Looking back at home videos, I can see something was wrong then, but as a new mom all I saw was a perfect child with beautiful eyes.
Parenting books give details about sleep patterns, temperatures, shot schedules, and growth charts. Parenting books don’t tell you how to handle blue babies.
Snatching her from her swing, I ran to the window so I could see her in the light. Blue. She was blue.
I closed my eyes tightly and then quickly opened them again. Still blue.
I fled to the hospital. Gripping the steering wheel, I forced myself to look at the street, and filled my head with things other than a blue baby.
Red light. Stop.
As days passed, my thinking remained choppy. I broke down every task into steps because thinking of everything at once was too much. Phrases and simple sentences cluttered my head.
IV. They missed. Needs oxygen. More oxygen. Run tests. Not enough oxygen. Run more tests. We will up her oxygen. Food. She isn’t eating. Another test. We can’t discharge you.
Days. Ticked. On.
Answers were hidden. Doctors seemed too busy. The hospital room remained dark even during the day. I didn’t want it light anyway. Why bother? My world was now dark, but would it be forever?
I refused to speak to God. He was getting the silent treatment in a major way. If things didn’t change, He could get it forever.
I envisioned myself plugging my ears and yelling, “La, la, la, I can’t hear you!” when someone spoke even a hint of God talk.
I couldn’t do God.
However, He came to me through the love of those who knew my family, and He came to me through the love of those who didn’t know us at all. God never promised me a healthy baby. He only promised to remain present. Eventually, that was enough for me to open the curtains. Slowly, as light crept in through the hospital windows, answers did too.
Neuroendrocrine Cell Hyperplasia. My daughter would need oxygen 24 hours a day indefinitely. Best case scenario would be full time oxygen for five years. Worse case scenario would be chronic lung problems for life.
I was consumed by fear. God sat with me through sleepless nights, lonely days, and endless doctor appointments. I pushed Him away. He understood. He also rejoiced alongside of me when a certain almost four-year-old surprised everyone, and started her life oxygen free.