25 January 2015

The Future Is Wild. And It is Ours.



On her last Sunday as a 4 year old, the training wheels came off the bike. I was beaming for her and with her, as the glee in our eyes matched, the tears came unexpectedly and oh so raw. Once upon a time I didn't know if I would be here to see such milestones with her. And now that I am? The future is wild. And it is ours.

14 January 2015

Create Your Own Sunshine

Winter blahs? Sometimes this post holiday time of year can be a little bit of a bummer. The other day we were out running errands and Sookie said, "I miss Christmas mom." I do too Sook, I do too. So, I thought it would be fun to have a sale over in the Today Is A Miracle shop! Today only, get 20% off your entire purchase with code WINTERYAY

Sale does not affect donation amount. $5 from each item sold will always be donated to cystinosis research. We have a brand new tote design and a new Alice In Wonderland inspired tee in honor of a very special anniversary of my sweet friend Laura's kidney transplant. I'm so excited for it all! :)

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
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

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.