Newbie, feeling down in the dumps (for a change!)

Stresshead

Hi guys,

I'm new here, and its taken a while for me to get on here. Four years on and I think it's time!

I have two children, a 4 yr old & 2yr old.
My 4 year old daughter has 4 limb cp, with swallowing diff and no speech, microcephaly and epilepsy.

I just need some company, feeling down about everything. I don't think I've felt happy for a long long time, does anyone else feel like this? please say yes!!!!

x

MummyandCo

I know that feeling very well. I only recently joined here as well my son is 5. I have a 9 year old daughter with severe learning problems aswell so it can all get a bit much some times.
It can be really hard to stay positive when things are so hard but I think its a good thing we've both joined here, it gives you a chance to let it all out and talk about it with people who understand you.
I know for me I was having a very bad day and was looking for someone to tell me I wasnt alone and to know what im going through , what made you finally write something?

joden

HI , i have a son who is 5 and has 4 limb cp and a 17mth old little girl so around the same age as yours i do get fed up sometimes but it mostly revolves round lack of sleep!
If you fancy chatting message me.

josie x

lilysmum

Hi there, YES and YES.

My 4 year old daughter has hemiplegia, limited speech (3 words) swallowing issues, small head thing can't spell it and cannot walk she always dribbling too (lovely lol) and prone to seizures. So kinda similar.

I finally got in touch with social care through her nursery teacher (specialist) recently for some support as I don't have much family and theres only really me and my OH who care for my daughter . I don't know it you've tried this but I found out that there are now social care workers just for disabled kids who can advise on helpful contacts and charities in you area for support. This is not to be confused with at risk, etc social care and is a separate thing entirelly. Contact a family can also help. I found them on the web. I've only just got back on this forum after a while so hope this helps.

Some days are worse than others I find and I have an 11 year old boy just hitting puberty which is certainly challenging also. A two year old as well must extremely exhausting for you sounds like you need a break. Hope this info helps!

chloesmummy

hi
i feel very much the same as you all.
my daughter has just been diganosed with spastic dipeglia cp with only her legs being affected.
i no we are lucky she isnt affected very much but i just want to cry very time i think about it.
i felt very selfish for feeling like this
its good to no that im not the only one to feel like this
xxx

teuta

Hi

You are not alone.

My son is 1 years old 2 months and was starved of oxygen at birth for 30mins (the amount of time drives me insane, we are in legal action against the doctors but it hurts knowing that their lives go on as normal and my son's has changed for ever!).

My husband is my rock and he seems to have a very pragmatic approach to the whole situation and seems to easily be getting on with it. Which makes me wonder if I am going mad then?

The hurt just never seems to go. I walk around with a bullet in my heart. When others talk about their babies walking, sitting, talking I have this overwhelming sense of sadness and fear for the future, in fact at the moment I am happy to surround myself with my friends who are single and don't have kids even.

I wish I can say more to comfort you but I always say things happen in life for a reason. There is a reason for special children like mine yours and everyone's on this forum, please read this poem that might help you, I know it did me -

The Special Mother by Erma Bombeck

Did you ever wonder how the parents of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

MomofTwins

OMG! this poem just made me cry so hardly! Now, I feel I am not alone in this boat! Life has not been fair to us for the last 3 years. I have never felt this depressed and lonely in my life but I always tell myself there is a reason we have been struggling and trying so hard to put things together. So, this poem just tells me I was right;)

I would like to share this poem with all of you... It really helps me to see the light at the end of the tunnel...


Welcome to Holland
I am often asked to describe the experience of raising a child with a disability

eviesmum

I shouldn't have logged on to this at work as am going to be found sobbing at my desk. I had previously read the 'god choosing parents' poem and it is always moving - even for an agnostic like me!
The holland versus italy poem is spot on.

I am too finding it really hard to stay positive at the moment. I am constantly in tears and have this hollow stomach feeling all the time.

My daugher was diagnosed at 1 yrs old. She is now 20 months, and I feel like I'm feeling worse as time goes on. I feel more and more overwhelmed and can I say downright bitter when I see other toddlers and its totally isolated me from all my friends with babies and toddlers. I cant seem to move forward either, and accept where we are at.

Evie is a beautiful happy child but has significant physical limitations and we have no idea how it will be for her in the future.

My sister is currently preganat - announced it weeks after Evies diagnosis and Im struggling so much and feel so angry that it is separarting me from enjoying her pregnancy.

We are currently awaiting MRI results and the outcome of a formal complaint againts the hospital - and when I think about all that is possibly ahead of us I feel soooo angry and upset but have no where to get it out. My partner seems to have accepted it much quicker than me, and I dont want to burden my family.

I've started enquiring about counselling as I cannot keep it all in any longer..

I feel so guilty to feel this upset about having an amazing little girl but the feeling just wont go away.

Does it ever go away?????

I'm so sorry to hear you are all going through the same horrible emotions, but I guess it helps normalise it to hear others saying what you feel.

Hang in there...

xxxxxxxxxxxxxxx

Flossy

Hi yes I get this down in the dumps on and off. I am also new joined today but have replied to posts already today. My son is 7 years of age now but is 2 years behind. Yesterday my son's Physio from his school was on the phone to me for over an hour. He does have lots of set backs when hes not well we go forward 3 steps/back 3 steps so we arent getting anywhere. My son has cerebral palsy quadraplegic he does use a stick but is now falling and had a very bad accident at school he fell on the handle of his stick his face isn't a pretty picture. The OT made me feel that i wasnt supporting him enough at home. I was so bad yesterday I couldnt stop crying. I cryed myself to sleep!!! I wrote a note to the physio and explained how she made me feel & also i'm sending in on monday "a day in the life of my son" from getting up at 7 am to having his breakfast/getting dressed/shoes/splints/in wheelchair etc and gettng ready for the bus at 7.30 am hes first on/last off, hes on the bus for 1.1/2 hours there and back, no sooner @ home teatime, supper, pj's and bed. They don't understand!

I don't think I'm the only one. Thank god for mum's she's been there for me so much.
x

Lisalou

Hi every 1 I'm new my name is lisa I'm 24 yrs old n have a 4 year old little girl wiv cerebral palsy same as many on here she don't walk talk or do many other things just found out she is epilepsy as well I feel down n helpless towards lacey all the time I just want her 2 do wot other children do she got group b strep meningjitus wen she was 12 hours old wich caused all of her problems x