roller skating with rickets

rickets is a term used to describe soft bones that can be formed incorrectly due to a deficiency of vitamin d.

(that is my simple understanding! ;)

many children with cystinosis often exhibit rickets first as a sign that something in their bodies is amiss.

the kidneys flush everything through and thus, lose vital vitamins (say that 10 times fast! ha.) and minerals in the process.

rickets can cause pain when a toddler is learning to walk, as well as during other activities that young kids enjoy.

but jess?

oh, she wanted to go roller skating.

because she is amazing, courageous, and yes, i dare say it...ballsy like that.


her memoir is now available through barnes and noble and amazon as well. however it is on sale at barnes. ALL the proceeds will be donated to cystinosis research. you get a remarkable tale of survival, grace, wisdom and gratitude, full of thought provoking questions and challenges to grow your soul, plus you are helping out our small community. now, the only thing better than that would be if the book came with a complimentary pack of peeps, right? ;)

an astoundingly beautiful excerpt:

I have heard it said repeatedly over the course of my life that having a child with cystinosis is a tragedy. There are those who hate the disease and feel guilty for bringing additional suffering into the world, especially the world of a child. This is a perplexing point of view for me, especially given the subjective and personal nature of the word suffering.

Maybe our genes are at war, but my world is one that is filled with healing blessings that wouldn't exist without cystinosis. Like the fictitious child of Ebregisel and Beretrude, I am a unique creation and the object of abounding love.


I wouldn't change a thing.

winner and some wonderful gals!

happy weekend!


the winner of the large ad sponsor space on crowley party is... ginny at chasing sunshine! congrats ginny! please email me at tahnie(at)gmail.com


(if you haven't checked out ginny's blog, do it right now! it is so wonderful and inspiring. i know you will love it! a happy place to be indeed! ;)


i wanted to share some of my fabulous march sponsors with you today! they are making the blogosphere such dear hearts. i'm grateful to them for supporting the blog!


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Hello! My name is Megan Robinson and I write over at {And here's to you, Mrs. Robinson}. I love to have a place where I can go to express my thoughts, share my stories, and hopefully inspire and uplift other women. I like to talk about womanhood, motherhood, marriage and everything in between! I believe that through blogging we can create a strong, community of women that can support one another through the good and the bad. I have loved getting to know so many bloggers already and would love to get to know you! So please stop by and say hello! 





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Jewelry and fiber accessories for the spirited, spiritual and elegantly feminine discerning chi-chi, for every day wear and special occasions. A range of designs to suit your mood and style - healing/inspirational gemstone for mind body and spirit, vintage inspired, shabby chic/country cottage, bohemian, rustic, dressy, whimsical, girly & more.






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Fawn and flora is the love child of two incredible ladies. Their idea was simple. A pretty shop that carried supplies and items to help other small businesses and DIYers add a touch of whimsy to their work. The name Fawn & Flora symbolizes aspects of the girl's other projects. Heather, being the creator of Just Lovely Things makes floral hair accessories among other things, while Dana mostly creates plush forest animals under the name of Wonder Forest. 




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Turn a pair of your tired, sad shoes into happy, sparkling, fabulous glitter shoes! They are so much fun and put an instant spring in your step. Katherine did a pair of mine in a gorgeous champagne color and I receive so many compliments when I wear them! There are few things better in this world than breathing new life into an old pair of your shoes!



Check them out and treat yourself to a little goodie today!

Hope you are having a fantastic day!
xo.
tahnie

live life in color

i'm missing my sister fiercely, this is something that never changes. spring brings it all rushing to the surface, to the point it seeps out of each pore. the anniversaries are what propels it; her passing and her birth, both coming up in the next two months. it is six years today since she has moved on from this world to a better one, another plane much more suited to her beauty. i do know that much. oh, i believe that much with every ounce of hope in my bones.

she taught me to live in color.

i see beyond the coincidence that the holi, festival of colors is so close to when she left us.

we splattered colors all over each other sunday afternoon.




last year i had visions of this year. our two year old happily making a huge mess. wondering why she was allowed such crazy freedom. perplexed as to why everyone was making such a disaster of themselves. curious as to why we don't participate in this much more often. reveling in the happiness so heavy in the air.

and you know what?







