22 December 2014

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.


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
Patient: Shea Hammond

Johns Hopkins Hospital – Baltimore Maryland
Donor Intake Coordinator
Patient: Shea Hammond

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

15 December 2014

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.

13 December 2014

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.

11 December 2014

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.

09 December 2014

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.

02 December 2014

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!

01 December 2014

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.