do you ever feel guilty about the past

[2shoes]

cos I do. I left dd in hospital when she was born. and didn't go back until she was 2 days old. (she was out of it doped up and would be touched)
then when she had her first big fit I left the room when they took her catheter out.(ok I was sick covered)
but for some reason I still feel guilt.
anyone else?

[maggiems]

Anniebear yours arent silly. I feel guilty for wanting my Dt's to be born before 30th June (cut off date in NI) so that they could go to school early like me. I didnt have the wit to realise at the time that Dh struggled in primary school because he was also a June birthday. I didnt have the option in the end as I was brought in early. However I had made the choice of having them before 30th June. For some reason I still feel guilty, knowing that had i had a choice I would have made the wrong one as Dt2 is really not ready for P3

[BigBeeristheBigBeer]

I bet your DD is fab, Sidge

Apologies to 2shoes also

NMC, how is your DD doing now she's home?

[Sidge]

Hello, nmc - they started doing genetic testing after a week or so, as her clinical presentation didn't fit well with her birth experience. She was profoundly hypotonic, so much so they thought she had a muscular dystrophy of some sort. Muscle biopsies were normal so they got every specialist under the sun to see her. A brilliant neurologist saw her, saw she had dysmorphic features and suggested testing for PWS and bingo. We had the bloods taken at 2 weeks old and got the results at 4 weeks.

She also had seizures at birth and has had intermittent nocturnal seizures since then, which seems to be not uncommon in many genetic disorders. Can you ask for a referral to genetics? If the paeds won't do it ask your GP.

PS Sorry 2shoes for the hijack of your post.

[needmorecoffee]

How did you know she had Prader-willi syndrome? My dd had a hypoxic event at birth (they say) which has left her with severe CP. But when she developed infantile spasms I asked for more tests to make sure there was nothing genetic going on too (that would cause IS. It is rare. Or would have made her more vunerable to hypoxia) but they refused, saying of course its just CP. Now she started developing lennox-gastaut type epilepsy(again rare and often assoc with genetic disorders) but again they say its all down to her CP.
They think I'm a nag of course but I want to know why some kids can go 20 mins with oxygen and be fine, and some, like dd, a few minutes yet have very severe CP plus IS and epilepsy.

[Sidge]

No, she has (are you ready for this? LOL):

Probable birth hypoxia causing Hypoxic Ischaemic Encephalopathy. (brain damage to you and me!)

Prader-Willi Syndrome (a genetic disorder, undiagnosed before birth)

She had 2 holes in her heart (now repaired)

And loads of associated stuff like GDD, hypotonia, severe speech delay, feeding problems etc.

But she is lush

[BigBeeristheBigBeer]

I got my hopsital notes and they said there was a "retroplacental clot".

Does your DD have CP, Sidge?

[Sidge]

I got checked out, BigBeer, and everything seemed fine. I guess sometimes these things just happen, you're right. If I hadn't been cleaning bloody cobwebs up (MIL was coming to look after DD1 over half term for us, I thought I'd better clean up!) I wonder if I would still have had the abruption.

Sigh, I probably would, but I think we never stop beating ourselves up do we?

As the neonatal consultant said, sometimes shit just happens!

[BigBeeristheBigBeer]

I had a clot behind the placenta too.

I wish I'd gone and got checked out after my fall. But I assumed the baby was well protected by amniotic fluid and couldn't be any worse off than me.

I told my consultant that it was all my fault it happened and he said people always say that and they're never right.

I always assume that everyone else is blameless but I am totally responsible for DD2's condition.

But EVERYONE nests and decorates and balances a bit precariously on a chair or ladder or windowsill in late pregnancy. Seriously, if your fall caused the abruption then it was just really bad luck, nothing else.

I fell over on DD1's stupid roundabout toy.

[Sidge]

BigBeer - I fell at 34 weeks (a Thursday) and had DD2 on the Tuesday (34+5) by crash section. They said I had a clot behind my placenta, which may have been a contributory factor to the abruption.

I am convinced my fall caused the clot (hence the guilt - I was stupidly standing on a low sill to clean the cobwebs away under the curtian pelmet; bloody nesting!!) but the obstetrician said it may have been coincidental. I think she said that just to make me feel better though.

[2shoes]

needmorecoffee I know what you mean about C.E my freind has been abroad to do it and sent her dd to a C.E school. but tbh she hasn't started walking or sitting up. It is VERY hard work and can overshadow other needs.
so don't feel guilty about not doing that please.

[BigBeeristheBigBeer]

"And I also think to myself that however much I might be failing my kids sometimes, if I give in to despairing feelings then surely I'm failing them even more."

Of course this leaves me wide open to feeling yet more guilt if I can't manage it

[BigBeeristheBigBeer]

NMC, when I feel really guilty about the past my head just starts spinning.

I read a book on Guilt recently (!) and it said that feeling guilty was pointless, it just made any situation even worse than it was already. Instead people should feel "constructive regret". The book wasn't too useful, IMO, but that was the message.

I try and find positives in the situation when things get bad. The biggy being that for people posting about their DC on SN, however bad things are, their kids are alive and in the world.

