You Might Be the Parent of a Child with EA/TEF If… (Part 2)
In last Monday’s post, Christine Lester shared the first half of her light-hearted list about parents of kids with EA/TEF repairs. Today, she shares the second half on the list, based on her life as mother of Billy, or as he’s known at school, the Mayor.
More Ways to Identify Parents of Kids with EA/TEF Repairs:
- You have fought with the front desk staff about NOT putting your child in the ‘sick waiting room’ as this is how they always sound. Then you secretly pray your child doesn’t sit next to the week old newborn in the well side. You know for a fact the mom’s going to freak-out you can tell by the way she’s giving you the evil eye.
- You hate when it’s cold out. PERIOD. You know as soon as it gets cold out, well your kids going to be sick and coughing A LOT. Coughing will stop when it’s just about time to pull out the bathing suits.
- You travel with Purelle and wipes at all times, hoping to not get your child sick. You avoid large gatherings because of this.
- You schedule surgery, knowing 9 times out of 10 you will need to reschedule because by the time that date comes, your kiddo will be sick again.
- You know what NICU or PICU soap smells like, and you can still smell it if you close your eyes.
- You probably didn’t get the new baby experience you had been hoping for.
Instead you got NICU’s and Surgeons. And big words you couldn’t pronounce. - You think your child is the MOST AMAZING, STRONGEST Kid the world has ever seen. And they are!
- You would take away all the sickness, surgeries, hospital test, doctor’s appointments if you could.
- You can recite ALL your child’s medical issues (a whole page of them), medicines and doses, previous surgery dates and hospitalizations, any doctor you’ve ever taken them too. Yet, when you go to your doctor you can’t remember what dose of medicine you take!”It is the little purple pill” LOL
- Your cupboard or fridge looks like a pharmacy.
- You are thrilled when your kid falls down riding a bike without training wheels, because being on a bike alone, means you’ve made it! Seeing your kiddo eat pizza and have some popcorn at a movie makes your heart happy! As these are all things you NEVER thought they would do when they were born.
- You call your doctor and they know your voice and greet you by name.
- You’re tired of people looking at your kid (who appears completely healthy on the outside) and then trying to convince them that all the health problems are real and VERY serious. Not imagined. It’s like you have to plead with the doctors and people to look beyond what they initially see. That even though they seem healthy on the outside, there is more going on internally then they can wrap their minds around. So if they give your kid that jolly rancher you’re going to hunt them down….
- You know your kid better than ANY Doctor. If you say they are sick, well then they are. You may just see it a day or two before they do.
- You believe in miracles, because you live with one.
No Capes Required
Christine ends the list with these words. “This is our story. No capes required.”
Maybe no cape is required, but nonetheless, the Lesters and all other EA/TEF parents have earned capes. So wear your superparent and superkid capes with pride. If you want to meet more parents like you, visit http://bridgingthegapofea-tef.com/home.
Which Ones Described You?
Which items on today’s list described you or your child. Leave a comment about the numbers that made you smile. (My smilers were numbers 2, 4, 5, 6, 7, 8, 9, 12, 13, 14, and 15) And if you have more to add to the list, leave a comment about that, too.
Donning my cape and sewing one for our son,
Jolene
1- 15 are def us! Esp #4, everytime!!
Number 11 – the first time we went to the ER for an injury rather than an illness the staff couldn’t understand why I was so HAPPY. My son had fallen down while running and split his chin open, which needed stitches. It was the first time we went without seizure/pneumonia/adrenal crisis – it was a normal kid thing.
WOW! This really is true! Chills!
forgot to say the numbers of the ones that apply…all of them
Amazing how a person’s perspective changes, isn’t it?
Jolene
Thanks, Maryann!
I can relate to a number of these just from having a sick newborn and spending months at a time in the NICU!! I smelled the soap as soon as I read #5!! I have to say though, my time at the Ronald McDonald house was a blessing. I thank all the volunteers and those who loved us through tough, tough times..
The soap smell never leaves you. After 28 years I can still smell the soap we used. They probably use something different now, but in my memory it’s the old stuff.
