Liquid Potassium? Ew.

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You will never meet anyone more excited about disposing of expired meds than I am. You may as well not even try, you guys! And THIS one here has me feeling extra happy. It’s been a while (over a year) since I’ve updated you on my health, and I’m starting to think it’s never going to be a good time, I’ll never know what exactly to say, and I may as well just put SOMETHING out there. So here goes!

Living with CF in 2016 started out terribly. I got sick right before the holidays at the end of 2015 and was having a hard time breathing. I don’t have much margin for “error” and this was a big dive. I did a round of steroids and IV antibiotics over the holidays (so not recommended). It helped some but not enough, and I needed a second round of IV antibiotics in January 2016. The one my doctor most wanted to use (based on culture results) is the ONLY antibiotic I’m allergic to. This meant I had to be admitted to the hospital in Ann Arbor for a couple of days to be desensitized to the med and make sure I was stabilized. We never knew desensitization was an option, and were thankful that it brought that medication back into rotation. Soo I was in the hospital over our 10th anniversary. (Don’t worry, Palm Springs in the spring made up for it!)

Once home and back on IV’s (including the one I am technically allergic to) in January, I started having issues with my heart rate, something totally new to me. It culminated with an afternoon call from my Dr who had just received worrisome lab results and wanted to admit me to the hospital (back in Ann Arbor) to get things under control. Thankfully, by the end of that conversation, we compromised with me drinking liquid potassium on top of all day bananas and taking magnesium, etc..

All that to say, it’s been a YEAR now since that mess, and the nasty nasty potassium is leaving the building! BYE. The rest of the year was nowhere near as dramatic, by the grace of God, although I did have a couple of decent colds which required oral antibiotics. The happy news, which I am so surprised about, is that it has now been a year since I’ve done IV therapy! This is a long time for me and very exciting. Also ironic, now that I have a port. Hah.

I do need to temper that happiness by saying that I am only working on more or less than 40% of my lung capacity so things could definitely be better. There is always the possibility of improvement, but never the promise of it, you know? Josh and I don’t spend a lot of time worrying about numbers, etc; we focus on what is right in front of us and do our best. The older I get, the more grateful I am that God has gifted me (us!) with an optimistic spirit. It is hard to explain how significant this is to me. There are times or moments of fear when things get tough, but our LIFE is full and joyous (Nehemiah 8:10b!).  Swimming keeps me healthy and always helps me stretch my boundaries, and Josh makes sure I keep exercising one way or another. He is my other greatest gift from God!

We’ve been getting very un-apologetic about staying away from people with colds. It is harder than it sounds, but we believe it to be very important. So far this winter there have been three separate instances where others around me got knocked on their knees by some virus or other and I never even had a sniffle. I was telling my mom that at work the other day, and we had JUST  finished listening to this song. I couldn’t say it better myself. (The visuals on this video might be distracting, but give it five minutes and you won’t be sorry!)

So anyway, there’s my health update! It’s late January and things are looking up. I just hit a goal in the pool that I haven’t hit since my last cold in October, and we’re encouraged by that. Thanks for the love, and as always for the prayers.

Mark & Jess

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Oh, the cuteness.

I took these pictures of (my brother) Mark and Jess and the kids a couple of weeks ago. They’ve had a big year this year, with Baby Clara arriving. But behind the scenes things have been difficult. I haven’t talked about it much here, but Mark & Jess are in a place where they could really use the love and support of their friends and family.

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Colleagues from Jess’s work set up a Go Fund Me page for them because their situation involves financial strain. On that page I wrote more of a description of what is going on with them, and instead of writing it out twice I’m asking you to check it out here!

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Thanks for caring for these people that I love.

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We Went to California – San Diego

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Coming out of Ramona, there was a bit of a culture shock when we hit San Diego. Josh’s conference was downtown right on the bay, and our room had a beautiful view of the water. But we still had sand in our shoes. Ha!

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Fancy, huh? I loved the marbled art in the lobby.

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This was our view of the fourth floor pool…

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… (Which, obviously, is different from the third floor lap pool.)

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Anyway we had some free time before Josh’s first conference sessions and it was our last day with a car, soooo – off to La Jolla to see the seals!

They made an appearance in the video I made too, so check it out!

Video link here.

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I know it’s very mid-western slash touristy of me to say this, but I really love watching seals. Harbor seals are adorable, and the sea lions were swimming and playing in the waves like golden retrievers or something. I could have watched them all day.

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These people were swimming in gunky seaweedy water WITH seals, and frankly I mean more power to them, but there is no piece of me that could imagine ANY of that. Gross.

