“I didn’t go through eight years of schooling to become a stay-at-home-mom!”
Those are the words I snapped at my husband one evening in our very first house. We were having a house-warming party with some of our friends, including many of my classmates from physical therapy school. Casually, he had said something to the effect of, “I could see Hillary wanting to come home and be with our future kids at some point.”
The audacity. I mean…goodness.
How dare this man assume I might want to spend more time with our future kids than a traditional clinic schedule might allow?
Ironically enough, several years later, I did, in fact, tell him that I wanted to quit my job and become a stay-at-home-mom.
There was a time in my life when I said I wanted to be home full-time, but after spending nearly a decade out of high school earning a doctorate degree in physical therapy, the absolute last thing I thought I wanted to do was quit. Student loans alone were enough of a deterrent, at least for a while.
I loved my job. I loved my patients. I worked in outpatient pediatrics, and I developed close relationships with most of my patients and their families. When COVID-19 hit and the entire world flipped upside down, the ways of clinical practice flipped upside down, too. It took about a year for me to reach a point of full burnout.
As the world was trying to return to normal and gradually lower social distancing precautions, my husband took on a new position at a new company, and we had a decision to make. We had to either send our son back to daycare (and I had to take on more clinical hours to make it worth it) or I needed to come home. It took one visit to a daycare and the sickening feeling of a pit in my stomach for me to realize that sending him back was absolutely not going to be an option for us.
So, I came home. The woman who fussed at her husband for the mere suggestion that she might like staying at home, quit her job and came home.
I had a lot of peace around that decision. I knew it was the path I was supposed to take. But that transition wasn’t easy. I had spent years achieving. I knew how to do that. I knew this was the place God wanted me to be, but I didn’t fully understand why. Several months later, I finally got an answer when we found out I was pregnant with baby number two.
We were overjoyed to be welcoming another child. It didn’t take long for me to start daydreaming about our son playing with a sibling and all the newborn baby snuggles. Everything seemed to be unfolding beautifully in this new season. And then came the anatomy scan.
Halfway through my pregnancy, I was blindsided when my doctor told me that the anatomy scan absolutely was not the healthy, normal scan I was expecting it to be. Our baby, whom we had named Marsaili (MAR-suh-lee), had multiple concerning medical complications in several body systems, and we had no idea why.
I was alone for that appointment because of continued COVID precautions. I went down to have more scans done with a perinatologist that day, and she asked me words I never imagined I would hear:
“Is termination on the table?”
Holding back tears, I firmly answered, “Absolutely not.”
No matter what, this was our baby. Created by a faithful and loving God. He was knitting her together in my womb, and we were going to give her every opportunity to experience the love she deserved.
The remainder of my pregnancy was a whirlwind of specialist appointments as we tried our best to prepare for what needs Marsaili might have once she was born. Time and time again, it felt as though we were receiving bad news. We pursued genetic testing, but nothing was conclusive. And as much as I felt the Lord’s presence during that time, as much as I believed He was good and faithful, I struggled with the feeling that He was silent. In the time where I needed answers desperately, when I kept wondering why, the silence left me discouraged and deeply frustrated.
Marsaili was born in 2022, and we had the blessing of loving her on this side of heaven for nearly two years. Those two years weren’t easy, to say the least. We were in and out of the hospital constantly, sometimes weeks at a time. We took more ambulance rides in the middle of the night than I care to remember, and I’m not sure I got more than a handful of nights of full, restful sleep that entire time. That is all true, and it is also true that Marsaili blessed us more than I could ever have possibly imagined.
Marsaili was and is the strongest person I have ever known, and she didn’t even spend two full years on this earth. Every single milestone she achieved was celebrated, because we knew they weren’t promised. Every breath, every moment with her felt like a miracle, because it was.
Not long before Marsaili passed, we finally got the genetic results we had been waiting on for two years. Geneticists confirmed that she had an ultra-rare recessively linked genetic disorder characterized by a loss of function in a protein-coding gene called PPFIPB1. There is only one existing study on this condition, and it only included sixteen patients. As far as we know, Marsaili is one of less than twenty identified patients in the entire world with this disorder. And my husband and I? We are somehow both carriers of this condition. The odds of that are astronomically small. Impossibly small, if you look at it just from the lens of statistics.
Getting those results confirmed what we had known all along: Marsaili was created by God. She wasn’t the result of some random repeated stacking of statistics. She was a miracle, created by God with intention and purpose. And by His grace, we had been chosen to be her parents.
There’s peace that comes with that. Finally having answers. But those answers told us something no parent ever wants to hear. There was a 25% chance with every single pregnancy that a child we conceive would have Marsaili’s same terminal genetic disorder. Having once imagined creating a large family together, my husband and I mourned that news, wondering if we would ever have any more children.
A couple of weeks later, I found out I was already pregnant with our third child. Not long after that joyous news, we headed back to the hospital with Marsaili for the last time.
As I cradled Marsaili in my arms in the hospital bed, knowing that her time with us was ending, I was also bleeding, and had been placed on pelvic rest, labeled “threat of miscarriage” by the doctors in the emergency room. I prayed to God more fervently than I had in a long time. For a while, I struggled with prayer. I still do, if I’m being honest. But in that moment, my guard was down, and I sobbed as I clutched one baby in one hand and the one in my belly in another, praying, “God, please, please, don’t take them both.”
