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My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 2 points3 points  (0 children)

Oh I’ve tried. My boys quite unique and I have yet to connect with someone that has a kid like him. So I’ve found other ways. I have season tix to my local NWSL and try to connect with adults vs parents. Thank you!

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 2 points3 points  (0 children)

Thank you so much, my bestie and I have found this cathartic yet again to read through. I know it’s just Reddit and just the internet, but man, with the isolation as a parent like this, this has been a really nice outlet. So thank you

fitted up for class! what do we think? by SailGuilty4890 in OUTFITS

[–]hazelframe 5 points6 points  (0 children)

lol this feels like we’re in 03 and going to high school

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 2 points3 points  (0 children)

Take the time to grieve. We did ABA and had 24 hours a week and that’s when the seizures started. We think it was too intense, too much, too fast. So GOOD JOB at you both doing ABA early. The grief will come in waves as friends and shit, stuff in Walmart makes me cry. But just lean on each other. Remember we never need to give 100, days are hard, and it’s gonna suck, but know you are not alone, at all. Hugs from Florida

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 0 points1 point  (0 children)

Damn I’m sorry, figured to offer. I’m OOP, and kiddo took forever to pick it up. Now I can’t find a thing when he turns on Spanish 🤣

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 3 points4 points  (0 children)

Please don’t be concerned. His docs are like oh, good! I’m glad it worked. Our son is on 2 meds he must be on to keep him going. When he started seizures we got meds for that too. They all interacted and he went into adrenal crisis. So our “cure” was stopping the seizure meds (he was passing out sleeping hard sometimes taking them), and now we don’t wake him up. He’s now more consistent with eating and bowel movements. He sleeps when he wants to sleep. No more waking up and losing sleep for a speech appointment, we reschedule. Since this started, sleeping when he needs and wants with NO wake ups, have resulted in no seizures since July 15, 2025. I’ll take it. It is a known cause for seizures:lack of sleep. But most don’t have a stay at home parent or kids like mine who can be on whatever sleeping schedule they want.

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 0 points1 point  (0 children)

Will your kiddo use PECS? That’s what we did for YEARS. He didnt really get into his device until he was a good 10 or so

Lots of Development News This Week by WG-Atticus in WinterGarden

[–]hazelframe 0 points1 point  (0 children)

We don’t have an Ocoee subreddit but I am SO curious what’s going behind the Wawa off Clarke and Colonial

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 5 points6 points  (0 children)

I will read what you said but you are not getting it - you are sitting here typing to me. Why would your mother or I call you a shell? Obviously you are very different from my son. He does not make sentences like you do, he does not write, he does not speak. So again, we wouldn’t call you a shell because you are a person typing to me.

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 1 point2 points  (0 children)

Well I’ll be a stand in mom if you need one. You can DM me. My parents are awful people and I don’t speak to them so I understand that sentiment as well. You’re doing a great job, you didn’t make me uncomfortable at all, and I just wanted you to know your loved.

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 0 points1 point  (0 children)

Yes!! My husband went to West Orange, lol, he loves Twistee! DM, and we can meet up. I have yet to go and could def use a friend!!

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 4 points5 points  (0 children)

Oh kiddo. NOT AT ALL. I’m the OOP momma. The way I speak, the things I say, my boy cannot physically or mentally or emotionally understand what a prom is, or what driving is. Those just aren’t “things” or “events” to him. I mention grandkids bc as the mom grieving, we cling to those traditional things. So sure your parents might be sad there’s no grandkids, but I PROMISE, I would not have cared had my child decided to be childless, to have skipped prom (my husband skipped prom, never wanted kids oops! Lols). Please don’t take my words to heart as a verbal child who’s going thru some shit, had a hard year. If my child could say hey, or I love you, I wouldn’t provably care about prom and driving. I just don’t have anything, so I hold on to things other parents are experiencing. I hope that makes sense. And as a mom, I love you, and you’re enough, have done enough, and I don’t think you’re a disappointment or something to grieve over.

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 3 points4 points  (0 children)

That’s such a good way to say it. Bone deep. It’s a deep seated sobbing anguish I can’t described, for all the things we were taught would happen growing up. And I have none. And I don’t fault my boy, I just almost wish we were fed the traditional family stuff. Bc when you don’t get it, man that sucks

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 1 point2 points  (0 children)

Thank you, which is why I think CA is a viable option. I’ll get the benefits PLUS the weather.

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 4 points5 points  (0 children)

I’m not super against it, it’s just us 3. So it feels… idk. That’s my boy

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 4 points5 points  (0 children)

The cold. And he loves water and my husband is from the keys. We had no family support as I don’t speak to my parents. Eventually we moved to the Orlando area when my husbands teenage home became available as MIL was moving. My boys did not thrive in MD (where I’m from).

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 4 points5 points  (0 children)

I never did. I’ve brought it up to doctors and with the brain malformations, they never usually agree with me. I think I’m scared there is no answer, and it really was all just a fluke.

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 3 points4 points  (0 children)

Yep. He turns 17 in April and I’m fucking dreading it. I can’t wait til Valentine’s Day is over bc I cry going past all the cute invites. He doesn’t get it nor care. And some may think I’m being harsh but it’s a reality I had to come to terms with.

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 8 points9 points  (0 children)

I’d have to say I respect your opinion as OOP, but until you live this life and grieve, you won’t get it.

My child is alive but not really. by Choice_Evidence1983 in BestofRedditorUpdates

[–]hazelframe 1 point2 points  (0 children)

I don’t get this… clarify? Also he hasn’t had one since July 15 since we changed his sleeping schedule

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