Parents / Mothers of babies/children with a disability illness

sweetangelkiss

Well-known member
This is something I very rarely discuss with my friends (but then again none of my gf's are mothers) but I want to know if there's anyone here who has a child/baby/infant with a disability or illness.

I have a beautiful (not being biased!) 5 month baby boy with dwarfism and since he was born I feel like I see more of the hospital then my home. I find now that I have become more disgusted at the human population when I see them treat people who have a disability with disrespect because I know one day my son will be in the firing line and I'm going to feel all his wounds.

I have tried to connect with other parents of children with a disability but I know what it's like to look after my son and the time it takes from you so the other parents and I are always trying to "find time" which is why I love to come to specktra because before I became pregnant and a mother, MAC cosmetics was my passion and I still want to hold on to that. This sounds bad but sometimes when I'm feeding Luca in my lap I'm reading the threads on here!

Would love to know if anyone is in the same position...

Has anyone been in the same boat?
 

Kayteuk

Well-known member
Well my sister is severely handicapped with Autism. I realise its not the same as Dwarfism but sometimes any disability offers an understanding.

I can definitely give you a hand if you want someone to talk to.
I am pretty much a Mum to my sister part time when I am home. I know what its like to be a carer, and to live in the hospital also!

If you want to chat let me know =)

I am sure there are some other mothers on here or sisters and brothers =)
 

nursee81

Well-known member
I have don't know what it like to have a child with a handicap, so I can't really tell you I know what its like. I do work in a hospital so I see different kinds of people coming thru our doors. I know it can be a difficult at times but remember god only gives us what we can handle. If you need someone to chat with I am here.
 

Ms.Shanti

Well-known member
I have two boys one is 8 and the other is 2(going on 82..lol) My 2 year old was born with Dextro-cardia...Which is a Congential Heart defect.His heart is on the right side of his body instead of his left.He also has other complications because of that.He has two right ventricle's instead of a left and a right. which is called Double Outlet Right Ventricle or DORV. He is a 1 out of million case.There are babies out ther that have Dextro-cardia and are fine but most have their own unique case.like my son..He has a weak left lung as well.A deformed spleen(Aspleenia syndrome) which causes him to have a super low immune system.We can't bring him around alot of people or public places that might have sick kids(malls.play areas,parks w/too many kids) because he's at risk of becoming ill which could land him in the hospital.Even the common cold would call for a trip to the ER.He's had 2 open heart surgeries already(one at two days old and one at 8 months)He has one more to go next year which is gonna be the hardest one because he knows what goes on at the hospital now and is deathly terrified of them.He's behind his peers as far as milestone accomplishments.He really can't talk yet or feed himself like most 2 year olds.It's really hard finding friends who can understand my struggle.He looks normal on the outside but if i lift his shirt up he's ridden with hard scars from all of his surgeries and chest tubes.He even knows where they are when we ask him where his boo-boo's are..lol..He lifts his little shirt up and points to his heart surgery scar.Which is cute and sad at the same time..I spent the first year of his life living in the Children's Hospital.Next year i'll be doing the same.He's my little soldier.I don't know anyone who has fought harder for his life than him.
thmbup.gif
 

ShugAvery2001

Well-known member
Hey ... sorry to hear about what you're going through but I share your pain. I have a daughter who was born with a blood disorder. She's 16 now but it's been a struggle.

Don't feel bad about browsing boards while you hold your son. It's called multi-tasking girlfriend
winks.gif


Anyways, you'll be alright.
You're strong enough, You're good enough, and gosh donnet PEOPLE LIKE YOU
winks.gif


ciao
 

LadyMay3

Member
Quote:
Originally Posted by ShugAvery2001
Hey ... sorry to hear about what you're going through but I share your pain. I have a daughter who was born with a blood disorder. She's 16 now but it's been a struggle.

Don't feel bad about browsing boards while you hold your son. It's called multi-tasking girlfriend
winks.gif


Anyways, you'll be alright.
You're strong enough, You're good enough, and gosh donnet PEOPLE LIKE YOU
winks.gif


ciao


What blood disorder does she have?

I have a 2 year old who has a blood disorder too
 

LadyMay3

Member
I have a 2 year old who has a blood disorder
Weve been at the hospital plenty of times, a week after he was born was when it all started.
 

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