EA/TEF Awareness Month: You Might Be an EA/TEF Parent If…

EA/TEF Awareness Month 2013 is almost over, but it can't pass without a word from Christine Lester, whose son Billy was born with EA/TEF.

EA/TEF Awareness Month 2013 is almost over, but it can’t pass without a word from Christine Lester, a Different Dream blogger who’s son Billy was born with EA/TEF.  Christine’s a little preoccupied with some exciting family developments these days, so she suggested using a lighthearted piece she wrote a couple years ago. The original list had thirty items, from which the following top ten items were gleaned.

Top Ten Signs You’re an EA/TEF Parent

  1. Your kid “barks or coughs” at the grocery store. So you’re either told you shouldn’t take such a sick child out, or little old ladies leave your line afraid of catching your kids “croup”….and that it’s much easier to agree that you’re a terrible parent bringing a sick child out, then to explain the real reason for the cough.
  2. Your child is not allowed to eat anything if you’re not in the room.
  3. You have done CPR on your child or in one way, shape or form saved your baby/child’s life. You have seen a “death spell” with your own eyes.
  4. You see your primary so often that he carries your child’s chart in his briefcase for fear of needing it and it being in another office.
  5. You PANIC sending your child to school, play dates, parties where you cannot monitor what your child may eat.
  6. You are an expert at dealing with the insurance company, fighting claims, getting referrals and reading EOB’s, getting the doctor’s appointment moved up.
  7. You know what NICU or PICU soap smells like, and you can still smell it if you close your eyes.
  8. You would take away all the sickness, surgeries, hospital test, doctor’s appointments if you could.
  9. Your cupboard or fridge looks like a pharmacy.
  10. You believe in miracles, because you live with one.

 

What Would You Add to the List?

To read Christine’s list in it’s entirety, visit You Might Be a Parent of an EA/TEF Child If, Part 1 and Part 2. Then come back here and leave a comment about your favorite item on Christine’s list. Or leave a comment about what you would add to the list. Thanks!

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6 Comments

  1. December 20, 2013    

    I’m not the parent of an EA/TEF kid, I’m the SPOUSE of an EA/TEF adult.

    I’ll add: your night time routine wouldn’t be complete without EA/TEF survivor hacking up a lung between laying down and falling asleep. And this is when EA/TEF survivor is well.

    The doctor goes over options for how to prevent five bouts of pneumonia in one winter season. One option is continuous low dose of steroid pills. He explains the risk of obesity associated with long exposure to low levels of steroids and then looks at your (child/spouse)’s skinny frame and says, “but in this case, that’d actually be a GOOD thing.”

    Your kids know how to work the “chest-o-beater” (percussion machine) and think the vibrations are fun.

  2. December 20, 2013    

    I’m not the parent of an EA/TEF kid, I’m the SPOUSE of an EA/TEF adult.

    I’ll add: your night time routine wouldn’t be complete without EA/TEF survivor hacking up a lung between laying down and falling asleep. And this is when EA/TEF survivor is well.

    The doctor goes over options for how to prevent five bouts of pneumonia in one winter season. One option is continuous low dose of steroid pills. He explains the risk of obesity associated with long exposure to low levels of steroids and then looks at your (child/spouse)’s skinny frame and says, “but in this case, that’d actually be a GOOD thing.”

    Your kids know how to work the “chest-o-beater” (percussion machine) and think the vibrations are fun.

  3. December 20, 2013    

    Oh Laura, this made me laugh. I’m so glad your EA/TEF hubby is alive to make your life so interesting!

  4. December 20, 2013    

    Oh Laura, this made me laugh. I’m so glad your EA/TEF hubby is alive to make your life so interesting!

  5. Christine Lester Christine Lester
    December 21, 2013    

    Ha ha!!! I love it!

  6. Christine Lester Christine Lester
    December 21, 2013    

    Ha ha!!! I love it!

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