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Check out my kindred spirit; I named him “Monday Morning”. He just literally could not.

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Once the sun burned the fog off we headed through town for lunch (fish tacos, duh) and then to Mission Beach (or Pacific? Where is the line??) to swim in the waves.

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The water was super full of seaweed and I’ll never claim to be all that mature about that. But the waves were big and Josh rented a boogie board so we had a good time anyway. I actually got so thrown around by the waves – they’re so powerful! – that I kept having to take breathing breaks.

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The next day, I took the bus to the San Diego Zoo, but if you squint doesn’t the map look like an amusement park? Disney? This place is huge! And hilly!

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Most of the “exciting” animals were snoozing when I was there so that was disappointing (I’m looking at you, polar bear, koalas, lions, tigers, other big cats) but even still many were out and about and so cool. I mean when is the last time you sat and had a granola bar whilst hanging out with hippos?

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This tortoise was super social, if that’s possible to say? He followed people along the wall and was making eye contact and stuff. He even posed for the picture. What a gem.

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The NEXT day while Josh was at the conference, I took the bus back to Balboa Park and met my mom’s old friend/roommate and my “aunt” Helen. They lived together in San Diego back in the day and it was so nice to see her. And the botanical gardens, of course.

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On our last night in San Diego, we Uber-ed out to Sunset Cliffs for a little exploring and oh man, I’m so glad we could! What a crazy beautiful place. I could definitely have done without the mile-long staircase (did you see it in the video?) but at least I didn’t have to carry a surfboard.

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I get nervous about getting stuck out somewhere when the tide comes in, thanks to a bad experience in Alaska years ago, so we didn’t go all the way out to the farthest point, but we saw enough to get the drift.

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After that we walked the mile or so back into town on Point Loma as the sun set. Life is just so hard sometimes, huh..

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We sat outside at one of these tables at the Little Lion and stayed there until our next Uber arrived to take us home, and that was that.

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One last sunset picture from the hotel room.. The sun in the sails – so beautiful!

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We Went to California – Ramona

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Ramona? Who goes to Ramona? That would be us!

Josh’s latest work trip was to San Diego (the week before Labor Day), and I like, reeeally didn’t want to miss out. We waited until the very last minute to buy my ticket, though, because I was on oral antibiotics and didn’t know which way things were going to go. It’s hard for me to ever plan travel ahead of time – especially when plane tickets are involved. Thankfully, things didn’t escalate on orals and by the time they were finished I was feeling ready to travel.

… I say “thankfully”, but this is something in life I am so grateful to God for. It’s hard to take risks sometimes, and when you do and it works out better than you had planned, it’s such a cool feeling.

ANYWAY so the trip! We had one night before Josh had to be in SD, so the second we landed we rented a car and headed to San Marcos to see my great-aunt Eileen. Her ranch is one of the more beautiful places I’ve seen and it is always a treat to see it, her cows, and of course her! I wish you could all see this place. It’s unreal.

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In Michigan we get frogs and worms in our pools, but check out this unwanted visitor!

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Again, wish you could see it. She’s probably got a story from a different part of the world for each of the things on those shelves!

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It’s been a few years since Josh and I have been to see Aunt Eileen, and although our visit was brief it was really good to see her. Quite the lady, that one!

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She’s got 9 cows, I believe. This is the only one who felt like hanging out.

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After dinner Josh & I had to hit the road b/c we had to get to Ramona, where we had rented an Airbnb. It was sort of in the boonies and we wanted to get there before dark but didn’t quite make it.

Probably because I kept making him pull over for cactus pictures.

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We didn’t get there in time for sunset, but hoooo man, the sunrise?! Beyond beautiful. You guys, Airbnb is just the bee’s knees. After this stay it is impossible to convince me otherwise. We never would have thought to stay in Ramona without it. Our “cottage” is hard to show in photos, but if you have a few minutes this video will give you a better glimpse – of Aunt Eileen’s ranch too..

Video link here.

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Dead center. See him? #wildlife

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We explored around all morning and then drove into town to see what Ramona has to offer. Apparently there are lots of antique shops and small-town businesses. So, right up our alley. Still sad I left that stained glass piece behind.

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It’s been a while since I’ve had a good shop cat encounter, so thanks Olive. You made my day.

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After a day of exploring it was time to rinse the dust off our shoes and head down to San Diego.

Goodbye little cottage! See you next time…

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So that’s Ramona! We crammed a lot into those 24+ hours in some ways, but there was plenty of porch swinging and hummingbird watching too.

