Another

Finn began showing signs of shunt malfunction when he woke up from his nap yesterday afternoon. I took him to the dr to rule out infection because his nose is really plugged. Last night he got worse and cried every two hours. He digressed much quicker this time than last time. He was hanging his head backward early this morning–the only position in which he could find relief.

I can’t begin to relay to you the misery that comes with watching your child suffer and not being able to do anything…unless you’ve been there yourself. This was the worst we’d ever seen him. He threw up on the way to the ER, went completely limp and toward the end of today he was even unresponsive when they’d pry his eyes open. They were shouting his name to keep him alert; heart rate and blood pressure all over the grid. We just watched through tears. We asked how “unresponsive” does he have to get before this is considered a true emergency? They said when he stops breathing. Have you ever waited for your child to stop breathing? Well, it’s maddening.

He is finally out of surgery. There was 100% blockage in the brain catheter. All went well…we’re just hoping this one lasts longer but the surgeon admitted it may not. That’s the nature of shunts. They malfunction.

This sad news and Finn’s uncharacteristic behavior made us realize today how much our son’s life depends on this device.

Joey’s parents came down from Tulsa to hold our hands. My parents were dying to be here too.

He’s sleeping now. Please pray for quick recovery, no subsequent infection and a much longer length of time until next revision.

Scary, hard day. Oh, and it’s Joey’s 30th birthday. Sorry, babe. We’ll celebrate another day.

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Out of These Ashes

photo-200Isaiah 61:3

To all who mourn in Israel, he will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair.

I’ve always connected with this verse for many reasons–one of them very selfish–I find my name within its text. Ashes. The idea that God offers me beauty  instead of ashes (myself) makes me smile. Sometimes I don’t feel so beautiful, inside or out. Tuesday morning I woke up ugly…I was mad that Finn got up before 6:00am for the third week in a row. Mad at Jersey for flapping her ears too loudly. Mad at the toast for being too dry. Mad that my son has Spina Bifida. Mad that he has to wear AFO’s and that his Tiny Tom’s don’t fit over them. Mad at my dashboard for being too frosty and mad at every car in front of me that was going too slowly. I was exhausted and couldn’t, for the life of me, find beauty in my day. Only ashes.

After a too-short lunch break, I was heading back to work to train three more clients and teach a class. Zero energy or creativity left to give. As I was pulling into the parking lot, Shawn McDonald’s Rise song rang out through my speakers. I turned it up and sang along.

Yes I will rise, out of these ashes; rise.

From this trouble I have found and this rubble on the ground; I will rise.

Cause He who is in me is greater than I will ever be, and I will rise.

I so needed this little reminder that it is HE who makes me beautiful. He sweeps the ashes from my heart and provides “festive praise” instead of the despair I so often feel inside.

Where You Shine

photo-198All Sons and Daughters performed a concert at our church this evening. They are this hipster man and woman team, Leslie and David, accompanied tonight by a talented cellist named Cara with cool bangs. David plays the piano and sings with a smooth, raspy voice. Leslie strums the guitar with grace and groove, and the purity of her voice is so easy to listen to. It reflects her beautiful heart. Joey orchestrated the concert, and it was so fun to see it all come together. Finn and I were deemed cool enough to join them all for lunch at Victoria’s. Fun people. Yummy food. If you’re not familiar with their music, I suggest listening to their album, The Longing.photo-199

As I was sitting at a stop light on Main St. after lunch, Finn babbling in his car seat, I watched a blind woman walk down the sidewalk with only her white stick to guide her. I was amazed at how brave she was to walk completely in the dark, trusting the touch of her stick to keep her away from passing cars and dog poop. I was in awe. I thought about how sometimes I think I’m in the dark. Like how it’s difficult to trust the unknown future, to step forward in uncertainty. I wish I had her kind of bravery.

This scenario fit well with one of my fav songs by All Sons and Daughters, “Oh How I Need You”:

Light glorious light
I will go where You shine
Break the dawn , crack the skies
Make the wave right before me
In Your light I will find
All I need, all I need is Youphoto-197

Equipment

Well, we have entered the world of orthotics. Here’s a look at Finn’s “headgear” of sorts…the equipment that will make him clunky and awkward but hopefully better because of it:

The Standing Framephoto-192photo-191

The doctor warned us he may cry the first time we fit him into it, as it will be an unusual sensation for him to be upright on his own. Finn just grinned…and clapped, actually. The doctor called in the nurses, secretaries and even the technician who made the frame to see this sweet little guy smiling and clapping for his new toy. This little ditty will help put much-needed pressure into his joints and bones to increase their density and cause them to develop properly.

The AFO’s (Ankle Foot Orthotics)photo-193photo-194

These keep Finn’s feet straight and his ankles at the right angle. They are clunky and turned his feet bright red the first few times he wore them. He’s supposed to wear them most hours of the day…it will take a while for us to get used to these. Putting jeans on him is even more of a chore and they ripped my shirt while I was holding him.

Kayla and Caleb, Truett/Baylor buds, came from Kansas City to visit this weekend…way too short…only Friday night, but we are thankful they made the trek to meet Finn and let us hug Kayla’s pregnant belly. She’s glowing and due in March (only 4 days away from Finn’s original due date)! These friends are like family to us. We talked baby carriers, cloth diapers, played Spades, Settlers of Catan (Caleb won–he cheats) :), went on a long walk, devoured a gourmet cheese platter from Forward Foods, and ended the night with sliders at S & B Burger Joint. photo-190
Thankful today for cumbersome equipment that will give Finn a chance at walking and friends who care to cheer him on.

