A Kidney For Shea

This Christmas season I'm praying and hoping and wishing for miracles for people who are dear to me. People who have stolen my heart with their compassion, kindness, and zest for life. Shea is someone I am hoping gets a Christmas miracle. I'm sharing this today because all it takes is one person. One person to step forward to save a life. 

Shea is someone I have grown up with over the years. Cystinosis brought us together, however we have had many memories and laughs together that are stronger than any disease. He is one of the most caring people I have met in my entire life. He desperately needs a kidney. This will be his third kidney transplant and because of that, finding a donor who matches him is proving incredibly difficult. 

The following is from the Kidney For Shea Facebook page. This is from Shea's dad, Jack.

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My son Shea was born with a rare genetic disorder called Cystinosis and a life expectancy of 8 years. He was connected to pumps 24 hours a day, survived several near death episodes and more than 30 surgeries/ experimental procedures during the first 10 years of his life. He toughed it out, pushed on, and beat the odds. Colleen donated a kidney to him during High School and I donated the second when he was in college. Shea's kidney failed last summer and he has been on dialysis since then. 80,000 people require kidneys today, only 17,500 will get them this year. The wait at MGH (without a donor) is 5 years. Only 31% of the people who stay on dialysis will live, while 81% will survive with a transplant. Donating is a lot easier than you think, We both healed up very quickly, and I deployed to Afghanistan 18 months later. Colleen and I gave our spare kidneys, so we are out, so we now need your help. Please share this page with everyone you know, We have set up for possible transplants at MGH, Johns Hopkins (DC), and Florida Hospital (Orlando). The contact info to look into donating for each site is below. Thank you for helping to make our Christmas miracle come true.

If you are interested in being tested to see if you are a donor for Shea, please contact one of the 3 centers below. Shea's blood type is A+ and his kidney donor must have an A or O blood type.

A good living donor candidate is someone who is healthy, well-informed and makes a voluntary decision to donate one of their kidneys. Living donors must be over 18 and usually under 70 years of age. They must be in good general health, have a Body Mass Index (BMI) of less than 30, a non-smoker, with no evidence of significant high blood pressure, diabetes, cancer, kidney disease, heart disease or hepatitis. Living donors can live in any state and it is important to know that all medicals costs are covered by the recipients health insurance. As you might imagine, donating life to another is a remarkable gift that takes a great deal of thought that can only be obtained by being well informed.

Massachusetts General Hospital - Boston, Massachusetts
Donor Intake Coordinator
877-644-2860
Patient: Shea Hammond

Johns Hopkins Hospital – Baltimore Maryland
Donor Intake Coordinator
410-614-9345
Patient: Shea Hammond

Florida Hospital – Orlando, Florida
Donor Intake Coordinator - Gladys Malouf R.N.
407-303-3624
Patient: Shea Hammond

Hello Monday: This Whole Town Has Swallowed Some Magic

Joining up with Lisa Leonard again this week for the Hello Monday blog prompt! I love this series and the bold inspiration behind beginning each week with crisp motivation and hope.


Hello Monday!

Hello to childhood and Sookie requesting to wear her swimsuit in the bath tub. I responded with, "Why not?"

Hello to a girl and her kitty.

Hello to being 31 years old and still getting excited about bacon and eggs in the morning. And coffee! Always coffee.

Hello to new ideas and fresh creative outlets. I'm grateful for the vast opportunities to express myself. Even if that sounds super corny.

Hello gummy bears driving toy cars. Her world is magnificient and her imagination is stellar beyond words.

Hello to the new routine of playing at the park for a few minute before school starts.

Hello to crying over a light up Frozen journal at Target. Because it was simply one of those moments were life, beautiful, crazy, miraculous life rushed in on you and you are overwhelmed with gratitude to be standing at Target on a Sunday night doing Christmas shopping.


Hello to my beautiful and brave friend Ashley Hackshaw aka Lil Blue Boo wearing her today is a miracle tee. She posted a poem along with this photo and it absolutely floored me. Goosebumps were rampant.

Hello to Christmas music being played nonstop around here. My favorites today consisted of the Sugarland creation, Gold And Green, and a classic that reminds me of my childhood, Alabama's Christmas. Thistle Hair The Christmas Bear? Oh it tugs on the heartstrings every single time.

Today Was Never Supposed To Happen. And Yet It Did.

Thirty years ago today I was diagnosed with Cystinosis. I was 16 months old. My parents were told by doctors that I would not live to see my 10th birthday.

Today I shipped out shirts from the shop I started to celebrate 20 years since my kidney transplant. Today I was a mom. Today I did laundry. Today I played zoo keeper to our one dog and two cats. Today I posted gLockets promotion holiday sales on our social media accounts. Today I went to lunch with my dad. Today I did dishes. Today I chased my girl around the house and patiently asked her to get dressed for the 11th time. Today I cleaned our house. Today I took heavy duty albeit very pretty pink and red heavy duty antibiotics to treat the nasty infection that resulted in a second root canal yesterday. Today I captured our odd defying girl jumping in puddles in her red rain boots.

Today I took deep breaths at Target during the onslaught of people caught up in the Christmas rush. Today I drove my new to me 2005 Touareg and thought about how thankful I am that Christmas came a little early and I won't be getting stranded on the side of the freeway again anytime soon because of my car breaking down on me. Today I watched our girl focus so intently on squeezing the frosting out onto her gingerbread house so carefully. Today I had a wild dance party in our kitchen. Today I helped our girl pack for an imaginary trip to Hawaii. Today I worked on a secret Christmas gift for Rory.

Today was never supposed to happen and yet it did.

