17 October 2014

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.

16 October 2014

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?

06 October 2014

5 Tips For Living With Cystinosis



I've been wanting to write a post like this for quite some time. The cystinosis community is small, albeit mighty. I'm endlessly grateful for the ways people in our little family support each other. Insecurity kept getting in the way of me publishing this piece, because I definitely don't have it all figured out. I finally decided to go for it though. I've been living with cystinosis for 31 years now and I've learned a few things along the way. Obviously, I am not a doctor but these are some points I believe can help. I'm excited to share them today! (Nerves be done. Ha.) Really, these tips can easily transform to other chronic diseases and health adventures, but I wanted to focus on cystinosis today because resources can be tricky to find due to the rarity of the condition.


1. Remember your journey is yours and your alone.
It doesn't matter where you are in your journey with cystinosis, or who you are. If you are a parent, or a friend, or the person living with it each day, always remember the details of the story are unique to everyone. I think sometimes people can get really caught up in comparing when a disease is so rare like this one. It truly is crucial to walk your own path. Whatever that may mean to you and your circumstances.


2. Trust your gut instincts.
Confession: there have been many times when I've rebelled and not listened to what was recommended. I'm still here to talk about it! An example would be growth hormone injections to assist my body in the growing process. They are quite popular with many people and their cystinosis stories. Personally, I felt confident in my decision to skip them when they were offered to me by my nephrologist. It was a tough health time in my life and I had other priorities. In addition, there was that little gut instinct that I couldn't shake off. I don't mind being 4'11" now either. Wink. As often is the case, we have to choose our battles. I love that we have choices like this.


3. Embrace normalcy.
This is huge. I've never particularly been fond of the word normal anyhow, because I don't believe anyone knows what that is! The oven timer goes off multiple times a day around here to remind me to do my eyedrops. Sookie is used to it. We all are. It is our normal. This is a miniature example. Really though, create your life the way you were going to anyway. Sure you have to shift some things and make room for extra obstacles, but find your version of normal. Then rock it out of the park and create your wonderful life from the ground up. It is possible.


4. Do your own research.
As I covered before, many practices seem like a go to in the cystinosis world. However, I really encourage people to do their own research. Simply because a certain intervention works wonderfully for one person, doesn't immediately mean it is for you. You have to take into account your whole picture, not the one facet of cystinosis. And my goodness, listen to your body. You know it better than anyone else.


5. Ginger root is an incredible natural aid for nausea.
When I became a mom, I took a step back from my medications and made adjustments to natural alternatives. I completely understand this isn't always feasible, but you may be surprised where it is indeed possible. Nausea is a common side effect of cysteamine and at times it can be absolutely brutal, depending on how your body tolerates the medication. I've been off of all acid reducers for over 5 years now and it is such a relief. I started researching the long term side effects of these drugs and it was some  eye opening information. I take organic ginger root capsules with every dose of cystagon. You can purchase them from Amazon as well as any health food store.

02 October 2014

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 

30 September 2014

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!