tucked in thumb 10mths old

[Emma85W]

I’m sorry it makes you sad to know I’m struggling, and for anything this might have dragged back up for you again, but I can’t tell you how grateful I am for you replying; you’ve really helped (and as you know, for people like us, that can be really difficult to achieve).

And you’re also equally right that I will just find something else to worry about, much like the Infantile Spasms; I guess it just snowballed from there.

I’m so sorry you went through that with your daughter; is it the one daughter who went through that and the thumb tucking or have you had the (dis)pleasure of having to worry about them both?
West is absolutely terrifying and if I’d experienced what you’d described, I would have also assumed West was at play and have been going out of my mind with worry.

Your view on the neuro’s thoughts (and my internal dialogue) are spot on!
I also keep thinking, she was the one who raised the concerns in the first place about a potential handedness and if she’s not worried a few months later watching his other videos, then I shouldn’t be either. But it’s easy to say that to yourself as opposed to believe it.

When I had my CBT, the therapist said to me I’m a very detail oriented person who analyses a lot and needs to figure out outcomes almost exponentially; correct, and actually that aligns it’s self to my line of work really well so I kind of get paid to think like that.
But then the therapist was talking about just being in the present, and going with the moment, not letting fear of something that hasn’t happened yet take control...and I thought well that’s all well and good but a) you’ve just described my personality so do you really think that’s possible and b) if fears were rational, nobody would have them!!
So it didn’t really work for me.
Maybe you’re quite detailed/analytical too?

That poor lady with the boy with hemi. It’s wonderful that she could help you though, and I’m pleased it’s only mild for him although obviously no baby should ever have to go through that.

Don’t apologise for the assumptions; once again you’re spot on and it sounds like our thought processes are exactly the same. I also couldn’t agree more that my anxiety has never been this intense until I’d had my boy. I don’t even think I had it before; maybe off and on in different phases but not like now. Now it feels like I’m standing on one side of a two way mirror and everyone else is on the other side going “oh isn’t he perfect” and I’m banging on the glass screaming “no!! Why can’t you see!! He needs help!”
And I realise that sounds a bit dramatic but at my peaks, that’s how I feel.

I think I need to get and hold on to what you said about just because I’m an anxious person, doesn’t make it any more likely that there’s anything wrong with him. And equally, nothing has amounted to anything (yet). And I’m sure it won’t...but I’m having a good day.

I also torture myself the way you torture yourself too about guilt.
I can only tell you that I see a wonderful Mum who adores her girls and has dedicated her life to their happiness and I’m sure they know that. But equally I know you can’t see that ‘clearly’ enough?? This is me assuming now!!
And just because that’s how I feel when people tell me I’m wondering for paying so much attention to my son!

 

[_Meep_]

It was my first daughter with the CP and my second with the infantile spasms! I have worried about them both at times, but as a general rule I get far more worried by my first. Not entirely sure why - my brain would like me to believe it is because I have a strong 'mother's instinct' and there is something wrong with her that I just haven't discovered yet, but in truth I think it is just because she is my first child. I also believe I was somewhat traumatised by the feeding problems we had. She wouldn't go near me from about 10 weeks/became hysterical at the sight of a boob, and as I was desperate to continue breastfeeding her I took to doing it when she was asleep for several months until she finally stopped having strikes. Sounds like a silly thing probably to get so het up about, but as an anxious person already, it was a truly horrible, dark time for me and left a lasting impression.

Being in the present ...!? If people with anxiety were able to do that then nobody would have anxiety! What unhelpful advice. :/

Before I had my children, I was a proofreader (and still do it on the side now when I can). So yeah, my attention to detail is pretty good. This is something of a curse when it comes to children and their bodies and all the weird things they do, as I notice everything, even though I don't want to!

I totally get the mirror thing. My children are very cute and beautiful (I think so anyway) and often when we are out, people will smile and coo and comment on them, which of course I enjoy ... but if I am having an 'episode' it can make me feel worse, like a stab in the back, because I know 'the truth' and it's horrible 'knowledge' to have. How messed up!

I find that when I've had an obsession or an episode of anxiety with regard to the girls' health, it takes me a few weeks to months after the anxiety has been quelled to stop thinking about it and move on fully (often to the next worry that presents itself!). It's like I'm so stuck in my thought pattern that it remains a habit even when I haven't got anything to worry about.

How are you doing with it now?

 

[Emma85W]

It was my first daughter with the CP and my second with the infantile spasms! I have worried about them both at times, but as a general rule I get far more worried by my first. Not entirely sure why - my brain would like me to believe it is because I have a strong 'mother's instinct' and there is something wrong with her that I just haven't discovered yet, but in truth I think it is just because she is my first child. I also believe I was somewhat traumatised by the feeding problems we had. She wouldn't go near me from about 10 weeks/became hysterical at the sight of a boob, and as I was desperate to continue breastfeeding her I took to doing it when she was asleep for several months until she finally stopped having strikes. Sounds like a silly thing probably to get so het up about, but as an anxious person already, it was a truly horrible, dark time for me and left a lasting impression.

Being in the present ...!? If people with anxiety were able to do that then nobody would have anxiety! What unhelpful advice. :/

Before I had my children, I was a proofreader (and still do it on the side now when I can). So yeah, my attention to detail is pretty good. This is something of a curse when it comes to children and their bodies and all the weird things they do, as I notice everything, even though I don't want to!

I totally get the mirror thing. My children are very cute and beautiful (I think so anyway) and often when we are out, people will smile and coo and comment on them, which of course I enjoy ... but if I am having an 'episode' it can make me feel worse, like a stab in the back, because I know 'the truth' and it's horrible 'knowledge' to have. How messed up!