There are so many misconceptions out there about Cystinosis. About bleak and incorrect assumptions that make my heart hurt. We can never predict what anyone's life will be. Even when they are erroneously grouped into the same trajectory of life because of the same shared faulty DNA. One thing that is incredible important to me is to change the way people think of Cystinosis. It is not a death sentence. It doesn't have to change anything. Except for perhaps the beauty you are open to see.

IKEA Soft Toys For Education

There is no doubt education is a powerful and transformational experience in our lives. Think about your happiest childhood memories, probably several of them occurred in the environment of elementary school. Think about the moments when you began to realize your own potential. The moments of your young adult life when you discovered an innovative idea that sparked something deep within yourself. A myriad of these milestones happen within the context of a learning environment.

The history of my own education is significant in the grand theme of my story. It has assisted me in overcoming so many obstacles, even when it was part of the detour on my own path. I went through my kidney transplant in elementary school. I only missed three weeks recovering before I went back because I was bound and determined not to let it slow me down. The doctors estimated I would need at least six weeks before I would be ready to return. Fast forward to junior high and high school, I faced many health obstacles because of side effects from the transplant and missed a lot of school. I knew I wanted to go to college someday and I kept pushing through the challenges. My passion to expand my own knowledge assisted me in many other facets of my life.

I have seen the power of education play out in my life and the lives of others. I feel that when you throw yourself into your own education, you better yourself by believing in something bigger and better. Because of this, I love that for every soft toy and children's book purchased from now until January 3rd, 2015, The IKEA Foundation is donating $1 to UNICEF and Save The Children. This goes for online sales as well! This project is solid proof that working together we can all make huge changes for the greater good.

I have learned so much about the tremendous strides IKEA has made in terms of providing better education to children in dire need. By giving them these often new opportunities, they are not only giving these kids motivation to reach higher in their own lives, but they change the course of their entire families as well. The IKEA Soft Toys For Education campaign started in 2003 and has enriched the lives of more than 11 million kids living in Europe, Africa, and Asia.

I was selected for this opportunity as a member of Clever Girls and the content and opinions expressed here are all my own.

Christmas Magic And Happy Tears

On Tuesday, the happy tears came often. It was a family day of fun filled Christmas memories. I will never forget an ounce of it. I cherish the days when we can simply be together and the rest of the world fades into the background. These times are rare and much needed as the chaos of the holiday has us all hustling with gLockets orders and now this year, tee and tote orders. I'm grateful for the opportunity to navigate the balance these adventures require! The sight of Sookie watching with glee as Rory dressed up as Santa for a fun photo shoot? Priceless. Cue tears. I love the idea behind Fotofly Santa. Parents can dress up as Santa to prevent stranger anxiety. I knew Sookie would be fine with the real Santa, but a Daddy Santa added that extra bit of sentimental that I was craving. Downright brilliant. If you are in the Utah area I definitely recommend it!

Our girl giggling as she was petting reindeer? The sweetest. Her school Christmas program was that afternoon. She stole the show, of course. Complete with dance movements and knowing every single word of the four songs her class performed. The encore was This Is My Wish by Jordin Sparks and I could not hold the tears back. A group of 3, 4, and 5 year olds singing This is my wish, my wish for the world, that peace would find it's way to every boy and girl. This is the time, the time for harmony, let love be the song that everybody sings. 

Making sure her childhood is filled with whimsy is oh so important to us. With everything we've been through to get here, every laugh out of her sweet mouth feels like a celebration. Every morning since our elf, Flower Ella arrived, she's up early ready to go on a treasure hunt for that silly creature. So far we have found Flower Ella sitting on a chair made of legos, bathing in a giant bowl of gummy butterflies and jelly beans, and going for a ride down the stairs in a roll of toilet paper. I want her to carry that spark with her every single day, and well into adulthood. To see that magic lives within all of us and when we are in tune with it and share it? That is how the really good stuff happens.

I've been looking back at this past year and thinking about how far I have come in my own personal journey...and how far I still have to go. The triumphs will fuel me to continue forward into 2015. Last year at this time I was nervous for a CT scan at a cancer speciality hospital here, and after the tough times of last fall, I simply wanted them to say everything looked normal. And it did. I've had that cancer scare so many times already, because of my exciting health adventures it is always something I'm more at risk for, but it doesn't get easier. I'm beyond grateful this year did not include a lymphoma diagnosis. How's that for incredible?!

This girl is healthy and happy! She's such a miracle and it makes my heart burst wide open.

You're Stronger Than Your Faults

Hey you.

Yes, you.

You're fantastic. You're doing your best. Your best will vary slightly from day to day depending on several factors. If you have a not so stellar day, dust yourself off. Try again tomorrow. Keep aiming for your shiniest.

You're stronger than your faults. And you're bigger than your obstacles. Your shortcomings are where your strength can truly showcase itself.

Yesterday is gone. That is okay. It is more than okay, it is actually in fact perfect, because you're in today. And today is where the magic happens.

5 Ways To Give On Giving Tuesday

Now that Black Friday and Cyber Monday have come and gone, I'm thrilled to focus on one of my favorite things... giving. I'm excited to be celebrating Giving Tuesday today with Give Forward. I love what they do and the avenue they provide for people to help people. Often times in a medical adventure there are so many who want to help, but really don't know exactly where assistance is needed most. One of my favorite things about Give Forward is that it is so easy for one person to make a significant different in someone else's life simply by setting up a fundraiser for them. Taking that step and putting such good out into the world is unbelievably important.

