Do you feel me?

July 28, 2014 at 5:47 PM 1 comment

The four of us got out to the Ned Smith Nature and Arts Festival this Saturday.  It’s become somewhat of a family tradition to head to the festival each year (not so much last year, though) so Shira can make herself a fish print t-shirt.  This year it was a turtle…but that’s really not the point of the post. 

While Amy and Shira were doing a creek walk I was crouched under a tree holding Eliana’s syringe as she burped about 30 milliliters of slightly digested formula back into the tube. Yum!  Gross for others, I’d guess, but normal for us.  While trying to be discreet, a nice little girl wandered over to see the baby.  (I’ve found that little girls like babies. Who knew?)  As her mother came over to collect her, she commented, “I know what you’re going through.  We just stopped having to tube feed our 5 year old.”

Nice.  A little empathy goes a long way when cradling a syringe of partially digested food.

But that wasn’t the weird interaction.  About a half hour later, once Eliana was FINALLY napping, another woman came over to coo over the baby.  (I’ve found that women of any age are willing to coo over just about any baby. Who knew?)  She walked up and said something like, “Your baby is sooo cute!  Is she on peritoneal dialysis by any chance?”

What?  Who would know that?  And how?  

Turns out that the very tip of Eliana’s dialysis catheter cap was sticking out from under her cute little dress.  This woman’s granddaughter had kidney disease and had been on dialysis, so she recognized both the chubby cheeks of a baby that might have a bit of excess fluid on board as well as the hardware sticking out.  Turns out that the family was also treated at Hershey Medical Center, so she knew our doctors too.  

Small world.  This is the second time we’ve had a somewhat random encounter with another patient’s family – and we even heard that a transplant family was at the event, though we didn’t end up stumbling upon them.  As crazy unique as our situation might be, it was oddly comforting to have even that brief chat with someone else who has even the most basic understanding of what we’re going through.

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Entry filed under: Uncategorized.

The Yearling Mind the Gap

1 Comment Add your own

  • 1. Joyce D.  |  August 4, 2014 at 4:40 AM

    Back when our Gaby was little (she’s now almost 20) we would try to tube feed in privacy but it’s amazing how many people would find us and comment about a family member/friend who was also going through or gone through what we were. It’s nice when you have a rare syndrome child to find that you’re not alone 🙂

    Reply

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