31 December 2010

2010 Top 10 Blog Posts

Yes, I'm doing a lot of Top 10 lists around here lately, but I can't help it. There is something ultimately satisfying about neatly putting the year into lists and numbers. Especially when it was the biggest one of my life.

So far.

Here are my top 10 posts of 2010:

Top 10 of 2010 of Miss Sookie

I'm linking up to The Paper Mama's Top 10 of 2010 to share my absolute favorite top ten shots of Sookie from this past year.

If you know me you probably realize what a tedious task only picking 10 photos was for me. People tease us about how many photos we take of Sookie, but I am so grateful for every single one of them. They capture the moments with her I might forget and that is simply precious. I've been looking at invitations for her upcoming 1st birthday party and this simple act has already pushed me to tears on more than one occasion. How does one year fly by so painfully, albeit beautifully fast?

(1) She is about ten minutes old here. R snapped this with the iPhone. I've never been more relieved in my entire life!

(2) This is in the hospital. I love her skull hat and her teeny tiny sweet feet.

(3) She is 5 weeks old here. I adore the tenderness that was our new little family then.

(4) I snapped this for the story I wrote of my pregnancy for the Spring/Summer 2010 Cystinosis Research Network newsletter. Her innocence here melts my heart.

(5) This was in June in Great Aunt Doe's back yard.

(6) I took this one at the park during a fun little family picnic that just the 3 of us shared on the very first day of summer. I love how her joy covers her whole face!

(7) Many afternoons this summer were spent on our front lawn; complete with blankets, toys, books, and of course sunshine!

(8) This was on Labor Day. She was 7 months here. The glasses kill me.

(9) She was 8 1/2 months here. This was taken at cascade springs during a wonderful visit from my incredible and kind friend Shelby.

(10) This one is a favorite because it sums up our year and really, her simple but extraordinary existance.

28 December 2010

Joy & Light

{Our family: Christmas 2010}
{Happy Christmas!}

There is so much to document about these precious, busy, and memorable days. I could write until my fingers fall off. I am tickled pink to see all of this through Sookie's sweet and innocent eyes; she doesn't worry about what she's going to wear or if a hair is out of place, she doesn't stress over being exactly on time, she is able to be fully present in the moment and see explosive joy in everything and everyone.

Things are chaotic around here; we are spending time with family, trying to meet up with them all before they make their way back home, making sweet and yummy treats to give away, running around, delivering gifts, trying to catch a few rushed but still important words with each other, all while trying to keep up on laundry and have some cherished seconds as our family of three. Our house looks like the north pole was hit by a tornado, but my heart reminds me that is all part of the crazy Christmas dance. And we are beyond soaring with the knowledge of how lucky we are that we get to celebrate this all with a healthy girl and a momma with a functioning kidney.

24 December 2010

A Small Left Ventricle

(I wrote this Wednesday the 22nd, and am just now posting.)

I've been reflecting a lot lately. This time of year always brings it out in me, but with the events during the pregnancy that all occurred last year at this time, these days the past is on my mind a lot.

(That has always been a battle of mine; living in the past.)

A year ago today I was on bed rest except for doctor's appointments. I had a long day ahead at the hospital, appointment with my actual doctor, blood work, non-stress test. (This was all the Tuesday after I spent the night in labor and delivery because of concerning contractions.) During the NST, Sookie's heart rate was irregular and they set up an unscheduled ultrasound. I knew they were watching us both closely but it felt so out of left field. Her other NST's had been fine. I had an ultrasound just 2 weeks prior and nothing was of concern. I still remember minute details from that day. The sweet but perky NST nurse who was way too positive even in the face of potential life changing moments. The jittery with anxiety maternal fetal medicine specialist, who talked in a low voice with the ultrasound tech about my daughter like neither of us were there. I remember tears cascading down my cheeks during the ultrasound. I remember thinking I have risked my life for this child and it still isn't enough to get her here safe. I have stopped medication that is crucial to my own health, yet will most likely harm hers.

I was told to see a pediatric cardiologist at the children's hospital here. Someone would call me to set up an appointment. We received this news three days before Christmas.

Fast forward 20 or so minutes later; sitting in a restaurant with R and my mom. Trying to force food down, but crying instead. Our poor waitress, I felt so bad for her. Then we received a phone call. My sweet cousin S had suddenly and unexpectedly passed on during the night.

