365 Fridays Week 31

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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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It’s so nice to be home and back in my routine after so much traveling last month.

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Self Portrait

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Colorful Copley sleeping.

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This kid- after 13 months of pictures of Copley laying on the ground I’d just about exhausted every ounce of my already limited creativity. Now that he sits (HE SITS!) it’s a whole new world.

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Chasing that pretty light and bokeh.

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A farewell phot shoot for our gal guy Oatmeal.

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Copley sitting, again.  My husband is a great sport, I get home from work and he’s fried from spending all day with two kids. I pull into the driveway and he’s ready to relax… and I grab him and the kids, load everyone into “Mommy’s silver car” and drag them out on hikes. I bet he’s looking forward to winter!

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Bzzz…

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Henry doesn’t sit for pictures. He’s not into it. Unless I’m trying to take pictures of someone or something else.  I’ll take what I can get.

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Henry, monster.

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We have this neglected flower garden in our front yard. Periodically I remember it and go on a weeding spurt, but for the most part it’s left to its own devices. We really never water it, the flowers are all perennials- it is very low maintenance by design. So it’s always a surprise when the flowers bloom big and bright and beautiful.

Cockerels!

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When we decided to get chickens, a friend of mine, a veteran chicken owner, told me “If you want to end up with 3 chickens, get 6 chicks.”

 That sounds harsh, but the reality of raising chickens is that sometimes things happen. In our case, cockerels happened. Cockerels are young roosters, and they are prohibited in our village. With many chicken breeds it’s not possible to sex the chickens as chicks, so you have to wait and see. We were surprised when not one but two of our girls turned out to be boys.

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We’ve suspected that Spicy, the black chicken, was a roo for a while, ever since he developed those beautiful orange feathers.  So I wasn’t too surprised when, on  Saturday morning, drifting in and out of sleep I heard “COCK-A-DOODLE-DOO!” My eyes popped open and I ran out to the back yard where I was surprised to find that Spicy wasn’t crowing, but Oatmeal. Apparently my beautiful naked neck mille d’uccle is at the top of the pecking order in Eisenbergia.

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I’m clearly a novice to this whole chicken thing, because now that we know it’s impossible not to see it. He struts around, puffing out his chest and flapping his wings, he stares me down, surrounded by his pullets, and instead of running for freedom when we let him out of the run, he tries to get back in to his flock.

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Fortunately it wasn’t too hard to find them new homes, we have a friend who lives on a lot of private land outside of town who is really excited to add them to his flock. No chicken soup for them!

Golden Hour

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Last night the light out the back window was captivating.
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I’ve been waiting what feels like a very long time for Cop to be ready to sit for me- I’ve absolutely exhausted the different ways I can take pictures of him on the ground, and just like that he’s sitting. Not sitting and then toppling over, but sitting and playing and smiling and clapping. Soon enough he’ll be able to get up himself  and I’ll be irrelevant, but for now, he’s content to have me set him upright and take picture after picture of him.

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Henry is a little tougher. He is a whirling dervish. A tornado. My own little Hurricane Henry. He doesn’t sit still for pictures, I just have to get set up and do my best to keep up with him.

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Last night I turned taking pictures into a game, and after a few minutes found my camera set aside and we were just playing. It was a beautiful night.

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365 Fridays- July

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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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I knew that with all the traveling I did this month my 365 project was going to fall low-low-low to the bottom of the priority list, and like I said on my interview with Mindy, I’m not about to beat myself up over it. Instead I’m just going to climb back on the horse and keep shooting.

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I took, oh, about a thousand pictures of my friend Jayne, The Naptown Organizer, at BlogHer last weekend. She was a good sport; you see, I decided the time had come to force myself to learn how to shoot in manual. I normally shoot in Aperture Priority and get great pictures, but it was time to really dig in. I’m… getting there. This picture for example, has a ton of noise, but it’s not a picture I’d have been able to get in AP, the light was just too low.

It’s a beautiful picture, I’m glad I got it.

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I’m taking another online CM course and Josh, as ever, is a very patient subject. And handsome!

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I have, oh, about a hundred awesome picturess of Cop going after these huge bubbles.

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Snuggles are Cop’s specialty.

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Repeat from yesterday, which is so lame, but I’m obsessed with this picture. Beets are so beautiful.

July’s Garden

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It’s been a wet cool spring following a wet cool summer so the garden is slow to grow this year. That’s not good or bad, it’s just different, and it’s been a good learning experience.

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I’ve been pruning tomatoes more aggressively this year than in the past, the result is slightly smaller, more manageable plants with more fruit- our tomato bed is full of large green fruit, another week or two and I’ll have my hands full with big, ripe, red tomatoes.

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After many years and many failures we found the perfect tomato cages. Made from ungalvanized cattle mesh, these cages are strong enough to hold up to our monster plants and the rustic look of the ungalvanized (rusty) steel is a welcome aesthetic addition to our garden landscape.

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We used the mesh leftover from building the cages to build this lattice for our melons to climb and grow vertically freeing up even more space in our beds. It’s also a nice hiding spot for Henry and visually, kind of a show stopper for passersby.

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No doubt the REAL showstopper is the coop, our neighbors just don’t know what to make of it- we’ve even caught people taking pictures of our yard!

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An lucky chicks get to enjoy lots of treats from the garden- these little Sungold tomatoes are a favorite, as are the ever present weeds we are constantly pulling.

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Cauliflower is a new crop for us this year, and time will tell if it’s a success, we have learned already that we planted it at the wrong time of year, which may have led to premature heads, but we’ll bundle them soon and hope for the best.

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Beets are a sleeper favorite of mine. I HATED beets my whole life until I was pregnant, and now I love them! They are a beautiful crop, adding lovely color to the garden, very low maintenance, great fall harvest. This year I planted twice as many as last year, and next year I’ll plant even more.

 

 

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!

UntitledSee y’all again in 2016- Atlanta here we come!