Giving Tuesday is about making the effort to give, in any way that you can. It is about stepping up and paying it forward, instead of assuming someone else will. It is about making a difference and motivating others to do so as well. Leading by example has such a fantastic ripple effect.

An incredibly substantial concept for us to teach our daughter is that giving is always better than getting. I want her to realize her own power and use it for good. Helping others, spreading kindness, and stepping up when it is needed are all values I aim to instill in her little heart every single day. I don't want her to be a bystander. I want her to be a difference maker, because she is.

Last year to celebrate my 30th birthday, I set out to do 30 Random Acts of Kindness. To share ideas and motivate others to join me, I also shared my 50 Ideas For Random Acts Of Kindness list here on the blog. It is one of my all time most popular blog posts. I think this fact speaks volumes to the notion people want to do nice things for others, but sometimes crave concrete suggestions to push them along.  Having my daughter along for the ride added more emotions and importance to the whole journey as well. Watching her experience it added a completely other level to it all. Over a year later, she still talks about that day and how wonderful it is to see people smile because of your actions. It was a huge wakeup call that you can give wherever you happen to be in your own life, sometimes you simply have to be creative about it. Sometimes I think people hear give and erroneously assume it has to be of the monetary nature. I've learned over the years that your time is one of the most precious gifts that you can give.

Here are five easy and simple ways you can give today on Giving Tuesday!

1) Give attention: Is there someone in your life you know who is going through a particularly rough patch? Schedule a time with them and give them your undivided attention the entire time you are in their presence. Even if you can't fix their obstacle, showing them you care and that you are on their team will instantly brighten their spirits. Together we are stronger.

2) Give clothing: Clean out your closets and donate gently used clothing items to those in need. Utah has Big Brother/Big Sister bins at many convenient locations.

3) Give words: Give or mail a handwritten heartfelt letter to a friend who has been on your mind lately, perhaps someone you haven't been able to see in awhile. Take time to put genuine thought into this correspondence. Receiving real letters in the mail is such a refreshing surprise!

4) Give food: Sometimes the gesture of a home cooked meal or yummy treats is enough to completely turn someones day around. Take a friend some cookies. Make a little extra of whatever dinner dish you are preparing tonight and take it to someone who could really be blessed by it.

5) Give research funds to a rare disease: Obviously this one is close to my heart. Rare diseases have to fight so hard for research funds because most of the time they do not receive any government funding due to the rarity of the conditions. Fundraising is up to the family and friends to pave the way.


I would love to hear how you are paying it forward on this Giving Tuesday! Please share your ideas and plans in the comments!

Then I Met A Man Who Had No Feet.

This post also had the alternative title of "When Perspective Smacks You Upside The Head."

Rory has an excellent way of keeping me in check when I'm being ridiculous. One of the thousands of things I'm grateful for with this life with him.

I've been preoccupied for several months in the midst of a big decision. And the thing is, no matter how many people I talk to, or vent to, or ask opinions of...ultimately it comes down to what I want. That is hard for me. And, ultimately, quite silly when I stop to think about it. Because what is greater than the blessing of choice?

I know that when I focus on the good, Sookie sees that and emulates it to the best of her ability. It is a continuous beautiful loop of the two of us encouraging each other to find the happy in the day, no matter what.

This year for the holiday season, I'm attempting something that feels quite foreign to me. I'm letting go of expectations and embracing what is. After years of stressing over it, I've also realized it is impossible to see every single loved one in the same day.

I received an email yesterday morning reminding me it was my friend Sarah's birthday. I stopped moving at lightning speed. Sarah passed on last summer. Her bravery will always fuel my own journey. I know that she is shining bright somewhere up above. On Labor Day, I took Sookie to a tea party with some of our friends. Beforehand, I mentioned that she could bring a doll along. Out of several options, she picked the sock monkey covered in hearts from Sarah. It had been a gift on her first Christmas.  Little, and yet huge things like that give me chills and remind me to always look up.

Working on being brave and present exactly where I am.

This Is Where You Belong (At Christmas)

One of my favorite aspects of the holiday season, amid all of the flurry, is the fact that getting the mail becomes a treat again. Each day you wonder what surprises will await you in the mailbox. You remember the stories and triumphs of each family as you gaze at their cards. You relive the cherished memories you've experienced together as you open the envelope. You get excited about the possibilities of the new adventures to come with these special loved ones in your life. It always brings a smile to my face when we display the treasured greetings from our friends and family in a special spot. Holiday cards are such a central part of the season for me.

It is no secret we adore Minted around here. Since today is Black Friday (what, you didn't know? ;)
I thought it would be a wonderful day to share some of my favorites from them. Today they are offering a special of 20% off holiday card and photo art gift orders of $150 or more, and 15% off $100 or more. We have used Minted for our Christmas cards for the last few years and they keep us coming back for more! The designs are simply fabulous! And the quality is impeccable.

Here are a few of my favorites! :)

I love the idea of ornament cards for a fun way to change things up a bit! If you've never done this type of card before it could be something new to try this year!

This swanky snowflake design is one of my favorites! I love the shape and the combination of black and white and gold.


Minted also offers a variety of real foil pressed cards for some added glam to your greetings!

I love the simplicity of the gold Merry on this one. Anything metallic is fine by me!


Another creative idea for your holiday card is to create a mini book and include a little summary of your year.

This wintry mix holiday mini book instantly makes me feel warm and cozy. How darling is the mix of the creatures with the snowflakes and trees? Love it.

A few years ago when our Christmas time was so chaotic (I was so sick with my gallbladder issues and we were looking for a new house!) we went with a New Years card. We were also able to send them out with our new address. Deciding ahead of time that we would send out a New Years card for a change that year was a huge stress off my shoulders during a crazy time in our lives. I think this option is a wonderful one to have!

