Six days after that wild ambulance ride, Caleb walked out of the hospital on his own two shaky feet, giant Tigger balloon in hand. The doctor’s marching orders were scary: anti-seizure medicine to be carried at all times, Tylenol at the first sign of fever, and a bed in our room until he turns six, because this could happen again at any time, and we could find him dead in the morning. “There is a 30% risk of recurrence,” he stoically reported, emphasizing the danger and potentially disastrous results.
The reality was too much. The room started spinning, and I needed to sit down. Someone went to get me some juice. With my blood sugar balanced, I thought through what the doctor was saying as he prattled on with his doom and gloom. I guess he wanted to make sure we were prepared.
“Wait a minute,” I interrupted. I was being rude, but I didn’t care. “Did you say there’s a 30% chance this could happen again?”
“Yes, that’s right,” he replied, looking at me like I was going mad. It was probably true.
“So that means there’s a 70% chance this will never happen again?”
He paused for a moment, looking something between annoyed and perplexed. “Yes, I suppose so,” he answered.
“Then we’re going to live in the 70%,” I declared, not caring that he didn’t really seem to be listening. He finished his instructions, asked if we had anymore questions, and left.
I looked at my husband, and our panicked eyes met. I wasn’t ready for this, and neither was he. We took a deep breathe and steadied ourselves against the unknown.
Determining to live in the 70% is one thing, but doing it is another. Caleb spent the first two nights at home in our room, in a toddler bed friends loaned us. On the third night, he climbed into his own bed in the room he shared with his sister. Grandma had vacated it to hop a plane back home. What could I do? I wasn’t going to force him to sleep in our room when he wanted to be with his sister. Mommies live for that stuff.
So we tucked him in, closed the door, and fervently prayed that God would protect him.
And we prayed that we would fall asleep. And you know what? We did.
It wasn’t easy. The process of letting go began in a hospital room next to our dying son’s bed. I let him go, and God gave him back. When I loosened my grip, I realized I was never really the one holding him anyway. God was holding him, and it was enough.
We learned that you can do everything right for your kids: hold them, feed them, train them, love them, and they can still almost die in your arms. We are not in control, and we refuse to live in constant fear of “what if?” We don’t need to wonder “what if?” We’ve already been there.
It took six months to get the boys healthy; six months of nebulizing, nursing, antibiotics, steroids, more nebulizing, and more nursing. I was in survival mode, and Katie watched a horrifying amount of TV, even if it was PBS. I was barely keeping my head above water, drowning in a sea of medicine, doctor appointments, dishes, laundry, and beautiful kids. I had so much to be thankful for as spring turned to summer and we celebrated Caleb’s third birthday, but I could barely function.
Depression enveloped me like a thick, dark cloud. But that is another story.