25 July 2013


I've been brainstorming, ideas for my big birthday that will give back. Ways to remind myself we are all in this together. We all have obstacles, but in the same breath, we all have avenues at our disposal to lift each other up. Our stories often intersect and the beautiful pattern of that is astounding and so very, very powerful.

I have mentioned this a little bit before, but over years in my journey with all of my health adventures, I have witnessed too many young adults with Cystinosis pass away short of the blessing of seeing their 30th year. Growing older is a privilege denied to many. I pinch myself each day I wake up alive. The truth is, none of us are guaranteed tomorrow. All of this has propelled me to move with kindness into this next phase of my life, to soften my rough edges, to look outward and see what I can do to help.

Let's spread some love, shall we?

If you would like to participate in my #30acts of kindness on Monday, August 19th, the more the merrier! You can be a part of it wherever you live. It is going to be a fabulous day, I'm so excited!

Basically, I simply want to spread love and kindness that day. You can do however many random acts of kindness you want, on whatever level you choose. A few ideas include: paying for someone behind you in a drive thru or grocery store, babysitting for someone for a few hours for free, taking toys and arts and crafts supplies to a children's hospital, giving out flowers to people in the hospital who don't receive a lot of visitors or are having a particularly difficult time, leaving notes of encouragement on random windshields in a parking lot, etc. There are plenty of things to do that won't require you to spend money! Please feel free to spread word about this project on your blogs as well! You can share what you do on facebook and instagram with the #30acts hashtag. I realize it won't be completely anonymous if people are taking photos and sharing what they are doing, but I think it will be fun to see where this day can take us, what a little sprinkle of kindness can do, and what a ripple it can create.

Let me know in the comments if you will be joining me on this day and share any suggestions you have for acts of kindness. We are all in this together!


I also wanted to share that today is a special day! My post, "Don't Waste Your Motherhood" is featured on the front page of BlogHer. I'm honored and thrilled! Check it out over there and leave some love. Thank you friends!

22 July 2013

How To Make An Air Conditioner In 5 Minutes

This summer has been filled with record breaking heat all across the U.S. Rory put together this little guide last month and I wanted to share. I can't stop thinking, "Wow!"

Let's do it!

Step 1:
Get your supplies together (the drill is optional because you can easily cut the styrofoam with a knife.)

Supplies -
1 personal fan ($10) or use an old one
1 styrofoam cooler ($5)
Strong tape (I used gorilla tape)
Pipe fittings (I used a 2" connector piece ($2)
Old paint can

Step 2:
Drill or cut a 2" hole on the top/side of the cooler (or anywhere toward the top)

Step 3:
Screw the PVC pipe fitting so half is inside and the other half is outside of the cooler.

Step 4:
Place a paint can on the top (this can be matched almost perfectly to the fan size) cut it like you are carving a pumpkin; at any angle so the top doesn't fall through.)

Step 5:
Put the fan inside this hole, use your tape to secure it in place.

All done! Now, simply add ice or frozen ice packs!

I used frozen ice packs (as we have tons from my cysteamine eye drop shipments from the NIH in Maryland) and they do not create a mess when they melt. As an added bonus you can store drinks inside too! Great for camping, picnics, etc. You could even use a fan that runs on batteries. :)

Happy Monday!
We hope this helps you stay cool this summer.

18 July 2013

{guest post} a love letter.

Happy Thursday! I am so honored to share with you this special post from my dear blogging buddy, Katie from Loves of Life! I'm out of town on adventures with Sookie and sweet Katie not only stepped up to my request for a guest post, she went above and beyond with the challenging subject I threw at her. ;) 

Enjoy and perhaps write yourself a love letter too.


When Tahnie wrote me and asked me to guest post my first instinct was to say no. This has nothing to do with sweet Tahnie, in fact, I adore this lady and her sweet blog. I just thought, I'm hardly writing in my own space lately, would it be right to do? I also thought of the million and one excuses about being busy, and having so much to do between my work at home gig, my kids, church stuff, and you know, regular life. Then I snapped out of it and remembered who we were talking about here.

Tahnie. Sweet, amazing, fighter-of-a-fighter, Tahnie. The lady who defies all odds all day, every day. The one who is a walking miracle. Who gets to enjoy the presence of her sweet and spirited Sookie. Who makes no excuses.

So I said, Ok, girl. For you. And then I said, but what would you want me to write about? When she simply wrote back, A love letter to yourself.

At first I laughed. UM. Whhhaaaa? 

Then I thought, alright, put your big girl panties on, Katie. You can do this.

So here it goes.


Katie, Kate, Momma, Mom, whatever-it-is-you're called these days....


It feels weird writing you a love a letter, I'll admit. But I'm going to keep this simple and to the point. It's so, so easy to be self deprecating. But why, oh why is it so hard to tell yourself the wonderful, positive things sometimes?

