30 August 2013

Keep Your Heart Young

A few years ago I stood watching Brandi Carlile at my favorite concert venue while she performed a new song that made my heart race, my mind embrace every little tidbit and my tears come fast. The lyrics hit me square in the chest and made me ache that awesome ache when truth collides with words, creating timeless art.

Last week I discovered the super fun app flipagram thanks to Glitter And Gloss. It allows you to make simple videos from your instagrams (or other photos in your camera roll on your phone, or phome, as Miss S would say. Wink. ;) The rest? Well, the rest is history.

A little video I made:

Happy Friday! 
If you are in Utah, come hang out tonight at the Threads Trunk Show at Soel Boutique at Riverwoods in Provo from 6-9 pm. Ashley from The Shine Project is going to be there spreading inspiration with gorgeous bracelets! It is going to be so much fun! :)

16 August 2013

50 Ideas For Random Acts Of Kindness

My big 30th birthday is on Monday! I truly can't wrap my head around the fact I'm still breathing and alive. It is pretty amazing. ;)

If you are joining us in celebrating and spreading the love through acts of kindness I put together a list of ideas below, 50 to be exact! Remember to share your acts on Monday on Instagram, Twitter, and Facebook, with the #30acts hashtag.

1. Leave a simple note of encouragement on a random car in a parking lot.

2. Donate crayons, papers, art supplies and games to your local Child Life department at your local Children's Hospital. (Trust me, they could always use something!)

3. Donate to the Cystinosis Research Network, my birthday wish is to raise $3,000 toward research. :)
You can put "Tahnie's 30th birthday" in the box next to "In Honor Of". I thank you from the bottom of my heart. We are so close to a breakthrough with the treatment of muscle wasting. I know we can get there together. It will be a beautiful day of celebration when we do.

4. Buy a bunch of balloons and hand them out to random children.

5. Take cookies to local fire department

6. Reach out to someone in your circle who you know is going through a particularly challenging season in their life. Don't bombard them with advice, simply listen and acknowledge their feelings.

7. Post a coupon code for an online shopping site to your Facebook or Twitter. Share the savings!

8. Help out a remarkable couple looking to add to their family through the miracle of adoption.

9. Make a memorial glocket for someone who is grieving. You can include the person's initial, angel wings, and their birthstone to create a piece that is unique. Use HAPPYGIRL for 20% off your entire order.

10. Gift someone you love some music over iTunes.

11. Take over dinner to a an exhausted, overwhelmed momma. Write her a note about how you notice how hard she is working and what a fantastic job she is doing raising those angels.

12. Pay for the person behind you in a drive thru.

13. Leave a $10 bill tucked into a corner of some diapers.

14. Donate to this incredible family HERE Scott recently passed away from cancer and Courtney is now solely responsible for their two young children.                         

15. Gather up cans of food to take to your local homeless shelter

16. Tip a bridge toll collector

17. Send a bunch of real cards in the mail...just because!

18. Clean out your closets and take any blankets, sheets, or towels you don't use to the humane society for the animals

19. Feed the parking meter for the person coming up after you

20. Clean out toys and donate to Big Brothers Big Sisters

21. Donate books to your local library

22. Leave a gas card at the pump

23. Take homemade popsicles to construction workers or anyone else working in the heat

24. Pick up litter at  your local park

25. Walk a friend or family member's dog

26. Leave a big bottle of laundry detergent at a laundromat

27. Leave a $5 taped to the entrance of a car wash

28. Leave unused coupons next to those items on the shelf

29. Regift an unused gift card by leaving it on someone's windshield

30. Mow your neighbor's lawn

31. Give someone flowers just because (you can buy or pick your own!)

32. Bring coffee or tea for your coworkers

33. Do the "Here's $20 toward the next person in line" at the grocery store

34. Buy a lottery ticket for a stranger

35. Give a hug to someone who really needs it

36. Leave an unexpected tip to an exceedingly fabulous waiter or waitress

37. Buy a life changing book for a friend

38. Donate blood or plasma

39. Send books and DVD's to soldiers overseas through Books For Soldiers

40. Help someone with their job search

41. Donate unused airline miles to Make A Wish (As a former "wish kid" I think this organization is beyond amazing!)

42. Renew an old friendship by reaching out, sending a gift, or writing a heartfelt letter

43. Let your parents know how much you love and appreciate them

44. Donate gently used clothing

45. Smile at 10 strangers

46. Give up your seat on the bus or subway (even if you are exhausted ;)

47. Purchase extra back to school supplies (binder, pencils, notebooks, backpack, etc) and donate to a school

48. Take lunch to your local police department

49. Choose to forgive someone you've been angry with

50. Visit or volunteer at a nursing home. Take goodies, books and magazine to donate as well.

If you have any other ideas, please share them below in the comments! :)

