our 4th of july weekend

tonight there was an epic summer thunderstorm; the three of us (well four including jack, and he is so very much a part of our little family) stood in the doorway watching the skies light up with flashes. after awhile i raced out onto the front lawn to do some insane dancing in the rain with my girl. her smile was free, her teeth gleaming with raindrops, her laughter ran wild through the air, without a care in the world. it was one of those moments i tucked away in my heart for another day when the weight of the world might seem like too much, because in that instant, everything was right.

love Sookie's hair blowing in the wind

there has been so much joy lately, i have to admit i'm kind of waiting for something awful to happen. it is an ugly downfall of the quirky happenings that go on in my brain. 

this is what our june looked like; with a few more things i failed to remember to write down. there were many activities and adventures, but best of all? there was so much LIFE thrown into everything, purpose behind every place we had to be and every event we attended.

i live for nights when we go on little family outings; not really a set goal or trajectory in mind, but being together, enjoying each other because that is all it takes sometimes to remind us of this special thing we have going on here in this little house.

our girl is blossoming right before our eyes...

...it is a sight to behold.



a tweet from saturday night:
Little miss S is asleep, I am being serenaded with a guitar, a fire, & fireworks in the backyard. #livingmyfairytale

 a sweet night with {my} sweet. those nights are few and far between as parents, but they are so powerful, they make up in quality what they lack in quantity.


my favorite things about this weekend:


sookie's festive red dress that her aunt iris gave her for her birthday.

playing in the fountain at our favorite outdoor mall.

my (very) creative cousin's pink poodle, chloe.

this salad, recipe and photo courtesy of our best bites.
the dressing? so delicious. i'm obsessed.  
(definitely worth squeezing out 1/2 cup of fresh lemon juice.)

{photo credit}

also loving?

coconut popsicles

& seeing sookie play with the "big" girls; 

her cousins and friends. 

{why yes, that is my pretty gussy bag in the background there. 

adorable & functional. it doesn't get better than that! }

it is cake time momma.

beyond thrilled to borrow someone's pretty necklace!

we hope your weekend was lovely.

kisses abound!

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.

Family

Family means many different things to many different people. It all depends on who you ask. I know some of my 3rd and 4th cousins very well, some I have never even met. It can be a strange fact of life for me to wrap my head around, but I think if you need certain people in your life, the world has a way of making them a part of it through whatever avenue it takes.

This past week or so we have had a death and 3 new young ones diagnosed in our little Cystinosis community. Of course the new families diagnosed are only ones that I am aware of, I'm sadly sure there are more, but it breaks my heart each time nonetheless. With all of this going on I have really been aching for the company of these special people; whether it be because of a conference (which I have to wait until July 2011 for), or just a trip to hang out and be our goofy selves.

Indeed there are many ugly facts that come with living with any sort of medical illness or diagnosis; you want to know life expectancy, you want to know what kind of life your child is going to have, you want to know the quality of life your precious one might have, you want to know medications, treatment options, risks, side effects, and so on and so forth. And then something breathtakingly special happens; you meet people going through this journey with you, they might be at different stages, but they understand in ways others truly can't, people who are strangers and yet an hour after meeting them you feel you have known them forever and a day. I've been blessed with this experience many times over my 26 years of this disease and it truly is something magical. I do not know what I would do without my extended family who make up my Cystinosis family. They are there for the little moments, the big victories; like a surprise and previously thought impossible pregnancy and everything in between. They understand dual alarm clocks so you can wake your child up in the middle of the night to give them medicine, they understand medicine that smells and tastes like rotten eggs, they understand doctors who do not know what they are talking about, they understand the frustration and pure hell of misdiagnoses, they understand insurance battles, they understand the battle of a perfect diaper system so you don't have to wake up twenty times during the night to change your child's bed sheets. They understand the daily struggle, the hourly struggle, the heartbreak that your life is nothing like you thought it was going to be. And even though you will reach that state of acceptance, you can mourn the loss of normal for the rest of your life. They understand that, and it is okay. Along the way, they will make you laugh through your tears.

And most importantly, they understand and appreciate a really hilarious vomit story.