Love and Grief Can Exist in the Same Heart:

The loneliness, guilt, and exhaustion behind raising a child with severe autism.

Lately, I’ve been struggling, and I don’t know if I’ve done a good job putting it into words. Some days the weight of everything just hits me harder than others, and today is one of those days.

I don’t share this because I want pity. I don’t share it because I’m angry with anyone. I share it because I think so many parents raising children with severe disabilities carry these feelings quietly, afraid to say them out loud because we’re worried people will misunderstand our hearts.

Raising a child with severe autism is the hardest thing I have ever experienced.

There are honestly no words that can fully describe it unless you’ve lived it. It’s a constant state of being “on.” You’re always anticipating the next meltdown, the next transition, the next therapy appointment, the next challenge. It feels like living in fight-or-flight mode every single day. There is no off switch. There is no break. There is no moment where your mind truly rests.

People often say, “We’re here for you,” or “I wish I could help.” I know those words come from a place of love, and I truly believe people mean them. But after a while, those words begin to feel empty when nothing ever changes.

If you’re here for us, why do we still feel so completely alone?

No one calls and says, “Why don’t I come sit with Ryder for an hour so you and Ed can go have dinner?” No one says, “Go take a walk together. I’ve got this.”

Maybe people don’t realize that one hour could mean everything to us.

One hour to breathe.

One hour where we aren’t constantly watching, redirecting, preventing, anticipating, or managing.

One hour to remember what it feels like to simply be husband and wife instead of caregivers.

My husband I haven’t had a date night in over a year. By the time the kids are asleep, we’re exhausted. We don’t have the energy to stay up and watch a movie together or simply sit on the couch and talk. Some days it feels like we’re surviving instead of truly living.

We love each other deeply, but when you’re constantly in survival mode, it’s easy to become teammates more than husband and wife. We are fighting the same battle together, but we rarely get the opportunity to reconnect outside of that battle.

I understand why so many marriages struggle under the weight of raising a child with severe disabilities. It’s not because people stop loving each other. It’s because the demands are relentless, and there is so little left at the end of the day to nurture the relationship.

The loneliness is something I don’t think people understand.

Even when you’re surrounded by people who love you, you can still feel completely isolated.

I also want to say something that is important because I never want this to be misunderstood.

This isn’t meant to diminish the love or support we’ve received from our family.

We have family who have prayed for us, encouraged us, checked on us, celebrated Ryder’s victories, cried with us through the hard moments, and supported us in countless ways. I have aunts and uncles who love us deeply, and if they lived here, I have no doubt they would be here in a heartbeat. Distance is something none of us can control, and I would never want them to think these words are directed toward them because they aren’t.

I am incredibly grateful for every phone call, every text message, every prayer, every encouraging word, and every act of kindness we’ve received.

My heart is full of gratitude for all of it.

At the same time, there is a unique kind of loneliness that comes from needing physical, day-to-day help that simply isn’t available. Gratitude and loneliness are not opposites. They can exist together.

Before last October, my mom was my biggest support.

Then she fell, broke her neck, and we almost lost her.

Watching her fight for her life was devastating. Since then, she has endured multiple surgeries, and she is still recovering.

She physically cannot help us right now, and I completely understand that. I don’t want her helping when she needs to focus on healing. My sister has been by her side, exactly where she should be, and I wouldn’t want it any other way.

I love them both, and I know they’re doing exactly what needs to be done.

But losing that support has changed everything.

I lost the person who carried me.

Not because she stopped loving me.

Not because she chose not to help.

Life simply changed in the most heartbreaking way.

And while I completely understand why things are the way they are, it doesn’t make the loneliness disappear.

It has left me feeling like the entire weight of our daily life rests on me and Ed.

There is another grief I don’t think I’ve ever admitted out loud.

I’m grieving the daughter I always thought I would get to be.

I always imagined that if my mom ever needed me, I would be the one beside her. I would take her to appointments, help care for her after surgeries, cook meals, sit with her, and give back even a fraction of the love and care she has always given me.

Instead, I’m in a season of life where I simply can’t.

Sometimes I feel like I’m failing as a daughter because I can’t help my mom the way I’ve always imagined I would.

I’m incredibly grateful that my sister is able to be there for her. She is exactly where she needs to be, and I wouldn’t want anyone to take her place.

But gratitude doesn’t erase grief.

I can be thankful that my sister is helping Mom while simultaneously mourning the fact that I can’t.

Those two things can exist together.

There is another part of this journey that weighs heavily on my heart.

I grieve for my daughter, too.

My daughter is developing typically, and there are so many moments I imagined sharing with her.

Sitting on the floor coloring together.

Building towers.

Playing pretend.

Doing puzzles.

Reading books.

The simple moments so many parents get to enjoy without thinking twice.

Those moments are different in our home.

