Tag: #NeonatalMarfan

Finding the Sacredness in Tragedy – Part 7: The Story of Bella Joy (Continued)

Image Credit: “Womb Paradise” by Alex Florschutz from sistersawake dot org

In Part 6, we learned a little about Miss Bella and her infant son who was born with a rare disease. This tragic circumstance was so unepected. No one saw it coming. We continue this story.

It’s Not Fair

After the initial shock wore off, Miss Bella may have thought:

It’s not fair to the baby.
It’s not fair to (us) the parents.
It’s not fair to (our other child) the sibling.
Life expectancy is short with this rare disease.

Why God? Why me? 

Miss Bella felt so alone after her baby’s birth. (YouTube Video*)

After all, how would we feel if we were told our baby has a rare disease? Six months later, she put on a courageous face and filmed a YouTube video. Why? Because she didn’t want others to feel alone like her.

The Story of Bella Joy shows how an apparently uneventful pregnancy can yield a calamitous life-changing outcome. Miss Bella navigated through an unexpected situation as best she could. Then, this strong momma shared her experience with the world to give others hope and encouragement. Instead of dwelling on the negative, she found the strength to overcome her circumstances.

And, more importantly, to serve others.

Why is service so important?

Serving others reflects God’s love and fulfills the Biblical commandment that we love one another. If we focus on love and serving others, even in the midst of evil or heartbreak, that is where we find the sacred. It does not nullify – or remove – evil, tragedy, and human suffering. Rather it is precisely here, in the midst of catastrophe, that the sacred becomes manifest. This is where God is present – whether we see and sense him, or not. And this is why, even in the most terrible circumstances, people are able to find hope, offer love, and serve one another.

The next post will explore the cycle of life in the context of there being a time for everything. We will then wrap this series up on finding the sacredness in tragedy.

*YouTube dot come/watch?v=3Jc2w2eAhMc&t=21s

#Birth #NeonatalMarfan #Sacredness #WhereWasGod #Tragedy #LifeQuestions

Finding the Sacredness in Tragedy – Part 6: The Story of Bella Joy

Image Source: Creative Commons (Artist Unknown)

Parts 1-5 focused on God’s love, compassion, and mercy, even amid tragedy. 

Today, we will again ponder the many questions in life, starting with birth.

For you created my inmost being; you knit me together in my mother’s womb.

Psalm 139:13

The Story of Bella Joy

Bella Joy had an uneventful pregnancy. There was nothing out of the ordinary at any point in time during her pregnancy. All the precautionary prenatal care guidelines were followed.  She even passed all the recommended tests with flying colors, including genetic testing. Still, she and her family prayed for a healthy baby.

The Eventful Delivery

Miss Bella had a delivery that went sideways. The soon-to-be mom, for the second time, had scheduled a C-section on August 3. Yet, the baby had different plans. Unexpectedly, this young woman went into spontaneous labor on August 2.

Her medical team was on board and ready to prep her for the C-section when she arrived at the hospital. Not long after, Miss Bella gave birth to a baby boy. She was on edge until she heard the sweet sound of her newborn cry. Within seconds, he did. The wail seemed to signal a healthy baby. She breathed a sigh of relief.

She remembers her doctor saying calmly, “Your baby is having difficulty breathing.” But because Miss Bella had heard the infant cry, she didn’t overthink what the doctor had said. The doctor did not sound alarmed. Nothing seemed out of the ordinary. In fact, she remembered joking with the medical staff about there being a full moon that night. 

In the meantime, five nurses and doctors were working on her baby. She didn’t realize the commotion had been about her baby. She hadn’t a clue. However, when the OR staff person wheeled her to the nursery, she sensed something was off. When she saw her husband, she knew something was dreadfully wrong. 

At that moment, she learned that an infant can cry and still not be okay. “What could it be?” She asked herself. Her ultrasounds had been normal; and her pregnancy had been uneventful. She was not prepared for what was next.

Miss Bella’s son was born with Neonatal Marfan Syndrome, a rare genetic disease. She wanted answers.

“Where was God?” “Why did this have to happen?”

In the next post, we will keep searching for answers.

#Birth #Neonatal Marfan #Sacredness #WhereWasGod #Tragedy #LifeQuestions