first and foremost, can i tell you something about brittany? she is the real deal. no joke. several months ago, i attended a utah blogger meetup, all by my lonesome with my shy self. we were going around the circle, introducing ourselves and when it came to my turn, sharing my story in such a public manner moved me to get a little teary eyed. brittany promptly came over and gave me a big hug. we had never met, i had no idea she was going to be there that night, and i had only emailed her a few days prior about donating an item from the love stitched shop for a fundraiser. her kindness overwhelmed me; her heart is pure gold.
i am Tahnie from a happy girl.
i live with a chronic, incurable disease called Cystinosis that affects only about 500 people in the United States. basically, every cell, organ and tissue in my body is slowly crystallizing. i emphasize the living with, as opposed to suffering from; i live with pain most days, but i refuse to suffer in it. doctors told my parents that i would not live past 9 years old, but I had a life saving kidney transplant when i was 11 years old. i am a momma to an amazing little ball of light that is my 19 month old daughter. there are only a few others like her in the world, as there have only been 5 or so women with Cystinosis whom have been able to have children. (pregnancy with a transplanted kidney is a high risk situation, then add in the other complications of the disease and it was an incredibly scary and stressful road.) she beat the impossible odds up against her and i marvel at her existence every single day. below is a post i recently wrote about the winds of change of motherhood.
come celebrate life with me! xo.
**********
THE WINDS OF CHANGE OF MOTHERHOOD
these days the wind is quietly shuffling out summer and her hot rays, and in the same breeze, eagerly pushing in a softer warmth which is tinged with a crisp change. i am no longer momma, i have now become mommy. this little difference is an earthquake in my world, leaving ripples of aftershocks in her wake. her voice emphasizes the eee at the end and i shiver with delight each time it reaches my ears. i can't put my finger on why she has suddenly switched my title, because rory doesn't refer to me as mommy and i don't use it to refer to myself, but i welcome it. the same way i welcome the fact she is morphing into my little friend, as opposed to this little being i am responsible for. this little friend who conspires with me how to build the best fort possible, when we should be picking up and getting dinner ready. this little friend who i enjoy a frozen yogurt with on a sunny september afternoon. this little friend who makes me belly laugh and approach everything with the fascination of a toddler.
there are, in fact, advantages to being an extremely petite 4'11" momma; i am the only one at the park climbing on the play structures with my girl, counting down our descent from the top of the slides, holding her tight as we twist down the slippery slopes, her laughter exploding into the air promptly upon our arrival at the bottom.
i want to be the mommy that lets her jump on the bed, eat ice cream for breakfast, and teaches her how to feed her soul and see it grow to the breadth of its capacity, value her self worth over a boy's opinion, and knows how to stand up for herself in a way that is bold, and yet with rounded blurry edges that fade into kindness. you can be nice and at the same time not take anyone's bull; it is a fine, intricate, delicate balance.
i want to be the mommy that is there; every moment of every day, in every week of every month. the mommy that is present in each crack of a moment when you recognize it and poof...it starts to slip away.
the other night she was carrying around a photo from our trip to san francisco; she had scribbled on the backside of it with pen. for half a second i was ready to be frustrated over the fact she had ruined it. but she had this deep pride in her eyes when she held it up to my face, she was showing off her masterpiece, and she was utterly elated to be doing so. how could i be upset over that? i can print another photo any day, however i cannot recreate a moment so vital to her budding confidence.
she is saying more, owwie, and moon these days. my favorite thing right now is when she says something and i figure out what it is. she grins like the cheshire cat; message received. she gets so excited, her entire body shows her glee. communicating with her in this way is a new ballgame; one i am pumped to be a part of. is there anything better watching the little being you helped create, learning every day, yet completely extraordinary skills?
lately in the mornings when we wake up, i watch her smooth movements, her toddler body doing things that seem so mature, her eyes sparkling with possibility, her teeth set into a grin, ready for the adventures of a new day. i stare at her and wonder how someone so perfect could have come from a body such as mine, where so much is wrong.
it is really quite incredible.
still.
----------------------------------------
Thank you so much Tahnie for sharing your story with us and your view of motherhood - your daughter is just as beautiful as you are!!
I am SO lucky I was able to meet Tahnie in person~
I encourage you all to follow Tahnie and her adventures as a mommy
Her are all her links on how you can stay connected with her!
blog - a happy girl
facebook - http://www.facebook.com/ ahappygirldotcom
twitter - https://twitter.com/ ahappygirlcom
shop - http://stelladot.com/tahnie
(just a note, every single dollar she makes from her stella & dot shop goes toward her overwhelming medical expenses.)
Beautifully written! :) Thanks for sharing!
ReplyDeleteAwww... she's adorable!!
ReplyDeleteTahnie, you are such an amazing and strong woman and mom! thank you for the inspiration that you are!
ReplyDelete