On Being Resilient

Yesterday Jeff started running a fever. His spasms were out of control, and he was having random episodes of autonomic dysreflexia.

All sure signs of a UTI.

We called his nurse and told her the symptoms and what we thought it was. She agreed, and we had antibiotics within 2 hours.

Still, Jeff and I are always trying to think a couple steps ahead of his symptoms, and we try to be as proactive as we can. So when he looked at me and said, "You might want to pack," I knew exactly what he meant.

If Jeff's symptoms don't start showing improvement in 24 hours, we'll have to head to the hospital. And any hospital trip requires preparation. I have to take a ton of supplies. I know that sounds weird - taking medical supplies to a hospital. But believe me, it just works out better when I can whip out one of our home supplies rather than asking a nurse or CNA to track something down. I also have to pack for myself because I try not to leave Jeff's side anytime he's at the hospital. So that means clothes, personal necessities, cash on hand, etc.

There's also the ventilator battery, Jeff's medications, the list of Jeff's medications, the printout of the ventilator settings, a copy of our power of attorney, a printout explaining AD ...

The list of what we need to take is long.

So I spent a couple hours yesterday, off and on, gathering up necessities for a "just in case" scenario.

And when Evie got home from school, I told her that Daddy wasn't feeling good and we might have to go to the hospital. She immediately went into his room and I heard her ask quietly, "Hi Daddy. How are you feeling?" Then she went into her bedroom and started packing a few items of her own, in case she has to stay with Nana and Papa for a few days.

We've all been through this before.

* * * * *

Jeff was starting to feel a bit better by the evening, but we were still on high alert. Things can change so quickly with his health when his body is off. And when his health is hanging in the balance, the atmosphere in our home changes. Things become very serious. Even though we try to keep it light, there's a heaviness that we all feel.

So just before Evie got into the bath, I wasn't too surprised when she turned to me with tears in her eyes. I pulled her close and let her tears fall. "I don't want Daddy to have to go to the hospital," she sobbed. "I'm scared."

In the past, she'd always had more anxiety about being away from us, but now that she's older, this was the first time she expressed concern for Jeff first and foremost.

She got into the bath with red eyes, and began washing away her sadness. By the time she was finished, she emerged with a smile.

I was sitting on my bed, which is next to Jeff's bed, and I thought Evie was going to come over and sit and cuddle with me. Instead, she walked over to Jeff's side and said to him in a gentle voice, "Daddy, can I take your blood pressure?"

"Sure," Jeff said back to her.

So she pushed the button and watched the numbers on the machine count up. When it hissed, she read out the numbers, "110 ... over ... 75." She looked at me for confirmation that she'd read it out correctly. I nodded and smiled at her.

"Is that good?" she asked.

"Yep, that's perfect for me," said Jeff reassuringly.

* * * * *
Later that evening, just before bed, she took his blood pressure again. And this time she held his hand while she did it. Earlier in the day I was doing the same thing. I knew Jeff had no idea she was doing it. He can't feel it, and he couldn't see it because it was out of his vision line. Jeff's fingers no longer bend - they are stiff from years of lying flat. But his skin is soft and warm to the touch.

Evie's fingers looked so little wrapped around his thick hand.

I walked to the other side of Jeff's bed, and the three of us smiled quietly at one another - our smiles were a mix of concern and love. Evie leaned over and gave Jeff a hug. She put one arm on his stomach, and put her other hand on his shoulder. I leaned in for a hug as well. With my arm on Evie's arm, I buried my face in Jeff's neck.

And we held tight to one another for a nice, long family hug.

"This is my favorite," Jeff said softly. "My girls."

* * * * *

This morning, Jeff's fever is gone, and it looks like the medication is working. So we're keeping our fingers crossed that we can avoid a hospital visit.

After Evie went to school, I told Jeff how she had cried last night before getting in the bath. But that she didn't want him to see. And how I observed a resiliency in her when she came out of the bathroom and went right into nurse mode.

He looked at me and said, "She learned it from you."

I smiled and took in the compliment. And I guess he's right. I realized that that resiliency - that falling apart followed by calmness when it comes to dealing with difficult, scary issues - is one of the things I'd like to pass along to Evie.

Granted, she can scrape a knee and convince us all that the world is coming to an end. But when it comes to caring for her dad, she's calculated ... measured ... confident.

What a treasure this girl is to us.