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Not even close to coping

(11 Posts)
WhoKnew Fri 06-Mar-20 13:18:41

DSD had DGS 12 weeks ago and whilst I adore him, me & dh are really struggling - with pretty much everything.

DSD's mom kicked off in hosp whilst she was in labour - got banned.

dsd suffered prolonged labour and complications - GS born HIE grade 2 by ECS, transferred to anoth hospital for cooling.

dsd suffered more complications and had to go back for more surgery and hosp she had him.

Transferred her ourselves to be with DGS next day to hosp 1.5 hours away from home town - spent 3 weeks there. During time there he was having up to 70 seizures some nights - his Nanny (DSD's Mom) - chose not to go and see him. Transfer back to more local hosp.

DSS (16) moved in with us as moms drinking became out of control.

DGS has frequent seizures and is back and forth from hospital every couple of days - DSD is struggling - he is NG fed and has significant brain damage and also now diagnosed with epilepsy.

Since that little one came into this world he has made his presence known and we absolutely adore every inch of him. We know that he has very complex issues and his care needs are great and we are trying to support and are there most days.

We both work F/T and are called out at least once a week, so far work have been very good but not sure how long this will last.

dSd's mom is being vile to both dsd and dss, threatening to take dsd to court to have DGS 1 minute and threatening to beat up dsd and her partner the next. Telling everyone DSD caused DGS brain damage - story and reason changes every time. She still has not seen him and even though this is all going on I still in part feel sorry for her because I know she must be hurting.

Now DSS is refusing to have any contact with her also.

Me and dh are just so knackered, we don't know where to go or which way to turn. It is financially and emotionally breaking us and we are so scared for little one and the pressure on DSD and her partner also. we literally do not get 5 minutes to ourselves as dSS is with us constantly and I think he needs counselling because he is very clingy and follows us around the house until bedtime.

This is not what we thought grand parenting was going to be, please tell me it gets better

Starlady Fri 06-Mar-20 14:35:37

OMG, I am so sorry about all you've been going through! Sending prayers for little DGS! And for you, DH, DSD, and the rest of your family.

Bless you and DH for being there for DSD and her child! I get that this isn't what you expected, but, IMO, you are heroes in their lives (DSS', too). So please take some comfort in that. I am confident that things will get better as time moves on and things fall more into place.

So sorry about the problems with DSD's mum on top of it all! Very kind of you to feel for her. But, IMO, DSD needs a restraining order against her. Maybe DSS, also. Unfortunate but true, I think.. But of course, they may not want that.

IMO, DSS' clingy behavior is a reaction to all this stress and havoc. I agree w/ you that he needs counseling to help him get through this. What does DH say?

Meanwhile, congratulations on your DGS, despite the difficulties! And please continue to reach out to us!

WhoKnew Fri 06-Mar-20 15:29:33

Thanks Starlady but I certainly do not feel like a hero.

DH is very angry with their mom for what she is putting them through and is convinced she was jealous of DSD when she first got pregnant - as soon as she did mom was quite nasty towards her causing her stress etc but tbh, i just put it down to the stress of finding out that her daughter was having a baby at a young age, although looking back at how she was about scans etc - not so sure now. He is worried about DSS and we have both tried to talk to him about counselling but he is refusing at the moment. we are trying to split out our time so if dSd is at hospital with little one and it is not too serious then one of us tries to be at home with him so that it doesn't become his norm as well IYSWIM as I think he has had to see far too much of the inside of hospitals as well as everything else.

DSD has said if her mom contacts again then she is reporting her (mom been arrested 3 times in last 12 months due to drunken domestic incidences with partner and disturbances of peace) which is why she moved out of moms over 12 months ago anyway.