But here's the thing, Katie. You are so beautiful. Do you know that? The makeup, the hair curling, that's all extra. But you're beautiful just being you. You often think your insides aren't as pretty as they should be. Of course we could all use some work on heart issues---but girl, you're more beautiful on the inside than you give yourself credit for. Your heart is inherently good. You have pure motives. You love people. You love your family fiercely. You have strong convictions about injustice. You love God. You want to live this one life fully.

You know, your outsides are beautiful, too. Actually, the entire body transformation that you went through---losing so much weight, being determined to be healthy and strong and set an example for your daughters? It's awesome, and I'm damn proud of you for that. It's so hard to stay on the straight and narrow healthy path. It's so hard. But you did it. You're a success story. I love that you care about bettering yourself. That you disliked something that made you so uncomfortable (being overweight), and thought, I'm doing this...and you DID. So many people give up. You didn't, Katie. I love that about you.

You know what else I love about you, Katie? You're loyal. When you say you're going to do something--you can be counted on. You aren't flakey. You show up when you say you will. In this life, dependability can be sparse, but you--you are dependable.

I love that when you became a mother, you unleashed this whole other beautiful-mess side of you. It was like the secret garden of your heart that you didn't know existed, and couldn't, until those sweet babies were placed in your arms. It's often messy, but that doesn't matter. You're a good mom, no, a great mom. Know that in your heart.

I like you. No, I love you. You're good, you're more than enough.



I have to be honest, I'm not sure I'd ever do such a thing if Tahnie didn't mention it. It's actually a stretching exercise :) It's totally weird, but, picking out the good things in you versus the easier, opposite way, of talking about your failures instead is kind of refreshing.

15 July 2013

hello monday: 14,000 things to be happy about

Hello Monday!

Hello to yummy homemade popsicles with sneaky healthy ingredients that still make her smile.

Hello to new adventures. My new approach to this whirlwind life; it won't be perfect, but it will be an adventure. It will be interesting. It will be a learning time. It will be fun.

Hello to pancakes and deciding to put ALL the fruit in them; blueberries, strawberries, bananas. Why not?

Hello to the chaos of the splash pad on 100 + degree day. Hello to the wonder woman.

Hello to baking cookies and letting go to embracing the epic mess and memories when it turns into a mommy and Sookie flour fight.

Hello to mermaid hunting with Poppa.

Hello to this Saturday morning scene.

Hello to the valuable life lesson that cousins make the best friends.

Hello to the beauty of being alive for another day, organic raw honey in coffee, stuffed animal bulldogs in nightgowns and pearls, the strength to snap my fingers while dancing.

Hello to this angelic face being a huge motivator to keep moving on our nightly walks. Her spark could propel me anywhere.

Hello to the bizarre feeling of actually saying no for once to things you thought you were obligated to do. And in the process, learning a lot about your authentic self.

Hello to a unicorn up against a bright blue July sky.
(Kelle Hampton needs this charm, no? ;)

unicorn charm from glockets.com
20% off your entire order with code HAPPYGIRL

Alright, my list here isn't quite 14,000 things but it is a good happy chunk!

What 14,000 happy things are you saying hello to this week?

05 July 2013

By God, There Will Be Dancing.

The past few weeks I've been struggling. The heat, it does a number on me. My body cannot self regulate my inner temperature and so five days of 100 degree plus temperatures is enough to cause serious havoc. Even if I'm simply outside for 15 minutes. Health related stress and worries, like growing impatient for experimental studies to be approved for growth hormone treatment for muscle wasting. I want to try anything, because at this point in my life...I know what happens if I don't. I'm ready and willing to take huge risks and see what could possibly help or slow down the progression. Rory is absolutely outstanding and has been working insane hours revamping his most popular app. It has all kind of twisted together to create the perfect storm and I'm in a little bit of a funk. I've always approached honesty and hardship with a tell it like it is kind of attitude. And perhaps that isn't the best way to go about living one's life, however I feel like there is such power in the truth, no matter how messy.

Sometimes people I've never met sneak into the chambers of my heart, read the writing all over, and say what I ache to say. The following is an excerpt from Glennon Melton's INCREDIBLE book, Carry On Warrior. It completely shattered me and lifted me up...in the most gorgeous way possible.


God keeps knitting. Then she smiles and holds her stitch for a moment. She looks up at me with her soft crinkly eyes and she says:

Honey. You are so angry. I understand. I love you so much. Would you like me to stop knitting so that we can talk about all of this?
I think for a minute and look at her knitting in her lap. I gaze at the part that's done. It's breathtaking. All blue and green and hot pink and gold and silver. At first the colors seem to swirl wildly but then, suddenly, I recognize a pattern. The pattern is me. I am beautiful. Swirly, wild, and beautiful.

No, I say. Don't stop. Keep knitting.

Because she is knitting my life, of course. am what her hands are working on. And I want her to concentrate. I still trust her.

God? I say. I'm going to dance. While you knit, I'm just going to dance.

God looks up one last time and says:
That's all I've ever wanted you to do, Sweetheart. You dance and I'll keep knitting. It's going to be beautiful, Honey. I promise.