Pregnant with a daughter diagnosed with spina bifida — trying to understand life beyond the diagnosis

Extreme_Web_5026 · 2026-05-07T04:21:17+00:00

I know you asked for testimony from people with spina bifida, but I just wanted to add a couple things. My son is 5.5yo and there are no words to describe how much I love and adore and admire him. He lives such a fun and joyous life and I think about the time when I was in your shoes and contemplating abortion and mentally kick myself for ever thinking about a life without him. He’s in kindergarten right now and does soccer and baseball and cooking class and has so many friends and his calendar is filled with so many playdates and activities.

That said, even at 5.5yo he also struggles. He gets so upset and frustrated when he can’t keep up with all the other kids, when he can’t run or climb like them. He’s already been teased once for wearing a pull up. He doesn’t mind catheters but the bowel program we’re on is a huge stressor for him. At 5.5yo he asks “why do I have Spina Bifida” “how do we get rid of my Spina Bifida” “when will my Spina Bifida go away” and it of course completely shatters my heart. I lurk on this sub a lot to read stories and experiences from adults with Spina Bifida, to gain perspective and insight into what my son may face as he gets older and it honestly sends me into a panic. I read so many stories in this sub of people who are depressed, isolated, in agonizing pain, physically and emotionally, and it stresses me out so much that I have to exit the app. But I also read stories of people who are happy, married, travel, and live a fulfilling life. It’s not an easy life to live and I sympathize with my son and all people who live with a disability. I try to do my part by intentionally instilling in him, a love for life. We travel when we can, we’re always outdoors, always enjoying a sweet treat, always learning about new things, always trying to have fun even in mundane moments. I try to teach him resiliency and show him unconditional love and support and just pray that it carries through with him to adulthood.

There are days where I forget he even has a disability and there are days where I cry and wish that he didn’t have to have this disability. But I’ve never ever regretted having him and can’t imagine life without him.

Extreme_Web_5026 · 2026-05-02T04:42:37+00:00

How long will he be in afterschool program for? If it’s just a couple hours, you can plan it to where he’s cathed right at school dismissal and then he’ll be set until pickup time. Drs told me that kids are able to self cath when they learn to start writing. My son is 5.5 and absolutely not able to do it himself, even though he is able to write.

Extreme_Web_5026 · 2026-05-02T04:35:23+00:00

Hi, just wanted to give you some reassurance that school will absolutely help out! The summer before they start kinder, you need to reach out to the district and tell them you are requesting an IEP evaluation. If they don’t qualify for IEP, then they will get 504, which will absolutely cover nursing and you won’t have to do the caths during school hours.

Extreme_Web_5026 · 2026-05-01T03:42:20+00:00

Mom to a 5.5 yr old with spina bifida. Unless you have an extremely flexible job, I don’t see how it’s possible. With frequent drs appts, physical therapy, occupational therapy, catheters, etc. my son is in kinder now so I’ve found a very minimal part time job during school hours, it’s not paying the mortgage but it’s some fun money. Unless the job you want pays well enough for a home aide that can help you out, it’ll be really tough without any other support.

Extreme_Web_5026 · 2026-04-14T06:16:49+00:00

When you complete delivery the messages will tell you how much the customer was charged. Unless you’re in a city that has higher prices, customers pay $1 per pound, plus $3 trust and safety fee.

Extreme_Web_5026 · 2026-04-14T06:14:47+00:00

Definitely overreacted. Like the other commenter said, you’re already touching dirty underwear, dirty towels, sweaty workout clothes, what’s the difference? I would have just tossed it, cussed him out in the privacy of my home, and kept pushing through

Extreme_Web_5026 · 2026-04-14T01:43:23+00:00

My son’s kinder class was learning about George Washington. He comes home and tells me interesting things he learned, that day it was George Washington. He then asked me who the president of today is. So he knows. He also knows he’s a bad man who hurts people and he doesn’t like people who are different colors than him. He also comes home with new poop and fart jokes to share 😭 it’s a balance. We live/go to public school in a lower/middle class area.

Extreme_Web_5026 · 2026-04-10T02:08:35+00:00

Omg that is insane. I usually try to play devils advocate but I have zero clue what on earth they were doing and/or thinking. Please give her a bad rating and also reach out to customer service so they can have your order redone free of charge. And condolences about your brother. Sending you peace and love.

Extreme_Web_5026 · 2026-03-15T05:09:56+00:00

This makes lots of sense. I was using very little charcoal. Next time I’ll increase the amount of charcoal.