Many toys are difficult to keep because my son doesn’t simply scatter them. He gathers them, carries them away, and hides them in little places all over the house. Toys disappear into closets, drawers, bags, behind furniture, and little hiding spots that sometimes take days or weeks to find. Pieces from puzzles, blocks, pretend play sets, crayons—things simply disappear.

Because of that, it is incredibly difficult to keep track of my daughter’s toys or maintain a typical play space for her. Even when she wants me to sit down and play, my attention can never fully leave my son. I’m always listening. Always watching. Always anticipating what might happen next.

I can’t simply lose myself in coloring with her or building a tower together because my mind never gets the chance to rest.

That breaks my heart.

Sometimes I watch her at daycare or with her cousins and see her enjoying activities that are much easier in those settings than they are at home. I’m thankful she has those experiences because she deserves them.

But there is still a quiet grief in knowing I can’t always give her those same moments myself.

She doesn’t understand that yet.

She’s still little.

Instead of frustration, she shows compassion.

Instead of resentment, she loves her brother with a tenderness that amazes me every day.

She is only two years old, yet she already does things for her big brother that many children her age never would. She tries to help him. She notices when he needs something. She loves him fiercely.

She has a wisdom far beyond her years.

I am so incredibly proud of the little girl she is becoming.

But I also grieve that she has had to grow up in circumstances that ask so much of her so early in life.

I hope one day she knows that if I ever seemed distracted, exhausted, or pulled in too many directions, it was never because she wasn’t enough.

She has always been enough.

She has always been deeply loved.

One of my greatest heartbreaks is wishing I could divide myself in two—one version of me to give my son everything he needs and another version of me to give my daughter every moment she deserves.

One of the hardest things for me lately has been hearing people describe autism as a gift.

I understand why people say it.

I know every autistic person is different.

But severe autism—the kind where children cannot communicate their needs, where they become overwhelmed to the point of screaming, crying, hurting themselves, or living in constant anxiety—is something very different.

Every day when I pick my son up from ABA, I see children desperately trying to communicate but simply can’t.

My son lives that reality too.

As a parent, there is no greater feeling of helplessness than watching your child desperately want to tell you something and not being able to.

If I could take that burden from him, I would.

In a heartbeat.

I would gladly carry it myself if it meant he could experience peace.

That is why it hurts when people romanticize severe autism.

I don’t see a gift when my son is trapped inside a body that won’t let him tell me what’s wrong.

I see a little boy who deserves to tell me when he’s scared, hurting, excited, hungry, or simply wants a hug.

That isn’t something I celebrate.

It’s something I grieve for him every single day.

And then there’s the guilt.

I constantly remind myself that my son doesn’t have cancer. He isn’t fighting a terminal illness. I know there are parents walking paths I cannot imagine, and I never want to diminish their pain.

I am grateful beyond words that my son is here.

I am grateful that I get to hug him.

I am grateful for every smile, every laugh, and every milestone.

But gratitude and grief can exist together.

Being thankful doesn’t erase the exhaustion.

It doesn’t erase the loneliness.

It doesn’t erase the fear.

It doesn’t erase the heartbreak.

Loving my son with every part of who I am and acknowledging how incredibly hard this life can be are not contradictory.

Both are true.

I don’t need people to have all the answers.

I don’t need someone to tell me everything will be okay.

Sometimes I just need someone to acknowledge what this life actually looks like.

To say, “I see how hard you’re fighting.”

“I see how much you’re carrying.”

“I see the sacrifices you and your husband make every single day.”

“I know you’re exhausted.”

Because sometimes it feels like no one really sees it.

Some days I don’t need advice.

I don’t need another cliché.

I simply need someone to sit beside me and acknowledge that this is incredibly hard.

Because it is.

And some days, I am just tired.

Not tired because I don’t love my son.

I’m tired because I love him so fiercely that I carry his struggles right alongside him.

I would fight for my son every single day for the rest of my life.

I would choose him every single time.

But choosing him doesn’t mean I don’t grieve.

It doesn’t mean I don’t mourn the moments my husband and I have lost.

It doesn’t mean I don’t mourn the childhood experiences I wish I could give my daughter.

It doesn’t mean I don’t mourn not being able to care for my mom the way I always dreamed I would.

Love and grief can exist in the same heart.

And they do.

If you’ve ever wondered how to help a family raising a child with severe autism, don’t underestimate the gift of simply showing up.

Offer an hour.

Bring dinner.

Sit with them.

Encourage them to take a walk together.

Don’t just say, “Let me know if you need anything,” because many of us don’t even know how to ask anymore.

Sometimes the greatest gift isn’t having the perfect words.

Sometimes it’s simply saying, “I’ve got you.”

Because for families like ours, one hour can feel like the greatest gift in the world.

Thank you for spending a few moments here with me.

Until next time…

Keep finding beauty, honesty, and hope—even on the hardest days.

With love,

The Honest Autism Mom

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