In a very dark place

[Wispabarsareback]

Found out today that DD2 has microcephaly. It was in a letter from the geneticist to DD's paediatrician, copied to the GP, who showed it to me. (We hadn't been sent a copy, for some reason.) Am pretty devastated by this, though obviously we need to find out what's caused it and how severely affected she might be.

Since I last posted about DD she has been referred to the community paediatrician for a full development assessment - will be a bit of a wait though. (After I went to the GP and cried, rather feebly.) Her childminder has also enlisted the support of the special needs coordinator employed by the council to work with CMs.

Does anyone have experience of microcephaly? Of course I went straight to google, and all I could see was mental retardation etc. She has a lot of the characteristics of various chromosomal abnormalities, but the geneticist doesn't think that's what's behind the way she is. But I have doubts about this. I'm currently speculating about 1p36 deletion (monosomy deletion) - anyone know anything about this?

Sorry for the self-pity, but I'm having a really hard time. I'm so fearful for the future - fearful about how dependent DD might be, and about having to give up my career to look after her full-time. (Sounds really selfish, I realise - but I've always felt I'm a better mother if I have time away from DCs while I work part-time. Not to mention the economic aspect!)

I feel that I can't do this - can't be the mother of a SN child. I resent her for being so needy, for not being able to do more. Perhaps if she was a happy baby I'd feel better about her, but she's so grumpy and miserable most of the time. And she still vomits all the time - I spend entire days covered in vomit and snot (hers) and tears (mine). I've started to wish she wasn't here and I didn't have to deal with her. I want my old life back. I want to be able to give proper attention to DD1. I want to not be fighting with DH about how we manage DD2 (he thinks that pushing for assessments etc is a vote of no-confidence in her, and we should just accept her the way she is. But he spends much less time with her than I do.)

I know it should be about her, not about me - but I'm failing to put her needs before my own. Doesn't bode well for the future. I don't know what to do. I'm in despair.

so that you found out this way,its inexplicable that they did not tell you themselves.

i dont have any experience of microcephaly,but am so sorry for the distress the "professionals" have caused you.

So sorry, I can't offer advice but bumping for you

I think exhaustion may be playing a part? Nobody can think a full thought when all this information must be whizzing round your head.

I don' t know if grandparents are near by, but a break for as long as you can get out of them could be the first thing you need to do, just to come to terms with all of this and once you feel stronger start to make a plan of action for you, your daughter and the rest of the family.

I think it's possible to get little bits of your life back, but you may have to fight your corner and get the space and rest you deserve.

All parents of disabled children go through these black patches. Other times will come, times when you are strong enough to feel joy and delight in the things she can do, and thankfulness when you realise that your dd has been given the very best mother she could have. But the time around diagnosis is rarely a time when people can feel this. You will be upset- why shouldn't you be? And your dh's seeming lack of interest in pushing for assessment is just his way of finding it difficult to cope. He too wants his old life back.

I have no experience of microcephaly- just lots of sympathy.

I agree with Cory, dark patches are very common with fmillies with a child with sn.

Don't know much abut microcephaly sorry (NMC might be along soon? CAT her- needmorecoffee) but I can emptahise with the bit about your career and it doesn't make you a bad person, just normal. DS3 is about to transfer to SN unit which means I can't go to do the PGCE I have spent the past 4 years slogging towards, and we might end up on an incredibly low income. I resent that. I resent the illness (2 ds's with autistic disorders) and the effect it has had on our li ves. Tis is in no way the same as holding a grudge against my ds's, who I love early and I think is normal and even healthy. it prompts us to fight the unfair restrictions placed upon us.

How old is your DD?

im so sorry your feeling this way its always so hard when first finding out your child will face difficulties but there is alot of support out there for you and your child

i also wished my ds didnt have asd and wanted a normal boy etc now i have knowledge and help and people to talk to i dont feel that and every day also that they reach even the smallest challange and milestone makes me so proud

its hard when you see no progress and feels there is no way forward but there is and there is alot of help out there for you start asking alot of questions and see what support is available but for now take time to deal witht his and try not to feel guilty about how your feeling

we were all here on=ce saying thee same thing big hugs to you and dd xxxxxx

thought this may be of interest to you xx

i know its usa but the forums may be of use

www.microcephaly.co.uk/

microcephaly means 'small head'.
It can be linked with mental retardation but that depends on what is causing the microcephaly. DD has a small ehad and the neuro said she was microcephalic but her intelliegnce is normal. Kids with cerebral palsy often have small heads.

I think we've all been in this dark place and we all dip in and out. I know I do. And it annoys me when dh say 'well, there's nothing you can do so stop worrying'

Nothing I can say can change how you feel but it does pass and we've all been there. I know you are worried about your dd's development but statistcs aren't everything and what you put in is important too, not a label or a condition. It doesn't define the child.

I wish I had a normal life too but I'd rather dd was here than wasn't. But its hard >

(came over all netmums there...)

Hi Wispabrsareback.
My DS is now 3.10 years old, he has a brain atrophy which has caused delays in all areas.
I don't know how old your DD is, but believe me, I have gone through so many ups and downs I have lots count of the numbers of chocolate bars I've eaten to make me feel better.

It was extremely hard to teach DS anything, I struggled and struggled and just like you would have days when I just felt angry and thought I couldn't cope anymore.