The lettering on this design is perfect for bringing in a fresh new start!


I still haven't quite decided on the design of our cards this year. Tell me some of your favorites from Minted? I would love to see them! :)

Happy Black Friday!

The Day You Drop The Knife

I believe that sometimes the most difficult thing about being a human is we are so often taught to deny our own power. To cast aside our role in our story. Our divine nature to manifest magic. When you first feel a glimpse into how all encompassing it is, it can be terrifying. That dizzying realization of your own colossal power. After all it is so easy to take a back seat and ride along with the waves, without fighting the current and refusing to live an ordinary life.

This quote hit me hard. It made an audible gasp escape from my lips when I first saw Elizabeth Gilbert's post on her Facebook page. She ended it with "peace, my dears." I actually made the above graphic way back in March. Tonight, as various things have started to come together for me, I knew it was time to write this post. I knew I finally could. Funny how that works.

You know that panic you feel when things you've been dreaming of and scheming for, start to come to fruition? That satisfaction can be terrifying and motivating. The key is to find that balance, right on that peak between oh my gosh what if this all comes crashing down around me and oh my darling but what if you create everything you've ever wanted?

I'm done being in my own way. How about you?

A Few Of My Favorite Things

{via}

The above mantra. Seriously folks, I need to repeat it to myself more often these days. Perhaps we all should. Not my circus, not my monkeys. Chin up. Moving forward.

I think this would be such a sweet gift to give or receive this Christmas.

The mystery gLocket! This is my favorite gLocket special sale we've ever done. It's a good one friends!  Super price and who doesn't love a surprise?!

Olive Lane gives back and they have a new tee! This week $5 from every sale goes toward helping empower and educate battered women. I adore her designs and she's paying it forward. Double win!

This song that was in St. Vincent with Bill Murray. Bronze Radio Return; Further On. Turn it up. Twirl in your sweatpants. Shimmy. Shake. Conquer the world. Then listen to Aretha Franklin's version of Let It Be and do simply that with all the stuff you can't make sense or logic of.

These Kindness Elves make me smile really really really big.

Lil Blue Boo, aka Ashley Hackshaw. I'm quite certain she's an angel. I'm lucky enough to call her a friend too. Every visit to her space on the internet leaves me inspired, motivated, humbled, and ready to be better and bigger tomorrow.

These delicious leggings from Three Bird Nest make me want to release my inner Carrie Bradshaw and frolic around Manhattan.

I'm reading The Night Circus. I am head over heels. I'm about 35% of the way through. The whole notion and story of the twins? I'm obsessed. It is like a cross between Alice Hoffman and Harry Potter. Basically, two of my favorite things in the universe.


What are a few of your favorite things these days?

10 Things To Remember On A Bad Day

We all have them for various reasons that range from car problems, to bigger hurdles like major life changes. A bad day can get the best of you, or you can arm yourself with tools and do your best to turn it around with these quick and easy tips! :)


1. Perspective: Somewhere someone is having a worse day than you are. My go to perspective game changer is always: Do I have a working kidney? Yes! Am I on the waiting list for a life saving organ? No. Okay, I have nothing to complain about. I can conquer whatever it is I'm facing today.

2. Grab a piece of paper and a pen. Write down a quick 5 to 10 item gratitude list. Guaranteed to instantly lift your spirits and turn your day around!

3. Tomorrow is a new day. Tomorrow is a blank slate. If you simply can't seem to turn your day around, relish in the fact the mornings brings a fresh start to tackle the world again.

4. You're exactly where you are supposed to be in the grand story of it all. Even if this current day is not all you hoped.

5. Find the good no matter how hard you have to look for it.

6. Do you have one or more of the following? Clean water, a roof over your head, people who love you? You're extremely blessed. All three? You're golden.

7. Books offer an instant vacation, even for 10 minutes. Pick one up, start reading, and think about another reality for awhile.

8. A quick walk is also a wonderful way to turn a bad day around. Often, a fast 15 minute journey around the neighborhood is enough to reenergize my body and offer other ways to look at the things that are bothering me.

9. Focus on the beauty of every little thing. The clouds in the sky, the melody of your favorite song, the softness of a sweater. The more you find beauty, the more it will find you.

10. Spend some time with a child. Engage in imaginary play with them, which will enrich their day as well as yours.

The Today Is A Miracle Shop

watercolor v-neck in gray

The today is a miracle shop is now open! I've teamed up with my favorite graphic designers, Olive Lane and Danielle Burkleo of Take Heart to bring you two beautiful designs available in white and gray options. As of right now there is also a kids tee (in purple! my favorite!) and a darling tote bag for the library or a quick grocery store trip. These tees are a multi-faceted mission of mine! One reason is to celebrate the 20th anniversary of my kidney transplant that occurred last month, on October 18th. Another reason is to fundraise and give back to the community that has given me so much over the years. $5 from every tee purchased will go to the Cystinosis Research Network.

I've been dreaming up this project since May! I'm ecstatic about it's launch! I've been obsessed with the phrase today is a miracle ever since I wrote THIS blog post in April. I adore the notion, the reminder this day is a gift and it is quite a miracle we are all here, no matter what we have had to fight against to arrive right at this spot in our story. I think so often we can get caught up in the idea of a cure (whether it be for cystinosis, cancer, MS, etc.) that we can forget to embrace the power of today. 