Summer So Far

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How’s your summer going, you guys? I know some of you are probably ready to move on to back-to-school and fall and stuff but that is just never me. The summer feelings are going strong around here! I thought I’d share a few pictures of things we’ve been up to lately.

Lots of swims at the Brandsens’ pool this summer, which we are so grateful for. We like to bring Thomas and Jane to see their fish friends.

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We haven’t traveled much yet this summer, except for going to Florida last month. But really, it’s the best time of year to enjoy the back porch life and I’ve definitely excelled at that. Such a homebody. Plus I caught a cold when we got home from Florida and since then I’ve been fighting off a lung infection. I’m just finishing up a couple of weeks on oral antibiotics and it looks like I might have made it out without IV’s! Very grateful, especially since it’s been six months now since I’ve needed them and it would be a reasonable thing to expect.

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We had record amounts of raspberries this spring/summer, and in desperation I started having other people come pick for themselves. Our freezer can only handle so many! Ha. We’ll see what the fall crop brings, but if you’re a local raspberry lover, let me know. I may need you.

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Book recommendation! I cried my way through Hope Heals earlier this summer and then bought it so I could highlight it/lend it out. You know how every now and then a book will just hit you right? This was that for me. You should read it and see for yourself!

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At the end of July we took our Etsy shop to a market for the first time since summer 2014, and it was so fun! Our pal Joyce has a vintage shop about 45 minutes away in Grand Haven, and she started a market this year with 30 vendor friends. It could have gone either way but I guess it was a smashing success for her, and a definite good day for us too. Yay!

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Lake Michigan in the summer. We haven’t been enough! Hopefully we’ll get a few more shots at it. Josh and Nate bring the windsurfer and/or boogie boards but I like to just swim in the waves. My legs are still sore from swimming in this past weekend’s crazy undertow.

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Peach season. One of the best parts of summer.

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We swam one morning with all of our nieces and nephews, minus baby Clara. So Thomas and Jane (Patten) got to play with Callum and Everly (Brandsen)! Definitely a summer goal met for this auntie.

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I made a video of that morning (of course) because I know even a year from now it’s going to be the SWEETEST memory.

If you can’t see the video, here’s the link.

Back to the peaches, they’re best when enjoyed picnic-style on the front porch. You know.

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So! There’s a little look at our summer.. We just took a gamble (kinda toeing the line with my health) and bought plane tickets for San Diego, so that’s coming up soon-ish. Josh has a conference and you know I love to join in on work trips. Last year this conference was in Atlanta and I’m just realizing I never posted about our time there.. Gah! Somehow I’m always playing catch up on this blog.. Just imagine if I tried scrap-booking.

We Went to Florida – Disney World

The program that Josh works for, Upward Bound, takes a summer trip every year after they finish their 5 week summer program. This year they went to Disney World – 29 excited high schoolers, 4 employees, aaaand ME! I’ve never been to Disney World, plus it was a fun chance to get to know the kids, so I was excited to come along.

This was the first time I had done the summer trip with the kids. Usually they stay so busy that it sounds too exhausting to me, but this year their schedule easily allowed me to sleep in/do my therapy and then meet them at the parks.

There was that 4 a.m. wake-up for the plane ride there tho…

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My self-given “job” for the trip was to make a video for the kids. It was a WEE bit over my head, lol, but I think it turned out pretty good! Check it out! If you’ve been to Disney World you’ll recognize a lot of it. (It is SIX MINUTES LONG so beware)

Our hotel “resort” honestly felt like we had walked onto the set of Saved by the Bell. It was a candy-colored geometric time warp.

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Of COURSE Disney would have cute luggage carts. Of course.

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This is from our first day in the parks, where Josh and I were coerced under peer pressure to go on the scariest/fastest rides. (Hollywood Studios- Tower of Terror and Rock n Roller Coaster, if you’ve been)

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The next day before I met the group at Magic Kingdom, I snuck in to the Little Mermaid ride. Partly thanks to Disney nostalgia, partly thanks to NO WAIT.

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Oh my gosh, it was so swampy hot, you guys. I think this is when Josh & I were waiting for Peter Pan. (A personal fave from early Disneyland days) We spent most of our time on rides with other people in the group but every now and then we did one by ourselves. Group texts and the Disney app kept everyone connected enough to coordinate rides together, which was really fun.

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Small World! Oh geez! The nostalgia! Mary Blair! The song!

P.S. Not to be a snob, but Disneyland is way better for this ride. Just sayin’.