...it was all there. and when you see a dream come alive, no matter how small, it creates something inside of you that gives you the ambition and drive to keep going forward. no matter what.


i have very real fears about my health, things that i know will eventually happen to my body. but i saw through this little fairytale of taking my daughter to the festival of colors, when last year it seemed so far away, so unattainable. the fact that it happened makes me feel unstoppable. what else can i take on?

i know how silly that must sound. but it makes sense in my head. (& my heart!)

(something i wrote this morning)

I was going to write about how grief is a beast, and it never leaves you, and how 6 years later it is fresh and raw and hurts like hell. Then, I discovered a good omen lady bug in Sookie's hair after we had been playing outside and I wanted to write about S being her guardian angel and how I think she is the reason Sookie made it here alive and how complex it is for me to attempt to wrap my heart around the notion they couldn't ever be here together at the same time. Then, we went back outside to wait for Poppa and Glamma to pick us up and Sookie smashed 
the poor lady bug on the driveway. Oh, life. ♥




Crowley Party Giveaway!

This weekend is going to be amazing! I know this because it is kicking off with something as spectacular as this incredible giveaway! I'm super excited to have Alycia from Crowley Party doing a wonderful giveaway to you insanely beautiful people who support and read this blog. Alycia is such a gem! Thanks girl!


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Hey guys! I am so happy to be over here today :) and am excited to offer all you bloggers, shop owners, social media gurus, you get the idea? a little treat!

My name is Alycia Crowley and I blog over at Crowley Party, where I talk about my life, fashion, food, crafts, pretty much whatever interests me! My husband and I think Life Should be a Party (hence the blog title Crowley Party) and that we should enjoy all the little to big things in life :)

Lately I have been trying to be more creative and have some fun, so in order to do that and push myself, I am hoping to open up a little online shop within the next month or so! It got me thinking about all the other blogs and shops out there that are just starting out or looking to expand. Things cost money, which we all know we want to save some money, so I thought it would be fun to offer people some free advertising space on my blog!

Today I am giving away a Large Ad Spot (30 days) on my blog to one of you readers to bring some attention your blog or your shop, or whatever you want promote! You can decide when you want to start your Large Ad, it can start whenever you want!

Here are some details behind my blog to intrigue you:
I have over 2300 followers on my blog via GFC.
My blog averages about  1,000 to 2,000 hits a day and I get about 47,000 views a month. 
I would love to help you bring some attention to your creative endeavors!

How To Enter:
Mandatory:
Be a follower of the Crowley Party
AND
Be a follower of A Happy Girl.
One entry.

Additional entries:
Follow @ahappygirlcom on twitter
Leave a comment for each entry!




If you are a first time visitor to my blog, welcome! Thank you so much for stopping by. The gift of your time is much appreciated! If you would take a few minutes to educate yourself about Cystinosis I would be forever grateful. I am on a constant mission to spread awareness of this condition I live with, the challenges that come along with the disease itself, the issues we run into with how rare it is (only a few other people in Utah have the illness), but most of all? That choosing happiness is always always an option in life, no matter what you are facing. Sometimes you have to create your own potent hope. Sometimes you have to refuse to be held back by limitations. Hey, I did when I pushed the boundaries and joined the elite and powerful group of women with Cystinosis who have been able to have a child. This is a small group of about 10 in the world.
Yes, 10.

Thank you so much for listening!
Find beauty today.
In the little things, in the big things, in LIFE.
Do something that scares you today.
Let your kind words flow. They are incredibly powerful.

Make today a good day! :)

Giveaway will run until Friday March 30th.




I'm With You Kid

today is a good day! i'm really ecstatic to be a part of the gathered thoughts link up over at lovefeast table! the idea is based on the 365 gathered thought box that is a collections of quotations to get your heart and soul moving and grooving, to pour that inspiration into your art, whichever form that may take. 






my quote prompt:


life loves to be taken by the lapel and told: 
i'm with you kid, let's go. 
- maya angelou






can i tell you a secret?

i can be really fun when i let my hair down. i'm a goofball when i let my wavy strawberry blond mane dance in the wind.