But, in the end, this is your child and she needs you to be strong for her. You are her best advocate. You will have to fight for her.

IN my DS's case, all the work we did with him and the stimulation has worked BIG TIME. He is amazing. And I'm not just staying this, I truly believe it. It hasn't been easy and I know we have tough times ahead of us, but when you see that your child is reaching that much wanted milestone you will feel ever so proud of her.

Regarding your DH, PLEASE PLEASE don't let him put you off getting all the help your DD needs. "just accept her the way she is" sounds like giving up on her to me. Getting help is not about NOT accepting her, it is about helping her achieve her potential, and she will not get there without professional help.

Good luck.

I hope you've got the general gist so far in that we all feel like this from time to time (for me, I can be up and down numerous times throughout the day, some days).

My DS has a very small head too. Nobody has said microcephally yet, but I got in a complete flap about it a couple of months ago and was settled down by other Mums on here.
God, I know this sounds patronising, but please try not to google ( I am now converted so can preach). If I want to know something, or don't understand something - I ask one here (some people I'm sure are heartily sick of me ). It gives you a real/human aspect, not some unemotional matter-of-fact info, which are sometimes quite far removed from the reality of it.

Pushing for assessments is absolutely the right thing to do. Its not about lack of acceptance, it's about understanding DD and her problems and identifying where she needs help.

I feel for you, its been very difficult for you lately, but please know you are not alone. When I have a down day (or down hour) I worry about the future too, but I try to tell myself (easier said than done) that I will worry about it when it gets here and just try to take 1 day at a time. Come on here for a regular vent, just writing your thoughts down can help make sense of things, and no-one here will judge you.

Everything is very new and raw at the moment and it takes time to take everything on board and let it all sink in. But, once it has and you have your dev assessments and therapy put in place and (in my case) other sn mums going through their own troubles it gets better. You come to terms with it and you start to do the therapy yourself with the therapists guiding you, you feel like you have support and it keeps you going.

Big hugs, this is a painful time for you.
xx

no pearls of wisdom to add, but I'm so sorry you feel so low, and hope things seem better for you very soon. It is an awful lot to take in, and must have been a huge shock. Be gentle on yourselves for a while.

I am so sorry. It is very hard when you first enter the SN world. I think I was depressed for over a year after we had ds dx with Aspergers. Please be kind to yourself. Take any help that's offered. Get breaks. It is very, very normal for dads (and grandparents) to be in denial. It is because they love them and feel fiercely protective and heartbroken. But yes, it makes things harder for you, as mothers have to be hard, and fierce and protective but realistic too, and that can put you in the position of bursting other people's bubbles and they can resent you and be angry with you because of it, and that's a horrible position to be in. But you are right to do what you are doing, but try not to google and try not to be too pessimistic. she's still your little girl.

Nothing too much to add as everyone has already offered great advice. My ds has microcephaly, and I spent ages worrying about it when he was tiny. I still do some days, and have been where you are many many times.

I've been to google as well, but we're no further to knowing exactly what he has. DS has now had his bloods done for the first stages of genetic testing... but I suspect we will be waiting a while for those results.

I'm very sorry that you are feeling down about it all at the moment. Try to take some time out on your own to at least gather your thoughts. What age is your dd? Do you have anyone who could look after her for a little while?

her needs are linked to yours. you may well be one of those mums who is a better mum for working and giving that up will be tough, but you may not need to.

you are not being selfish, just showing how much you love her

and those worries over your child can make the world before it all happened a very rosy place that you want to get back to

I did.. For a while I daydreamed of the long bus journeys I used to take from Oxford to Westminster to have long boring meetings at the Home Office. The age of innocence

You will soon find your balance again, ie have good and bad moments, good and bad days

Thanks to you all for being so supportive and wise. I think we're still in some ways going through a sort of 'grieving' process for the child we might have expected. Our poor DD - it's not her fault that she's the way she is, and she needs and deserves parents who believe in her and will fight for her.

She's 15 months old and until very recently we were mostly fixated on the heart defect she was born with that has recently been surgically repaired - and we were generally encouraged by the various health professionals to believe that once her heart was fixed, she would 'catch up' development-wise.

I think it's right that once she's had a full assessment and we've sorted out physio etc, we'll feel a bit better.

I'm going through a particularly hard time right now, because in addition to anxiety about DD, my best friend has been diagnosed with breast cancer. She got the diagnosis less than a month ago, and it was a big shock - but this week further scans have shown that the cancer has already spread to her liver, spine and lungs. It's grim. She's been my best friend for 18 years - our whole adult lives. She's 38 and has a 2-yr-old and a six-month-old baby. I can't bear it. Really painful grown-up stuff.

Thanks again for taking the time to make me feel more positive.

OMG that is so hard about your best friend. You want to be totally there for her right now, in the time she has left, and so you must be feeling pretty torn right now.

No wonder the world is dark for you, in a totally non selfish way you need your best friend more than ever too.

sorry to hear about your friend but remember its ok to not have to be the one to keep it all together all the time

if you need to talk were all here this has been my saviour some amazing people on her eand you all know who you are wouldnt be how i am today without you all

so dont be afraid to come on and moan about anything to open up about anything we dont judge on this forum we support each other xx