Marsaili died just a few days later. We celebrated her life with family and friends. We remembered her courageous spirit, and her contagious smile. But mostly we remembered how much she radiated the joy of Jesus.
Later that year, I gave birth to her baby sister. She was perfectly healthy, and she was born on All Saints’ Day. I don’t think I will ever stop marveling at that mercy. Marsaili’s sister did not replace her. Nobody could ever replace her. But her sister is a tender reminder that grief and joy can coexist. Even in mourning, there is hope in Jesus Christ.
Since the birth of our youngest, I’ve spent every day home with her and her brother, learning how to live and how to love in this after period of grief. It has been a joy to experience the ways in which the Lord has held us in this season. As I’ve spent time in prayer and reflection, I’ve seen why God asked me to come home. I once felt inferior for laying down my career and a version of myself I had worked so hard to become. But now, I couldn’t imagine being anywhere else. God brought me home in kindness, in grace, and in mercy long before I knew just how desperately I would need to be there. He was preparing me all along for exactly the path He created for me. He brought me home to give me time.
I still don’t have every answer. Grief is still there—a constant companion. But so is joy, and so is God’s presence. He was not absent in the silence, even in my own silence. He was there in every hospital room, every ambulance ride, every sleepless night, every milestone, every smile, and every sacred moment we were given with our girl. And He is still with us in the after.
Marsaili’s life was never defined by her abilities, her diagnosis, or the number of days she had on this earth. She was defined by the One who created her, sustained her, and ultimately welcomed her home. We know goodbye is not forever. We know that because of Jesus, we will see her again. And praise be to God for that.
What did people do to minister to you during and after your trial?
One of the simplest ways that people ministered to us was just being willing to be present with us. A lot of people had no idea what to say, but they showed up anyway. We had friends that cooked dinner, sent dinner, or sent DoorDash gift cards. We had friends that sent me coffee gift cards while I was in the hospital, and that was so appreciated.
After Marsaili passed, there were so many people that stepped up. Rather than asking me what I needed help with, they just said, “I’m taking care of ______. If you don’t want me to help with that, just let me know, but I’m going to take care of this for you.” And that took a lot of the mental load off of me in those times. So, people being willing to step up and people being willing to sit in our grief with us were extremely impactful ways they ministered to us in that time.
What should people not say or do to others in similar circumstances?
I think this really depends a lot on the person. It also depends on what stage of the grieving process they’re in and how well you know the person. But some general things that I just would not say to people are things like, “They’re in a better place.” Even as a Christian, I know that Marsaili is in a better place. She’s with Jesus, and that is good, good news! But my goodness, I would have given anything, especially in those early moments, for her to be with me a moment longer.
I also had somebody who had the audacity to call our youngest daughter a “replacement baby” when we announced we were pregnant. We had waited to announce for months after Marsaili died that we were expecting another child and someone literally asked if she was a “replacement baby.” Just…don’t do that. Nobody can replace a child.
Also, any “you should…” statements ought to be handled with a lot of care. Grief is overwhelming. It can often feel like we are drowning and totally isolated even when we know God has not forsaken us. “You should” statements can feel like a reminder that we are failing or not grieving “correctly” even if it is sound advice and delivered with good intentions.
What hymns, songs and books brought you comfort?
For Marsaili’s celebration of life service, we picked songs that were dear to our hearts. They still bring us comfort now. They were: It is Well with My Soul, Because He Lives, How Great Thou Art, and Battle Belongs by Phil Whickham. Music is a love language in this house. Josh and I both sing, and our son does, too. In recent months, Josh and I have both returned to leading worship at our home church, and that has been such a blessing. Some of our favorites are Gratitude by Brandon Lake, I Know a Name by Brandon Lake & CeCeWinans, and What a God by SEU Worship.
What hope has Jesus given you?
Honestly, this is one of the hardest questions to answer, even though it should be the easiest, because it’s so hard to put words to the kind of peace we have in the middle of the greatest loss a parent could ever face.
The truth is, we would have no hope at all without Jesus. Without Him, death is just an ending. Final. There’s nothing beyond it. But because of Jesus, death doesn’t get the final word.
We have real hope that we’ll see Marsaili again, and that is deeply comforting. But I’m not just sitting here waiting to die until that happens. I’ve got to keep living. And that’s what Jesus’s hope gives me: the ability to keep living well until that reunion. Living in a way that tells others about Him, about the joy He gives, about Marsaili, and about what it looks like to minister to people who are suffering. We’re only able to do any of that because of who Jesus is, the death He died, and the victory He has over the grave.
How do you hope your daughter is remembered?
I want Marsaili to be remembered for her joy. In spite of all the challenges she experienced, my most powerful memories of her are the ones of her smiling and cooing at us. She had so much joy in the face of so much adversity.
How has the ministry of Hope in the Mourning encouraged you?
It’s been encouraging to be reminded that our story matters. Sometimes it can be challenging to keep telling our story and to be vulnerable when we feel like we are shouting into a void. Hope in the Mourning reminds us that our story, Marsaili’s story…they matter. God will not leave what He started unfinished, and He only asks us to be faithful and obedient to His call.