*and i do that, believe it or not. i know i have a tendency to be serious here all the time, and i think it is something i want to change. r mentioned something to me a few days ago about showing my fun side once in awhile. i love this idea! :p

i've slept on the garbage scattered glitter laden, cockroach inhabited streets of new york to get a good vantage point to a concert, for which i already procured tickets. more than once.



i've been in the midst of possessed soccer fans celebrating a win on the streets of the champs-elysées in paris in plain old fashion rioting behaviors. this innocent little utah girl simply wanted to visit sephora for the 5th time in three days. 


once? i even arranged green sour patch kids into the shape of a peace sign in a grocery store parking lot. true story. ;)


the idea of grabbing life by the lapel and chanting excitedly, i'm with you kid, let's go. it mimics my life. this road i'm on is nothing what i ever thought. when you challenge your dreams, they have a fantastic, magical, unbelievable way of rising up to meet you, right on the cusp of beaming brilliance. it all mingles together to create this wonderland of someplace dreamy, rose tinted glasses and unicorns scattered throughout.






the funny thing is, when you dare to truly live? when you make that conscience effort? that intentional move to fill the moments with 100% potent purpose? life sings her sweet song, laughs belly shaking glee, turns to you and says "you have no idea how beautiful this is going to be."




Let's Play Hide And Go...

I love this child. I'm so happy she's mine.



I hope you are having a wonderful weekend! Soak up what is left of it!

xo.
tahnie

i'm a warrior

hi!

i'm here. i'm alive! :)

it feels strange to go that long between updates. i started this blog for sookie, but i want to document this life for selfish reasons as well. i'm the first to admit that i'm a flawed woman and yes, the title of this blog is indeed a happy girl after sookie's vigor for each breath she exhales and inhales. therefore, i don't like to dwell on the many reasons i am a flawed girl.



i had an appointment with a new speech pathologist today.

but i didn't go.

i didn't have it in my heart to explain my situation to a stranger, that cystinosis is progressive and there is no rehabilitating lost esophageal muscles, then beg for a prescription for a medication that might assist in delaying the muscle wasting i am experiencing in my hands and swallowing muscles.

i went to five guys with my mom and sookie. i ate a giant bacon cheeseburger with EVERYTHING on it while sookie slept in my arms and the sunlight poured through the windows. i talked with my amazing momma about important stuff and silly things.

i was content in that moment.

life is too short.

i've definitely gained weight since november and my trip to NIH, but...there's a silver lining in this. the problems i've been having with swallowing have propelled me into this nirvana of savoring what i eat, letting go of the ridiculous standard of beauty of what my body needs to look like. and really? after a kidney transplant (my mom's kidney is in the front of my abdomen, as they left my two original kidneys in) and a baby, skin has shifted. but oh the gifts my body has given me and the feats it has overcome! cherishing dear calories is my rainbow in all of this!



speaking of life being too short. look what arrived in the mail today! it was a sign; i skipped my appointment and my choose joy necklace came! (haha, just kidding!) i've been coveting this necklace ever since it first became available. ashley hackshaw of lil blue boo is a stranger to me, but has taught me so much in the last several months. her story is overwhelming and yet her attitude one of the brightest i've ever encountered. having endless medical bills myself, i loved that all proceeds from this necklace will go toward her health expenses. making peace with the fact i won't carry another baby has been a rocky road for me, and it has come as a startling surprise because i thought once sookie was here, healthy, the peace would come quick with the notion of you have one perfect miracle, that is all you need. so i connect on that sacred level with ashley. rory actually ordered me one before we made our impromptu vegas trip for valentine's weekend! he wanted to surprise me but i have been such a brat about it, pestering him, he finally had to tell me one was on the way for me. i'm blessed from the tips of my ears to my little toe to live life with this guy.

so, in all honesty, i'm feeling discouraged with certain things, but i'm not out for the count. there are many facets i need to fight for and perhaps i'm giving myself a few weeks to store up the guts, cultivate the quiet roar i will need to advocate and fight for my best days, from doctors who have never even treated anyone with cystinosis. and that all has to be okay. because it is my role right now and i finally get what an honor that is.

truly, so many things are on honor. a privilege. i'm healthy enough that i don't live with my parents. i'm capable of doing laundry! how awesome is that? i am bestowed the greatest gift ever...of TIME with my girl, to be her primary caregiver. my life is big and full and i have a to do list that grows and expands and i feel a jolt of c'mon baby, let's do this! each morning when i greet the sun with hope filled eyes.



my friend jess wrote this definition of cystinosis. i happened to find it today. i love her to pieces.

happy friday!
may you greet it with hope filled eyes!
xo.