Special thank you to you beautiful people on FB for helping me out with some of these ideas!

07 August 2013

Being Brave Exactly Where You Are.

"I was so brave last night mommy! I touched the bottom of the pool with mine feet!" 
A few weeks ago, these words greeted me through the telephone. I smiled a slow, proud, mommy smile and let two tears (yes, only two) slowly creep down my cheeks. The confidence in her voice was bursting through the air. I could hear that sparkle in her eye that lights up when she conquers something big and new. It was a small pool in Poppa and Grrrrmomma's backyard, she had cheerleaders all around and was covered in the armor of an inflatable tube, but in that moment, in that day, it was her Mount Everest.

There is a photo from November of 2011 of a tiny toddler hand on top of a mommy's hand. A small portion of her yellow cardigan evident in the square. It was taken in a moment where I felt broken down by circumstances beyond my control. She was on my lap in the backseat of an airport shuttle leaving the NIH (National Institute of Health) in Bethesda, Maryland. The previous three days I had gone through a never ending list of many medical tests and procedures. I felt like a lab rat. I received news that trip which was heartbreaking for me to wrap my brain around, that the muscle wasting in my esophagus had begun and was directly affecting my swallowing abilities. I knew it was coming, but honestly I felt like I wouldn't have to directly face it for a few more years at least.

I see now that the bravest thing I could have done back then is put one foot in front of the other, even if if required breaking life down into half hour increments. (I tackled life in those small chunks after my sister died.) Hindsight is great, isn't it? (wink) However, I came home and fell into a dark abyss, forgetting the ever recurring blaring theme in my life...doctors don't know everything.

When I was going through the preparations for my kidney transplant in 5th grade, I vividly remember my grandma asking numerous questions for me. She knew what I was thinking before I had the balls to give it a voice. (At 11 years old, I was quite ballsy, but not completely at my peak. Ha!) Every meeting with my team of doctors she would emphasize that the unknown is often the scariest. Which I feel is such a truth in the medical field, why Child Life Specialists are so incredible (and a big reason why I studied Child Life in college!) and needed and actually this notion covers a lot about life in general. I think we are scared about what we don't know.

Maybe the bravest thing you can do right now is to let go. Maybe the bravest thing you can do right now is to push yourself a little further. Maybe you need to take a step back, regroup, realign and refocus. Maybe you simply need to take a deep breath and power through like every inch of you is on fire and there is a life saving pond on the other side. Maybe being brave exactly where you are means something entirely different in your life than in someone else's, there is a good chance of that. And nothing wrong with it at all. Perhaps being brave in this season means speaking up for yourself for the first time ever, maybe it means saying no. Perhaps it means navigating new cliffs with spectacular views and convincing yourself you more than deserve every picture perfect morsel of eye candy.

There is an upcoming trial for investigating if daily growth hormone injections has any affect on muscle wasting in people living with cystinosis. After reviewing the details and risks a few weeks ago at the CRN conference, I will admit I'm more intimidated now than ever about jumping in head first.

But I'm going to take that chance anyway. I have nothing to lose but fear.

Maybe the bravest thing you can do right now is realize you were given this life (and it's infinite struggles and endless challenges), because you are strong enough to live it.

Tell me, what does being brave look like to you, exactly where you are?

06 August 2013

The Shocking Beauty Of The Right Now.

