Tag: Pat Hornbecker

A special message from Pat Hornbecker, President, The Arc of California Board of Directors, and mother of Joseph

Mother’s Day arrives wrapped in flowers and cards, breakfast trays and posed photos. It is a day meant to celebrate love, care, and devotion. And it does. But motherhood, for most of us, is not a single story told once a year. It is a lifetime of decisions, doubts, fierce hope, and quiet resilience, often unseen.

For mothers raising children with developmental disabilities, this day can feel complicated. We celebrate deeply, because our love runs deep. But we also carry a reality that does not always fit the tidy narratives offered to us. Our motherhood is often marked by advocacy meetings instead of playdates, by paperwork instead of rest, by planning not just for childhood, but for adulthood and beyond.

And yet this is not a story of sadness. It is a story of work.

• • The work of learning systems we never intended to master.
  • The work of holding our children’s dignity at the center of every decision.
  • The work of loving fully while imagining a future that will require support long after we are gone.

This work is not unique to disability, even if its shape is. Every mother knows what it means to worry in the quiet hours. To question whether we made the right choice. To carry guilt that whispers we should have done more, or perhaps done it differently.

Maternal guilt is a language passed quietly from one generation to the next. Daughters learn it long before they become mothers themselves. Mothers inherit it from their own mothers, often without naming it. It shows up in the way we apologize for setting boundaries, the way we measure ourselves against expectations no one explicitly gave us, the way we weigh every decision against the imagined judgment of others.

For mothers of a child with disabilities, that guilt can become louder. Should I push harder, or step back? Am I protecting my child, or limiting them? Am I doing enough? Am I doing too much?

These questions don’t disappear with time. They evolve as our children grow. When other parents worry about college applications, we worry about services that may or may not exist. When others imagine stepping back, we often step further in. Independence, ours and theirs, takes on a different meaning.

And still, our experience is not separate from motherhood as a whole. It is woven into it.

Motherhood has never been a single, pure ideal. It has always included strained relationships, generational trauma, cultural expectations, and decisions that ache even when they are right. Some mothers are caring for children; others are caring for aging parents. Some are grieving children they lost or relationships that never healed. Some are learning how to mother differently than when they were mothered.

This Mother’s Day, we can hold all of that.

We can celebrate the mothers who fight systems while nurturing souls.

We can honor the mothers whose strength looks like persistence, and the ones whose strength looks like rest.

We can make room for mothers who love fiercely but struggle quietly with guilt, with exhaustion, with the weight of responsibility that doesn’t take holidays.

For legislators and service providers who read this: know that when mothers advocate, we are not asking for special treatment. We are asking for sustainable support, for systems that recognize humanity before eligibility, and for policies that understand caregiving as essential work that spans a lifetime. The decisions you make echo through kitchen tables long after the meetings end.

For families: your work matters. Even when it goes unseen. Even when it feels endless. Even when you’re unsure whether you’re getting it “right.”

And for every mother reading this, regardless of your story, let this day offer permission. Permission to celebrate without comparison. Permission to grieve what is hard while honoring what is strong. Permission to release the guilt that was never yours to carry alone.

Motherhood is not one story. It is many. And all of them deserve to be held with respect.

Happy Mother’s Day!

By Pat Hornbecker, Board President, The Arc of California

Through the eyes of many generations, I see motherhood grow and change. I was fortunate enough to have my grandmothers in my life into my 30’s and my mother into my 60’s. And so, my three daughters and son Joseph were able to witness these all important and influential relationships. And the mother’s before me were also able to watch me move into motherhood with the exceptional experience of parenting a child with severe disabilities. He taught us all well! Now my daughters have kids of their own. I sit in the middle of this generational swing, observing the differences and similarities but most of all seeing the love that remains constant for all generations.

The expectations of mothers are different. We now can choose to become mothers, unless that right is taken away. We can expect acceptance for our choices without reprisal or shame. We can expect to have a career and motherhood run simultaneously with success. We can also choose to stay home to raise our children and expect respect. My grandmothers knew none of these choices and my mother only dreamed of the career she sacrificed as I came into her life as her firstborn child.

I see the mothers around me who have children like my Joseph, with great needs and gifts, and know that this experience binds us together. We support one another better now than ever before. We are building the infrastructure necessary to support our children and their siblings and communities. We have learned from our grandmothers and mothers that we are change-agents and the resource from which the future grows.

Mom, thanks for your strength and determination. Grandmas “Totsie” and “Nana” thanks for your lessons about family. Thank you to all the mothers who have taught me so much and given me strength every day.  Happy Mother’s Day 2023!