I immediately felt selfish. Yes, Sookie had heart problems. Yes, I was panicking, anxiety filling every fiber of my mind. Then I was so quickly reminded how it can all be gone. Just like that. Life itself. I made some sort of bizarre deal with myself that if we were blessed enough for her to make it through delivery and we were able to bring her home, I could handle anything.

I write about this because it is part of Sookie's Story. I write about this because it had a huge impact on my emotional well being on Christmas last year. I write about these things a year later because writing has always helped me sort my thoughts and emotions. To me, when I write, it is like organizing my closet. Sounds silly, but it is true. Oh okay well this shred of fear goes in this little box over there...and so on. Yes I still get upset thinking about that day even though I shouldn't. After two trips to the pediatric cardiologist, which included a fetal echo during my pregnancy, and another echo on her when she was just a week old, they said her heart is perfect.

{Our sweet little one getting her EKG before her echocardiogram.}

Things that are making me happy these days? Sookie feeding me some of her pomegranate (her newest food obsession), Sookie simultaneously growling and kissing her reflection on my laptop screen, rain instead of snow, toffee, Sookie's face at her first taste of Red Rocks' homemade root beer, heated seats in my car, Sookie saying "book" the other night, and gingerbread lattes.

21 December 2010

Things You Should Know About Me If We Are Going to Be BFF

Ashley over at Little Miss Momma posted a fun list the other day entitled Things You Should Know About Me If We Are Going to Be BFF and she has inspired me to do the same.

I'm not proud of it, but Days of our Lives is my guilty pleasure. My mom and I are both hooked.

I have 3 kidneys; only one works.

I met Hanson for my Make-a-wish.

I completely adore the idea behind the iPhone app Monster Meter. If your kids think they have monsters in their bedrooms, this app "scans" the room and tells you it is safe. Isn't my sweetie brilliant? This is his company Appdicted.

My parents are the most supportive and loving people. I am so lucky for that.

R and I met on Match.com Our first date, he didn't pay for my coffee. I thought "Who does this guy think he is?"

I learned to read when I was 4 years old.

I graduated from the University of Utah and had my transplant at the hospital, therefore, I am a fiercely loyal fan of the Utah Utes football team.

I am a complete night owl; always have been, probably always will be. (Yes, even with baby!)

I think the reason online shopping is so fun is because it is as though you receive the item twice; once when you click the oh so sweet order button, and again when you actually receive the physical item in person. (Does this make sense to anyone or am I crazy on this one?)

My mom's side of the family has poker tournaments for our annual family reunions. We have been doing them for over 30 years. It is one of the reasons I know so many relatives on my mom's side and that is truly priceless.

I have been to Jim Morrison's grave in Paris.

I have an unhealthy obsession with diet coke (and diet cherry coke) and sour patch blue raspberries.

If you make me mad, you will know it.

I'm head over heels for anything and everything Stella & Dot.

In February I gave birth to our miracle girl. I'm not shy about her story. If she smiles at you in the grocery store, I might tell you her entire life story; whether you want to hear it or not. I want the world to know about her. She's breathing proof that anything is possible.

18 December 2010

Jumbled Thoughts (December 17th Edition)

A funeral (my great-uncle). Feeling dizzy. Family photos. Deadlines. Ordering Christmas cards. Pier 1 for a fun little event. Chipotle. Christmas shopping for Sook. A play date. Kneaders.

That is a list of my week in events.

In emotions? Well, it might go like this...

Grateful. Sad. Heartbroken for others heartache experienced this year. Thankful. Full. Bliss. Basking in Sookie and all of her wonderfulness. Everything in between.

I've found myself getting lost in stories of other's trials this week. The losses. The unbelievable pain. Sweet Scarlette who was born at 26 weeks.

How do I still worry about laundry? And leftover cheerios on Sookie's sweet cheeks?

I keep going back to this week a year ago. The start of non-stress tests, the night in labor and delivery, thinking she was coming at 32 weeks. Which, even then, a milestone I didn't think we would make it to see! I snapped this photo of my contractions and her heart rate because my dad pointed out that it kind of looked like she was trying to spell out "Mama". Which of course I went along with. After crying for a few minutes.

I've been practicing the art of gratitude this year more than ever. And yet I still fall and get twisted into the shallow aspects. It always takes something exceedingly tragic to pull me back out of the darkness. To remind me that the fact Sookie is here, that her heart is beating and that she is healthy is bigger than anything else. But I don't want to have to be reminded. I want to be so zen with the world that I don't care if my house is a mess, or if my Christmas decorations aren't perfect, or if I've put on makeup for the day.