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Everybody said to try the Dole Whip at the parks. It’s soft serve pineapple ice cream, and you can also get it with pineapple juice at the bottom of the cup. May seem like nbd, but after living in a swamp for a few days it tasted like heaven.

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Do you have a minute for a story? Here goes.. I LEFT MY WEDDING RING ON A BUS. It was as dumb (DUMBER) as it sounds and it is a miracle that it was returned to me. Long story, but Esther (a manager at guest relations at the Animal Kingdom) is the most magical person at Disney. (I said that on IG but it is still so true) I realized it right after the bus left (of course) and went straight for help.. After a very unhelpful bus manager kept telling me to “go enjoy the park” while I stood next to him with tears streaming down my face, I got VERY lucky that Esther happened to personally know my bus driver and within an hour they were returned to me.

Undeserved grace. It would be like a bank manager knowing a store employee 20 minutes away. The odds are so against that situation in so many ways, and I’m just thankful. WHEW.

I’ll always love this picture.

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Everything I bought was edible. This is most of it.

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On the way home… “Susann”

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It was a wonderful trip, really. I so loved seeing Josh in his element and wish you could all see how good he is at what he does! You know when you see a perfect fit? It’s just neat. I loved meeting the kids and couldn’t believe how well-behaved and un-complainy they were. They put up with a ton of walking and heat and lack of sleep like champs.

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My last note is to anyone who is thinking about bringing a large group to Disney World.. Save yourself COUNTLESS hours of frustration and stress and let Josh give you advice first! Disney majorly screwed up the fast passes/magic bands for the kids and it was a big bummer and time soak. At this point I’d guess that Josh knows the system as well as any Disney employee. Wish I was kidding. Hehe

At the Cottage with the Brandsens

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Josh’s parents just spent a week at the family cottage that used to belong to Mom B’s parents. I think it has been about 20 years since anyone in the family has stayed there. They have lots of memories here and it was special to go back with a few new people (me, my nephew Callum, and niece Everly).

Most of us were able to spend some time there together (we missed you Jenna!) and I brought the camera so here’s a little taste of cottage life!

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I *really* love this one of Callum. His face! Gah! Kills me…

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Oh, and I made Josh’s mom a video for extra memory-licious-ness (okaay, Johnny Cash & I made her the video), so there’s that. Still working on learning how to use the GoPro and editing software.. Practice makes perfect, right?

Here’s the video link.

 

We Bought a House!

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Josh and I don’t usually go crazy with birthday gifts for each other, but this year (earlier this month) in addition to the standard socks/underwear basics I went all out and bought him… A… HOUSE!

Yup. We bought our house. I mean, we bought it almost 9 years ago, but NOW it’s paid off. Woo hooo! The first thing I did once it was official was vacuum off the front porch – I NEVER do that. Looks like I’ve finally found some pride of ownership. Heh!

I’ve had a few people ask how we got to this point, so for fun I’ve written down a few things that helped us along the way:

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First, we took out a loan based solely on Josh’s income. We chose a house that wasn’t at the high end of what we could spend. Some of you could probably pay off our mortgage way faster than we did, but it was a good amount for us.

We live in a small house for our area in West Michigan. That comes with some inconveniences, like being limited on space for things like clothes and general stuff. While it can feel inconvenient it teaches us to simplify life (and helps keep us from over-buying). It is a constant tension but I think overall it is a good thing. It seems like our culture is constantly telling us that along with needing more things, we also need more space. We for SURE can’t share a bathroom sink (LOL). We’ve learned that it’s okay to think differently from that. Feels weird at first but it gets easier! I still want a second bathroom though. I’m not a martyr.

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We have a history of driving cars that are suuuper old. Like, we bought my grandpa’s ’91 Buick from his estate when he passed away and we (okaayyy mostly Josh) drove it for several years. It was technically old enough to sell in our Etsy shop! I mean I think it’s pretty obvious, how much money you can save by driving inexpensive cars. We’ll never have a car payment, nor will we ever have a brand new car, and we’re good with that.

We are in our 30’s and we don’t have kids which is different from many of our peers, so of course we don’t have those expenses.

We aren’t big spenders. This is largely Josh’s influence on me, as I could easily be encouraged to spend more, in just about any category. He actually tells me to buy whatever it is I’m wanting (sorry girls, back off, he’s MINE) so his influence isn’t in what he asks of me, but more of leading by example. Howevs. If I were a big spender I’m pretty sure he’d stop saying, “Sure! Go for it!” so there is teamwork in here somewhere…

Every now and then when I’m leaving my hair salon (yesterday) I wonder how much money I’ve saved over the years by not coloring my hair. Juuuuust sayin’. My biggest reason for not doing it is sheer laziness – I cannot imagine having to keep up with roots growing out. (Props to all you salon-punctual peeps.) Probably the second reason is because I think it’s good for women to know they don’t need to do it, and the third is YES it saves money!

