Now

A year ago was a hard weekend for me. I cry just thinking about it. Yes there was hope in the air, but I felt so alone. I was more scared than I ever have been in my life. I was beyond exhausted, I was to be induced despite my gut feeling about it all; but what do you do when your health is in danger? Lose a kidney you worked so hard to maintain the function of? Apparently you try to make deals with your inner hippie who is screaming at you to avoid pitocin at all costs.

For the record, I should have listened to her.

But losing a kidney to avoid pitocin just doesn't compute, no matter how evil the stuff is.

I'm finally putting the finishing touches on Sookie's birth story. It has been an obstacle, because I am what my cousin Nicole refers to as "a labor grinch". It has been healing too though. I know labor is such an unpredictable event, but the complete loss of control is what I still grapple with.

Moving on.

This weekend has been laughter, love, and light. So much light, I'm a little blinded by it.

It has been R coming home from work early on Friday, stolen moments of reconnecting with those two crazy kids we were 4 and a half years ago when we first fell for each other, yummy Chinese food that didn't give me a gallbladder attack, for which I am incredibly grateful for. It has been the anticipation of new lives joining this crazy beautiful world; two little guys, one on the Boyer side, one on the Hampton side. Sing-a-ma-jigs, lots if them. Sookie was equal parts intrigued and terrified by them. A fun girls day with my Momma and the girl who made me a Momma. Oodles upon oodles of pink and purple candy invading every corner of our house in preparation for her big party next weekend. Sookie showing off her hula hoop skills. Laundry made anything but mundane with the assistance of R singing 'Every Rose Has It's Thorn' while Sookie and Jack find endless enjoyment in a down comforter just out of the dryer.

If you could see the inside of my heart, it would look like this:

We've raised $655 for Cystinosis so far. I am so thrilled! Keep spreading the WORD.
A donation of $10 makes a difference!

Project 365: Week 3

{1.16.11} Sookie's first taste of scrambled eggs.

{1.17.11} Sweet girl

{1.18.11} Dinner: spaghetti and red wine wit ice and 7-up (yes, I'm weird.)

{1.19.11} Playing in her favorite place, the bathroom.

{1.20.11} This sign cracks me up!

{1.21.11} She looks like such a big girl  here.

{1.22.11} Gorgeous mountains are why I love living in Utah.

The Women

{Linking up to The Gypsy Mama for Five Minute Friday. The prompt this week is 'The Women'}

GO:

I'm in awe at the strength of the women in my life. They trudge through horrible adventures with smiles on their faces. They are near and they are far. Two women who know me the best in this life are oh so different. One, my mother, who I see nearly every day. The other, a best friend who I haven't actually seen in years, but knows my in and outs and my secrets.

I think of this web I have woven together of support. The glistening thread that is our support system.

I wonder how many women in my life handle what they have been dealt. The momma's with children with Cystinosis the devastation of what the loss of a "normal" life is all about, the strict medication regimen, the stabbing pain in your heart at the sight of your child in pain, enduring blood tests after test.

I envision Sookie's future; the type of stunning women she will keep in her little network of goddesses. I wonder how she will find them, if I will give her enough wisdom to choose them wisely. I wonder if she will be the bossy diva of them all, if she will be the momma and take care of everyone, trying to mend their broken hearts. Is it crazy I trust her choices already?

DONE

This Year

This year.
This magical year.
This challenging year.
This year I met the most fantastic human being I've ever had the honor of meeting.
This year I grew more tangled into the one I created her with.
This year I dug deeper and thought about things I never have before.
This year I questioned my decisions, our decisions, and the impact they would have on her life.
This year I became a different woman.
This year I found new pieces of myself.

There are multiple times a day when I stop and think, she knows so much more about life than I do. No, she isn't walking yet, but she has it all figured out. She smiles at me with the beams of someone who knows all the secrets of the universe.

My wish for her birthday? A fundraiser for the Cystinosis Research Network and big hope that I will be around to watch her grow up. CRN has been working diligently to improve the lives of those who live with Cystinosis. They have made tremendous strides in the last 15 years so that I can live bigger and better, and so can other members of my sweet Cystinosis family. My mother was a founding board member, and now I serve on the Board of Directors myself. My goal is $1,000; which is a lot to us because we do not receive any government funding for research. Because of that, the families and friends in our community must raise every single penny ourselves if we want improved medications that don't include one that destroys our GI systems and must be taken every 6 hours, or eye drops that are reccomended to be put in every hour to prevent blindness. I'm asking for a donation of $5, the price of a coffee from Starbucks. It truly doesn't take much to make a measurable difference. You can donate and read more HERE. If you feel so inspired, please share this on facebook, twitter, your blogs. I would love to see this reach people out there who have never even heard of Cystinosis. (Which is most of the population, but still.)

Thank you. 