An excerpt from that post in April:

I've been thinking a lot about different perspectives when it comes to living your story when a rare disease is a piece of it. Your normal is your normal...and no one else's. My health is only but a tiny facet of the entire scope of my being. I know that 10 years into one journey can, and will, look extremely different than 30 years into it all. And still? And still we are all so unique, even under the realm umbrella of living with cystinosis. I've never felt like I would be me without it. I don't loathe it. Yes, sometimes things are difficult...but that is existing on this earth. Every single human has their mountain. The funny thing is, it isn't even a mountain to me any longer. I think I'm more hopeful about the future than I have ever been. My life isn't horrible because of a lovely little flaw in my DNA; it makes me who I am.  It doesn't have to dictate anything I do (it truly doesn't.) Looking back on where I've been over the years and what I've experienced, I wouldn't change anything; health wise or otherwise. There is a tremendous peace with the current place I'm in.

If I could say one thing to anyone out there waiting for a cure...for anything, whether it is cystinosis, or cancer, or cystic fibrosis, or MS, it would be this:

It is a beautiful thing to have hope. It is a fabulous notion to believe in the future. However, I don't ever want to cling so tightly to tomorrow that I forget to cherish and embrace this exact minute. Today is a miracle, for everything it is right now.

Smiled With The Rising Sun

Today was cozy and we indulged in Sunday morning family band practice in the basement. Sookie was on the drums, of course. Artists we covered included Bob Marley, Queen Elsa, Taylor Swift, and Meghan Trainor. I adore that Sookie's favorite songs right now include Elton's John's Saturday Nights Alright For Fighting, Counting Crows Scarecrow, and Willie Nelson's On The Road Again. Girlfriend is going to inherit her momma's freakishly diverse music tastes. I have to say, I'm quite proud of that.

I also wasted three hours of my life going to see Interstellar, but let's not get into that. At least there was a raspberry shake and salty popcorn to keep me awake. ;)

The other day after I picked Sookie up from preschool, she remarked "I'm grateful you and daddy are healthy." I stopped mid whatever it was I was doing and wanted to explain. Then, it hit me like a wall of bricks, square in the chest. I view myself as healthy, so she does too. I view myself as healthy, because I am. It is all relative.

And as Bob would say...

...every little thing is gonna be alright.

On My Heart, In My World

A few minutes ago, I was glancing over saved drafts in blogger, sifting through the thoughts and words wondering which to tackle today. It has been a good week, a big week. There is so much I want to make sense of and write about. There is always something quiet deep within, pushing you forward, beyond your comfort zone. For some reason, that something in me has been extra powerful lately and I'm learning to trust it and go with it. I've had important phone calls. I've been planting seeds of hope everywhere I can. I turned around some mommy guilt on Monday when Sookie so desperately wanted to stop at the library before preschool and there simply wasn't time. Instead, we played a game of tag at the park. We were bundled up in the cold, laughing and constantly moving to keep warm. It was, by far, the best 15 minutes of my day. My reminder that you don't need to do grand things to make memories, that sometimes the most simple things are what childhood is made of.

I soaked up the music of The Black Keys a few nights ago with Rory and his brothers. We laughed at the bold dance moves of the couple a few feet away from us in the general admission area. I secretly wished I had the guts to move that freely and unabashedly in public. I'm forever grateful to be wowed by the sheer power of live music. How it can bring people together for a few hours, united in melody.

Speaking of music, Sookie sings all day lately. Most often with her doggy guitar. I love it. My ears delight in it. The other day she was singing a song: the moon is shining bright, it's a day of light. She said she just made it up and it made my heart burst with pride.

We launched fresh products this week too! Brand new gLockets are up on the website! Our vintage heart in gold and rose gold. I'm obsessed with these and love the way they compliment a cozy sweater! Use code HAPPYGIRL at checkout for 20% off. Grab some for gifts!

And with that, I will say happy weekend, make a cup of coffee, and work on my new project! :)

5 Tips For Coping With A High Risk Pregnancy

image via lucky friday studios

There is no doubt that pregnancy is a great adventure from the very beginning. However, when you are  facing a high risk pregnancy, that uncertainty can come with a thousand more twists and turns along the way. The normal roller coaster of a pregnancy is added to tenfold when you have extra obstacles thrown your way. Personally, during my pregnancy with Sookie my emotions were all over the map. On one hand, we were both ecstatic, as neither of us ever thought we would get to be parents. On the other hand, only knowing of about nine other women in the world who have cystinosis and have had biological children, we really had no idea what would happen. And yet, we were armed with an abundance of hope and faith.

Here are my 5 tips for coping with a high risk pregnancy. Please add your own in the comments! I would love to hear them!

*******

1. Be Open
When you are facing a high risk pregnancy, being optimistic and yet realistic at the same time can be an extremely tricky balance. I found it was best to be honest with our family and friends about our obstacles, possible outcomes, and complications. The look of glee on our faces was incredibly obvious to anyone who saw us. However, our concerns were heavy and very real too. Being upfront with loved ones is key in keeping your sanity.

2. Accept Support
Don't be afraid to accept support in any way, shape, or form. People love to help, especially if they don't know what to say. Accept what people offer and don't feel guilty about it one bit. It takes a tremendous support system to conquer a high risk pregnancy. The more people you have rooting you on, the better.

3. Stay Positive
Stay upbeat! Sometimes you might have to fake it. Surround yourself with positive people. Create your own optimistic mantras to repeat every day. Read success stories. Engage with others who will cheer you on and assist you in always finding that silver lining. Believe in miracles. (Cheesy, but true!)

