SPG 4 Denovo

The Unfiltered Truth About Our Life With Grace

I don’t think anyone really understands what our life is like. Not family. Not friends. Not doctors. Not even other parents unless they live this exact version of it.

People see a little girl who walks, who talks, who smiles. They hear “cerebral palsy” or “developmental delay” and imagine something hard but manageable. Something with therapies and accommodations and optimism.

That is not what we live with.

Grace has Hereditary Spastic Paraplegia from a de novo mutation. It wasn’t inherited. It wasn’t preventable. It just happened. A typo in her DNA that rewrote our lives.

And the hardest part is not what it is today.

The hardest part is knowing this is progressive and unpredictable.

What It Feels Like to Parent Under Constant Threat

Every day feels like standing under a ceiling you’re not sure will crack tomorrow or in twenty years.

You watch your child’s walk the way other parents watch stock charts or weather warnings. You notice every stumble, every stiffness, every delay. You’re never just watching your child play. You’re running an internal neurological surveillance program.

Is this just fatigue?

Is this progression?

Is this the start of losing something we will never get back?

There is no off switch.

The Small Things That Are Not Small

Grace couldn’t hop until she was four. And when she finally did, it was while holding onto something.

That’s not cute. That’s not a milestone story for Instagram. That’s a marker of how hard movement is for her.

She walks on tiptoes because her muscles are tight. She loses balance because her nerves don’t communicate the way they should. She falls because her body can’t correct the way other kids’ bodies do automatically.

She cannot be left alone. Ever.

Not in the bath.

Not on a bed.

Not near stairs.

If she slips, she may not be able to save herself. So we hover. We plan. We design our house and our lives around risk mitigation.

Other parents leave a kid in the tub for thirty seconds. We don’t.

That’s the difference between normal parenting anxiety and living in a state of constant safety triage.

The Future That Sits in Our Throat

We know she will likely need a wheelchair or a catheter. We just don’t know when.

We don’t know if she’ll walk independently at 10. Or 20. Or ever without assistance.

We don’t know if she’ll be able to live alone. We don’t know if she’ll need caregivers after we’re gone. We don’t know if she’ll lose skills or plateau or surprise us.

Doctors can’t tell us. Research is thin. Case reports are scattered. Every child is different.

So we carry the weight of every possible future at once.

The Grief No One Sees

There is grief that has nothing to do with loving Grace less.

We grieve the assumptions we made when she was born. We grieve the mental movie of her running freely, playing sports, being careless and physically fearless. We grieve the simplicity of imagining adulthood without accessibility planning.

You don’t lose your child. You lose your certainty.

And you grieve in silence because society doesn’t understand anticipatory grief. They think you’re pessimistic. Or dramatic. Or ungrateful.

You’re just realistic.

The Exhaustion That Never Ends

This life is not just emotionally heavy. It is administratively suffocating.

Therapies. Appointments. Equipment. Insurance denials. Appeals. Specialists. Paperwork. School meetings. Research. Planning.

You become a case manager, advocate, medical researcher, logistics coordinator, and parent simultaneously.

There is no “off duty.” There is no break where your brain stops running scenarios.

Sleep doesn’t restore you because your mind is still carrying contingency plans.

You are tired in your bones.

How It Changes Us

We are not the people we were.

We are more serious. More guarded. More selective with energy. More distant from casual social life.

We have less tolerance for trivial problems. Less patience for platitudes. Less interest in small talk.

We are quieter not because we’re unhappy, but because we are constantly processing.

This life shrinks your social world unless people intentionally stay.

The Fear That Lives Under Everything

There is the fear of progression.

The fear of injury.

The fear of pain.

The fear of a system that will fail her.

The fear of what happens when we are old or gone.

There is no clean narrative arc. No “and then it got better.”

We live with a chronic uncertainty that rewires your nervous system.

Why We Sometimes Seem Cold or Absent

We are not disengaged. We are overloaded.

Our baseline cognitive and emotional load is higher than most people’s crisis mode.

So when we cancel plans, it’s not flakiness. It’s triage.

When we seem distracted, it’s because part of our brain is always on guard duty.

When we seem emotionally muted, it’s because we’re conserving energy to keep functioning.

This is not distance. It is survival architecture.

The Part That Makes It All Worth It

Grace is extraordinary. Not in an inspirational-poster way. In a stubborn, funny, demanding, loving, complicated human way.

She laughs. She argues. She loves. She is herself.

She is not a diagnosis. But the diagnosis is part of her life, and therefore part of ours.

We love her with a ferocity that coexists with fear and grief and exhaustion.

All of those emotions can be true at the same time.

What I Wish People Understood

This is not a tragedy story.

This is not a hero narrative.

This is not a motivational tale.

This is a family living inside uncertainty, logistics, love, fear, and fatigue simultaneously.

We do not need pity.

We do not need false optimism.

We need presence, patience, and honesty.

We need people to stay even when this makes them uncomfortable.

The Hardest Sentence

We don’t know what her life will look like.

And neither do you.

But we live with that uncertainty every day, not as a thought experiment, but as the background radiation of our existence.