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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I agree, Tami. It does get easier. My boy is now 36 and takes care of it himself. So that’s much easier! Jolene
I totally get it! These are great. My son is 10 now and it does get easier – or maybe I just am more comfortable with my “new normal”. Thanks for sharing!
Hi Sara,
That’s a very good question. You’ll probably get more responses at these Facebook pages:
https://www.facebook.com/groups/49652608806/
https://www.facebook.com/groups/157730937619916/
A lot of parents post questions there and many other parents respond very quickly. I wish I could answer your question but Prevacid wasn’t in use in the 1980s when our son was little. Tagamet was the wonder drug then!
Jolene
I have a niece who has TEF and snow 3 years old is doing pretty good. Unfortunately she has t use prevacid for her heartburn and it is very dangerous with very bad side effects. Does anyone know what else she could use that is safer, or has tried something else that works for their child.
Sara
I second Christine’s comment. She worked hard on the EA/TEF list, so honor her hard work and ownership by copying and sharing the link rather than cutting and pasting the content.
Jolene
I have a request as the author of these post can you please copy the links to this and the other EA/TEF post? These will be included in a book I’m writing and will be copy written.I am so very thankful that everyone is sharing to spread awareness but if you could, please don’t copy and paste. Thank you so very much. I hope I don’t offend anyone but I really want to include these and not have issues with ownership of them. Thanks a million. 🙂
Thank you! It sure is a great post it sure helps for my family and friends to somewhat understand what we as TEF/EA parents go through as well as our little miracles.
Hi Ada,
It’s a great post, isn’t it? Yes please do share it on your FB page. Credit to Christine and DifferentDream.com is appreciated!
Jolene
Do you mind if I share this as a note on my fb page of course giving full credit to Christine and your site for posting ?
Remember if you haven’t read part 2 here it is 🙂
http://f06.70c.myftpupload.com/2011/01/you-might-be-a-eatef-parent-if-part-2/
Our kids are part of the residents’ training program – experience is a great teacher. And we’ve got way more experience with TEF than the docs do!
Jolene
I love number 9. Isnt sad that us as parents know more about our kids condition then the doctors do. The ER always sends the residency in first and just shake my head because i will have to describe every little detail of my son medical history and explain and they just look clueless.
And if you had a quarter for every horrified stare after you said “That’s how he always sounds,” you could fly to Cancun!
Jolene
i can relate to all of these with 6 being an exception maybe. if i had a quarter for every time i said ” thats how he always sounds” or ” thats normal for him” id be set for life.
Kara, The EA/TEF group (listed above) and the Bridging the Gap US site have been my life lines. I have found parents who have experienced all the issues I have and will encounter. We have great resources now. I would invite you to join all of them. You will have a whole new family of support. http://www.facebook.com/?ref=home#!/pages/Bridging-the-Gap-of-Eatef-US/134886699886413 or webpage at http://bridgingthegapofea-tef.com/home We also have State Liasions that can help you find care, and resources state by state and can offer advice on everything from Feedings to playdates. I sure hope this helps. I pray your little one comes home soon to. We all know that part of the journey is extremely hard also. Much Love.
You are so welcome, Kara. NICU days are so hard, but the EA/TEF group can help a lot. If you’re on F, join this group: http://www.facebook.com/home.php#!/pages/EATEF-Family-Support-Connection/78418175958 You can post questions and other parents of EA/TEF kids will share their expertise. It is a HUGE blessing! Here’s their other page, which has information about events and media coverage rather than advice.
Jolene
My son is still in the NICU at 2 months old so I can not relate to all of these yet. Thank you for sharing everything and making this a little easier by not feeling alone.
You are so right, Holly. Being a EA/TEF parent isn’t easy, but it’s not nearly as difficult when you know you’re not alone. If you’re struggling, my book, A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children might be an encouragement to you, also. Check the “buy the book” tab for more information.
Jolene
As i was going down the list i started crying by the time i was done i was full out balling. Thank you for making me feel not alone. i can relate to everything on this list. when you dont know anyone around you that has a child with EA/TEF or even know anyone that knows what it is. you really start to feel like you are the only family going threw this. but we are not and it iss things like this that make you remember. thank you once again
A doctor once told us, “If I ever have another patient with this, I’ll refer the family to you since you know more about this than anyone else.” For some reason, the words were not reassuring!
Jolene
My son TEF/EA! He’s been through a lot in the past 14 months of his life.I can relate to everything above. Doctors & nurses have not a clue, & i’ve argued with our insurance company until i’ve literally gotten sick. I know that there will be good years & bad, but I know LeeLand is strong. I REFUSE to give up on him.
I can relate to 1, 2, 3, 4, 6, 7, 11, 12, 13, 14, and 15. Although thankfully we haven’t had to do the Heimlich we have had our oldest yell out that the youngest is stuck and she also tells her to take a drink!
Definitely #1 all the time!! Especially if you are out to eat! And # 7,8,9,12,14 and 15. Still love the # 1’s. Last week I could hear this woman say “Wow” I can’t believe she brought that kid out!?
I think I only wrote this to stop myself from crying. I needed to laugh about our situation. Stay tuned everyone. I think the second part will really hit home with most of you. I’m so glad everyone is enjoying this so much. 🙂 Keep sharing this and info about EA/TEF. Awareness is power.
Not only is this making us all “friends” its making us “family”.
Kalli,
My dad, who had multiple sclerosis, always said “If you don’t laugh about it, you cry. And people who laugh have more friends.” He was right. Christine’s laughter is making us all friends!
Jolene
I love it. Agree totally with all of them. It is so weird that we can all sit back and actually laugh about all of this. It is just so great to have so many wonderful families to share all of this with!!
Christine…I absolutely LOVE this…its so true…I’m so glad we all “found” each other…I can totally relate to #’s 1, 2, 3, 7, 9, 10, 11, 12 & 15…thank you for posting and putting into words so eloquently what most of us face daily!! xoxo
Christine,
Your list is striking a chord with EA/TEF moms. They’re going to love Part 2 next Monday!
Jolene
I can honestly say that all 15 totally apply to me!!! Crazy! The only one that was a little different was Mac needs soda sometimes and it feels weird to have someone look at you strange b/c you are letting your 2 or 3 year old have soda to help them get unstuck. I love wearing my pin so that hopefully someone will ask me what it is for. My oldest has been spreading awareness in her 1st grade class too.
thanks for the insight and as always the reminder that i am not the only mom/parent with a special child! it is easy to get to the place of loneliness and feeling of being the only one, but this is a wonderful reminder that we are not only parents to a ‘special’ child, we are ‘special’ parents. praise the lord for his constant strength and guidance!
This was such a good laugh! Thank you. I needed that today.
I agree with all of them! 1 – 15!
Thanks for sharing this post!
Eileen
OMG! This is perfect!!! I can relate to soooo many!!! Especially the first one. I get so tired of explaining to people about the EA/TEF, I just say, i know I’ll get her to the doctor one of these days!!! Thanks Christine, this made my day!
🙂
Jolene
I’m a 1, 2, 3 5, 6, 7, 8 9 10, 14 and no doubt 15!
And thank you to Christine for sharing this post! I love it!
I second the thank you, Christine. Lori, you are a wonder!
Jolene
I would just like to say a “Thank you” to Lori McGahan founder of Bridging the Gap for starting this EA/TEF Awareness month and connecting all of these EA/TEF families.