4. Educate Yourself
Read stories of others who have been where you are, but at the same time remember everyone is on their own personal journey and no two cases will be the same. Connect with friends who might be able to offer some knowledge. Seek out support groups online. Absorb as much information as you can handle. Ask questions and then ask some more. Quiz your doctors constantly.


5. Be Your Own Advocate
Luckily I've had plenty of practice advocating for myself in the medical environment. It came in handy when working with my maternal fetal medicine specialist in doing our best to keep Sookie safe, and at the same time, keeping my health in check as well. There were many times I requested labs to be drawn to monitor my creatinine (kidney function). I'm not ashamed to admit this at all. Don't be afraid to make your voice heard. I was hyper aware of how high the stakes were and wanted to stay on top of everything as much as possible. If you feel something isn't right, don't downplay it or ignore it. Speak up.

How To Live Your Best Life

Rise up with gusto. Attack your destiny. Follow it through to its beautiful and outrageous conclusion. Stop for breaks occasionally and to breathe in this glorious life. You are not a robot, work is not your life. You are a human being, and that, being is all that is required of you. Accept this. You heart beats along with the thump of your big, outrageous, spectacular dreams.

Feed your soul, along with your belly. Choose love over fear, even when fear is disguised as love.  Pick your battles, but know the core of your fight.

Jump.

Carefully note the odds stacked against you. Remember them. Then kindly throw them out.

Recognize your story. Own your power. Do not be afraid of it. Use it to change the world.

Wake up. Again. Repeat.

Hope On A Friday

my new obsession

This morning I played I spy with our girl on the drive to the hospital to see my nephrologist. We sang Christmas songs at the top of our lungs. I soaked up this gorgeous November morning, reveling in the majestic mountains towering over the freeway. The waiting room at the kidney and liver clinic was packed full. Noticing this reminded me how blessed I am that I only have to go there twice a year now, knock on wood! Such a far cry from the three times weekly it was once upon a time two decades ago.

Sookie has been my sidekick to two blood draws this week before today and continued to be such a trooper at my appointment this morning. She is such an old soul and pushes me to be braver all the time.

The best news of the day is a .88 creatinine (anything below 1 is considered ideal) level 20 years post transplant with no immunosupressive medication! My nephrologist told me to go celebrate! 

It always feels incredible to remember what a miracle your body is, every single day.

You Can Dance In A Hurricane, But Only If You're Standing In The Eye

Pixie dust is all over the house. It is hiding in the cracks of our hardwood floors and sprinkled on top of the dog and cats. All in Sookie's (ahem) Tinkerbell's, attempt to get everyone in the family thinking happy thoughts and flying on Halloween. In the rare hours we've actually been home this past week or so, I've been lounging in my sweats and my new favorite She believed she could, so she did tee. The chaos of celebrating Halloween has kept us busy with activities and fantastic memory making. It has been perfect in oh so many ways. Watching our girl delight in holidays is one of my very favorite things in this life.

When we see friends we haven't seen in awhile, the conversation ends up at Rory's accident in August. That night, the way everything happened so quickly, the things I would have done differently looking back now, the post traumatic stress that has plagued all three of us since. It was such a bizarre accident. He was so calm. Such a rock. He was the rock when I should have been. I'm still seeking the lesson in all of it. Although I did learn I'm horrible at being on the other side of the hospital bed. Something I will add to my improvement list of how to be a better human.

Rory gifted me with tickets to Brandi Carlile in August for my birthday. A highlight for me was when she performed a new song with the twins. It is called The Eye and sums up this summer so perfectly. Hearing the lyrics now, I am instantly transported back to that night. The wind rustling through the trees, the haunting harmonies of people who simply belong together making music, the powerful and simple beauty of the statements in that song: You can dance in a hurricane, but only if you're standing in the eye. Goosebumps.

And that is how I feel about this summer, and this whole year in particular. Standing in the eye of a hurricane, attempting to dance my thriving heart out as I see all of this upheaval happening with those I love dearly. There are the most beautiful and heartbreaking stories out there. Not all of them are mine to tell here. Then there's the metaphorical storm of my own path and this tremendous fork I've been standing at, looking to my left to crazy new shit option and to my right of same old shit road.

I think it is okay to forgive yourself for going backward sometimes.

This fall season has been outrageously special. I've felt good most of the time, decent at the worst. As a result I've taken advantage of the glorious now and jumped headfirst into every fall related activity available.

What Would You Do With Twenty Extra Years Of Life

The first five years after my kidney transplant were tumultuous to say the very least. It felt like there were endless obstacles. I faced several complications and tricky situations because of side effects of all the immunosuppression drugs I was on at the time. In addition, I was attempting to navigate it all with an already overly emotional heart and puberty emotions galore. Fun fact I learned by living it! Did you know an abundance of prednisone (a steroid) can push a young girl right into womanhood? True story. It can also cause diabetes in less than 5% of people who take it. Guess who was one of the lucky less than 5%? Yes, that would be me. Luckily, as my dose of prednisone was decreased, the diabetes was cured. Another not so small miracle that is a part of my story! My mom's kidney has always functioned wonderfully since the transplant, all the other detours I've been on have been from side effects of medications. Both a little frustrating and incredible to think about.

I've been writing a lot about my transplant lately. It is how I process things. Therefore, I keep writing as long as the words keep coming. They keep flowing out of my fingertips and somehow continue healing the past when all the letters align.

This milestone anniversary has prompted me to look at twenty year spans of other people's lives as well. My mom, my dad, Rory, and it has even made me wonder where my sister would be today if she had lived 20 years of life. I daydream what Sookie's life will look like in 20 years. It is such a long time. My mom's precious gift has lasted twice as long as my native kidneys. I can't quite wrap my head around that feat!