It is a silly goal but it is all about the balance.

And how cute does she look while teasing Jack and wearing my Metropolitan Mix Chain Necklace?
If you still need some gifts you can get 20% off at my Stella & Dot shop and receive your order in time for Christmas if you order by December 22nd. Just pay regular shipping and you will receive a free upgrade to priority shipping. Use coupon code SHARE10 for the 20% off. How fabulous is that?

I'm thrilled for this weekend; seeing lots of family and finally seeing Deathly Hallows. What are you up to?

15 December 2010

Wordless Wednesday (with my tired words)

I'm exhausted. My head, my heart, my body. All beyond drained. Do you ever feel like every day is a marathon and you never win?

Thank goodness for Sookie's smiles these days.

On a much more uplifting note...

It is a blurry iPhone 3 photo, but it makes me cry.

Yesterday, my dad dressed up as Santa for Sookie.

A year ago today we started twice weekly non-stress tests. I was so anxious every second. That seems like it was just yesterday. And now she is no longer kicking my ribs from the inside, but sitting on Poppa's lap, looking at him like he is just so silly for dressing up looking like Santa.


13 December 2010

Sweet Shot Tuesday

By no means am I a photographer in any way, shape, or form. Oh, I daydream of being one, but it will never happen. I don't think I have the patience and I've never taken a class. But, I thought it would be fun to link up to Sweet Shot Tuesdays.

Sweet Shot Day

If I'm having a rough morning health wise (mornings have always been the hardest time of day, even when not pregnant! Ha.) we will spend some time in Sookie's room for a bit while I rummage around my worn out body for some energy. I love to play around with the natural light and get shots of her with Jack. Because oh how they adore teasing each other.

I took this the day we put up her fairy Christmas tree in her bedroom. She was fascinated with the green butterfly ornament. Such a precious memory to capture!

26 years ago (Welcome To Holland)

I really appreciate the sweet comments to my last post! I feel bad for writing two such emotional posts back to back because I try to keep things in a balance of serious and happy around here (and well, in my life) but today is a special anniversary.

It has been 26 years since my parents received news that would alter their lives forever. Note, I didn't say ruin. I emphasis the alter part of the previous sentence.

December 13th, 1984 was the first time they heard the word Cystinosis. It was the day I was officially diagnosed. I was blessed with a gifted pediatrician who knew something was wrong with me and promptly sent us to the nephrologists at the University of Utah hospital. I have heard so many horror stories about years of misdiagnosis nightmares; I owe the man my life. Which is why he is now Sookie's pediatrician as well.

 {Isn't my mother gorgeous? I think I look like ET or perhaps a much less adorable version of Sookie. ;)}

My Cystinosis family is such a vital part of my support system. There were some of my biggest cheerleaders throughout the pregnancy. I have met the most inspiring, brave, poignant, stubborn, and hilarious souls in my journey; most of them all younger than me. And the strength of everyone just leaves me amazed and baffled how hard people can fight.

Over the years I have come to the realization that a chronic or terminal illness is often times harder on the family and friends of the person living with the affliction that it is on the actual person.

There is a beautiful, heartbreaking, and stunningly accurate poem I have loved for some time now that captures sentiments of those living with medical issues and parents of differently abled children as well. It is called "Welcome to Holland".

“Welcome to Holland” by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.

“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

10 December 2010

Love & Other Drugs

A few weeks ago I went to see Love & Other Drugs. The fact I saw this before The Deathly Hallows might as well be a sin. But that is another post entirely, that would probably take me hours to write, about how seeing the Harry Potter series just isn't the same since my sister has been gone.

(This post does contain some spoilers. Just wanted to share that warning so you aren't disappointed if you haven't seen it yet. And if you haven't, you should go see it now.)

I went into the movie thinking I would see the storyline portrayed in the trailers; player Jake meets his match in co-star Anne. Apparently this was a huge mistake. I'm not quite sure what their angle was on that, because I ended up sobbing for most of the movie and loving it anyway. Except that it would be nice had the newly committed and brand new mommy with the chronic illness been warned of the subject matter of said plot. You know, just to avoid the swirling dance of tears and epiphanies during a movie in which I thought my range of emotion would consist of nothing more than making sure I wasn't obviously drooling over Jake Gyllenhaal's everything and coveting Anne Hathaway's curls.

