especially When Your Voice Shakes

Thirty years ago, a high school teacher broke my heart. In response to a classmate’s joke, Mr. X quipped, “You’re a retard.” As the class laughed, my stomach lurched and my face flushed red with anger. To hide my hurt, I laid my head down on my desk and silently debated what to do. When the dismissal bell rang, I approached Mr. X.  With voice shaking and tears streaming, I told him about Eric and how his use of the R-word as a slur was both the most disrespectful and disappointing act of any adult in my life.  His response to my distress stunned me as much as the offense itself.  “Aww come on, kiddo” he chuckled, then dismissed me by opening his newspaper.

I left the classroom and never spoke to him again. Over the next two years Mr. X avoided me. Though he would avert his eyes on the infrequent occasions we’d pass in the hall, I found satisfaction in looking directly at him—seeing that it was now he who was flush-faced and nervous.

Though I blubbered my way through, I learned that speaking up for yourself and others isn’t always easy, but it’s worth it—especially when defending the defenseless.

Lesson 4: Share Your Gifts, Shine Your Light

We all want our lives to matter; we all want to make a meaningful difference and to be remembered for our contributions. Instead of measuring our impact by the achievements hanging on the wall, the balance in our bank account, the likes on our last post, or the years since our birth, consider quantifying life in a different way: by the frequency in which you’ve shared your gifts.

Maybe you’re a talented gardener or excellent strategist. Perhaps you bake, clean, sing, or listen better than most. If you’re not sure what your innate gifts are, start by soliciting loved ones for feedback. Then, acknowledge, embrace, and share your gifts with others. We all have gifts worthy of sharing, and when we do, we can meaningfully impact others.

Lesson 5: Use Can-Do Courage to Live

Getting from where we are to where we want to be requires belief, commitment, and disciplined action. Whether wanting to repair a relationship or invite someone on a date, learn to crochet or learn a new language, running a marathon or running for elected office, if something is calling you, don’t let fear hold you back. Your desire may feel uncomfortable, but if you CAN, then DO! Give it your best effort without being attached to the outcome.

For example, I’m a back-of-the-pack runner and my crocheted efforts are barely giftable, but that doesn’t lessen the joy of the activity or prevent me from participating. Using can-do courage may seem like a small act, but when compounded, it equates to a lot of living. In this way, I’m not only seizing opportunities to experience my life, but I’m honoring Eric and those who would if they could.

Lesson 6: Pause and Practice Patience

For a myriad of reasons, we all move at a different pace. Some of us independently maneuver through the world with ease, while others labor under the weight of cumbersome equipment or rely on others for physical navigation. It’s likely that expressing frustration at someone’s pace isn’t going to make them move any faster, nor are we helping ourselves by getting bothered.

However, having to wait offers an opportunity to help yourself. By pausing and taking deep breaths, you’re practicing patience. When we do this, we allow our nervous system to calm and collect—an act that positively impacts our physiology, both slowing our heart rate, and managing spikes in blood pressure. At a minimum, this is a better alternative to spewing a reactive comment or angrily huffing by. No matter the pace, we’re all trying to get somewhere, so remember to pause and practice patience.

Lesson 7: Be A Champion for Caregivers

When confronted with scary real-world events, Mr. Rogers famously encouraged us to “Look for the helpers.” In the same spirit, to witness love in action, I say, “look for the caregivers.” Whether caring for a parent with cognitive decline, a child with a life-threatening medical condition, or a grieving friend, those who physically and emotionally care for us are doing God’s work.  

Unfortunately, their saintly efforts are often woefully unrecognized and under supported. In addition, studies show that caregivers suffer a variety of health problems, including higher rates of anxiety, depression, and stress compared to their peers. Yet, due to factors such as increased life-expectancy and a shortage of professional care facilities, an estimated 44 million Americans currently serve as an unpaid caregiver. Recipients of care and those who bear witness know full-well the immeasurable blessings of a loving caregiver. You likely won’t find these unsung heroes with a verified blue check mark or thousands of followers on social media (as if they have time!), but their contribution to society is indisputably worthy of such rock-star recognition. (Mom and Dad, I’m looking at you.)

Lesson 8: Discipline Your Disappointments

Life is full of disappointing events: the friend who moved away, the promotion you didn’t receive, the partner who betrayed you. For some, disappointment comes early and often, which is why it’s helpful to embrace this life skill sooner than later.

Step 1: When disappointment comes, allow yourself to process and fully feel the disappointment. Be mindful of how you respond and how the disappointment is impacting you. Take time, but don’t wallow.

Step 2: As the feelings surrounding your disappointment ease, turn your attention to what is possible or what is next.

Each time I discipline my disappointments, I spend less time at my own pity-party and recover a little easier, too. The ability to withstand and recover from difficulties is known as resilience, and studies show that just like a muscle, it’s something that we can build and strengthen. Struggling with a current disappointment? Discipline it and flex—your resilience will be buff in no time.

Lesson 9: Ask for Help

No matter how able we are, we all need the help of others to navigate life. Whether long-term support is required to meet our most basic needs, or we need help with a single task, there is no shame in asking for or receiving help. The more we do, the more we’re able to recognize that no matter how unique we believe our human experience to be, we’re not alone—others have had similar experiences and can likely relate. But if we don’t seek support or ask for help, it’s unlikely we’ll receive what we desire.

False beliefs of inconveniencing others or appearing weak prevent many from seeking support. However, studies show that people are more willing to help than we expect, and both receiving and providing help has lasting advantages including strengthened connections. In addition to those in your personal network, talk with your care team; doctors and therapists are excellent resources for services and may be able to help connect you to others with shared or similar challenges. Whether you’re in need of a friend to text, an online community to join, an in-person weekly support group, or a nurse for daily homecare, ask for help and keep asking until you have it.

Lesson 10: Learn, Do, Teach. Repeat.

Though it’s true that Eric didn’t live a “normal” life, he undeniably lived an extraordinary one if you measure his life by his impact. Not only was he the single most important teacher of my life, but he also influenced the lives of countless others, including family members, friends, neighbors, and people throughout his community (Mr. X included!).

It’s in the deeds and actions of his five nieces and nephews where a glimmer of Eric’s exponential impact shines through. Ranging in age from 13 to 21, they have never known life without their Uncle Eric, and because of him, they are moving through the world with gratitude, empathy, and respect for the differently abled. I suspect that eventually, they will model this for their own children, and one day, maybe even their grandchildren.

I hope Eric knew how grateful I am to be his sister and how deeply he influenced my life and inspired me to live. My greater hope is that in learning about Eric, he will inspire you, too. Whether by using your courage, practicing your patience, speaking out against the R-word, or speaking up for others, each empathetic act honors Eric and everyone living with neurological and physical disabilities.

Through your acts, yet another powerful lesson from Eric emerges: Some of us can move humanity forward without ever taking a single step or speaking one word.

Stephanie Sarazin is a writer, researcher, and grief educator. She is an avid reader, and recreational runner, and lives in North Carolina where she enjoys hiking and time outdoors. Her book Soulbroken: A Guidebook for Your Journey Through Ambiguous Grief is the 2023 Nautilus Book Award Gold Winner for Grief & Loss and can be found wherever books are sold.