All the cards were stacked against us as we sat around a board room table filled with our family members and a team of physicians in the NICU. The head doctor a geneticist started to calmly report the findings of the lab, MRI, and other hundreds of test performed. She is soft-spoken and starts talking in circles with medical jargon way above our heads. It starts to feel like I am in a tunnel. Her voice starts to turn into a low far away murmur as she tells us our new grandson has a very rare genetic disease and that she was certain he would not be going home. In fact, she said she was 100% sure of it. I can remember the shout in my head that screamed NO! This is absolutely not true. The rest of the meeting was back and forth confusion from the different family members questions. As the news sunk in and they kept waiting on us to respond or maybe crumble to the floor, I am not sure, but there was an odd silence in the room and expectation from the doctors that we were not giving them.
Lucas mom slams her hands on the table quiet forcefully shocking them all and said: “we are not going to just let him die”! Are we through here I want to go hold my baby. As I left the room and went into the private bedroom on the NICU floor they had provided for the kids, I sat with them both and told them, “I don’t know all the medical stuff they are saying in there but I do know this–I know God’s word, I know how to pray and more importantly, I know how to believe.” At that point we all decided that was our only viable option was to believe. They had not offered us one glimmer of any hope in that boardroom. They expected him to die. We expected him to live. We were at a crossroad with the entire medical staff of experts in one of the top children’s hospitals in the country.
You may find yourself in a similar situation. I am not going to tell you it is easy to just believe and go on about your day. Everything in the NICU screams the opposite and contradicts your faith and prayers.
This time we were right and the doctors were wrong. Imagine that! Don’t get me wrong, I am not an anti-doctor basher. Truthfully some of the closest people in my life are doctors. And many times they are right, but there is that feeling when you know that this time they will be wrong. That is what I had in the boardroom. I knew it was not our story. Not today, not ever.
Lucas woke up the very next day. He continued each day to surprise them by doing the opposite of what they expected. They even started retesting him because they thought they might be wrong.
We turned his cubicle in the NICU into Bible reading, praying, and speaking life over him constantly. We allowed no doctors or nurses to talk about anything but life in his presence. And we never left him alone. We had someone from our family with him 24/7.
Lucas turns one this week. It has been the hardest and best year ever. The process of learning what he needs has taken over our lives. Therapies and calendars dictate everything we do. But you know what? He is home and he gets better and stronger each day. We would not have it any other way. We know his future is bright.
When you are delivered the atypical “doom and gloom” reports from the medical staff just know that for every baby that doesn’t make it there are more that do. Research miracle babies from the NICU. Be inspired by the stories of the babies that beat all the odds. The resilence of a newborn and their will to live is so strong. They will amaze you every single day. You can choose to research every horror story or focus on every miracle story. The choices are always ours, but I do believe the parents, and grandparents emotions play a huge role in the healing of your baby. Surround them with love, positive words, and try to be with them as much as possible.
Lucas came home and your baby can too. Believe!