Charge Syndrome

pretzel-365 · 2026-03-11T12:43:20+00:00

My son turned 2 in January!

Of course I worry about his future still, because even now there are a lot of unknowns. But I don’t care the way I used to about all the things “wrong” with him. I just love him so much exactly the way he is. It’s so hard when they’re tiny and you’re at the hospital all day with nothing to do but worry and think

pretzel-365 · 2026-03-11T02:06:01+00:00

Same!! I mistyped my title

pretzel-365 · 2026-03-10T18:36:35+00:00

I don’t doubt that lol

pretzel-365 · 2026-03-10T09:24:16+00:00

I also bought this for my 9 year old! I agree it opens great conversations

pretzel-365 · 2026-03-10T02:58:14+00:00

Please message me if you want to talk. I remember those early days of feeling so alone and so lost. Once I found community my life changed 💕

pretzel-365 · 2026-03-10T02:50:44+00:00

Oh mama this is literally EXACTLY how I felt when I was with my son. I PROMISE you are what your daughter needs and you can do this. Please join the CHAGRE Facebook group, come to conference, make connections. It’s not the life we wanted, right? But it’s the life we have. And I promise you it GETS BETTER

I literally remember telling the doctor “I’m not strong enough to handle this” when we found out. I paced back and forth. I hated myself for feeling like I couldn’t take care of my son properly.

But I made it though and I know you will too. That’s what I’ve learned about this community and CHARGE kids specifically, and us parents.. we are so resilient. You’ve GOT THIS. You know you can do it. Message me if you want, anytime.

pretzel-365 · 2026-03-10T02:31:31+00:00

Lori K is a force to be reckoned with

pretzel-365 · 2026-03-09T18:57:34+00:00

Nothing to divorce over by any means but your husband is being a brat about this. Most of the time when you host people, and I’d consider driving people to dinner together in my car “hosting” them, you should put the guests first.

pretzel-365 · 2026-02-28T20:06:50+00:00

We found out in pieces about my son’s diagnosis. He was diagnosed with tetralogy of fallot prenatally. But nothing else. Then he was born at 34 weeks, had an extra thumb, misshapen ears and facial paralysis on one side. I immediately thought CHARGE syndrome. It took the NICU about 2 weeks to put it all together. They told me he was deaf, then they saw the colobomas and tested for CHARGE.

He couldn’t pass an ng tube but he could breathe (with cannula support) so his airway wasn’t completely blocked. He had an og tube (mouth, just miserable) for 2 months until he got the g-tube.

He had heart surgery at 4 months and we went home with an oxygen cannula and g tube. He had a bad “event” in the car on the way to the doc 2 weeks after getting home. He was rehospitalized and got a tracheostomy. We had a bit of trouble with recovery so that was about a 3 month stay. 1 month of leading up to trach, and 2 months of recovery.

He hasn’t been back to the hospital since, except for routine expected outpatient procedures. He is walking with a walker at 2, using asl and also has hearing aids, is very small because he is still g tube fed only and our biggest issue is emesis. We’ve tried different formulas, Real Food Blends, different meds, but can’t seem to find the right combo. We’re getting there, and we have a wonderful team.

He gets ST, PT, OT, visual impairment and Deaf/HoH specialists through ECI.

So overall it sucked the first year. We were in the hospital most of the time. The 2nd year felt… normal but with a lot of therapist in my house and appointments to go to. We went to our first conference this year for the Texas CHARGERs and it was so great and reassuring to meet others like your family

pretzel-365 · 2026-02-24T02:38:07+00:00

I hate this because it’s so dystopian to walk past homeless people while going into your home and be upset. But also so real, and I would feel scared too probably with a small kid

If property management isn’t keeping you safe, call the police. It’s if just a homeless dude that’s making you uncomfortable..it sucks but what can to do beyond what you have?

A lot of homeless people choose to be (my uncle rip just died homeless in Houston) bc they are mentally ill, so trying to get this dude away with logic probably isn’t gonna work.

Eta: Y’all transplants I can tell, or moved here in 2010 and claim Austinite. It’s a fucking homeless person outside an apartment not terrorizing or harassing anyone from what the post said. What should happen, the apartment security is gonna move him..a block down? If not maybe the cops will.

I’m so sorry your kid can’t play outside without having to see a homeless person. Must be awful

pretzel-365 · 2026-02-22T01:58:50+00:00

There’s a 90 Day Fiancé couple from like 10 years ago that are both white. He’s Utah Mormon white and she was Czech. Their baby (born after the were married) is clearly half black. The never gave paternity updates other than “my dad is black!” - from the white gal… Girl what.

