On Christmas Eve 2019, my husband Jason and I discuss the importance of being extra careful. We were tired, our son Easton was two, our daughter London ten months, and life felt exhausting. The very next day, we found out I was pregnant. The timing was ironic. We laughed at how pointless the previous night’s discussion had been and thanked God for making the decision for us.
In April 2020, I went for my 20-week anatomy scan, an appointment I usually loved. The sonographer walks through every part of the baby, and I typically leave with a perfect photo for the fridge. But that day felt different. Amid the usual reassurances, I heard whispers and the word “defect.” Tears began to form.
Our baby had a heart condition called Complete Atrioventricular Canal defect, or CAVC. We were told open-heart surgery would be required, usually between four and six months of age. Soon, we learned there might be another issue called a coarctation of the aorta, which would require surgery shortly after birth. The news was overwhelming, and tears flowed freely.
Jason and I tried to stay grounded in truth and scripture, reminding ourselves that nothing in the Bible guarantees a child’s earthly life. What we could rely on was God’s unchanging character. We prayed for peace, knowing we would be held by Him no matter what happened.
We had planned to wait until birth to find out the gender, but we started calling the baby by name. At our next ultrasound, we discovered we were having a girl, Josie Kelly Law. Josie means “God will add,” and it felt perfect. She was a blessing added to our lives in a way we hadn’t expected.
The doctor ran additional bloodwork to check for chromosomal abnormalities, mostly to rule out anything unexpected. The night before the results, I reflected on Psalm 139:13 and realized that I believe God forms every baby, not just the ones we consider genetically perfect. With that thought, I finally slept.
The next morning, we learned Josie had Trisomy 21, also known as Down syndrome. Many would see this as another challenge, sometimes even encouraging abortion to avoid raising a child with special needs. We were blessed with a supportive community and knew this was our third time entrusted with an imperfect child. Josie had intrinsic worth and value, unchanged by any diagnosis.
Knowing her diagnosis allowed us to prepare practically and emotionally. We connected with other parents, learned what to expect, and began advocating for her needs. When Josie arrived in July 2020, she was closely monitored. Thankfully, she only needed surgery for her CAVC, not the additional procedure we had feared.
Her heart worked hard but inefficiently. She burned calories quickly, was constantly sweaty, and often preferred to sleep. By fall 2020, she went into heart failure and was admitted for an NG tube because she couldn’t gain enough weight from feeding. On December 15, 2020, at four and a half months old, Josie underwent open-heart surgery.
Throughout this journey, we asked ourselves tough questions: Could we still see God’s goodness no matter outcome? Could His character be shaken by circumstances? We concluded that He is good simply because He is. Every moment with Him matters, and nothing is wasted.
Josie was discharged on December 23, her heart mended. We were speechless with thankfulness for the people who supported us, through prayers, help, love, and practical help. Jason whispered to her, “I will always supporter for you,” and her siblings cheered her on, celebrated her courage, and simply loved her. My mom did the researched and prepared everything so I could focus on being Josie’s mom.
My journey as Joise’s mom has been both humbling and beautiful. She is a gift, made perfectly as she is. Every challenge, every appointment, every joyful milestone has reminded us that life with her is a blessing. Josie teaches us daily about courage, love, and the power of family. She is God’s creation and that is enough.
