u/probablyadinosaur

For context, our daughter is 19 months and has been in PT and OT for low muscle tone. She's making good progress and will be walking soon, but everything she achieves right now happens through hard work and practice. Her MRI was normal except for slight delayed myelination. We're still waiting on genetic results; I'd want to know those before making any final decision. She's globally delayed, and we really can't know if she'll catch up or have some level of intellectual disability. Which is fine, we're prepared to have her with us for life either way.

She's an easy kid otherwise--happy, eats well, sleeps well, asks for books, sings along to music, etc. Her speech is delayed, but she does have a few words and can play simple games.

She chooses books with babies in them most and gives her doll lots of kisses. Loves playing with her cousins and story-time at the library. She's always looking at other babies in public and curious about them. Very gentle with our cats.

We originally planned to have two, but obviously her complications have us hesitating. We're in an ok place otherwise, but I'm stuck on whether it could possibly be fair to everyone. I think she would enjoy being a big sister, but what if we can't meet the needs of both? What if the new baby also has a disability? What if the younger sibling resents us? What if she catches up just fine and we regret not having another?

My husband wants a second pretty bad but is supportive either way. We're mid-30s, so time is a factor. I'd love another too but would be fine with OAD. We're very happy right now, and I'm scared of losing that equilibrium. I guess I'm curious if anyone has been in a similar situation, or has general input.

My daughter had an MRI recently as a step toward diagnosing her low muscle tone. She’s globally delayed at 19 months but making good progress through PT and OT. She’s sweet, chill, funny, wonderful. We have no idea what the scan will show. Could reveal nothing abnormal, could reveal major damage or structural issues due to genetics. All we know is that something’s wrong.

I’m thinking about it all day, every day, waiting for the results to come in, and then feeling like an idiot for wanting to know. Like, right now it’s Schrodinger’s Cat. Why am I so eager to look in the box?

I’m stuck playing out every scenario. Assuming the worst because maybe that will make the phone call less painful.

To cap it all, my sister in law, who works with special needs kids, today was talking about how she knew our baby had something wrong right away, and was talking to other family about it, but no one said anything to us. And I started spiraling thinking A) why not fucking tell us and B) what else is the family saying behind our backs. Like wtf. Have they all written my baby off already?

It just sucks. I love her so much. I’m not ready for the bad news but the news can’t come fast enough.

My 16 month old daughter is in the process of getting diagnosed for her low muscle tone. We suspect cerebral palsy caused by a traumatic birth, but it could be genetic also.

Part of me is so sad that I’ll never get the “normal” baby experience. When there’s a birth scene in a show or movie, the baby comes out crying and then everyone‘s happy. And every time, I remember that I didn’t get that. My baby didn’t cry for several days after being born. Instead of holding her, I cried alone in my hospital room while my husband sat with her in the NICU, waiting to see if she’d be ok.

But as much as I want that textbook experience, I know I need to accept that we’re likely OAD. We can’t know how much support she’ll need yet. She could catch up on all fronts and live a more or less normal life, or she could need care forever. With that uncertainty, I just can’t be sure that it would be fair to her or a potential sibling.

The funny thing is, I’m a happy only child and was fine with the idea of OAD before we started all the therapies/specialists. Wanted two but knew one would be smarter financially. Somehow, losing the choice made it that much harder.

To keep this from being a bummer post, I will say that my daughter is amazing and we are so so so lucky to have her. When you deal with disability in a child, you go from feeling unlucky to incredibly grateful that it wasn’t worse. After three months of PT, she’s gone from sitting in one spot to crawling all over the place. She’s sweet, funny, mischievous, eats like a champ, sleeps well, loves books and music…I know she will be enough just as she is. Our family feels complete with her.

Sorry for the long post. I just spent the weekend with a long-time special needs parent of two and had some wonderfully honest conversations. Feels like I finally have some clarity to accept things and focus on the present.

This is just a long post to sort out my thoughts, mostly, but would love opinions if you have them.

My (34F) LO is 16 months. I always thought we'd have two, but my daughter's issues since birth have me seriously hesitant.

I told myself not to worry about it at all til she hits 18 months, which is also when we start diagnostic appointments to see what's going on. But here I am haha.

Long story short, we had a very traumatic birth where she lost oxygen and came out not breathing. We've been through the NICU, hip dysplasia braces, vision correction, thumb clasping, and now working on neuro testing + setting her up with little ankle braces. She has mild/moderate low muscle tone--she's just started crawling this week (yay!). It could be a brain injury from birth, autism/hypermobility, or maybe another genetic disorder.

She's in PT and OT once a week plus the various specialist appointments. She babbles, repeats, and says a few words occasionally, but will probably need ST also.

Her PT is convinced she'll eventually walk and run like a normal kid. But she's a little slow on some of her cognitive/social milestones, which is what scares me. For example, she isn't pointing with a finger or stacking blocks. Can't really know if it's due to the muscle tone, autism, or a cognitive disability til we get neuro results.

BUT she's an awesome little friend making progress every day. She sleeps well, eats everything we've tried, plays games, loves books, sings little songs, and travels like a champ. Everything I do for her is worth it a hundred times over. I work part-time from home and our house is set up well for kids.

Anyways, I'd love another, and my husband wants it even more, but I'm scared that it wouldn't be fair to her or the other baby. :/ And part of me is still pretty traumatized and worried...what if the next kid has even bigger issues? Should I just be happy with what we have and focus on her? All the waiting and not-knowing is killing me, but probably the only answer is to wait and see.