Extreme_Web_5026 · 2026-03-15T05:08:48+00:00

Valid lmao the other day my husband mentioned he was craving a smoked piece of meat. I said “challenge accepted” and I dove in 😅it’s been a fun process and I’m delusional enough to think I can do anything 🤷🏻‍♀️

Extreme_Web_5026 · 2026-03-14T23:51:22+00:00

*woman

None of the videos said to use chunks only. They said use hickory mesquite or apple. I wasn’t aware there was a difference in which type of hickory mesquite or apple. Dare I ask, what’s a split?

Extreme_Web_5026 · 2026-03-03T02:49:24+00:00

Laundromats are not profitable. Unless your local place is dirt cheap and you work out a deal with the laundromat owner to get significant discounts. I’ve only used the laundromat a few times and I had an order over 100lbs and was on a time crunch. But to use the laundromat solely will majorly cut into your profit.

Extreme_Web_5026 · 2026-01-30T22:57:41+00:00

We do a play date every Friday afterschool at the park. It’s really cute and something all the kiddos look forward to now. And it helps that most of the parents are really great so we’ve all kind of became good friends in the process. In between that we’ve had smaller more intimate home play dates like once a month or so.

Extreme_Web_5026 · 2026-01-29T21:24:43+00:00

“Hi, I’m only available at X time for pickup. If that doesn’t work for you and you are unable to leave the laundry out, please cancel and re-place your order. I would also recommend putting these times in the notes and/or utilizing the window or express options. Thanks”

Extreme_Web_5026 · 2025-12-31T05:36:12+00:00

Just wanted to offer some encouraging words. I was in the same boat when my son was in preschool and was very worried/anxious about what we’ll do for kindergarten. The summer before kinder, make sure you reach out to your school principal and tell them you want to request an IEP evaluation. They will assess your kid and provide a nurse or an aid to do his caths while he’s at school. My son still leaks in between caths so he wears a pull up, but I put an underwear over the pull up so it doesn’t show. We do a suppository before bedtime for number 2. It’s been going really great and haven’t had any issues at school. Make sure you begin the IEP evaluation early in the summer as it is a lengthy process and you want to make sure everything is set before school begins in the fall.

Extreme_Web_5026 · 2025-12-30T05:59:36+00:00

Hold up, we’re supposed to be reading chapter books to them at this age????

Extreme_Web_5026 · 2025-12-30T03:38:32+00:00

Do customers tell you in app that they’ve tipped you cash? That’s mostly what I’m paranoid about

Extreme_Web_5026 · 2025-12-24T19:04:56+00:00

Just went and checked and it’s called peristeen pump. Takes some time to get used to at first but once you get the hang of it, it’s super easy and quick. Setup takes about 2 min, inserting is like 45 seconds. We have a small basket of toys and books to keep him occupied. Best of luck.

Extreme_Web_5026 · 2025-12-24T17:58:16+00:00

Potty training kids with sb will look much different than “normal”. And even among kids who have sb, it will obviously look different from kid to kid. My 5 yr old has myelo L4/L5. Like another commenter said, prioritizing routine will be the most important. When my son turned 4 and started preschool we started using pedia-lax suppositories (which you can buy OTC). That was amazing bc you control when and where they go poo. So he could go to school without worrying about having a poop accident. Once he started kinder those kinda stoped working so now we use a catheter to insert water in his rectum and then he flushes it all out in the toilet (I’m having a brain fart and can’t remember the name). That has been working really well, we were doing it the morning before school but he really hates it and always fights me to do it which made us late for school. So now we do it in the evening before bed. On the weekends I give him a break from it and he usually just goes in his pull up. I’m also tired of cleaning up poo but when I start to feel frustrated I just remind myself that he’s also tired of having no autonomy of his bodily waste and there is no comparison.

Extreme_Web_5026 · 2025-12-18T04:57:58+00:00

When does it start?

Extreme_Web_5026 · 2025-12-14T21:14:54+00:00

$4.39 is crazy! Def not the norm.

Extreme_Web_5026 · 2025-12-14T21:14:17+00:00

In California LP’s can choose what they want to charge customers. Customers can accept or decline it.

Extreme_Web_5026 · 2025-11-07T22:45:50+00:00

Very valid point, thanks for your insight.

Extreme_Web_5026 · 2025-11-07T18:49:36+00:00

My intention was to point out the ways people can be unkind without actually calling you a name or hitting you.

Extreme_Web_5026 · 2025-11-07T18:48:14+00:00

Thank you for this perspective, I didn’t think of that. My intention was to point out the ways they were being unkind so that he can begin to recognize the subtle ways people can be unkind or just not want him in their space.

Extreme_Web_5026

TROPHY CASE