When Your Child Is Living in the 'Undiagnosed World'

The night after my youngest was born, I went to visit him in the NICU as I had been doing since the second they took him from my arms. I said goodnight and walked sadly back to my room reflecting on how this was not how it was “supposed to be” and wishing so deeply he could be with me.

Within minutes of returning to my room, there was an announcement made over the entire hospital that a “Code Brown” had been issued, meaning there was severe weather in the area. Within seconds our worst fear was confirmed as the tornado sirens started blowing outside; a tornado had been spotted.

The nurses flung each door open and demanded everyone get in the hallway. Like a quick sweep of the floor, we were all whisked out of our rooms within minutes into the hallway. The doors were rapidly shut behind us, including the main door leading to the NICU, which in my head left an echoing locking sound.

Slowly, one by one I watched as the nurses ran the babies in their bassinets from the regular nursery and place them next to their mothers. Women who had just had C-sections were wheeled out in their beds as their babies were returned to them. Tired moms, stunned fathers and babies unaware of what was happening in the brand new world around them filled the hallway.

I looked at my husband, wanting to burst into tears at the thought of the floor-to-ceiling glass-filled NICU where I had left my Joseph minutes before. I could hear the thunder cracking outside, not even coming up for air. Out of pure curiosity, we opened the door of my room and peaked to look. The petrifying shade of black green as the lightning flashed, almost in a strobe light fashion, illuminating the trees shaking like pom-poms. A nurse yelled at us for peeking though the crack of the door and grabbed the handle from my hand and slammed the door.

As if I was a little kid, I looked at my husband and started to laugh uncontrollably, completely unable to speak, when the tears of laughter came streaming down my face. It was evident that in my motherly instinct, fight-or-flight moment choosing laughing over tears was the only comforting emotion I knew. Another couple we met in the NICU saw us laughing and walked down to see us, with the same empty look on their faces that we were feeling inside. They too joined in the uncontrollable, vulnerable laughter that comes from emotional and physical exhaustion. For that brief moment in time, we bonded in laughter and offered comfort by the fact we were the only ones standing there without our babies. Everything in my mother’s gut said I needed to run and protect Joseph, yet every rule in the hospital book said we had to stay. The balance of that demon still haunts me to this day.

This week, science has brought us closer to explaining the inexplicable in our diagnostic odyssey, and I was randomly reminded of this story. I realized how this story of the beginning of our life with Joseph represents what it is like living in the undiagnosed world. So close, like I was to Joseph that night, yet still just too far away to actually help. An undiagnosed condition is like a force of nature that appears with unpredictability and determination, operating on its own set of rules. Just like the four of us there that night, there is a small support network offering some of the only glimpses of understanding we will ever get, all while being governed by the limitations of a hospital and science as we know it. The balance of these demons haunt us daily. That is what it means to be undiagnosed.

Just like all storms, the tornado passed and I was able to hug my little peanut tangled in his many wires of the NICU, but in that moment I didn’t care about any of that as I had moments before. It wasn’t that he was in the NICU that mattered anymore, it was that he was safe within the NICU and I was with him that mattered most.

One day, I believe with all of my heart that this storm will pass and once again I will hug this little hero of a guy. I wish more than anything that when it happens, I will be reminded not of how long the journey took, but that we finally reached our destination thanks to the dedicated doctors, the support of people like you, and the determination of a mother’s instinct that should never be ignored.