I admit I'm a sucker for sick girl doesn't want to commit, is afraid to love fully, type of movies. Sweet November made me crazy emotional but I loved it despite Keanu Reeves' horrible terrible no good very bad acting. Steel Magnolias, I can't watch very much because I might possibly drown in my own tears and never get out of bed again if I indulge in it too much. (Woman dies of kidney failure shortly after having a child doctor's warned her never to have? Yeah, enough said. ;)

There were gems of funny throughout the movie too. Sometimes it felt as thought it was switching back and forth too abruptly, but the comic relief was much appreciated once I realized where they were going with it all and that darting out of the theater and sneaking into Harry Potter might not be the best way to cope with my reluctance to sit through a movie that hit entirely too close to home.

The thing is, (well, of the many things) I know there are more devastating diseases out there than Cystinosis. I know I've been given the keys to experience many bursts of life that so many others do not. I took my first steps, I went to my first day of kindergarten, I learned to drive, I graduated college, I've been to Paris and Amsterdam, I've loved, I do love, I not only became pregnant, I experienced birth and was blessed with meeting my daughter. However along the path of all of that has been many near death instances, eye drops every hour so I don't go blind, medication every 6 hours that wreaks havoc on my digestive system, a kidney transplant at 11; while my peers were spending their time worrying about the adjustment to junior high school, I was wondering if I would die during surgery, or worse, wake up. But it is my life and one of the reasons it is so frustrating (as so eloquently pointed out by a mother of a child with Cystinosis, who is like a second mother to me); we get glimpses of normal and then just like that we are puking for days, fighting fatigue, wondering where that normal walked away to be and if and when it will return again and grace us with it's presence.

You splatter and sprinkle love into any kind of illness and of course it gets tricky. None of us would choose to watch the one we are tangled up in suffer, lose basic skills required for day to day living, or be bed ridden in pain. But it is difficult for both parties; one feels helpless, the other feels lost. And of course you never know when someone is going to leave this earth, it could be in a car accident tomorrow. When you have a life threatening illness hanging over your head it is a bizarre knowledge to have that it will most likely be the reason your chapter ends.

There have been four young adults who have passed on this year from Cystinosis, as far as I know. I am an active part of the community and because we are so small, everyone knows everyone; we hear the news...good and horrible. All four of these people were younger than I am. Is that thought terrifying? Of course it is. (For example, lately I'm choosing to ignore the fact I need to figure out what to do about my gallbladder and stop having nightmares about dying during surgery or developing colon cancer after being left with no gallbladder. Because only eating once a day leaves me completely and utterly drained of every last ounce of precious energy.) I worry about not being around for Sookie's first day of school, or teaching her to ride a bike. I think about her having her own children one day and wonder what she will remember of me. All I can do is try to instill the magic of life, sweet lessons, little victories, and cherished moments into her innocent eyes. Teach her to always and forever live with a full and open heart. Give her the confidence to wear herself on her sleeve and to never apologize for who she truly is. Show her that this world is a place full of whimsy, hope, light and love.* Although sometimes I get overwhelmed and panicky; it feels like a race against time.

*(Well and of course the occasional lesson on Manolo Blahnik.)

The unknown of your own mortality and well being holds power, the future can be foggy and threatening; so you really have no choice but to put everything you have into the passion of the now. Cement your heart in the moments of today.

08 December 2010

What We Wore Wednesday

Let's face it, Sookie's wardrobe is more fun than mine.

Black long sleeve onesie - Target
White short sleeve "I love my mommy" onesie - Target
Pink ruffle bum pants - Target
(Yes, we love Target around here. Can you tell? ;)

Shirt - Carter's
Pants - Target
Hat - Festival of Trees
Flower clip - I can't remember exactly but a mall kiosk somewhere

Sookie's outfit - Target (See? I have a problem.)
My white tee - Nordstrom Rack
Lace cardigan - Taget (Clearance for $4.98 Woo!)
Metropolitan Mixed Chain Necklace - Stella & Dot

She was giving me makeup lessons the other day. Oh she makes me laugh!

Sookie's outfit - Target
Sookie's Hat - Carter's

My shirt - Kohl's
Grey ruffle cardigan - The now out of business Layers (miss them! Does anyone know what happened? I know their store burned down but they kept saying they were going to re-open, but they never did.)
Metropolitan Mixed Chain Necklace - Stella & Dot

This post made me realize two things. I dress Sookie in a lot of pink. I have an unhealthy obsession with my Metro Mixed Chain.

Hope you are having a fabulous Wednesday!