June 13, Day 9, Treatment day 13

Wednesday, June 13, 2012

I dread the nights.

Days are packed with visitors, activities, meals, and procedures which keep us together and busy.  But the nights are long and lonely.  Matt and I switch off both because there is only one parent allowed to sleep in the room, and also because we know deep down it is good for us to get a good night's sleep, take a shower, and leave the hospital.  But I find going home harder than staying put in our cozy room.

Home doesn't feel like home anymore.  There are toys and a monitor and a beautiful nursery.  But there's no Ari.  There are no sounds of laughter or little feet going pitter patter, no humidifier running all night, no electronic toys making silly noises, and no gagging sounds when we drop a used diaper in the genie.  The floors are cheerio free, the coffee table uncluttered, and the stroller out of sight.  Home feels sterile and empty and lifeless. 

And the nights in room 616B are filled with signs of life.  The nurses come in hourly to check vitals, the machines beep when the medications have been fully administered, and the parents quietly commiserate with one another in the hallway.  But most importantly and satisfyingly, Ari sleeps.  He tosses, he faintly moans when the nurse changes his diaper, and occasionally he lets out a cough or a call for "Mama."  But he is here and only a few feet away from me he is breathing and his health improving.  He is alive.  In this room, I feel charged with purpose. 

Yet I cannot sleep.  I am awakened by the beeping and the door creaking, by my hips aching, and by my mind wandering.  I listen to the ticking of the wall clock and wait patiently for daybreak.  And I look forward to another day of battle.

But most of all, I envision the not-so-distant future when we can all leave together and go back to what feels like home.
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Daily update:

Health wise, today was uneventful.  Ari's numbers are steady and his belly aches less frequent.  He had a bunch of great visitors today including a short curly haired red head who put on an incredible puppet show in the shower (she's very creative), and a guest appearance from a great friend who has an awesome Halloween costume:


Our roommate was discharged this evening so we are crossing our fingers that we will have some extra space for at least a day or two. 

Tomorrow Ari has a lumbar puncture in the morning and then we may try to venture to the playground if he's feeling well after the procedure.

My chin is up.

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