Archive for January, 2015

Response to Super Mom

Last week Amy published “Mom in Scrubs,” which said “I’m not a super mom” over and over again.  She basically dared me to write a response, so here it is.  I apologize in advance for those of you who may have delicate sensibilities.

Our lives by the numbers, in no particular order:

  • 18 month old baby
  • 6 week early delivery (by very emergency C-section)
  • 2 days old for heart catheterization procedure
  • 250 diagnosed cases (maximum – ever) of Eliana’s genetic condition
  • 4 weeks old when dialysis started
  • 14 week NICU stay
  • 12 (or so) emergency room visits (we’ve lost count) – including 2 caused by careless home nursing errors
  • 7 surgeries
  • 4 cases of peritonitis
  • 1 memory foam mattress topper for hospital stays
  • 12 (or so) medicines per day at her max
  • 1 nasty case of sepsis
  • 4 wings of the Hershey Medical Center Children’s hospital (out of 4) that we have stayed in at least once
  • 30 (give or take 10) home nurses who have worked here at least once
  • 12 hours of dialysis, 7 nights a week
  • 9 weeks in a row with virtually no weekend night nurses to start the year
  • 15 year average half-life for a deceased donor kidney (closer to 25 years for a well-matched live donor)
  • 0 days in Eliana’s life where she has not taken some sort of heart or kidney-related medication
  • 0 days in Eliana’s life where she will not have to take some sort of heart or kidney-related medication (absent some huge scientific breakthrough that has yet to be made)

And that’s just what I can remember off the top of my head.

So when Amy writes “I am not a super mom” I can think of only one appropriate response:


And we all know it.


January 31, 2015 at 10:59 PM 7 comments

Mom in Scrubs

I searched the web the other day looking for ideas for keeping your tube-feeding child safe while feeding–and by safe I mean not pulling out the tube, not pulling apart the tubing and making a mess, and not making mommy crazy by getting into trouble while feeding. Instead of helpful tricks other parents used to keep their kids entertained and keep the tubes out of the way, I found pictures of perfect little toddlers happily playing while the tube sits untouched and stories of super moms who do it all, raise dozens of kids, and tote their tube-feeding children everywhere.

I was patting myself on the back for getting out for a walk with Eliana one day last week when it hit 40 degrees. The next day I was totally off–misread the nursing schedule and then forgot that Eliana’s physical therapist was coming. So I look a little frazzled. Oh, well, I never claimed to be a super mom.

(Remember Scrubs, Zach Braff’s hilarious medical sit-com and its killer theme song?)

Nope, I’m no super mom–and I don’t want to be. I have read two blogs recently by moms who call themselves super moms. And they are, either because they’re raising special needs kids, home schooling, working full time, or whatever else makes them unique. In this house, we’re happy when everyone’s fed and clothed at the end of the day. Super is too much to ask for.

After Shira was born, I went back to work part time. It was hard to find child care on a part-time schedule and wasn’t very financially feasible, but we made it work. I was able to keep working part time as she got older and plan my work hours around her school day and activities. That worked pretty well.

It’s a different story with Eliana, and even though she qualifies for private duty nursing, I was struggling to find the time to work even 20 hours a week. Now I’ve decided to stop working and cut back on nursing because I’m not a super mom, just a regular mom with some extra jobs to do.

(Stay tuned: Hank promises to follow up with a rebuttal.)

January 25, 2015 at 7:30 PM 5 comments

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