Feet

The other night, Sookie slept in her crib for 8 hours. Eight hours straight. This is revolutionary for her. I woke up every hour to make sure she was still breathing. I still have tremendous anxiety over SIDS. I realize she is going to be a year in a week, but still. I missed her. Silly, I see but oh I missed her. I still don't quite truly believe I deserve her. I know that I do but I feel like sometimes this is all a joke and she's going to be taken away from us. It is an ugly place to venture to in my head and that is why I have to quickly exit it and make sure the door is shut tight.

And then I go to Target in Utah County and let myself get incredibly angry with people who aren't grateful for their children.

I want to wave a magic wand over the world so people can be grateful for what they do have. But then I feel like a hypocrite because it is a trait I still need to work on in myself. The whole idea of I once cried because I had no shoes. Then I met a man who had no feet. For me it is, a year ago I wanted nothing more than to survive labor and delivery to meet our sweet daughter and now I'm having a hard time keeping my chin up because all that came true, PLUS she's healthy but I continue down my path of a chronic disease. Just typing that makes me want to smack myself upside the head.

I missed a few days here because when I don't feel well, it has become quite the journey for me to focus on the good. I don't want this blog to become a place where I whine about being in pain and not receiving answers from doctors. (Just a little note: yes I've been told about the gallstones, but no one I have seen can figure out my hip pain and this past week it has been debilitating.) Although it would feel freeing to have that outlet. Medical battles are rough. All of them. They are further complicated when you are a Momma. Then it becomes really interesting when you have health issues, are a Momma blazing new trails, and can't find doctors who will educate themselves about your disease.

But I don't want to focus on that. I have many family members who have their own medical concerns right now. It is emotionally draining, mentally taxing, sometimes you just want to wash away. I want this blog to be where my focus is light, joy, gratitude, simplicity, hope, love, peace.

I read things on twitter and facebook, people are having a bad day, complaining, which of course I am as guilty of doing as everyone else. But sometimes I want to ask if they have lost a loved one today, or if they are on a transplant list waiting for a kidney. If you think about life that way, chances are you will have many more good days. Sometimes I have to ask myself those two questions too.

One Word (Friend Makin Monday)

My head and heart are abuzz with so many emotions, I'm full and can't decide on what to write about these days, so I'm joining in on Friend Makin Monday for now!

Answer each question using only one word...

1. Where is your cell phone? table

2. Your most significant other? stellar

3. Your hair? red

4. Your mother? saint

5. Your father? zen

6. Your favorite? Sookie

7. Your dream last night? worry

8. Your favorite drink? water

9. Your dream/goal? legacy

10. What room you are in? family

11. Your hobby? writing

12. Your fear? negativity

13. Where do you want to be in 6 years? happy

14. Where were you last night? sleep

15. Something that you aren't? weak

16. Muffins? please

17. Wish list item? health

18. Where you grew up? utah

19. Last thing you did? Target

20. What are you wearing? flowers

21. Your TV? off

22. Your pets? jack

23. Friends? best

24. Your life? unbelievable

25. Your mood? tired

26. Missing someone? sister

27. One place that I go to over and over? anxiety

28. Something you want: peace

29. Your favorite store? sephora

30. Your favorite color? purple

Happy And Good

I made up a silly song to sing to Sookie (wow, that is a tongue twister!) when she is upset. It goes something like this:

everything is happy and good!
happy and good!
happy and good!
...in this house

There are also other verses that replace "house" with "in my life" and "in this world".

Yes, I am quite the poetic songstress. I am well aware. I'll accept my Grammy now thank you.

Speaking of Grammy's... American Idol tonight reminded me how much I adore Steven Tyler. I have loved him forever and a day. I met him when I was 17. It was during an incredibly scary time health wise. I won't start with an intricate list of depressing details, but I had a PICC line in my arm at the time. He was exceedingly sweet to me. So sweet in fact, we have a joke in my family now that the reason he was outrageously kind is because he is my "real" dad. Of course, this has absolutely no merit, but I think it is funny. My dad does too. I have to say, my dad is the most wonderful man ever and I have a stellar relationship with him.

Sookie weighs about 18 pounds. This is giant to me. I realize this is still little for her age, but wow she seems so big. I love it. Considering she was 5 pounds when we brought her home. And to think back to the day when she was the size of a sesame seed in my body. The human body is such a marvel.

She said Target today. Twice. I kid you not. Perhaps I take her there too often?

She also picked up Daddy's green guitar pick and pretended to comb her hair with it. I giggled like a little girl in pig tails with a rainbow swirled sucker.

Today was an in your face reminder how achingly sweet life is. I hold onto days like today. The sun actually came out to remind us of all the beauty that is present every single minute. There were kisses from Sookie I have dreamed of my whole life; they were a million times more blissful smashed right up against reality. There was laughter from her soft little mouth that was so perfect, it took me right back to the day she was born and that impeccable feeling of every capillary in body bursting with the deepest peace I have ever known.

