Shared by Jen Gibson - SFTT Founder & Content Author
Over Christmas break, we took our daughters to see the movie Wonder. I was warned that this movie may be a bit hard for me, so I needed to be sure to bring Kleenex. I had also heard it was a wonderful movie about kindness, and a must-see for my kindness-preaching heart. Wonder was all the things I was encouraged and warned about. I cried, I laughed, and my heart went to an unexpected place. Because what really rocked my husband and I was the thought—that boy, that life, it could have been us. It could have been Eli.
At my 30-week ultrasound, when my world began to turn upside down, the original diagnosis was hydrocephalus with some kind of facial deformity (probably just a cleft lip & palate, but they could not get a clear picture). I researched the heck out of hydrocephalus. Based on this diagnosis, we changed hospitals, fetal specialists, and found a new pediatric neurosurgeon. I was also finding the best-case scenario was a baby with a large head that would need immediate surgery with a shunt put in his head to begin draining the fluid. His face would also need several reconstructive surgeries. Also with this diagnosis, the probability was high that he would have special needs. My heart broke just over the thought that this tiny baby boy growing inside of me would need multiple surgeries when he came into this world.
Multiple surgeries would be just the beginning of our new struggling life. There were a million unknowns. Where would he get this medical care when we lived nowhere near a hospital that could provide it? How would I care for two energetic girls with a special needs son? How would I juggle school for the girls and surgeries for Eli? Should we move? Move where? Can we afford to move? Can we afford the much-needed medical attention for Eli? The questions with no answers felt endless and overwhelming.
Obviously, if you have read my previous stories about Eli, all of these worries became fruitless. That was not his true diagnosis. Instead, he had Holoprosencephaly, and he landed on the wrong end of that spectrum, too. The above did not become our life. Instead, we spent five months striving to keep our baby boy alive with a diagnosis that was a death sentence from conception.
But for 6 weeks, I thought it was going to be my life, and that little boy in Wonder could have been my son. We could have gotten lucky and the shunt worked, the facial surgeries were a success, and his brain was not affected by the fluid. It could have happened. As I watched Julia Roberts kiss her son goodbye on his first day of school, and watched her struggle through the emotions of letting him go for the first time, I thought, “As hard as that moment of letting him into the real world would have been, I would give anything to have had that moment with Eli.”