I hate feeling like I am moaning as I would rather this than anything happen to our DGS and I have been in my DSC lives for 15 years now so we are lucky we are close and have a really good bond anyway and I really glad DSS is with us now as I was worried about him being there before this.

thanks for the response - I guess some days I just feel like i am drowning

BlueBelle Fri 06-Mar-20 15:47:29

I m really sorry you’re having such a tough time and the little baby has such complex needs I m sure it will get better when everyone can settle into their roles and his needs are hopefully stabilised Fingers crossed it stabilises itself and the drinking mother stays out of things
I can’t answer more fully because I find the shorthand initials just too complex to understand fully .. HIEGrade 2 by. ECS is not anything I know about I had to look the step daughter business up too so sorry and Good luck for a calmer future

WhoKnew Fri 06-Mar-20 15:55:37

Sorry bluebell, I think I forget sometimes not everyone is spending most of their times at hospital blush HIE is hypoxic ischemic encephalopathy, there are 3 grades and his was 2 and he was born by emergency c-section. Thank you though for taking the time to still comment and send support.

BlueBelle Fri 06-Mar-20 16:16:17

Poor little chap what is his long term prognosis ? It sounds as if it could be a difficult life full stop
Don’t give up on the stepson i m sure he’s very damaged by the drinking mother and 16 is such a delicate time of life and he obviously needs you as well Can he help? can he be given a role so he feels included and needed
Has your step daughter recovered from all her surgery after the birth? And is her partner supportive?
Things seem terrible now but I m sure it will settle better when you can get into some kind of routine Are they any more relatives (besides the awful mum) who could take turns in support

M0nica Sat 07-Mar-20 07:59:16

What a difficult time for all of you, but especially you. In situations like this, it is always the mother (or step mother), who is expected to be everybody's rock.

I deduce that you do not live in the UK but in your jurisdiction is it possible to take out a injunction stopping your SD's mother contacting her daughter and grandchild because of the stress and strain she is causing both mother, and through her the baby? In the UK if she disregarded such an injubction she could be arrested.

Anyone in your situation would be overwhelmed, but, hopefully, gradually, things will change, the baby will settle and a proper assessment of his problems will be possible.

In the meanwhile whenever things seem to get too much come on here and vent and we will do all we can to support you.

WhoKnew Sat 07-Mar-20 11:24:09

Too early to tell long term prognosis. Advised to expect Cerebral Palsey and it to affect both arms and legs but in reality we have to wait for milestones, that's tricky because his seizure meds (on 4 at the mo) make him more sedated and will delay some development anyway.

I am in UK, DSD will report mom if she contacts her aggressively again. Tbf she has blocked her from everything but mom now rings from witheld number, she wouldnt answer but complex care team also phone in same way. She is going to change number this weekend so that may help.

Yes maybe its all just too early and bit raw, hopefully as more help and diagnosis come through it will settle. Her partner is really good but he is only 21 and struggling with it all aswell.

Only other help really would be his mom. DSD doesnt really have friendship group and seems to only really trust me and her dad to help. I think she probably has trauma from birth and everything that has followed and I am trying to convince her that counselling may help but I think its all just too much for her and think she worries that if she admits to anyone else she is struggling then they will think she is a bad mom, made worse by hormones and her own mom telling her she is. I do keep reassuring her that she is doing brilliant though.

Thanks all

Starlady Thu 12-Mar-20 06:45:48

ONG, I'm so sorry you feel like you're drowning, but I totally understand that. I hope it helps to talk w/ us.

If DSD won't go for counseling, would she be willing to join a group for mums of special needs kids? If not in person, then perhaps online? There she could get support just like you're getting here.

Speaking of counseling, do you have the time and inclination to get some for yourself, to, perhaps, help you cope? IMO, it's good that you're reaching out to us, but one-on-one counseling may be helpful, too. Hugs!

crazyH Wed 03-Jun-20 17:29:17

WhoKnew flowers

ElaineI Wed 03-Jun-20 21:43:33

That sounds horrendous for all the family Who Knew. I'm so sorry for all of you. I would have thought your DSD could get a restraint order on her Mum but doesn't help with little one's condition. I have no experience of this but a friend's daughter had similar problems with her baby - no problems with family though. It has been very difficult for them and the child (now over 3) still has frequent admissions and will never be able to walk, talk etc. It is genetic. He has care at a special needs nursery now and my friend and her DH have looked after him (involved training in medical procedures) when her DD went back to work. They all love him to bits and he has a baby sibling now. It is grand parenting with a difference really and I think it becomes less hectic. But certainly without the extra problems of the difficult mother. You are doing well by your DSS and hope he settles a bit. How old is he? Keep your chin up x flowers