Josiah's Journey

Navigating life with a special needs child.

Chandler's in Charge

By 10:39 AM

Our new room at Rainbow Babies was extremely large.  Picture a penthouse suite.  O.K. it wasn't that large, but by hospital standards, we were impressed.  Josiah was wheeled in, sleeping in his salad bar crib.  Chandler was placed in baby jail, a crib with metal bars all around.  Kind of resembled a monkey cage at the zoo.  No way that kid was getting out of that contraption.  Good thing too.  She was a fiesty one.  Still is actually.  She pulled out her  I.V. very shortly after they inserted it.   She fought the nurses with a strength I never knew the child possessed.  They told me early on they literally drew straws to decide who had the responsibility of taking Chandler's vital signs every few hours.  She was a force to be reckoned with.  The kid was not yet 2 years old. 

When she arrived at Rainbow Babies, Chandler was miserable and wanted me to be with her constantly.  Since Josiah spent much of his time sleeping, I spent most of  my time on Chandler's side of the room.  She hated the frequent nurse visits and screamed loud enough when they did stop in that most everyone on that floor knew it.  I'm sure she was extra clingy because I hadn't been with her for a while.  She had been home getting sicker by the day, wanting her mother.  I hadn't been there.  I had been in hospitals with Josiah.

Now that she had her mom back, she was not willing to share me with anyone.  I planted myself in a rocking chair by her crib, reaching my hands through the bars to rub her back and arms when she was sleepy.  Mostly, when she was awake,  I just sat and held her.  We rocked for hours.  Josiah was left alone, far, far across the room, so tiny and helpless.  I could barely see his little head wrapped in the blanket.   Nurses tended to his needs, but I was no longer available to hover over him as I had done up until this point.  Chandler needed me now though, so I was content focusing my attention on her. When I wasn't rocking Chandler, she watched me to make sure I was sitting there, right next to her crib.

Occasionally, I needed to get up out of that rocker.  Sometimes I just needed a break.  Sometimes I just wanted to stretch my legs or get a quick snack.  Other times I needed to go to the bathroom.  Chandler would have none of it.  I would wait til she was lying in her crib, seemingly sound asleep.  Ever so slowly I would raise myself out of that chair, careful not to make a sound.  Didn't always work.   Chandler would spring up to a sitting position, instantly grab her I.V. line and hold on tight.  This little kid was threatening me.  If I left her side, she was letting me know the I.V. was coming out. 

I tested her, just to be sure.  The first time I saw her respond this way, I quickly sat back down.  She watched me closely, then eventually released her grip on the I.V. and laid back down.  But her eyes were on me.  Until she fell asleep, she'd stare at me intently.  At first I thought it was funny.  I couldn't believe this little girl would threaten bodily harm to keep mom by her side.  After a while though, I got tired of it.  There were times I DID need to get up and go into the bathroom.  I'd explain it to her soothingly with a soft, gentle voice.  "Sweetie, Mommy will be right back.  I'll just be in the bathroom a few steps away.  I'll leave the door open a tiny bit so I can still talk to you and you can see me."

Chandler was not calling my bluff.  She'd let loose with blood curdling screams, yank out the I.V.,  and watch to see how quickly I'd race to her side.  Every single time.

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