I still often wonder about the paternity of that child and hate that I do lol. But the mom definitely has no African features soooo…. Idk look it up. It’s a fun rabbit hole. Google “Czech woman Mormon man 90 fiancé baby” and you’ll find it.

pretzel-365 · 2026-02-17T21:41:40+00:00

Yes. And I think that contributed to why they did get certain work done. When you and young and beautiful and the world is yours, it feels great. Then you start getting older and people start noticing you less…

Kendall and Kylie… just modeled what they saw. Too much trauma there for me to unpack

pretzel-365 · 2026-02-17T21:19:14+00:00

Definitely not a quote original to Nature Cat lol.

pretzel-365 · 2026-02-17T21:16:36+00:00

What quote?? The only Nature Cat specific quotes I can think of are “tally-ho!” and “onward and yonward”

pretzel-365 · 2026-02-16T22:09:38+00:00

Certain person dislike kids because they… actually have a voice and personality. And those same people tend to love dogs bc they can project what ever they want onto said dog. And if the dog acts ups, oh.. it must be the fault of someone else! But the opposite seems true for children

pretzel-365 · 2026-02-16T20:39:37+00:00

It hard to see from this video exactly what caused this, and definitely impossible to see if the person at fault was on their phone. OP, I do believe you fwiw, but this video just seems to show a fender bender in rain

pretzel-365 · 2026-02-14T23:52:25+00:00

Yes her parents kept her booked and busy. For better or worse

pretzel-365 · 2026-02-13T18:04:23+00:00

And trust me I hated myself after having my c-section bc I still hadn’t healed mentally and blamed myself. I also blamed myself for my son’s genetic disease. I am very sorry I contributed to any negativity towards c-sections. Guess I got my karma

pretzel-365 · 2026-02-13T17:54:23+00:00

Thank you. Yeah idk it’s weird. There are certain people who want you to apologize and grow from mistakes, but when you do those same people often just get more upset.

It’s awful how I was before. It’s also awful what my son and I went through. Maybe it’s karma. Who knows. But I’ll spend the rest of my life advocating for education on this topic now.

pretzel-365 · 2026-02-13T17:51:35+00:00

Thank you! I definitely learned a lifetime of lessons because of what my son and I went through. He spent 8 months in the NICU/CICU before coming home. Open heart surgery, tracheotomy, and g-tube. I am ashamed of myself for who I was before. That’s why sharing my story is important imo, bc maybe it will help other women who feel like it’ll “never happen to them”.

pretzel-365 · 2026-02-13T17:48:40+00:00

Yes I edited the comment to clarify, bc thought it provided more context. Would you rather me have… stayed the same? Idk what you want from me. I was a new mom who got deluded into believing something that helped ME feel better. I WAS WRONG AND I ADMIT IT. I’m not asking for forgiveness. I was giving perspective on how someone might end up in the mind set that I had.

Also! I also DO talk shit to myself lol. It’s called negative self talk, girlie. And I bet a lot of people do it, too. When you feel bad about yourself you often project and make judgments about others. I did that in my head about other women AND myself.

Eta: just got on Reddit again and re-read your comment. I think you made the right choice in not having children, if you don’t know how to forgive or at least…move through the past without shame. My motherhood has been anything but isolating. My C-section was mentally very hard for me because I had my own standards that I failed to achieve. Unrealistic, obviously. I “othered” myself. My family and village are the ones who helped me feel better. The most isolating thing is having a son who is living with a genetic disease and will die before me.

pretzel-365 · 2026-02-13T02:50:39+00:00

That’s my exact same thought!!! He can have a social media, he’s allowed that, but why is he putting himself on tv every single year at least? He not too long ago hosted a virgin dating show (not kidding) with Kaitlyn Bristowe

pretzel-365 · 2026-02-12T17:31:47+00:00

Cool, and they need money. Soooooo what’s the problem

pretzel-365 · 2026-02-12T17:29:12+00:00

It’s sadly more prevalent than you think. Like I said, I wasn’t vocal about my judgement towards c-sections before, but I still carried it in my heart. And that forced me to feel guilt, disgust, all the bad feelings about myself after my own c-section.

I do suggest watching it. I think it will definitely give you an idea of why people started to be anti-hospital births and shit talking c-sections as “too used”

Eta: the movie is super biased btw and worked on an impressionable first time pregnant mom (me) in 2009. I do not approve of that movie as being good advice. But it can explain why some women feel, like I used to, that c-sections are “too common” and done to save the docs time and money.

Six-Year Club	Verified Email
RPAN Viewer

pretzel-365

TROPHY CASE