And I also think to myself that however much I might be failing my kids sometimes, if I give in to despairing feelings then surely I'm failing them even more.

I want them to be happy, so I'm trying to be a happy mummy.

[BigBeeristheBigBeer]

Sidge, how many weeks were you when you had the abruption?

I had a bad fall at 36 weeks and an abruption at 41 weeks. Have always wondered if my fall caused it.

[needmorecoffee]

What do people do when the guilt gets too much? When your heart hurts inside?
I really struggle during those times and feel like its all too much to bear.

[Sidge]

Oh God I feel guilty. Less than I did in DD2s first year, but still guilty.

Guilty that it was my duff egg that caused her genetic disorder. (mad I know)

Guilty that I fell off a (low) window sill at 34 weeks pregnant, which probably caused my placental abruption.

Guilty that I used to go and sit in another room upstairs for 10 minutes, leaving her immobile on the floor because I just needed 10 minutes away from her

Guilty that I let her watch so much TV when I was pregnant with DD3 as I had such bad morning sickness (more like all day and all night sickness!) that all I could do was lay on the sofa with a bucket.

I guess the guilt never ends, I am sure I will always find something to feel guilty about.

[Cappuccino]

oh darling you are not failing

she's only young and things may well change

it's incredibly hard as it is having an SN child and you have MS as well?

you should be really proud of yourself for just keeping everyone fed and safe; you can't feel guilty. Surely as long as you keep the lines of communication open and be there for her there's still hope that things will improve

[needmorecoffee]

A lady I know with a child with CP spent months in Russia doing conductive education type things and evertime I see her she has her ds held in a sitting position or doing the exercises as we chat, Its rather distracting. But then I feel guilty that I'm not doing it too.
Having said that, her ds is forced to do this stuff 12 hours a day and to be honest apart from some strength in head control I've seen no marked improvment. He's notquite as physically impaired as my dd but he still can't sit/roll/hold an object. And his twin, who is NT, is pretty much ignored.
Another guilt is that the last 3 years have been all about dd. So many hospital appointments, 4 hours a daytrying to get food into her, 2 hours on meds, endless phone calls plus constantly saying to my other 3 'we can't do x because of dd'. So I gave my eldest lots of freedom and was pleased shewas at friends houses a lot and went on camps and too parties (she's 15). I thought she was having a great time. Turns out she felt rejected in favour of dd2 (but not being a mind reader I thought when she said she was fine and happy that she was) and left home 9 months ago. I was so exhausted and fretting about dd2 that I didn't give dd1 enough attention. I did try and take her shopping and take her to Paris and take her on every camp she wanted but it obviously wasn't enough or she wouldn't have left. The guilt over failing the eldest will never go and the sorrow that she left home at 14 and will never come home and I'll never get that time back breaks my heart in two.

[Cappuccino]

we go to Bobath Centre for physio weeks occasionally

and we get home and go 'gosh, what fantastic exercises! Aren't we psyched! Let's go buy all the equipment and really go for it!"

And then we watch the massive gym ball roll about the house for a few months

[needmorecoffee]

know what you mean about the physio. I feel guilty that we haven't been to Hungary to the Peto Institute, that we haven't made it ti BIBIC yet or the Scotson technique.
But we don't have any money because DH had to give up work to be her carer ( have MS).
so I feel guilty that everyone else is doing these techniques and maybe my daughter would be able to move an arm if we did these things 20 hours a day too.
And most of all I feel guilty that I don't want to hold her 20 hours a day and do the physio type things. I want a break.

[OrangeMoon]

I feel guilty about my dd's birth, i had her at 28 weeks, no-one believed i was in labour even when my waters broke all over the hospital floor, i often feel that if i had shouted, yelled or screamed and demanded to be checked that maybe they could have at least tried to have prevented her birth, would't have stuck me in a cold bath of bubbles after my waters had broke and wouldn't have thrown me onto the bed when her head was ready to come out, then perhaps my dd wouldn't have cp.

[TotalChaos]

I feel the same about DS and speech/social stuff Cappuccino. Do you find there is triumphant self-help literature on the lines of "I spend 20 hours/day doing X/Y/Z with my kids and it worked, they caught up 10 years in 3 months" - ok slight exaggeration but...

[twoisplenty]

I'm so pleased this has been raised. Because I feel very guilty every day, that I didn't do enough for my ds when he was very young. The physio would tell me once per month what exercises to give him, and how to play, and I was in denial and completely overwhelmed (pnd). But no one in my family would help me. So I always feel that I have made him worse.

But I know - what's the point in feeling guilty, it doesn't change anything. But I do.

Someone recently told me that I was a good mum, but I honestly don't believe them.

[Cappuccino]

I feel guilty for not doing physio every minute of every day

[anniebear]

Oh I am glad!

It is always something I think about

Most people stay in ICU 24/7 and we went to Asda!

Then again, you were not allowed to stay overnight anyway

and I supose we had Grace to still look after and food to buy! (maybe not a kettle though lol)

[2shoes]

anniebear i went to primark when they were taking the catheta out.......ok she had been sick all over me. but i could have waited 5 mins