Indescribable Beauty, Immeasurable Worth: The Heart of God Revealed Through a Baby with a Life-Limiting Diagnosis

By Jessica LaHousse

When Jessica and Derek LaHousse received a devastating, life-limiting diagnosis for their unborn baby, they embarked on a journey of choosing life. Instead of following the medical advice to consider terminating the pregnancy, Jessica and Derek saw their daughter’s life as a gift from God; a precious and innocent baby who deserved to be surrounded by love and given a chance. They opted to continue on despite the grim prognosis, and placed their trust in God’s sovereign hands. The remaining months of pregnancy were a whirlwind of appointments to monitor progress and planning for many possible outcomes. In an urgent attempt to save her from stillbirth, Tabitha Miriam LaHousse was delivered nearly two months early, on February 17, 2020. She was alive and already defying all the statistics for her condition. Over the next several months, Tabitha overcame many obstacles in the neonatal intensive care unit and ushered in a beautiful view of God’s heart and character in the process. This is a story, orchestrated by God, of a medically fragile baby girl and the family behind her that refused to give up. It is an account of all the miraculous and remarkable things that happened along the way that point to a good, loving, and merciful God who is faithful and worthy of our trust.

• Language: English
• Publisher: WestBow Press
• Release date: May 9, 2022
• ISBN: 9781664264779

Jessica LaHousse

After earning degrees in music education and performance, Jessica married her high school sweetheart Derek. Together they moved from their childhood homes in Michigan to the fast-paced Washington, D.C. region to build their careers. Despite being told they were unlikely to have children, the couple joyfully welcomed their first child three years later. Jessica embraced her new role as mother, leaving the workforce behind to care for her son at home instead. She is now mom to three children: two energetic little boys, Benjamin and Solomon, and one special little girl, Tabitha. Jessica’s primary responsibilities are homeschooling the boys, managing Tabitha’s medical condition, and caring for the household. Each day is filled with the beautiful challenge of motherhood; from cooking meals and doing laundry, to therapy sessions, doctors’ appointments, and homeschool activities. Life has not been without its trials, but those have all served to build Jessica’s faith and trust in a good and sovereign God.

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Copyright © 2022 Jessica LaHousse.

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ISBN: 978-1-6642-6476-2 (sc)

ISBN: 978-1-6642-6478-6 (hc)

ISBN: 978-1-6642-6477-9 (e)

Library of Congress Control Number: 2022907710

WestBow Press rev. date: 05/02/2022

CONTENTS

A Pile of Rocks

The Path of Least Regret

Called by Name

An Ounce of Preparation

The Dream

Be Mine, Valentine

Birthday Party

Feathers and Rotors

Firsts

We Don’t Have To

Manna

Success

The Whisper

Canceled

Perfectly Imperfect

A Change of Scenery

Bold

Chosen

Momentum

Pottery

Strawberry Love

Get in the Car

The End of the Beginning

Acknowledgments

Bibliography

Support and Resources

Endnotes

"I will give you a new heart and put a new

spirit in you; I will remove from you your heart

of stone and give you a heart of flesh."

EZEKIEL 36:26

A PILE OF ROCKS

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T his is not my story. I am a part of it, as are so many others you will read about in these pages, and even more you won’t. It is the best story I’ve yet seen played out in my life, but the author is of far more importance than any of the characters. This is a story written by and about God. I am simply attempting to be the narrator. God decided who the main and supporting characters would be, what setting would best showcase His nature and character, what dialogue would take place, how certain events would move and change the direction of the plot, and how it would all end. This is a story of God’s heart for His people, and what He can do if we open our hands and give what we are holding onto over to Him.

God used this story, giving me the incredible gift of a front-row seat, to start a process of change in me. Day by day, he revealed facets of Himself; little glimpses of a variety of colorful and textured strings woven together to create a rich, lavish, gorgeous tapestry. The front of the tapestry will not be fully visible during this life on Earth. None of us still living is prepared or completely equipped to view a thing of such magnitude and glory this side of heaven; but I have seen enough to know that it will be more beautiful than words can describe. God moved me from being reliant on myself with my fickle, frail emotions in the driver’s seat to being ever more reliant on Him. He has been faithful to lead me by the hand every step of the way, and I am better for having followed. He traded in my heart of stone and replaced it with a heart of flesh.

In Joshua 3, for the second time in the Bible, God stopped the flow of a mighty river and allowed His people, the Israelites, to cross that body of water on dry land. The first example of this, documented in the book of Exodus, was the parting of the Red Sea as the Hebrew people fled the terror of slavery in ancient Egypt. The Red Sea crossing was a miracle performed by God under the leadership of Moses. Moses built an altar made of stone to serve as an enduring reminder of the miracle God had performed. The story in Joshua details the Ark of the Covenant and the twelve tribes of Israel moving through the Jordan River on dry land. After they had successfully crossed over, their new leader and Moses’s successor, Joshua, instructed the people to place twelve rocks, one for each of the tribes of Israel, in a pile to help them commemorate and remember the faithfulness of God they experienced that day.