I'm looking up and ahead, up towards everything this flourishing year holds, ahead to Sookie's first birthday, Valentine's Day, Sookie's first trip to New York. But I'm also firmly planting my feet in the now, in things such as the preparation for her party, the simple act of having a quiet afternoon of play time with her; so as not to miss any of the pieces of brilliance suspended in the moment.

What We Wore Wednesday (brought to you by Target and Old Navy)

Okay, this post isn't really brought to you by Target and Old Navy, but doing these wiww posts makes me realize I could just upload photos and say, "Uh, bought most of this stuff from Target and Old Navy."

I know there have been a lot too many photos of me around here lately and trust me, that is not because I adore taking pictures of myself. I'm definitely not comfortable with it, but it is an ever constant exercise in self acceptance and gaining back confidence nearly a year after giving birth. So, I just wanted to say thank you for going on this journey with me.

Additionally, I wanted to say I usually don't do lower half shots because I always wear dark jeans. That is definitely something I need to change up and have more fun with. I wear cute shoes though, I have a weakness for shoes. I should take photos of them next time.

Purple striped shirt - Old Navy
Yellow ruffle cardigan - J. Crew
Tiffany Blue POM POM Headband - Little Miss Momma

 
Black striped shirt - Target
(Why yes, I am indeed having a love affair with stripes lately!)
Liv Multi Charm Necklace - Stella & Dot

Okay girls, I'm keeping it real here. I wore this as pajamas and I laughed at myself for how hopelessly random it all is.
White long sleeved tee - Target
Hanson shirt - Purchased on tour last September
Oh so fabulous gray zebra striped leggings - Target (clearance)
Monkey Muk Luk socks - Paul Frank at Target

Ruffle plaid shirt - Target
Jeans - T.J. Maxx
Boots - Go Jane (my latest obsession, some of their stuff is super trendy but they have cute stuff too, I promise!)
Earrings - Fringe Hoop Earrings Large Silver Stella & Dot

On Sookie:
Hat - Gap
Shirt - "Spending time with you is the greatest thing to do." Target
Pants - Target

Shirt - T.J.Maxx
Sweater - Nordstrom Rack

On Sookie:

Hat - Gap
Shirt - Target
Pants - Target

Okay we are obsessed with the kitty hat around here. Well, alright momma is. But it is just too stinking cute!

Hat - Gap
Black Shirt - Target
Pants - Gift from Derek and Anzana
Jewelry - Stella & Dot Little Girls Line

Project 365: Week 2

{1.9.11} My crazy mohawk girl who looked like a boy that day
Her hair is getting so long!

{1.10.11} Bath time!

{1.11.11} My new favorite perfume

{1.12.11} New shoes for Sookie!

{1.13.11} My new pillow. I'm in LOVE. My dad told me he hates it. Ha.

{1.14.11} I saw this shirt at Target and it cracked me up. For Sookie of course. I didn't buy it though! I was strong. Okay, hopefully she will get it for her birthday.

{1.15.11} My amazingly talented cousin Tahsha live and in concert.

Sweet Shot Tuesday (1.18.11)

I wrote down the right date this week! Ha, I'm on a roll. Perhaps tomorrow I will finally conquer my growing mountain of laundry. :)

I'm linking up to Sweet Shot Tuesday again this week, although obviously I am not a photographer. I am learning a lot though just by playing around with my favorite subject. I can't help but take several photos of her daily. She is changing every minute it seems. My mother heart aches to capture every moment, and then some.

Self-Portrait

I took a bunch of photos today for Ashley's self-portrait link party. These are the only two I liked enough to post. But the fact that I'm okay with two is a good step, right?

This is ME. A stressed out Momma who is worried about her own health, wondering constantly if she is doing enough for her funny girl, always second guessing her parenting choices (even after four years of child development classes), smiling, finding the sugar filled minutes, catching the magic in motherhood even through the leaky diapers, sleepless nights, and S's new found fascination with the toilet.

Yes, this is me. Attempting to make the most of what I do know, cherishing kisses and hugs from our girl, and being silly every now and then. Mommyhood is not for the faint of heart, but oh how sweet it is. How very sweet.

Awakening & Sweet Nella's ONEder Fund

Life is good. Life is beautiful. Life is magical.

My life is good. My life is beautiful. My life is magical. I know these things deep down, I wish I didn't ever start to drift from them and get caught up in things that really don't matter or the really big, scary things on my mind lately. Namely, my health. After Sookie was born and after my 6 week postpartum appointment, when I knew my transplanted kidney had survived pregnancy and labor, I entered a strange head space and attitude toward my health. I tend to do this sometimes. I'm not proud of it but it was as though I felt Sookie was okay, nothing else mattered. It is draining, year after year, to put up with doctors who don't listen to me or value my knowledge of my own body. This gallbladder ordeal is frustrating to say the least. I have a group of doctors telling me one thing, more saying the complete opposite. I miss eating. I've lost all of my baby weight and then some. I'm constantly hungry.

