"I am capable of more than I thought."

And he got away lucky.

My niece with downs had intestinal surgery shortly after she was born. She had heart surgery when she was six months old. Shortly thereafter she contracted a virus which triggered her Still's disease. A systemic onset juvenile rheumatoid arthritis. Only it took a year, total organ failure and a couple heart attacks before the docs could figure anything out.

She's now on steroids and naproxen. She's only two. She is no where near walking. She's got a few signs but still doesn't speak.

Incidentally, my sis found out she was having a baby with downs pretty much the same week she found out her 4 y-o son has cystic fibrosis. He has to take daily nebulizer and chest percussion treatments with occasional 2-week long intravenous antibiotics through a pic line.

Both these kids may die before my sister. Her house is like a hospital ward.

How does a person get used to a life they couldn't even have made up. It's depressing, it's defeating, it's frustrating. It is VERY very hard to come up with reasons why life just doesn't plain SUCK.

Parenting is serious business. It's harder than anything anyone will do. It can be heartbreaking in a myriad of different ways. Anyone who decides to venture there should really think about what is at stake.

I weep for my sister every day. I witness the heartbreak daily. I don't know how to help her except to be there. I have my two "perfect" kids. And I thank my lucky stars. Cuz that's all it is. Luck of the draw.

{{{{{{{{Stinko}}}}}}}}}}}}}

I too, consider myself lucky to have had 4 children free of any problems. It is luck of the draw.

I am sorry for the heartache for you and your family. I just recently found out the joy of having a niece myself (My brother and sister in law gave me a niece and she just turned two). My sister cannot have kids....she has very bad diabetes, polycystic ovary disease and has had a few strokes already.

I cannot imagine how hard it is to see your sister go thru that and how hard it is for all of you. And I know that heartache is far from over with each crisis your family will have to face in regards to their health issues.

Don't waste your time with that.

By being there for her, you already figured out what you can do to help. Don't underestimate yourself.

big hug for all of you.

His daughter is capable of more than he thought too.

I cannot comprehend the decision to have a child with downs syndrome.

I apologize in advance if this offends anyone.

I, too, have a child with a disability. He is autistic. If a child with Down's has a meltdown in public, people smile sympathetically. If an autistic child does it, they glare and tell the parents "You should be ashamed of yourself for not controlling your child." You see, autistic children look normal on the outside. The require every bit as much extra care and attention as a kid with Down's. My son will never be able to live on his own. He will most likely never fall in love or have a family. School has been a real struggle for him, because the kids don't understand why he acts so weird, and the teachers aren't allowed (by law) to tell them.

I do feel sympathy for all parents of disabled kids. But sometimes I want guests at my pity party.

If a doctor told me that the baby I'm carrying right now had Downs Syndrome, I wouldn't have to make any decision, I'd just have a child with Downs Syndrome.


It might help to mention, since this isn't the cozy forum where everyone knows everything about everyone already, that I grew up with a brother who has Downs Syndrome and Autism. I grew up with that so it's not a big deal to me.

SPAM

(no need to make visual pollution, previous editor!!)

SPAM

No s**t!

-yoornotme

From the article:

Yeah, I think that pretty much sums up having a child with Downs Syndrome.

I could type for hours about how amazing my brother was and the impact he made on our community, the school system, and even medical care. He was absolutely amazing and he touched the heart of every person he ever came into contact with. I really do believe that having a child with Downs Syndrome is a gift and the child makes his parents into two very special people who they weren't before.