...and Joy to You and Me.

It always starts with this line:  "Daddy, my throat hurts."

Tamara and I examined our calendars to see who could least afford to stay home with a sick child. On this occasion, her calendar was far worse than mine and so she left for work.  After I got Savannah on the bus and made a doctor's appointment, Ruby emerged from under her blankets, bleary and disheveled.  The eternal optimist, even when feeling crappy, she wanted to know the agenda, "So, what are we going to do today?"

"Go to the doctor and rest."

"Oh, man.  I don't want to go to the doctor."

"If you're sick enough to miss school, you're going to the doctor.  You want to be well by Christmas, don't you?"

"Ugh.  Alright.  But she's probably going to stick that thing in my throat."

"Um, yeah, that's why we're going."

"Can I wear my jammies all day?"

"Of, course; that's one of the few good things about being sick."

After the doctor examined Ruby and swabbed her throat for strep, she asked, "Ruby, did you get your flu shot this year?"

"I got the mist."

The doctor turned to me, "Did you get yours?"


"And Savannah?"

"No.  Not yet," I said sheepishly.

"I know how hard it is for you to get her in for things like that," she spoke rapidly with stern, professional diction.  "Where do you live?"

"Five minutes from here, " Ruby piped up.

"And you still have a nurse?"

"Yes, an RN."

"Good, then I'll send some vaccine with you.  The nurse can give it at home.  Savannah can't go without the flu vaccine."

"Thank you," I said.

It is so hard to find a good doctor, one who understands, who will go the extra distance to meet you where you are.  And when you find one, you have to hold on.

LP: The Story of Star Wars
That afternoon Ruby fell asleep on the sofa, so I knew she was sick.  Unlike me, she never naps.  When she got up, we made some herbal tea with honey and listened to "The Story of Star Wars" on vinyl.  She flipped through the booklet inside the cover.

"This is so cool.  Can this be my record now?" she asked.


When it finished, we put on Three Dog Night.  "I bet you know this song," I said.

We both sang: "Jeremiah was a bull frog / was a good friend of mine..."

She leaned back on the sofa with her knees up under her blanket.  She had a tired, but contented smile. "... joy to the fishes in the deep blue sea, and joy to you and me!"

How different this is, I thought, from taking care of Savannah when she's sick?  This child, the "normal" one, can tell me how she feels.  She can change her clothes, adjust her own blanket, fill her water cup, and nap when she needs to.  What is so hard about this?  There's no suction, no mucus spewing on herself- her equipment- the floor, no adult diapers, no fourteen-year-old crying at the top of her lungs for hours in fever and frustration because she can't tell me where it hurts or how to help her.

I can make this child Jell-o and we can cuddle on the sofa and watch Christmas specials.  She can rest her head against me.

"Daddy," she said, "I love you.  You take good care of me.  One day, I'll take care of you."

"Can I get that in writing?"

"No."  She looked up at her sister in her wheelchair, watching the TV, too.  "And I won't change your diaper."

"Hey, I changed yours," I said, full of fake indignation.

"But that was different.  I couldn't do that myself.  Changing your diapers is not in the contract."  She scrunched up her nose and said, "Ew."

"Hmm.  Not in the contract?"

She giggled.

Nothing and everything is in the contract, isn't it?  The good times, the bad times... I've learned that they are all rolled into the messy blob of life, indistinguishable from one another.

It is just another day, and it is the only day.

Ruby rubbed her warm cheek on my shoulder and yawned.  Tamara joined us on the sofa after having completed a long day at work.  We watched the end of the Christmas special.

This life, I thought, is sorrow and sickness, it is tedium and triumph, it is happiness and joy.

It is here and now.

#family #inspiration #specialneeds #happiness #joy


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