I met someone today whose preemie baby was recently diagnosed with CP.
I told her about H and E, and the first thing she asked was if Eden could walk. I explained that Eden could walk in her pony walker, but would probably never walk independently. The poor mom burst into tears. She said that the doctors have told her that her son will probably never be able to walk. She repeatedly said "he's gonna walk." "Aren't you?" "You're gonna walk."
She also said "poor baby, poor poor baby" in reference to Eden. She's clearly never met Eden. Poor baby my ass.
Wednesday, June 27, 2007
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31 comments:
Billie, you have such a way with words! For that woman's baby's sake, I hope she gets some perspective and soon! That video truly says it all!
Your blog, and your incredibly amazing daughters, are an inspiration to me! I am a single mom of preemie twins, and I won't tolerate one ounce of pity for my sons, either. They are strong, resilient survivors, and despite any special needs they may have, there is nothing "poor" about them. They light my world with their smiles and zest for life, and I just hope the rest of the world sees them for the awesome little people they are.
Billie: You amaze me. Indeed, that mom would never call Eden "poor baby" if she had met her. She is so vivacious and full of life. I love the video, in fact I think you need to post them more often!
Billie - Incredible! I love how she is more than ready for the chase, ready for a fight and growls back, and also ready to be friends...she's like "hi, umm, why are you chasing me anyways?" She is adorable. Thanks for that pick-me-up video!!
Aparna
Gotta love it! I love Eden running back and forth, but really my favorite part is hearing her say....Aaaaarf or Aaaaar! It's so cute!
Opps. Forgot
XOXO
Amy
geez Billie, can Eden be any cuter! Does she have a boyfriend as I would love to be her MIL.
I had one of those experiences lately. I just wish people would keep those thoughts to themselves, or alternatively if they feel the need to express them, not express them in front of my kid.
L,
Jacqui
It's funny b/c I love your blog and have always felt heartbroken for Eden. But she has such an amazing attitude and smile-- I can't help but assume that is because she is so dearly loved.
Eden rocks.
OMG! She's RUNNING!!! Holy cow! I gotta get Jack to try out the Pony sometime! She looks amazing -- and totally cute!!
I am sorry about your conversation with that mom -- I really, truly hope she can gain some perspective as time goes on.
You guys ROCK!
Seriously, can we come play at your house?
Eden is adorable.
Poor nothing. Eden is so rich: full of character and humor and intelligence and perseverance. Even if she never walks independently, those things won't change, nor will the fact that she has enriched the lives of countless others. Too bad that other mother can't see it.
I had no idea how mobile she was. That's pretty cool. Pictures doesn't do her justice. It's all about the video baby!
I LOVE it! How could anyone pity that girl? She certainly doesn't need it! xoxo
"Poor baby, my ass", indeed. That right there, that's your girl doing totally normal toddler things, and I LOVE IT!
Arf!
Look at Eden go!! There's no stopping that little girl--and it looks like you got your exercise, too, chasing her around. Thanks for the wonderful video.
Hugs to you all. You make my day.
Monique in TX
omigod that made my day! Billie, you are right on! Your house looks like mine too - all the equipment and of course the mandatory floor time multi color foam mat.
The problem is that if the woman does not get over her shock and pity and negative feelings she may never embrace what IS good and what IS possible.
Looking at your video if a person "reads between the lines" so to speak they can see that, yes Eden's world is different than your able bodied kid's world - a little anyway - but not bad. In fact, it looks damn good.
So, I am not at all saying "get over it lady" for that poor baby lady because I really think we have to honor people's reactions to loss of the dream of the able bodied child and the hoped for existence. But if you never get out of the loss phase and embrace where you are with love and wonder it will be the child who pays. Only then will the poor baby label fit.
As always, Eden is so lucky to have you guys. I admire your bravery video tapping your madcappedness. So - who was doing the barking - you or hubby?
You guys are just the cutest family and you made my day.
All smiles here. :)
You're right, clearly she has never met Eden.
Eden is just amazing and beautiful, and she may be little, but oh my god, she has so much to offer to everybody who reads this blog. She truly has given me proof that miracles do happen and that her smile can light up even the darkest of days.
I would never think poor baby when referring to eden! Wow look at her move in that walker! She is such a happy little girl!
"poor baby, my ass" way to tell it like it is Billy, that's awesome! I absolutely hate it when people say that, especially when the child is happier, than they'll ever be.
Vickie
Wow aww! She's so adorable!
Isn't it weird how people with disiabilities are the happiest of all of us? I'm sure they see the world so much different then we do!
I think she is pretty amazing. That lady should save her sympathy for someone who needs it.
btw I LOVE all the new videos!!!
While I can understand her desire for her son to walk I don't think that kids with special needs are sad. I feel bad when it come unexpectedly to parents who have hid their head in the sand. I have been preparing for almost 2 years to have a doc qualifed ot make hte diagnosis actually say the words and it hasn't come out yet. Do I deny he has issues.. OH NO! But I hate the label. Do I also think he will walk Yes... somedays! others no.
When we chose to save these babies we accepted them as the they are. I still love him the same today and I did yesterday.
Eden looks so fun. I want a happy kid like that!!! you totally rock MOM!!
She's so full of life!! You are an amazing mommy!
Look at her go! She is awesome! Definetly not a "Poor Baby!"
Holy cow that girl can move!!!
i can't wait to chase eden around myself!! see you guys soon.
she's so damn cute.
lis
She can really fly in the pony walker that is AWESOME!!!
Having a child with a disability is often devastating for many parents-- it's the loss of a dream.
Continue to be a presence in her life, and guide her through this and the many troubled waters she will cross.
Your strength will inspire her, Billie.
I hope you said that to that lady too!
"Hi Puppy." She's so sweet! She seems to be talking a lot these days, huh?
I'm really glad I just read this. My son was preliminarily diagnosed with spastic diplegia two weeks ago and my MIL could NOT get "cerebral palsy cerebral palsy cerebral palsy" out of her head. We unfortunately went to visit her right after the diagnosis and she was just fa-reaking out. She handed me this 30-year-old medical book opened to the entry for cerebral palsy, and it was bleak indeed. I had thankfully come prepared, and handed her all kinds of information on spastic diplegia... written, you know, this century. She's not one of those people that wants to hear good news, though. Self-victimizing if ever there was one.
He's 13 months old, 11 months adjusted, and learned to military crawl about 2 months ago. He's pretty good at it and can rocket across a floor in hot pursuit of a cat's tail quicker than the cat can realize what's going on. I guess my MIL had never seen a baby do the military crawl before, because every time he'd get to crawling, she'd suck her teeth and say "oh, poor thing. Oh, that poor, poor little thing."
For what seemed like the millionth time in my 6-year-long marriage, I wanted to scream at her. All her attitude will do as he gets older is serve to teach him that he's a victim and should be pitied as such. I can't let that happen. I don't want him to feel sorry for himself.
And then there was the blaming me for my water breaking early, but that's for another day.
Sorry for venting in your comments, but you really vocalized how I was feeling. Poor baby, my ass, indeed.
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