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We refinanced our house approximately 500 times over the years to get down to the lowest rates/time tables possible. When we refinanced we would make sure that we kept the original time table (or lessened it) and we ended up on a 10 year mortgage.

We have side jobs – including our Etsy shop which is responsible for a large chunk of the last payment we made (although it made my “magic money” PayPal account disappear – GASP!). Since my regular job is part-time and Josh works in education, we’ll never be rolling in “large” paychecks.. Side jobs in our household really help contribute.

We had good financial advice when we bought the house. Josh had a small amount of college student loans even though he had the money in the bank from working through school. Because the interest rates for student loans were so low it made sense to use those and have his money available for a down-payment on the house. Kinda topsy-turvy but it worked in this situation. THEN because he teaches in a qualifying job, the government forgave his leftover debt after he worked in his job for 5 years. We were so grateful for that!

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So there you have it! Writing this post actually felt a little funny, kinda braggish or weird and I don’t want it to. Many times the news you get from our household is asking for prayers for one reason or another (usually when I’m sick) and it does bring me joy to share this happiness with you. We are grateful to God that while our lives have their fair share of hardships, at this point finances aren’t on that list. I hope if finances are something you are struggling with that this can be an encouragement to keep going, and if you’re not struggling then we could like high-five or something?

 

 

Clara Frances Patten

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Cute baby alert!

Yes, there is a new baby in the family. Clara Frances Patten arrived on April 16th, 2016 and started charming us instantly! She’s the third baby for my brother Mark and his wife Jess, and her older brother Thomas was pretty enchanted from the start. Jane needed a few more minutes but she got there. It didn’t take long to love baby Clara.

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Jess had a difficult pregnancy with debilitating headaches (this is minimizing a lot!) and three months later she is still struggling with them. It has made the road much harder for this little fam than anyone would’ve expected (and I’m sure she would appreciate your prayers) … But every time Jess mentions anything about Clara, her voice softens and she lights up. It’s pretty sweet.

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Here’s a couple pictures from Mother’s Day in May (Josh decided to dress for the occasion, haha).

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Clara was the only person who was completely oblivious the entire time. One month old and definitely the chill-est one of the bunch.

By far.

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The camera came out again for Father’s Day in June. We had new “jerseys” made for SOCCBEE (soccer/frisbee, yuup), the backyard game of choice for these Patten/Brandsens.

Look at Clara’s little bum! He he! So cuuuuutee

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Cute stuff, huh? We talk a lot about how she looks like a little Thomas, so much that Jess likes to keep a bow on her head or she gets bizarre flashbacks. She’s starting to come into her own, though, (she’s getting good at smiling and cooing and melting hearts) and I’m just guessing our comparisons with Thomas will be ending soon.

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Team Shot!

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Welp, that’s all for today! Mom and I are off to take Thomas and Jane to my in-law’s pool. Thankful to live near both families on this hot summer Tuesday.

We Went to California – Newport Beach

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Less than 24 hours in one of your favorite places? No problem. Step 1: rent an Airbnb with access to bikes AND a 25-yard pool. Step 2: Use it all. Step 3: Dip your toes in the Pacific and pack your bags for home. Check, check, check!

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We spent the last night of our CA trip in March in Newport Beach, partly because we love it and partly because of the proximity to the airport. Use every minute of vacation, I guess?

As soon as we arrived, we hopped on our bikes and rode to Charlie’s Chili on the pier, a family favorite. It was a little chilly (heh) outside but perfect for a hot dinner and a bike ride. It was our last chance to dine al fresco, complete with all the people-watching we could want.

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I made a little video of our boardwalk bike ride, check it out! (Anyone else LOVE this song?!)

Here’s the video link for mobile devices.

The next morning we got up bright and early and hit the pool for a morning workout before a day of travelling. After I snuggled the bougs on the patio for a while, obvs.

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We didn’t have a kitchen in our Airbnb so we hunted down some coffee and walked to the beach.

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One last glance at the patio, we left our twizzlers and peanut butter with the hosts because we had to make room for Josh’s cacti collection from Joshua Tree. Srsly.

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Aaaaand that’s that! (Except for the cancelled flight and “bonus” night in Dallas, but we all know how those stories go) Thanks for letting me share some stories from our CA trip, guys!

For more on this trip, also see Joshua Tree and Palm Springs.