Choosing Our Words

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When I posted about my experience with the bartender and the R-Word last week, a few people asked me incredulously why I still tipped him or why I didn’t “rip him a new one.”

My answer boils down to the change I want to see. I don’t want to alienate people and make them defensive, I just want to open their eyes. I want to make a human connection and find a way in- and when I walk away, I want them to WANT to be better.

Yesterday I said something to a friend that was extremely insensitive, something that coming out of the mouth of a friend was hurtful and shocking to her. I didn’t know it, but maybe I should have.  I should have just conducted myself with more empathy and sensitivity on the whole. I should have been better.

Sound familiar?

The way she handled it was amazing, she cared enough about me to speak up- she didn’t alienate me or eviscerate me, she shared a part of herself, and changed my world a little bit. She made me better.

Sound familiar?

 

Beauty Tuesday- What I Wore at BlogHer

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The only nice thing about going away two weekends in a row, is that when you get home from your first trip, you’re already packed for your second- just wash and repack.  I didn’t really fret about my suitcase for BlogHer because what I’d packed worked really well for Tempe.

Turns out I wear a lot of blue.

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I’ve had this dress hanging in my closet for months, and I decided to just suck it up and wear it. It’s a little outside of my comfort zone, being that it doesn’t leave much to the imagination, but it’s comfortable and easy to wear, and doubles as a a really cute shirt when worn with jeans-which I discovered because the conference hall was freezing!

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So How Was BlogHer?

Well… I went into it with pretty low expectations, and I wasn’t wrong. Much of the focus was on monetizing, and that’s really not my goal. But learning about that for much of the weekend got me thinking… what is my goal? Why am I still writing, still sharing, still blogging?

Down Syndrome At 13 Months

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Our baby is starting to look so much like a boy. He has so much personality, he is so funny, and lovey, and he is just absolutely enthralled with his brother. He is getting pretty good at rolling around to get where he wants, and he’s even army crawled a foot or two once or twice, though he doesn’t do it often because it takes a lot of effort and really wears him out.

He loves blowing raspberries, he has mastered one sign (more), eats everything in sight but likes beans the best. He can sit with help, and enjoys it but can’t get up and down by himself yet.

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We live happily in our family bubble, we don’t notice Down syndrome; we focus on ability not disability. It’s easy to do in the bubble.

Last weekend I went outside my bubble. I went to Tempe and met my friends and their darling babies too, many of them who are Cop’s age and they are standing, walking, starting to talk. On day one I felt this little pang, this pinch of what life “should” be like.

Should. What a stupid word.

On day two the pang was gone. An ache for my boy replaced it. I missed him. I missed carrying him around because he can’t get around himself, I missed holding him up so he could see, I missed the weight of him on my back, and the pressure of his head on my shoulder when he rests. I’m embarrassed that I still get the pang, sometimes, the bit of jealousy about what life “should” be like, because if our life was different, if Copley weren’t I’d be devastated. He is perfectly him, and perfectly ours.

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On day three something funny happened. I went to a conference session the topic of which was Babywearing and  SPD/ASD- it was the first special needs session of the weekend. I listened, and I learned, and I also felt. I felt the undercurrent of shared struggle that parents of special needs children bear, even if we don’t think of it as a burden. It’s not fear of disability, it’s not fear of hard work or annoyance at the complicated ballet of scheduling our family has to pull off to accommodate two kids and four therapists, life isn’t hard, we aren’t angry or sad.

But we’re tired. Exhausted. Fearful about the future that holds so many unknowns.  Alone and isolated and afraid to drop one of the many balls we have in the air. Worried about friendships and community and love- not for us, but for our children as they grow and integrate into our communities. Normally I push my fears to the back of my brain and smother them because there are too many things that require my attention right now, and to linger on fear prevents me from living presently. But as I sat and listened, my eyes grew wet, and tears started to fall. And I wasn’t sad, they weren’t tears of grief, I’ve spent those tears, they were just so many overwhelmed feelings bubbling out.

To hear women who’ve come before me say yes, it’s exhausting, yes, it will become even more exhausting in the future, and yes, you can cope, you can manage, you can thrive. This is my village, this is why I’m here.

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Waiting for my flight home I sat at a lunch counter at the airport and picked at some french fries. I chatted with some men returning from a bachelor party, and the bartender who was egging them on, angling for a big tip. It was fun, a fun way to kill time when all I wanted was for time to fly so I could get home to my babies.

One of the men on the trip said he was an agent for YouTube stars which turned the conversation towards funny viral videos. I handed the bartender my credit card and was about to sign the tip when he made a comment about how “fucking retarded” people are. My hand froze, and I looked at this man, a man who works for tips.

It used to be hard to speak up, to chastise people and ask them to be better, especially when the mood was jovial and the crowd was laughing, but it isn’t hard now.

I looked him in the eye and said “the funny thing about a job like this, is you never know who is sitting at your counter, about to give you a big tip. My son has Down syndrome, he’s just a baby, and when you say things like “fucking retarded” you are being hurtful and extremely offensive, not just in the abstract, but specifically about my beautiful one year old. There are so many other words you can choose, please choose better, be better, and not only because you never know who you are talking to, but because you never know who might overhear you, and because it’s just time to let that word go.”

I didn’t feel that punch in the gut feeling, I wasn’t sad, I wasn’t really even angry. I think I got through to him, at the very least I don’t think he’ll ever say that word at work again. I tipped him 20%  and got on my plane. When my family picked me up at the airport my beautiful boy wouldn’t let go of me.  And I couldn’t let go of him.

BlogHer and The Baby Ladies Baby Shower

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Did you guys know I leave for BlogHer on Wednesday?

It’s my first time, and I might not be going at all but for my friend Jayne at The Naptown Organizer who caught me on a good day and talked me into it.

