Today is the 17th, which means January and EA/TEF Awareness Month are half over. In today’s post, Christine Lester shares some light-hearted thoughts about parents of kids with EA/TEF. But first, let Christine introduce herself.
Meet the Mayor
My name is Christine Lester, I live in New Jersey with my husband Bill and our 2 children. (Billy, 8, and Alyssa, 6) I’m an artist and painter who gave up working when our first child was born with a complicated series of birth defects. Billy was born with Tracheo-Esophageal Fistula Type C (EA/TEF) and was repaired at birth.
He also has the full spectrum of VATERCLS as well. So including having EA/TEF he also suffers from extreme esophageal dysmotility and nerve damage, severe tracheomalacia, constant aspiration and pneumonia, asthma, congenital heart defects, solitary kidney, spina bifida, juvenile rheumatoid arthritis, auditory processing disorder & permanent hearing loss, reflux and GERD. He has had years where he has little medical intervention, and other years (like this year) that is full of medical test, surgeries, and doctors appointments searching for any doctor in the country that can treat him.
He is such an amazing blessing, truly Heaven sent. He is referred to as “The Mayor” at school for his outgoing personality and big smile. He’s our little super hero,” no capes required.”
You Might Be the Parent of a an EA TEF Child If…
Now that you know the Mayor and his family, take a look at this list created by the Mayor’s Mom about identifying marks of EA/TEF parents:
- 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.
- You have done the Heimlich more times than you can count on your fingers and toes. That all siblings ( even younger) ones, will come to your EA/TEF kids rescue if coughing or choking; Patting the back, giving a drink, asking if they are okay or just plain yelling ” MOM!!!”
- You know what the good cough is and what the bad cough is.
- Your child is not allowed to eat anything if you’re not in the room.
- 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.
- 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.
- You have all of your doctor’s phone numbers for your child programmed in your cell phone or memorized.
- You can have a referral written up and faxed over in less than 10 minutes. (Then you gloat at whoever said it can’t be done.)
- You know more about your kid’s condition then most doctors/hospitals. You have had to explain to residents what it is, what the letters stand for and how they fix/treat it. You educate them, and then you kick them out. Who needs doctors if you know more than them? You can weed out the gawkers from the real doctors in less than 30 seconds.
- You check on your child at night to see if they are breathing, even though your child is not a newborn.
- You PANIC sending your child to school, play dates, parties where you cannot monitor what your child may eat.
- You’re sick of explaining to people why your child can’t have____, hard candies and soda etc.
- You spend more of your days with a sick child, than one who is not sick.
- 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.
- You won’t take “NO” or” I don’t know” for an answer and refuse to leave until you get one.
Which Ones Make You Nod Your Head?
Reading Christine’s list, I nodded in agreement with numbers 1, 3, 5, 9, 10, 13, 14, and 15. How about you? Leave a comment about the ones that describe your life and come back next Monday for the rest of Christine’s list.
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