Rett Syndrome Awareness

In honor of that, I share with you this piece of my life.

Growing Up in the Shadow and Light:

Being the Younger Sibling of Someone with a Disability

Being the sibling of someone with a disability shapes a person in quiet but profound ways. As the younger sibling of a sister with a rare disorder, Rett Syndrome, I learned so much from someone who has never been able to speak.  Rett Syndrome is a neurological condition and caused by a genetic mutation on the X Chromosome.  It occurs primarily in girls, and they can often develop normally for the first 6–18 months of life, then gradually lose acquired skills such as purposeful hand use, speech, and motor coordination.  My sister is 38 years old, but functions at the age of a 9-12 month old.

I learned early what compassion, patience, and faith in action truly look like. But I also learned about grief, loss, pain and silence—the kind that comes from not wanting to add to the weight my parents were already carrying.

For many siblings, childhood means learning to share attention, space, and time. For those in families with a child who has a disability, it also means sharing emotional energy, and that distribution is never equal. Doctors’ appointments, therapies, and unexpected crises can easily become the rhythm of family life. As a younger sibling, I often observed quietly, allowing frustration and resentment to build within. I was trying to understand where myself and the needs I had, and the needs I didn’t know I had, belonged in this puzzle. I’ve also learned that what looks like strength on the outside can sometimes be a form of self-protection on the inside. Hyper-Independence, the deep, sometimes unconscious belief that it’s safer to rely on nobody but yourself.

My sister taught me lessons that no textbook ever could. She showed me that joy can exist alongside sorrow, and that strength doesn’t always look like independence—it can look like trusting others or accepting help.  It’s not the ability to carry more, it is the wisdom to set things down.  She reminds me daily that every person is made in the image of God, no matter what their abilities are. Her life is a testimony—a living reminder that God’s power is made perfect in weakness (2 Corinthians 12:9).

Now, as a Christian counselor, I see how this experience quietly formed my heart for others. I understand what it feels like to love deeply but not always know how to help, to feel both gratitude and guilt, to carry empathy that sometimes turns into emotional responsibility. Every time I counsel someone who feels broken, I remember: brokenness is not the end of the story. In God’s hands, it can become the beginning of something beautiful.

Faith can be both an anchor and a challenge in these moments. It asks us to trust when we cannot see the purpose, to believe that God is present even when healing or help doesn’t come as we hope. I learned that spiritual strength often looks quiet. It’s the strength to keep showing up, to love without condition, and to trust that God’s grace fills the spaces where our strength runs out.  In the midst of uncertainty, laying down my pseudo-independence has helped me see that love is not measured by perfection, but by presence. God used my sister’s life to shape mine—not through grand lessons, or revolutionizing epiphanies, but through the daily rhythms of grace, surrender, and quiet strength.  This life has given me the lens to see His persistent pursuit after my own heart. I am directed to the gracious invitation from Jesus to all who are weary, that we will find rest (Matthew 11:28).  A place where we can be heard, cared for and seen.

A Therapy Perspective: Siblings in these families often mature quickly, learning to read the emotional temperature of a room and anticipate others’ needs. While these traits can become strengths—leading to compassion, resilience, and service—they can also mask hidden loneliness or guilt. I’ve learned from experience that it’s vital to give siblings permission to have their own stories, their own feelings, and their own need for care.

When I work with families now, I gently remind them: the sibling’s heart matters too. They are often the quiet witnesses of the unspoken emotional landscape. Supporting them emotionally and spiritually allows the whole family to heal, grow, and thrive together.

About the Blogger:

Olivia is a “Glass Child”, Wife and Mother, LCSW and owner of Salt and Light Counseling in Lake Havasu City, AZ.  She specializes in trauma and works closely with first responders and veterans with PTSD.  She partners with a local domestic violence shelter offering short term counseling support to women in crisis and works with families that have children with special needs.  She is a certified SibShop Facilitator and is working with Building Bridges in LHC to make parent and sibling support groups a rhythm in our community.