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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Monday, January 7, 2013

Guilt

Today I feel guilty.

Lauren has been spitting up like crazy. It used to be just after bottles. But now it's after food, too. Different formula hasn't helped. Different food hasn't helped. Medication hasn't helped. It's totally exasperating.

It feels like failure on my part when she spits up an entire meal. It's so incredibly frustrating that sometimes I just want to yell at her, "STOP IT!". It's messy, to say the least. We can't keep up on laundry when we go through 6 outfits in a day. Our carpets are seemingly forever stained with formula, beans, bananas, mango, peas, you name it. Her weight gain isn't terrible, it's satisfactory for now. But for how long?

And then I found out that it's most likely just a Down syndrome thing related to low muscle tone.

I feel so guilty for being frustrated. It's the first time I've really been bothered by a "Down syndrome thing". I love her extra chromosome, I could just do without the vomit. It makes me feel terrible that something that causes me so much anxiety is because of Down syndrome.

 It's driving me crazy! We can't even to to church with 2 extra outfits packed for her and an extra shirt (at least) for me. Please send us prayers, vibes, good thoughts, anything you have for Lauren to keep her food down. Please.

Another thing about Down syndrome that surprisingly doesn't bother me?

Down's. Down's baby. "She has Down's." Even downsy.

Anything other than people first language drove me crazy when I was pregnant. It felt hurtful. Now I honestly don't care. Heck, even I get tired of always saying "Down syndrome" instead of just "Down's." It honestly doesn't even offend me a teeny tiny bit. At all. I wonder why?

When Lauren was in the ICU a nurse said, "I love Down's people." and my feathers were immediately ruffled. Until she followed it up with, "My big sister has Down's and she's my favorite person in the world! She has always been cuter than me- her baby pictures are awesome, I love her so much!" That was a huge eye opener for me! I wish I remembered her name, I would write in to the hospital about how profoundly that affected me and how much I needed to hear that Lauren could be valued even with the "wrong" language.

So while I will continue to use people first language here and in my life, I don't see myself getting offended. I choose to use it in case Lauren prefers it later. I would hate to make her feel less valued, especially as her mom. But in case anyone in real life is reading this and never knows the right way to say it- there isn't a "right way" with us!

And now for my obligatory photo dump since I suck at actually adding pictures where I want them.

Their first tea party! Ryan was actually not even mad. Right after this picture was taken Lauren barfed into a tea cup and proudly handed it to me. It was in the top 5 most disgusting moments of my life!

5 comments:

  1. I hate reflux too!!!!!!!!!!!!!!!!!!!! Have you asked your pedi about zantac or prevacid? They didn't help Max much, but they do help some kiddos. At 3 1/2, he only spits up/throws up, a couple times a week now ;) It does get better once they are walking.

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  2. Loved your question about people-first language and I can't wait to see how Mama Hop responds. When I was growing up, it was completely normal to say "Downs". Leanne even says "Downs"! I guess it doesn't bother me because it's a generational thing and also because I don't think Down syndrome is a negative thing so I don't take offense. I'm proud that she has Down syndrome. I also think that people can get carried away with the PC stuff - I wrote about it under the FAQ's tab: http://confessionsofthechromosomallyenhanced.blogspot.com/p/faqs_27.html

    Don't get me wrong - I am the first person to cringe at the "R" word but I just don't put the two in the same category. BTW - Josie and Merryn have that tea pot and they LOVE it!!!!

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  3. P didn't have extremely low tone, but low enough I guess, and she has mild CP but we had puking until she was over 1. Projectile a lot of the time. No meds really seemed to help her, DD2 has reflux and axid was our lifesaver, we never tried it with P though.
    Good luck..i totally get it, we had people who didn't even want us at their house because she puked, SO MUCH.

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  4. I can't wait for the next Mama Hop Monday!

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  5. I'm the same way with the people first language. I was very particular about it when I was pregnant. I wouldn't correct anyone, but it always bothered me a bit and I always said "with Down Syndrome." Now, she's been in the NICU for over a week and everyone says Down's people or Down's. I really don't get bothered by it. Although, I do wonder... shouldn't doctors and nurses know the correct name? Still, I'm not even phased by it.

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