The haphazard way the blades of grass lean in your backyard. The perfect plop of fluffy white cloud floating through the sky. The lazy way the dog's tongue flirts with the gravity beneath. The pattern in which little hearts blossom and grow and reach and expand. The gesture of mini hands wildly pushing back rebellious hair. The instant pull of her soul to yours when she spins into you in bed at night. The uplifting nature of the simple combination of a ladybug, a redhead in a purple dress, and messy pigtail braids. Her hilarious thrown together sentences. (That bird said, "What the dude?! You look like a tomato.") The freedom that comes with being on the cusp of turning 30. When she falls asleep with tiny princess dresses under her chin, unicorn pajamas and a silver bow in her hair. Your fingertips tracing hearts onto the sky blue back of the man who loves you to the ends of the earth, and then some. The transcending nature of live music and how it has the ability to take you someplace else, where everything makes perfect sense and every ounce and inch of you is bursting with bravery and fierceness. Mouth wide open laughter against the greenest backdrop (because, by golly, the grass is greener where you water it.) 

What is shocking you with beauty right now?

05 August 2013

6 Word Memoir

I smiled as I popped open the lid to my organic honest mango acai white tea this morning. I felt a little jump of anticipation when I realized there might be a lovely words from a stranger to inject some awesome into my day. This 6-word memoir greeted me: I still practice my Oscar speech. (Jennifer Labbienti) It is no surprise to me that with exactly two weeks until I turn 30 I'm doing even more reminiscing than usual; combing back over pages of memories in my history. Reliving the good, the bad, and the outrageous all in stunning technicolor. I started toying with combinations of words to see it if I could quickly conjure up something I was satisfied summed up my story.

I came up with this:

A girl who lives in miracles.

Not too shabby. It covers a lot without going over all the details. I shall save the details for my book. Ha! 

What is your 6 word memoir? 

01 August 2013

Heart Map

My heart as a map, would look something like the following: a mess of green and blue and brown and life igniting reds and oranges. Conflicting colors and emotions, all swirling together as my chapters unfold. One thing pulling me forward as something else catches my eye or attention and I veer in an entirely new direction on a whim of nostalgia, chasing after a pipe dream as fast as my breath can carry me. July is notorious to me for being a month of the unbelievable. This year has been no different.

A few weeks ago, I attended the Cystinosis Research Network Family Conference in Washington D.C. with Sookie by my side. Okay, it was more like Sookie running circles and circles around me. It was a new adventure as this was my first conference with her, without the awesome, superman help of Rory. Oh...boy. Let's simply say girlfriend was homesick and missed daddy tremendously.

On the bright side, it is sacred when people look at you and know your battles intimately; as much as they can without being you. There are precious moments from that trip I want to embrace and keep under glass. I spoke with parents who have never met anyone else with Cystinosis and they asked me questions about how I stay positive and what they can do to help their kids live their best life. The honest truth is, I'm still trying to figure it all out myself.

There were days of jargon filled with such medically charged terms as cystine, nephrologist, rickets, cystaran, proton pump inhibitors, carnitine, immunosuppresants, kidney transplant, cystagon, being nominated as a "Hero Among Us" (Thank you Rachel!) and learning more about what it would entail if I volunteer for an upcoming study for the effectiveness of growth hormone injections in delaying muscle wasting. Moments came up on me when I felt the weight of my breath caught in my throat as I saw Sookie in the company of people who have been such a substantial support in my life over the years. There is definitely an invisible line connecting us all and I hope to learn from others who are on this path of life with cystinosis.

When we arrived home it felt a little bizarre to be thrust right back into the world of an exhausted momma with laundry, the simple beauty of toddler watercolor paintings, grilled cheeses, alarms going off to do my eye drops, tantrums over getting curly red hair washed, Miss S refusing to wear clothes in the backyard, games of dinosaurs and fairies, and dance parties in the kitchen. For a week or so I felt like I had one foot in each of these different worlds so to speak, finding that balance between the two lands is a challenge I'm embracing...and using to make myself better with each new day.

When you are a witness to someone's life only on the outside, please have a kind heart and realize the stuff they see on the inside (that might be invisible to everyone else) is what propels their big life decisions.

Jumping on hotel beds. She is an angel who is a blur of color. 

Sarah (who is living with cystinosis) painting Sookie's toenails. Such a sweet moment that made me tear up!

Three of my cystinosis sisters who encourage and motivate me daily!

Wonder woman helping me water the tomatoes. :)