Feeling so sad today.....!

[lourobert]

Hi all,

my son is 8 months old and dx with Infantile spasms and Williams syndrome. Weve had a rough ride since he was born with things being not quite 'right'.I feel like Im coping most of the time. I was godmother to my bf son aged 4 months and although I was hesitant I was fine with it. I just been to see her and her son today and it just broke my heart seeing him sat in his play centre, playing with toys and laughing and giggling- all the things my son should be doing but cant. I cant help feel so resentful and that is awful but I cant help it. I should be enjoying all the things that she is doing with her son instead of having hospital appointments 5 days and week and giving my son medication. I made my excuses and quickly left before crying once she'd shut the door. Normally Id be ok but today I wasnt feeling so strong. When we were preganant together we spoke about our kids growing up together and going to the same school as we did when we were kids- but that isnt going to happen. I love my son dearly. I just dont know if this pain will ever go away.

Im not really asking any questions just wanted to get things off my chest- telling my dp or family will only worry them.

Thanks for listening
Ruth

all I can say is that it does get easier with time
xmas time still hurts though
but our kids have their own special qualities about them and their own little personalities
hugs
xxx
ps dont be afraid to share your feelings with family
as they may be thinking like you
but afraid to hurt you
but it may be a consolation if you all spoke freely
instead of the "what ifs"
you will be able to move on iykwim

btw this is not a rant but only advising (even though you havent asked for any) as have been where you are and really know how you feel.
xxx

sorry to hear you are feeling so sad. it is normal to grieve tfor the child you lost iynwim.
I went through a stage like that. it was always my neighbours dd that did it as she is a year older than dd.
It is easier now she is older.
just sending you a big hug

Sounds absolutely heartbreaking, Lourobert. xxx

lourobert, I so feel for you 8 months is very young aswell. You have all those hopes and aspirations for you new baby. They are born and you beleive they are perfect and when you realise things aren't as they should be it is heartwrenching. I still find it hard looking at pictures of dd when she was a baby (she is nearly 7 now) because it was one of the best times of my life. My sister was still alive and we didn't realise dd had special needs. I felt so lucky and things have gone 'wrong'.

Things do get easier though but I think you always carry a 'what if' with you. You still feel sad for what you would have had and the reality of what you have got. That is normal. Look after yourself

hope youre feeling a bit better lourobert. we all can understand.

Hi, I'm sorry I've missed your posts about this, assuming you've posted here before about what you've been going through. I don't get much time to MN these days. I have a little boy, just turned one, diagnosed with cp at 7 months. He had seizures just after he was born that lasted a couple of days. Even though, up until his consultation at 7 months, all the medics, my hv, the gp - everyone who knew me were saying there was nothing wrong, I just knew there was. I dropped my antenatal friends when he hit 4 months as he seemed so different from the others, I stopped posting on my MN postnatal thread - I couldn't bear to see or hear how other babies were developing, it just broke my heart. You are going through a very difficult stage right now - at 8 months old, you're only just beginning to see the differences - others are sitting, crawling, interacting, even cruising. It's the worst time and my heart goes out to you so much.

It does get better though, I promise. You'll be able to accept that things are just going to take longer - you'll stop hurting yourself looking at development milestone charts and you'll start to see your son's personality shine through. You will feel full of love and joy for him (ok, not all the time - who does - but a lot of the time) and you'll meet a whole bunch of remarkable people and kids who you'd never have met otherwise.

I think you're so brave remaining close to your friend and her godson. I wish I was strong enough to interact with "normal" children and their parents, I'll have to do that one day; the sooner the better for my son's sake - it's going to be a painful process, and I'm not sure how to go about it, so you've got a head start on me! xxx

It can be heartbeaking seeing kids the same age who are nt. I feel like that also and i have 2 kids with special needs although my youngest is more affected by far. How is your son now Charly? And it must be completely heartbreaking finding all this out in the first few months of your childs life.

Thanks to all that took the time to read and listen- it makes a difference. SOmetimes I feel like Im doing so well and others Im just crumbling- i guess thats pretty much normal.....?!I have a hard time accepting that its my son, why not someone elses, i wouldnt wish what ive been through on anyone though. Its hard, im lucky to have family and friends.

I put the milestone chart down a long time ago...and I love my son for who he is, it just makes me sad! I have a hrd time acceptng that this is forever, even though things will get better iyswim.

Thanks and hugs to you all ((((((HUGS)))))

Louro,so sorry you are down.It is hard,that i konw.
I am a speech and language therapist with a child with language difficulties.
Give yourself time to grieve,things will beocme easier,then you can busy yourself ensuring that your baby and your family have a bright and happy future.

I work withlots of people with Williams Syndrome and although and not one for spouting inanities and generalisations,I afraid that i have to tell you that they are all without exception charming people leading busy independent lives.

Stick around MN.It is a great place to be and will lift your heart and cheer your soul especially when you find it hard to share your worries in RL>

XXXX

Hi Lourobert

Just wanted to let you know that I have felt and still do feel everything you are feeling and others on mumsnet have told me that they have all felt like this at one time or another. I too dropped my antenatal friends, and have difficuty every time I see the little boy over the road who is the same age as DS1 (now 3.9) and my brother's DD who is also the same age. (We have in act now fallen out because he and SIL are so insensitive about my feelings).

All I would say is that if your bf is a true friend you will be able to air your feelings with her and she will help you grieve. She may not know how at first as it is a new situation for her but I have found that my true friends (and family members that I am in touch with)are the ones who give me support and understanding.

It does get easier with time, there is no doubt, as you do start to accept that you can't compare your DS with NT childre. But your DS is still young and you don't know how things will turn out. My DS has GDD and used to have epilepsy and was on meds for a year but has now grown out of it, and his development definitely got better after age 2. The hurt you are feeling is something we are all familiar with on here, so keep posting. xx

PS if your godson is sitting at age 4m then he is (I would say) unusually advanced in any case - my NT DS2 wasn't doing anything very much at that age, didn't sit properly till 8m.

Dear Lourobert, everything has been said really. Don't be hard on yourself. I always think that it isn't that we don't want other people to have what they've got, just we'd like it too. We're not monsters for feeling that way. This must be a very hard time for you and maybe you could tell your friends and family but you're not ready to yet anyway? You will make other friends who understand in time as well as the old ones and you won't want or need so much from them.