31 January 2014

This Current Chapter

(Wrote this earlier this week and forgot to hit publish! Ooops!)

I'm dreaming in mushrooms, gnomes, tea cups and fairies right now. There is moss and glitter on our dining room table, contents that are being put together for a wreath and Sookie's fairy crown for her big birthday bash on Saturday. Lately around here it is long to dos and then celebrations when we get those to dos turned into big exclamations of tada! (Thank you Whippy Cake!) This current chapter lately is warm weather in the 40s leaving me itching for spring and all things rain coats .....and yet learning to embrace what is, today, right in front of me. A never ending and always worth reminding lesson in my story and life.

We are singing abundant amounts of both Pink and Frozen songs around here. Changing up the Pink lyrics to more appropriate Sookie level. Example? I'm gonna drink my milk, I'm gonna drink it now, Let's turn off the lights! And I love you tonight, I'm alright!

I'm reminiscing about this time 4 years ago I was cursing the fact I had to stay pregnant a few extra days because Fed Ex doesn't do deliveries on weekends. We donated my placenta for research (since, at this point, less than 10 women with cystinosis had experienced a successful pregnancy) and it needed to be overnighted to San Diego and therefore, I could not be induced on a Friday. Oh, life...you are funny. 

20 January 2014

Wake Up Laughing

Last night there were stars scattered across our bedroom ceiling sky thanks to a star projector Rory found on clearance. It brought such magic to her eyes and I always wanted to see it go and go and go until she created her own little place. We made wishes on those manufactured stars, still power in manifesting your own destiny, hey? Side by side, she and I held our index fingers up to the illuminated night sky, waiting patiently for fairies to land on them and sprinkle a little of their magic onto us.

We started the day with tickles, laughter, and silly antics. I sometimes cherish that goofy fog of the morning. Currently I'm writing little pieces of lots of things, Rory and Sook are painting and we are listening to my sunshine playlist on Spotify; complete with Carole King, Martina McBride, Chamillionaire, Lenka, and Florence + The Machine. We have diverse tastes around here, which I think is a result of both R and my dad working and owning (respectively) music stores. (Hey, remember those?!)

It is Monday! Yay for a weekend of productiveness and play, friends and family sharing playoff football games, rousing rounds of Chutes and Ladders, Sour Patch Line Ups (Um, have you tried those? Amazing. Completely worth a paleo cheat), connecting, good talks about everything that is real. Yay for seeing Pink in concert tonight (Eeeep! I'm ecstatic. Her show sold out in 3 minutes when it first went on sale. She was originally supposed to play back in October, but it has been rescheduled for tonight. I surprised Roar with tickets for Christmas!) Yay for life lengthening medication in my cupboard. (Grateful, grateful I have access to it. I never want to take that fact for granted.) Yay for coffee with organic raw honey and coconut milk. Yay for this year, this month, this week this day, stretched out before us laden with possibility.

17 January 2014

Love For Laura (A Story About Organ Donation)

Made with the Rhonna Designs iPhone app

Real life is far beyond more beautiful, twisted, brutal, and mesmerizing than any piece of fiction. 2014, you are reminding me of that in bold and stellar ways. 

Goosebumps have taken up permanent residence all over my body since last Saturday morning. Because her brother was determined unsuitable to donate his kidney to her at the last minute, my surrogate little cystinosis sister was on the UNOS list (United Network For Organ Sharing) for a mere two days, when they received the call there was a kidney waiting for her. Folks, this NEVER happens. Ever. If I was watching a movie with this plot line and a character received a kidney that quickly? I would laugh hysterically, shake my head, and remark "Ha! Only in the movies!" If you are someone who is lucky enough to be unfamiliar about the whole timeline of the organ transplant process, I will tell you that unfortunately people on the adult list can wait years for a kidney. Laura was on the pediatric list because she is still 17 for a few more months. A huge, unbelievable blessing! 

My heart was all over the map last weekend, waiting for the final blood results to confirm the kidney was a match and the transplant would go ahead. Frantically attempting to get a plane ride out to Atlanta so I could be there with them, but not wanting to plan ahead and jinx such a precious milestone. When the yes came I cried for Love For Laura and the life that awaits her. I cried for the family on the other side, giving even in the depths of grief. (I have been on both sides of this, and although we were not able to donate my sister's kidneys, I've felt every emotion on every facet of the whole experience.) Please consider being an organ donor, it is truly a sacred adventure. Laura gets a second chance at life now. We were able to chat over FaceTime with her while she was in ICU a few days ago and it took some serious self control to hold back oceans of ecstatic tears. Cherish what you've been given friends. If you've been blessed with two working kidneys, share one. If you have any questions about organ donation and the transplant process, I will happily answer them. My kidney transplant was 19 years ago and I needed this wake up call to remember what a treasure this all is. I am so lucky. I am so lucky I'm alive and planning our miracle girl's 4th birthday in a couple of weeks. I am blessed to be here, dancing in the shower with her while we sing Basia Bulat tall tall shadows at the top of our lungs. Please don't waste away the time you've been handed, do things with your life that make you feel joy and peace. We are all only here for a snap of time, build a legacy that will outlast your story. 

09 January 2014

On Faith, Magic, And Eternity.

From the moment I knew Sookie was growing inside me, I knew she was a divine gift. She conquers so many odds by simply existing. My grandma Kay was a remarkable person in my life, she was like a second mother to be, and our close relationship transcended into sisterhood and best friend area as well. She was truly one of a kind. She passed suddenly in 2003, 6 years before we found out we were blessed with the miracle of Sookie. I've always believed she (along with my sister who passed in 2006) had a hand in sending Sook to us and watching over me as a guardian angel through my extremely high risk pregnancy. The other day Rory discovered these veins on Sookie's foot that appear to spell Kay. These are the signs that give me goosebumps. These are the signs that make joyful tears cascade down my cheeks. These are the signs that remind me to believe in magic and eternity. 

03 January 2014

A Not So Ordinary Day

I love how a TED talk from Dr. Gahl (someone I've been blessed to be seen by clinically, most recently last month) turns my ordinary post holiday day of getting the house back in order, wiping Sookie's runny nose, cooking breakfast for my family, watching the Orange Bowl and munching sour patch kids, on the flip side. That side of oh yeah...this all might be boring and normal to someone else, but it is my triumph and conquering the impossible, little by little, each and every day.

He talks about Cystinosis in this TED talk for the first little bit.

Talk about reminding me to embrace the extraordinary about all things that make up an ordinary day.

01 January 2014

Grateful For Where We've Been (Excited For Where We Are Going)

Thought I would pop in and say hi! Hope you are all doing great! If you celebrate, I hope you've been enjoying the holidays with warmth in your heart and loved ones at your side. I feel like so much of time lately is a whirlwind of moments and laughter and memories. We have been blessed with slower days and taking a break from the (anything but) ordinary chaos and trading it up for Christmas and New Year insanity. ;)

Here is a little video of our 2013 that I made. Looking through all of these photos last night made me incredibly emotional, all the ups and downs, triumphs and failures, wishes and pitfalls, of these past 365 days. I'm thankful for the mistakes, because they fuel me to be better. I'm grateful for where we've been and excited for where we are going!

That infinite possibility and endless hope you are overcome with today? I wish that for you on every morning, because it is there waiting for you on every day of the year. 

Here's to miracles in this new year. Happy 2014.