I find that when I've had an obsession or an episode of anxiety with regard to the girls' health, it takes me a few weeks to months after the anxiety has been quelled to stop thinking about it and move on fully (often to the next worry that presents itself!). It's like I'm so stuck in my thought pattern that it remains a habit even when I haven't got anything to worry about.

How are you doing with it now?

I know exactly what you mean about when people comment and internally you’re screaming.

Honestly, I’m not doing too great. It’s the weird flappy thing even though over the past few days, he’s taken it to include his thumb on occasion which is great.
I just can’t get it out my head that there’s something wrong with him.
He rolled yesterday (hasn’t done it in ages) but rather than be happy I just keep thinking about the things he’s not doing yet and feeling like there’s obviously something incredibly wrong.
I’ve had people give me anecdotes about their babies being late to do stuff etc and I know it’s entirely possible that he’s just not bothered about gross motor as has always hated being on his tummy because of early silent reflux, but logic goes out of the window when we’re scared doesn’t it?

I’m so sorry you’ve had individual worries about both of your girls (who are both amazing and so cute by the way!) I can honestly see this being me too and I don’t think there’s a way to stop it.

How are you doing today?

 

[_Meep_]

Can you upload the video of him doing it to YouTube? I'd be interested to see exactly what he is doing. Not that I'd be able to offer any insight into why he does it, but it might be that one of mine did something similar ...

What is he not doing that you feel he should be by now? If he's a bum-shuffler, it's quite likely he won't ever bother with crawling and will go straight to walking ...

Logic completely non existent with anxiety I am afraid! I always looked at the stuff mine weren't doing too rather than all the stuff they were amazing at.

Chances are in probably 3-6 months or so you won't be worried about any of this stuff anymore. But I know that doesn't make it any better when you're living in the moment with it. It's so hard, so shit, and I feel so bad for you as I remember how desperate I was in those early days.

I'm alright, thanks. I'm used to the anxiety now and can rationalise a bit better - it still sucks but I manage to live better alongside it these days rather than being totally sucked in.

I wish there was something I could do to help!

 

[Emma85W]

Hey - yeah absolutely I could do that. Do you know if I can do it privately so it’s not a public YouTube or maybe share an iCloud link with you or something?

And you’re absolutely right about the bum shuffling; I actually have an NHS leaflet that describes Finn (DS) to a T and says bum shufflers find it hard to pull up, sit themselves up and are later to do this and later to walk. So I completely know that’s all aligned to him. Then the anxiety kicks in.

He is more and more active in his floor time though which I’m taking as a massive developmental plus and he’s recognising words now which is amazing too, so I’m trying to focus on what he’s achieving rather than state at his hands etc.

I’m so thankful for you and your support but I’m only sorry that you have been through the same. You’re absolutely right though, there are days I’ve sobbed my heart out in despair, absolutely convinced he had a life limiting condition and felt just sheer desperation.

You honestly are helping more than you know - imagine how you’d feel if you were back where I was and you had a you. So thank you so, so much.

I’m pleased you can rationalise it a bit better; it sounds like a huge journey you’ve been on but you’ve done an incredible job.

 

[_Meep_]

Sorry it's taking me ages to reply - I've been so busy with homeschool but it's half term now!

You can upload private videos to YouTube and then you just share the link with whoever it is you want to watch it. I don't have an iPhone, so does that mean I can't use iCloud? Or can I? Happy either way ... there's a private messaging function on here.

I was lucky in that my daughter crawled, pulled up and walked at the 'normal' time (not that it really helped, as her crawling style was a little bit odd, with the right leg sort of swinging outwards at the hip, adding to my fear about right sided weakness - and then she walked with her tucked in thumb!). I know I would have had anxiety about the bum-shuffling too though as once I'd got an idea into my head, e.g. 'my daughter has cerebral palsy', I'd then attribute everything to that - even the smallest things. I'd find a reason to see them as symptoms of her 'condition' even with solid evidence staring me in the face. So even though logically I'd have known as a bum-shuffler (had she been one) she would likely be a bit later to stand and walk, it wouldn't have made a blind bit of difference to me!

I think for me it comes from something really traumatic that happened to me when I was a teenager - a series of events that I would NEVER have expected or imagined could possibly happen to me, but which did, and it kind of destroyed my faith in - well - everything. Because when you think 'Oh, that will never happen to me' and then it does, you suddenly realise that ANYTHING can happen.

So while rational, normal people don't even think about things like muscular dystrophy or scoliosis or any number of horrible degenerative conditions, they're on my mind all the time as potential possibilities. If it can happen in the world, then it can happen to me, if that makes sense - the worst thing possible happened to me before, so now I know I am not exempt and it's terrifying.

Sorry that was a bit of a long backstory!
Your son does sound like he is making good progress and that's what they look for. He hasn't stalled. He isn't massively behind. He is doing well!!

There was a time I wouldn't talk about my anxiety at all - it wasn't until I had my first baby that it all came out and I don't hide it from anyone now. Talking to certain people in my life really helps me so if this helps you, by all means continue.

I hope you are feeling ok today and will be able to find a way to get that video to me!

 

[Emma85W]

Hey!

I’ve just written an epically long reply to you in a private message that it won’t let me send because it thinks it’s ‘spam’ I guess because of the links?

I don’t suppose I could try and PM you on Mumsnet or something if you use that?

If not, I’ll happily post my email address on the thread so you could drop me a line and I’ll reply there, if you’re comfortable with that?

 

[_Meep_]

Yes, I'm comfortable with that. How annoying it said your message was spam!!