A Standing Ovation

photo-189I finished reading the book, Wonder, by R.J. Palacio last night. Joey’s sister, Leah, got it for him for Christmas. She is a reading whiz…seriously, she’s read just about every book ever published and finishes the page before I even turn it. This New York Times Bestseller is the fictional story of August Pullman, a fifth grader born with a facial deformity that kept him from venturing into public school–until now. His humor, honesty, vulnerability, heartbreak and quest for true friendship is captivating. If I wasn’t a multi-tasker, I would never have put the book down. You MUST read it!

I connected with Auggie’s parents’ tension between wanting him to become independent and embrace his uniqueness and the fear that he would, like so many other instances, be rejected and made fun of. Because kids (well, people, really) can be mean. I know I was…sometimes without even intending to be. I still regret making fun of a girl’s stinky feet in the 8th grade locker room. I’m pretty sure it made me feel better because I was a sorry excuse for a point guard.

Without ruining it for you, the ending is precious. Auggie learns the value of friendship, kindness and bravery and is honored because of it. Of one my favorite quotes:

“I think it should be a rule that everyone in the world should get a standing ovation at least once in their lives.”

I agree; don’t you?

If you were to receive a standing ovation, what would yours be for? I’d like to receive a standing ovation for a great meal made for great friends. Or for a mind-blowing spin class. Or when I was an English teacher, I imagined the students giving me a standing ovation for the Great Gatsby lesson I spent hours planning. Didn’t happen.

If Finn gave me a standing ovation (at any point in his life), I’d pee my pants with delight.

Fitness Tips From a Trainer 2013

So in honor of January’s capability to inspire physical fitness and renewed healthy living habits, I’ll play personal trainer for this post. Here are some of my most favorite fitness tips:

1. No gym membership or personal trainer? No excuse. Take your kids/dog/cat/fish on a walk…a long walk. Upgrade your walk to a jog when that gets easy. Too cold or hot? Try this Living Room Workout:

15 jumping jacks

15 burpees (see Youtube if you’re not sure how)

15 push ups

Hold plank 30 sec.

30 sit ups or crunches

15 squats or squat jumps for higher intensity

15 dips off a chair or coffee table

30 sec. of jump rope or high knees

Repeat 3-5 times.

2. Park far away.  Only pregnant women and the disabled are exempt.

3. ALWAYS in EVERY circumstance, take the stairs! Same exemptions apply as #2.RI-Ave-Stairs-3

4. If you are not uncomfortable at some point in your workout, you’re not working hard enough. Many newcomers to exercise start to feel uncomfortable and think they’re dying or that something’s terribly wrong…it’s not! Your body’s just not accustomed to working hard. Work toward discomfort (not pain). Let yourself panic a bit, then get over it and keep working. THIS is where you’ll see results.

5. Make it your goal to perform as many pushups as your age every night before you hop into bed. Once you make it to 60 years old, I’ll let you decrease in number (i.e. a 61 year old can do 59 push ups). Girls included.

6. Change it up. Doing the same thing will give you the same results. Do your running route backwards, move faster, do your reps slower, look up new exercises on YouTube, register for a race with a friend…

7. Get a big dog. She’ll make you run. photo-100

8. No diet drinks! See this article for more info on that: Diet Soda Danger.

9. Don’t deprive yourself of every food you love. Dieting generally doesn’t work because you can’t sustain it. If you’re having a hard time with moderation, some of my clients find it helpful to have ONE cheat day where they eat or drink what they want and are “good” on every other day.

10. Don’t go longer than 4 hrs without eating…unless you’re asleep.

11. Make a playlist with upbeat, fun tunes that will drive you forward. Music helps motivate.

12. Got this idea from Pinterest: tip yourself a dollar each time you workout…save up for something fun.35114072065281312_gSTHpIbe_c

13. You need accountability! Tell your goals to your spouse or a friend. Write them on that cute chalkboard in your kitchen. Hire a personal trainer (I’m biased…). Tell your kids–I’ve heard they’re brutally honest. 🙂

14. When you mess up, don’t dwell on it. DO something about it. Throw away the processed food in your pantry (or better yet, give it to a food bank). Go exercise. Beating yourself up about it just cycles the unhealthy habits.

15. I’m one of those few freaks who actually finds it fun to sweat and push myself until I’m uncomfortable. If you’re not one of my kind, make sure what you do to workout is FUN. Zumba, ballet barre classes, tennis, racquetball, swimming…whatever; just do something that you can fit into your lifestyle. If you hate running, don’t do it just because the other moms are.IMG_1595

Hope these help you develop a healthier you.

Crawling

So apparently a ten month old should be crawling by now. We’re first-time parents, so if we hadn’t been interacting with the outside world, we’d think Finn was doing just fine. But, the truth is, he’s not. He just recently accomplished sitting. He’s not crawling and not close, really. This was especially clear at Christmas as we watched cousin Everett cruise around the room on all fours, up a couple stairs, and “walk” himself along the couch. Amazing!

I’m trying to be tough, but I’ve got to tell you, it’s heartbreaking to watch him try move on his tummy. His upper body is so strong, but those legs are heavy to drag across the floor. Trust me, I’ve tried it myself. It is so frustrating! Feels impossible. It’s not impossible though; we’re learning new techniques with our Sooner Start therapist and we’re dedicated to practicing every day for at least 30 minutes. What should come naturally to a baby just won’t for Finn. It will take lots and lots of practice for him (and for us).

Finn’s personality is laid back, and he’s not too motivated by toys. So tonight we used a graham cracker to entice him to crawl.photo-185

It worked a little better than the stacking rings, but when we left the room to allow him to get frustrated and try on his own (one of the techniques), he just escalated into a blood-curdling scream for several minutes. Breaks my heart. Not fair. photo-186

We’ll try again tomorrow, Finn. You’ll get it baby.