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”…
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.
What Families Can Do Right Now
You don’t have to run a lab or fund a clinical trial to shift the landscape. You can:
Advocate for cross-disease research funding
Support platform technologies, not just disease-specific projects
Share your story in ways that highlight broader scientific needs
Encourage collaboration rather than competition among advocacy groups
Small shifts in messaging ripple outward.
The Bottom Line
Rare disease families are some of the strongest advocates in medicine. But strength alone isn’t enough — strategy matters.
The future of cures will be built on shared science, shared platforms, and shared momentum. The sooner advocacy reflects that reality, the sooner therapies move from possibility to practice.
And for families waiting on answers, time is the one resource none of us can afford to waste.