It’s tough leaving the boys so soon after coming home to them, but I’m really excited for this opportunity to get in the mix and learn more about how I can make 321 Carry the best it can be!

One of the events I’m most looking forward to is The Baby Ladies Baby Shower!

Sponsored by Save Babies Through Screening Foundation and Babies First Test.

We are sort of experts in newborn screening having received the super deluxe package since we knew Copley had Down syndrome before he was born AND because I gave birth in one state and we lied in another, we had a lot of hoops to jump through to satisfy all the requirements.

Happy to do it though, honestly it was just another check mark on the list of things we were checking anyway to make sure Cop had the very best care from day one. It was on day one, in fact, that he failed his newborn hearing screen. Several repeat failed tests later we went in for his tubes and saw such incredible progress. With copley, and other children with disabilities it is so important to eliminate any roadblocks for development, and those early days, weeks, and months are important.

Save Babies Through Screening Foundation

The mission of the Save Babies Through Screening Foundation is to improve the lives of children and their families, by working to prevent disabilities and death resulting from disorders detectable through newborn screening tests. The Foundation’s goal is to see that every baby born in the United States is screened successfully, effectively, and comprehensively.

Save Babies Through Screening Foundation educates parents, pediatric healthcare providers, and policy makers about available comprehensive newborn screening, the importance of obtaining positive or other test results requiring follow-up actions within 5 days of birth, and the importance of prompt confirmatory testing and treatment/management when needed.

Baby’s First Test

Baby’s First Test houses the nation’s newborn screening clearinghouse. The clearinghouse provides current educational and family support and services information, materials, and resources about newborn screening at the local, state, and national levels and serves as the Clearinghouse for newborn screening information. This resource is dedicated to educating parents, family members, health professionals, industry representatives, and other members of the public about the newborn screening system. This site also provides many ways for people to connect and share their viewpoints and questions about the newborn screening system.

 

 

Friends And Fun In The Sun

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Tempe was a trip! It went about as expected (except for a nasty bout of food poisoning I got on day three that pretty much killed the trip for me) lots of friends, a little drama, tons of pretty wraps.

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I took a few classes, though not as many as I’d planned (see; food poisoning) and the classes were great, I came home with more tools in my tool box for BWI South Chicagoland and 321 Carry.

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The best part, hands down, was getting to spend time with friends.

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And playing with wraps.

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We locals were laughing that it took us traveling 1745 miles to sit down and have a beer together!

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I think we really need to make a little more of an effort to get together, more often than once every 2 years.

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And the babies! I love my friend’s babies like I love my own babies!

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Beauty Tuesday – Vacation Packing

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I don’t normally have trouble packing light- but this trip has me stumped!

I’ve got to pack clothes for day (including a sweater because I hate that canned AC air at conventions), a few outfits for night, my new demo doll, Gus, a wrap, my camera and lenses, my iPad, and some knitting

I don’t have a ton of clothes that fit me right now that are also palette wins, so I don’t have too many options thank goodness.

The List:

  • Skinny jeans
  • A few tanks and tees
  • A couple dresses
  • Flats, flops, heels
  • Make up
  • Hair stuff

And packing tips!

What am I missing?

IBC Countdown Is On!

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Just a few more days until I leave for the 2014 International Babywearing Conference in Tempe!

The weather should be terrible, but the AC in the hotel will be cranking out on high! I’m meeting most of my friends at the conference and believe it or not… I’m traveling without my kids for 4 whole days!

IMG_5944[1]I know it sounds a little crazy that I’ll be traveling to a babywearing conference without my baby, but I am attending class sessions as an educator the entire trip, have dinners and nights out planned with friends, and plan to do lots of networking for BWI South Chicagoland and 321 Carry, so josh and I decided that the best way I can make the most of my trip is by flying solo.

SOLO! I’m so excited! I fly out on Wednesday night! Now to just get through the next three days of work…focus focus focus…

365 Fridays- Week 27

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On Fridays I’m linking up for a 365 hosted by Sarah @ Nurse Loves Farmer, Mindi @ Simply Stavish, and Stephanie @ Behind the Camera & Dreaming.

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After my composition class through Clickinmoms wrapped up I needed a break from my camera, that break coincided nicely with our power going out for the better part of a week so I just… unplugged. But I’m easing back into the saddle, I took a short editing webinar this week and picked up a few tricks and I’m having fun shooting again. Most of this week’s pictures have already been shared here on the blog or on Instagram, but I’ve got a couple stragglers left over for today’s post.

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Welcome Home Chickies

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Phew! Two months later permits acquired, coop built, chickens feathered, and it was finally time to move the girls out into their new home.

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We still have some beautification to do, and we’re unsure what we want to do with the bit of land next to the coop, but we likely won’t do anything with it until next summer.

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For now garden projects are done, and it’s all maintenance mode until fall. Here that means weeding. I think it’s hilarious that as a kid my most hated chore everyday was pulling weeds, and now it’s a part of my evening that I look forward to everyday.

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And as you might imagine, the chicks are the talk of the town right now. People always stop and talk to us about the gardens (our yard back up to a nice large park and walking path) but now everybody wants to come and see the chickens too.

Beans And Beans And Beans And Beans

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Food is everything in Copley’s world.

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I’m savoring this eat-everything phase while it lasts, Henry ate everything when he was a baby too. Now the pickiness drives me to drink.

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The most important thing to remember, when feeding Copley, is haste. You’d better have the food ready to go, and lots of it!

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This kid will shovel it into his mouth like it’s going out of style, and if he runs out, he will make no bones about his displeasure!

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With mouth and both fists full of food he’s already started signing “more” just in case he runs out.

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You know, just so you don’t forget, Copley is here for beans.