In the future, when your children ask you, ‘What do these stones mean?’ tell them that the flow of the Jordan was cut off before the Ark of the Covenant of the LORD. When it crossed the Jordan, the waters of the Jordan were cut off. These stones are to be a memorial to the people of Israel forever. (Joshua 4:6–7)

The concept of a memorial made of stone erected to be a permanent reminder of God’s works has persisted throughout human history. After a period of war with the Philistines and devastating blows to the Israelite army—including the capture of the Ark of the Covenant—the glory of God contained therein became overwhelming, and the Philistines decided to deliver it back to the Israelites several months later. At that time, Samuel was in a position of leadership, and he set up his own stone to commemorate God’s assistance in orchestrating the Ark’s safe return. He gave it the Hebrew name Ebenezer, meaning stone of help. When he had set up the monument, he noted the name and said, ‘thus far, the LORD has helped us’ (1 Samuel 7:12).

This is my memorial made of stone—my Ebenezer. The writings in this book are my effort at collecting all the rocks I have seen around me. They are experiences, memories, thoughts, and lessons learned. They are vignettes of the larger story God has been telling, worthy of commemoration and remembering, piled up on top of each other for all to see. These are the stories of how God revealed Himself through a little girl with a life-limiting diagnosis, and because of His help, ushered in some very important changes in me along the way. When the days are long and times are tough, these rocks are a balm to the soul. They cause me to slam the brakes on the emotional train I’m riding that has veered off onto the wrong track, and to look back at all the incredible scenery I have already passed. They cry out one simple word: remember. Remember what God has done. Remember who He is. Remember His faithfulness, His goodness, His mercy. Remember the intensity of His love for humanity. Remember that if He could do it once, He can do it again. Remember and then go tell somebody else.

I now know with total certainty that lots of things can be taken from me—even my very physical life—but not my identity in Christ, and not the gift of eternity. God used a special baby to show me His character and His heart for His people. He is also teaching how those beloved people, among whom all of us are counted, should behave in response to this kind of love. I hope and pray that God will use this book to draw you to Himself in ways you never thought possible.

And I pray that you…grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. (Ephesians 3:17–19)

May this pile of rocks stand tall; a monument placed here forevermore to help me and my family, those who have witnessed the events contained in these pages, future generations, and humans the world over remember the miraculous works of our worthy God. If you don’t believe that God exists or think that He can’t possibly be good, may this book cause you to reconsider. If you are a medical professional who doesn’t believe that babies with a prenatal diagnosis are worthy of life-saving interventions, may you reflect on these words and have a change of heart. May these stories move you and challenge your ideas about what a life-limiting diagnosis really means and how to move forward after receiving one. More importantly, may they make you experience and know the wide, long, high, and deep love of God like never before.

THE PATH OF

LEAST REGRET

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W hat do you do when you go in for what you think will be a routine twenty-week anatomy ultrasound and your doctor tells you things are amiss? Panic. That’s what you start with. It’s not the right first reaction, but that’s what happens. At least that’s what happened for me. I am a planner and a perfectionist—someone who doesn’t handle surprise changes very well. This was an excellent example of all those parts of my personality combining and turning sour. After a flurry of additional appointments over the next several days—including another ultrasound, a fetal echocardiogram, and a blood test—the results were clear. This baby, the one I prayed for, or more accurately, begged God for, very likely had a rare chromosomal abnormality. It is considered life-limiting and results in disability and suffering at best, or a quick death at worst.

Oh, the burden of pain this situation placed upon my shoulders! I felt like even my bones would be crushed under the weight of it. Hearing those dreaded words confirming all my fears coming from the mouth of my doctor over the phone was a hammer to the heart I didn’t think I could withstand. There, in the middle of the kitchen, I hung up the call and melted into a puddle of broken sorrow in the arms of my husband Derek. This wasn’t in my plans for my family. I wasn’t supposed to have to lay any of my children to rest. They were supposed to have to do that for me many, many years from now! We were supposed to have four healthy children without disabilities, without developmental delays, without affliction of any kind. I wasn’t supposed to be that one mom whose baby had that terrible disease and died. We were being forced to face a reality that was significantly different from the one we had spent many years dreaming of.

The extreme rush to get a clearer understanding of our baby’s condition left me in peculiar circumstances for important conversations over the next several days. The children’s play area of a busy tire store isn’t an ideal place to have discussions about life and death, health and sickness, and what the present looks like from the future’s point of view. It was far too heavy a talk for my surroundings, but my heart and mind needed the maternal fetal medicine (MFM) doctor’s expertise and opinion. Enough time had passed since I had received the noninvasive prenatal testing result that I had gone to Google with my questions, concerns, and curiosities about the diagnosis. Google is not a friendly place for this type of inquiry; talking to a doctor would likely be a much safer and reasonable place to seek out answers. Maybe. I had a previously scheduled appointment to replace the tires on one of our vehicles, but when my phone rang with the doctor’s office number, I had to take the call. I sat at the parent table in the center of the room; indoor playground equipment, giant checkers, and colorful bins overflowing with toys in all directions causing images of happy children to flood my imagination. What my eyes were seeing—my own two healthy, typical children engaged in joy-filled play—and the doom and dread my ears were hearing from the doctor weren’t in harmony. Head in hands, choking back tears, I took in as much information as I could about the potential diagnosis, trisomy 18 (T18), also known as Edwards syndrome.

The intricacies of this diagnosis the doctor laid out for me were gut-wrenching. If this baby even survived long enough to be born, which was exceedingly unlikely, there could be an insurmountable number of physical and mental deformities—ranging from missing or malformed organs and intestines, to airway, lung, and esophageal disruptions, to severe developmental and cognitive delays. Many of these issues alone or in concert