A Little Extra Momming

06/22/2026

I took my first girls trip in nearly fifteen years, and I bout cried on the plane—not because I was leaving my family, but because five years ago I wasn’t sure a trip like this would ever be possible again.

If you’ve ever feared that caregiving has made your world permanently smaller, this one’s for you.

✈️The sky might actually be the limit.

https://open.substack.com/pub/extracarecollective/p/the-sky-might-be-the-limit?r=7y9v1l&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

06/15/2026

Choose Your Hard

Long before social media made popular the phrase “Choose Your Hard,” people understood a simple truth: every path carries a burden.

The Greek Stoics recognized it one way in the centuries just before Christ. They taught that suffering is unavoidable. Discipline is hard. Regret is hard. Courage is hard. Fear is hard. The question was never whether life would hurt, but what kind of hardship a person would embrace.

Christ teaches something remarkably similar, though with a deeper purpose. Jesus never promised an easy road. He told His followers to take up their cross and follow Him. The assumption was not that suffering could be avoided, but that suffering could be redeemed.

As the mother of a child with significant disabilities, I understand this reality intimately.

Being a caregiver is hard.

The appointments are hard. The therapies are hard. The sleepless nights are hard. The constant vigilance is hard. The uncertainty is hard. The emotional weight of loving someone who depends on you so completely is hard.

But saying goodbye to a child is hard, too.

Losing the opportunity to know them, love them, and be changed by them is hard.

Carrying memories instead of milestones is hard.

Wondering who they would have become is hard.

Many parents receive a prenatal diagnosis and are immediately presented with a picture of all the hardships that may lie ahead. They are shown the appointments, the surgeries, the feeding tubes, the therapies, the limitations, and the fears. What often goes unspoken is that there is no decision that removes hardship from the equation.

One path may contain years of caregiving.

Another may contain years of wondering.

One may require sacrifice.

Another may require grief.

The promise that ending a life will eliminate suffering is ultimately an illusion. It may change the form suffering takes, but it cannot remove it from the human experience.

This is not a statement of condemnation. It is an acknowledgment of reality.

We are finite people attempting to predict futures we cannot see.

A prenatal diagnosis can tell us that a child may face challenges. It cannot tell us the depth of love that child may inspire. It cannot tell us the joy they may bring. It cannot tell us how many lives they may touch. It cannot tell us what God intends to do through their brief life or their long one.

Most importantly, it cannot tell us how much peace comes from knowing that we loved faithfully through whatever timeline unfolded.

When we assume the authority to decide that a life is not worth living because it may involve suffering, we are making a judgment no human being is truly equipped to make. We do not know the number of our own days, much less the meaning of another person’s.

The Christian answer to suffering has never been avoidance.

It has always been love.

Love when the future is uncertain.

Love when the diagnosis is frightening.

Love when the burden feels heavy.

Love when the outcome is unknown.

The cross itself stands as a reminder that the hardest road is not always the wrong road. Sometimes it is the road through which God accomplishes His greatest work.

So yes, choose your hard.

But choose the hardship that leaves room for love, for faith, and for God to write a story bigger than the one you can presently imagine.

06/11/2026

When I was pregnant with Ellie and received her diagnosis, so much of the conversation around her life centered on fear.

Fear of suffering.
Fear of disability.
Fear of burden.
Fear of what our future might look like.

And to be honest — some of those fears were real. Parenting a medically complex child *is* hard. The world is not built to support families like ours very gracefully yet.

But what almost nobody explained to me was this:

Children like Ellie are not just hardship stories.

They are whole people.

Ellie is growing every day. Learning new things. Becoming stronger, more curious, more expressive, more joyful. She surprises us constantly. There is so much wonder in her life.

And loving her has changed me profoundly.

Caring for someone who may never “give back” in the ways our culture values has a deeply sanctifying effect on a person. It reshapes the way you see humanity itself. It teaches you that worth is not tied to productivity, independence, intelligence, or achievement.

A human life does not become valuable only when it is easy.

Children like Ellie remind us that dignity is inherent. That dependence is not failure. That vulnerable people are not interruptions to life — they are part of what makes us fully human.

Yes, this road is hard.

But it is also full of beauty, tenderness, love, growth, and meaning that I never could have understood before becoming her mother.

She is not valuable because she inspires people.

She is valuable because God is writing her story.

06/10/2026

We’re LIVE!!

Today I’m joining Alisa Childers to talk about something deeply personal: our journey of carrying and parenting children with Trisomy syndromes.

We also discuss the recent Ridgway decision to terminate a pregnancy following a Down syndrome diagnosis and why conversations like these matter. Families deserve accurate information, real support, and the opportunity to hear from those actually living this life every day.

If you’ve ever received a difficult prenatal diagnosis—or love someone who has—I hope you’ll listen.

Watch here:

https://www.youtube.com/watch?v=5IQDZqWrg-0

06/10/2026

Today I’m joining Alisa Childers to talk about something deeply personal: our journey of carrying and parenting children with Trisomy syndromes.

We also discuss the recent Ridgway decision to terminate a pregnancy following a Down syndrome diagnosis and why conversations like these matter. Families deserve accurate information, real support, and the opportunity to hear from those actually living this life every day.

If you’ve ever received a difficult prenatal diagnosis—or love someone who has—I hope you’ll listen.

Watch here:

https://www.youtube.com/watch?v=5IQDZqWrg-0

06/09/2026

WHAT IF POSSIBILITY HAD A SEAT AT THE TABLE?

Every time I hear about a family receiving a devastating prenatal diagnosis, I think about the moment their world changed—and how desperately they need more than fear and statistics.

For years, I’ve wanted to help families facing difficult prenatal diagnoses and devastating medical news about their babies.

I’ve wanted to give them what I desperately needed when I was new to all of this: honest information, lived experience, and hope grounded in reality.

When I thought about this work, I was always thinking about families like mine. Families who chose life while navigating fear, grief, uncertainty, and impossible questions.

But recently I’ve realized there is another group of families I haven’t thought enough about.

A recent story shared publicly by a family following a prenatal diagnosis has stayed with me. Not because their circumstances were unique, but because they weren’t.

It made me think about the families receiving the same diagnoses, hearing the same predictions, and making a very different decision.

And I can’t stop wondering how many of them were never shown another way.

How many were given statistics but never possibilities?

I was given statistics. What I needed was possibility.

How many were told what their child might never do, but never introduced to children who are doing far more than anyone expected?

How many never had the opportunity to hear from families actually living this reality?

I’ve noticed that when a chromosomal abnormality or genetic condition enters the conversation, everything seems to change.

Supports and interventions that are routinely offered to other children can suddenly be viewed as too much, too aggressive, or not worth pursuing.

I’ve never been able to understand that.

These interventions weren’t invented for diagnoses. They were invented for problems.

And many of the challenges associated with genetic conditions are the very same challenges medicine has become remarkably good at treating.

What if families were given a more complete picture?

What if, alongside the statistics, they met the children? The siblings?

What if possibility had a seat at the table?

I don’t believe every family would make the same decision.

But I do believe every family deserves access to honest information, real support, and the experiences of people who have actually walked this road before them.

Because families deserve more than fear. More than statistics. More than predictions.

They deserve the chance to see what life can look like from the people who are actually living it.

Living.