Jolene
#5… the soap smell. I LOVE that smell.
Lol I got another one you can say what your child has 3 times fast and the person your talking to thinks you must be a nurse.
My husband decided to become an EMT and then a nurse after our son was born. No joke!
Jolene
Opal I’m so glad I’m not alone.
I feel odd being happy about Normal things like this.
Oh and the soap, yeah seems we all associate that with the babies.
Christy I’ll have to add that. I’ve had Doctors and interns ask me to spell it out, and hand me their notes after to check to see if its right.
I would totally go back to school to go into nursing if only my number one patient would let me. ha ha. Thanks for all the love guys!
Christine, you amaze me every time you talk about this. I am in awe of you and the other parents and your strength and grace. Im blessed to have you in my life
Amen to that!
Jolene
Since my little guy is still in the NICU, I can relate to some like 5-9 and esp 15. Thanks!
All of them bring laughter, tears and memories. . .lots of memories of all the battles won
Z’s mom
Hang in there, Kara!
That’s the spirit, Steph. How old is your child now?
Jolene
I seriously teared up when I read this! Many apply to us! I didn’t have anyone who understood what we were going thru while we were in the NICU for 4 1/2 months. We had amazing support from family and friends and we too had such an amazing experience at the Ronald mcdonald house! What a huge blessing they are!
To Christine, Lori and Maryanne thank you for all the awareness you have given EA! I wish I knew you all when I was first going thru this but I am beyond thankful for knowing you all now! Such a blessing!!!!!
It’s like coming home, isn’t it Raquel?
Jolene
I am moved beyond words that these little list have struck such a cord with so many parents. I have felt so alone for so long and thought these things listed were mine alone. I’m so thankful that others understand and are moved by this! I am equally grateful to have such a great support system and enjoy adding you all to our family! Sending hugs to all of you. ((hugs))
hahaha – all of the above!! i laughed out loud bc they are all SO true
Yep, Christine nailed it.
Jolene
I am a grandmother of a beautiful 2 1/2 year old girl with TE Fistula. I can relate to all of these. For my daughter, she still mentions how the birth went, with her daughter being rushed to NICU after birth. Not the birthing experience that she was hoping for. And #13, so true. My granddaughter looks so normal and beautiful on the outside but not on the inside. I teared up reading this.
Dear Jennifer,
How is your granddaughter doing now? Her parents can benefit by visiting the EA/TEF FB page and the Bridging the Gap website. If you type either of those words in the search box, you’ll get to other posts at DifferentDream.com with links to both resources.
Jolene
2,5,6,7,8,9,10,12,13,14,15. Its heart wrenching when you find out that your new born has alot of health issues. I can remember the moment when the NICU doctor told me the news of our son. Two days after he was born he had his EA/TEF repair and then three weeks later had open heart surgery and then three week after that he had his gtube put in. I definitly know what its like to visit the ER. Its sad the the staff in the ER know my son very well. He always up there either from some type of respitory issue or his gtube falls out in the middle of the night. I get so tired of having to constantly go over his medical history with every doctor we happen to come our way. I definitly get freaked out when the fall season hits because i know he will come down with respitory infection. I am a proud parent with son that has beaten alot of health issues. I hate when people with healthy children stare at my son they have no clue what its truly like to have a disable child.
I wish i could feel the joy of seeing my son eat. He is 3 1/2 years old and having a hard time learning to eat. The doctors say its mental issue because he is so dependent on his gtube feeds. They recomment an intesive feeding program but unfortantly alot of those programs dont take my sons health insurance.
Hang in there. That time may yet come. Our son didn’t have nearly the complications of many EA/TEF kids, but he was almost 5 before eating was a non-event for him. Even now, at 28 he has to be careful. But no one other than family (and especially me as his momma for whom it seems the eating episodes happened just yesterday) know he ever had a problem.
Jolene
9 and 12 (all of them really LOL)
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.
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
Like Lays Potato Chips – it’s hard to choose just one, isn’t it?
Jolene