The thing is, I simply don't feel surgery is a good option for me right now, no matter how many times certain people tell me it is the only way. I'm still recovering from a pregnancy I was never supposed to go through.  I don't feel surgery will aid in this process of healing. Also, something that further complicates this mess is that I've been told I'm not a good candidate for laproscopic surgery because of my kidney transplant.

However, I'm turning a corner in all of this. No, I don't know why it has taken me this long to realize I need to put my foot down. I have grander things to do, more of me to create, plans for my family, my girl, my future. Basically, I'm not going to take "We don't know why you are in pain." for an answer any more. Yes, some of it is a gallstone that is too big to pass, but there is other stuff going on that has no explanation and I'm beyond tired of dealing with all this pain. I deserve better. I deserve a much better quality of life than I have been settling for the past year. I have a big life to live and a magnificent little baby doll of a gal to take care of and have endless tea parties with.

Speaking of being empowered.

There is a magical, inspiring, goddess of a woman named Kelle Hampton She lived out one of my worst fears last year when she gave birth to a precious baby girl who unexpectedly had Down Syndrome. She knew before the official diagnosis came. She wrote a story about the birth with brutal honesty that not many people are capable of. She grieved the loss of normalcy she was so excited to live out with her two amazing girls. (And honestly, I'm sure she still does. Grief is a circle; I know that far too well.) She sobbed for hours.

Then she picked herself up, found support, and started making things happen.

Baby Nella is turning ONE on January 22nd and to celebrate her incredible life, Kelle has started Nella's ONEder Fund in her honor. All funds raised will go to the National Down Syndrome Society. You can read more about this big deal HERE.

Well of course I wanted to do my part so from now until January 27th, I am donating 40% of my sales from my Stella & Dot business directly to Nella's ONEder Fund. It is a brilliant combination of geniunely making a difference and picking up some beautiful to jewelry to wear as well.

To help me keep track of orders, this is what YOU can do. Yes, you.

Go to my Stella & Dot website here, http://stelladot.com/tahnie Next, in the upper right hand corner, underneath StyleWatch, there is a link that says 'Can't make it to the trunk show? Find your hostess' click on that.You will then put in Nella's ONEder Fund for the hostess information. Nella's for the first name and ONEder Fund for the last, click search. Go ahead and click on Nella's ONEder Fund, click continue and shop!

Please pass this along on facebook, twitter, your blogs, etc. This is a chance to be a part of something so much bigger than anything we can do alone. 

Friday, Friday (The Hard Times Pass Like The Good Ones Do)

Way back when I had a personal website, was 15 and wrote horrible poetry, I always used lyrics for the titles of my journal entries. Maybe this is my attempt to feel young again. Maybe I will indulge in this teenage cliche every Friday when I remind myself of the little nuggets of thrill that composed my week.

We had a strange yet perfect mix of Brak, Sugarland, and Kings of Leon as the soundtrack to our morning.

Today was a treacherous day emotionally. There was too much negativity swimming around my veins. The littlest things left me on edge and snippy. The biggest fears overwhelmed the tremendous hope I have in the now and the joy I see radiate from little Miss S. I don't like it when I have these days, but I also wonder if I would be human if I didn't have them once in awhile.

I don't want to dwell on any of this though. Things that made me smile this week or that I simply enjoyed?
Newman's Own Italian Dressing, Winter boots, Valentine hand towels, my new green rose pillow, guilty pleasure indulgences such as Days of Our Lives and Valentine Peeps, Sock Monkeys, Stila's Lip Glaze, and new towels that are so soft you want to stay wrapped up in them all day.

Oh, and the Target dollar bin. I can be grateful for that two weeks in a row, right?

My head is swirling with ideas for Sookie's party. I have a million things I want to do. Endless ideas for projects and things to make; both decor wise and edible. I find myself wishing we could go all out, but then I pull myself back in and am reminded of the bigger picture here and the idea is not to get frustrated about a silly party, the notion to be cherished is this and this alone: She is here. She is healthy. This is bigger than anything else.

One of her favorite things is to open and close the door while playing peek-a-boo with me. Today was no exception to this new found wonder.

(Hang on Mom, I need to suck my fingers for a minute)

(Okay, I'm ready!)

I was packing up the car and apparently she got bored waiting for me and decided to study her shoe.

Did any of you play peek-a-boo with a cute kitty today?

Onward and upward. I'll take what made me worry today and learn from it. Tomorrow is a new day. I have two angels (okay three if you count Jack) fast asleep in bed. I must go cuddle with them in order to start this weekend off to a stellar start and live it out to it's full potential.