Last week my mom shared some photos from that week. They made me cry. Up to that point I was approaching the upcoming anniversary as nothing but pure happiness. It was as if seeing those photos reminded me how utterly raw the whole process can be, even when the now is a beautiful triumph. It is hard sometimes to realize how young I was, when really I remember thinking on the operating table, "Well, I've had a good life, it's okay if I don't wake up from this." When in reality my 11 year old self had not yet fallen in love, not yet learned to drive a car, not yet happily slept on the dirty streets of New York to see a band of three blonde brothers, not yet been to Paris, not yet graduated college, not yet experienced the explosive heartache of losing my only sibling, not yet been completely blindsided by the grace of a love story bigger than all the pain, not yet in awe by the power of a little girl who so fiercely wanted to be our daughter, that she broke all the rules to get here.

______________

I want to hear about 20 years in your life. What you've accomplished, the love you've lived, the dreams you've chased, the houses you've made into homes, the traveling you've done to quest your thirst for wanderlust. What have you done with twenty years of your wild & precious life? Share in the comments!

Organ Donation From The Perspective Of A 4 Year Old

Earlier this week on the way to preschool:

"Mommy I have two kidneys, right?"
"Yes you do!"
"So when I grow up I can give one to someone who needs one, right?"
"Sure if you want to baby."


Sookie is 4 years old. She knows mommy's kidneys stopped working when mommy was a kid. She knows mommy needed a kidney that worked. She knows my mom (Grrmomma to her) gave me one of her kidneys.

Through her perspective, it is as simple and as beautiful as that.


The vast scope of human experiences continuously baffles me. We all share this earth, but our adventures and struggles are insanely different. If you are outside the realm of a reality in which you or someone you love dearly needs an organ transplant, I can take a step back and imagine how the misinformation out there about organ donation could sway you. However, I also see how simple such a (sometimes) complex issue is when approached from the childlike eyes of a four year old. A four year old who knows she has two of something, and that some people are in need of simply one that works. It is basic math for her. And I love how powerful that turns out to be.

Did you know 123,000 people are currently on the waiting list for a life saving organ? This statistic upsets me. The need is greater than the donors available. Understandably, organ donation awareness and education has always been a huge passion of mine. I'm constantly seeking out stories of hope and perseverance in relation to this unique journey. Several years ago, I came across The Ruby Jane Foundation. Simply put, their mission is to save lives by educating the public about organ donation. They lost their seven month old baby girl, Ruby Jane, while she was waiting for a life saving liver transplant. Their story breaks my heart, yet I am endlessly inspired by what they are choosing to do with their pain and how they are determined to save other lives.

Did you know you can register to be a donor online? Easy as pie.

Once Upon An October

Dear October,

I love you because you hold dates that make my heart sing. Lots of loved ones birthdays all varying in ages, our 8th anniversary, my Dad's birthday (he turned 59 on Tuesday!) and of course my big 20 year transplant anniversary on Saturday. Halloween might be my favorite holiday too. I mean, come on! All the spooky shenanigans without the stress of presents and family drama. ;)

Fall is such a time of hope for me. Pure, powerful, potent hope. The greatest things have happened in October. It is refreshing to see how to remember things that happen in 24 hours can change the path of your life forever. Yearly I am reminded of the force of believing in something bigger than yourself.

This year specifically? We've been laughing and loving these days away. Sookie was randomly on a local television show when we were frolicking at one of our favorite spots, Gardner Village. I present, Queen Elsa complete with glitter eyes.

She was all ready to go in a darling halloween dress, then came down wearing this. I asked her what happened and she explained that she accidentally smeared toothpaste on her halloween dress. So, when the camera dude came up to me and asked if she wanted to be on T.V. getting glitter eyes painted, I thought sure why not! Therefore, Queen Elsa...with glitter eyes. Makes me laugh!

That photo above at the very first with the pumpkin field and majestic Utah mountains? Is featured on the opening screen of the Rhonna Designs app this week! After knowing each other online for years and years, (plus working together last year on the Cystinosis stack of bracelets) I was finally able to share a hug with Ashley from The Shine Project a few weekends ago! That girl has a heart of gold and her actions back it up. She is the real deal! Other pieces of good; Sookie is cavity free as of last week at the dentist. We've been to the circus, enjoyed breakfast with eccentric witches, and have some phenomenal family photos.

Whew! I say bring on all the fun when I feel this good!

What is your favorite part of October?

Taking Stock, Currently

I found this prompt on Antlers and Roses and thought it would be fun and different to do for a change! Also linking up with Harvesting Kale and Ot & Et. Feel free to join in on your own blog and leave me a link in the comments so I can check it out! I adore reading lists like this. :)

Making: footprint witches and toilet paper roll mummies with our girl
Cooking: copious amounts of baked donuts around here lately!
Drinking: unsweet tea on lots of ice
Reading: You Are Psychic by Debra Lynne Katz, The Night Circus by Erin Morgenstern, Hands Free Mama by Rachel Macy Stafford, and Elements of Style by William Strunk Jr., and E.B. White
Wanting: everything I have
Looking: toward the mountains
Playing: leap frog, hide and seek, and tag with our girl in the backyard  
Wasting: time daydreaming and snuggling
Sewing: eep. nothing!
Wishing: for magic and miracles 
Enjoying: all this rainy Utah weather we've had the past few days. last week I was sweating carrying Sook around the zoo. Ha! 
Waiting: nothing really, working on being present in each moment as it comes 
Liking: being silly and letting go 
Wondering: if I have the guts to go for it   
Loving: this life! 
Hoping: this fall weather lasts for a few weeks 
Marveling: at what a miracle this all is. the things that have to happen 
Needing: more faith in myself and my power 
Smelling: lemon garlic chicken and veggie soup
Wearing: black pants, princeton tiger tee with 
Following: Sookie's endless curiosity, and learning so much about myself in the process
Noticing: how Sook is blossoming and growing these days
Knowing: I'm exactly where I need to be right now.
Thinking: that perhaps a cover and a title are more than half the battle of a memoir ;) 
Feeling: immensely grateful this kidney of my momma's has lasted nearly twenty years
Bookmarking: all sorts of halloween craft fabulousness
Opening: Sook's first Christmas present I ordered! It is so darling I don't know if I can wait to give it to her.
Giggling: late into the night 

Be Bold, The World Is Waiting

Next month marks 20 years since my kidney transplant. Twenty years. Twenty years. I have a hard time believing it, even though I've lived every minute of it. An eerie aspect of it all is that when I look back on those days, and particularly the night before the big operation...I didn't feel a mere 11 years old at the time. I felt so much older. I remember being the most worried about my sister (who was 4 years old then) and my mom (who was the donor). I remember the final 19 vials of blood they lost, yup lost somewhere in the hospital, the night before everything was to take place. My sweet as candy transplant coordinator came into my room, sat on my bed and delivered the news. It came down to drawing more blood to re-run the last minute tissue typing, or rescheduling the surgery I had been anticipating my whole existence. My tween heart was devastated. My redheaded temper was furious. My core simply wanted another chance at life, without having to give up 38 vials of blood the night before. ;)

In the cystinosis community many of my friends have had kidney transplants. It is quite close to being the norm. I only know of a few of those kidneys which have lasted longer than 15 years. It happens, but it isn't expected or even the average. There are so many variables that affect the life of a transplanted kidney, many of which are unknown. Such a weird balance of what ifs and loops in the road to get to here, to today. I have a theory my pregnancy actually benefitted my kidney when all was said and done. And I was extra lucky because I was off all anti-rejection medication before I found out little Miss S was growing in there.

I'm planning some wonderful things for the week of October 18th as a way to celebrate. Perhaps a special tee, maybe an instagram loop giveaway with fabulous goodies, and possibly lots of random acts of kindness. Because I want everyone to have some fun sharing this milestone with me! Can't wait to share more details!

Stress About The Beautiful

I had a thought a few days ago. Wouldn't it be marvelous if we all started stressing about all the beautiful things? Instead of whining about them? This (not so) revolutionary thought occurred to me several days ago when I was getting my panties in a twist (yup, happens to the best of us!) over all the tasks I need to accomplish and cross off my "list". When really, all I wanted to do was drop everything and build lego castles and construct curving train tracks with our girl all the live long day. We do plenty of that too, because I'm a firm believer in the power of playing with your kids, but on this particular day  the tasks that needed to be finished far outweighed my energy and resources. Which....newsflash, is life as an adult, and a mom. I know that.

However, I decided to turn my thoughts around. There were so many beautiful things to stress over. We have a house to live in, sure it needs to be cleaned and I'm constantly picking up. But we have a house of our own. I was battling with my insurance company to cover my $800 a week eye drops that prevent blindness due to the cystine crystals that build up in my eyes. Yes, the process was annoying and stressful and time consuming. I'm still working on getting the details smoothed over and everything figured out, but goodness, there is a medication to help obstacles I have, and that? That is pretty freaking fabulous. A beautiful thing to stress about. I want to stress more about the beautiful. Sookie is a busy busy bee these days and I'm astonished at her curiosity and boundless passion for learning and moving and growing and changing. The beautiful thing to stress about? She's healthy, she's happy, she's thriving. Girl is gold.

I want to stress more about the beautiful. How about you?

Gummy Bear Limeade Popsicles

Last year in the summer we discovered how much fun it can be to make your own popsicles. Frequently I tossed spinach into berry smoothie mixtures and our girl was happy with the mixture. I know we are on the verge of fall, but we are hanging on to every last bit of summer around here. These yummy frozen treats are definitely helping!

You'll need:

Popsicle molds
Limeade
Gummy Bears

See? You don't even need to call this a recipe. It is so incredibly simple. Throw some of your favorite brand of gummy bears into the bottom (or top, depending how you look at it) and pour some limeade on top. Ridiculously easy, right? We like Newman's Own All Natural Limeade around here.

Make some of these, throw on your favorite summer skirt, toss your hair up in a messy top knot and soak up summer 2014's last rays. Go ahead. We dare you.

1 // About The Author

Ah, September. I think I'll get lost in you this year.

I'm taking on the Blog-tember Challenge hosted by Brave Love blog. The first prompt for today is to write an about the author page and tell a bit about your imaginary novel.

Here goes...

Bluebird Pictures

I went through a Garth Brooks and Michael Bolton phase when I was 10 years old. I had a kidney transplant when I was 11. My mother gave me life for a second time. She's my guardian angel here on earth. My life has been filled with an abundance of love and light, as well as tragedy. I believe bravery is hidden in the good moments. Courage finds you when you have the balls to go after it.

I believe in the healing power of music, words, and gratitude. Once upon a time I wasn't supposed to live past my 10th birthday, and then poof...I turned 31 a few weeks ago. I'm living out my wildest dreams with a good man and our odd defying daughter. I like whimsy and color and noise.

My imaginary novel? Oh, I have several ideas. One that would be fun to see through to its completion would be about someone who meets their real life imaginary friend when they are 50. I heard it on Before Midnight and have been happily haunted by the notion ever since.