Tuesday, April 24, 2012

Conversations with Zoie

I'd like to inform the blogosphere, Evan was awarded the tuition waiver for the next school year. Yup, you read that right. We got a full tuition waiver from the math department, pretty sweet, right?

In order to celebrate, we went out to Red Robin. On our way, we grabbed Zoie (Evan's sister). If you ask Kyle who his best friend is, it is always Zoie with a few others showing up in rotation. Recently, when Kyle asked Zoie if he could have multiple best friends---Zoie made it clear that it is only her.

Well tonight driving. Zoie was telling us about some of her teenage drama and texting her best friends. Kyle stopped the conversation and asked Zoie, "WHO is your friend?"

Zoie: "KYLE!"
Kyle: "You don't call me at night."
Z: "I could if you wanted me to."
K: "I don't have a phone for you to call me on."

At this point, Evan, Zoie, and I are laughing. Then Kyle says, "I don't want to be your best friend just your friend." Zoie is able to convince him that they should be best friends. But honestly, this whole conversation is so hilarious and the seriousness and intent he had.

Later after a meltdown getting ice cream, Evan told him that we wouldn't be able to go back if he was going to act like that when we went. What was Kyle's reaction?? "Daddy, don't say that." Priceless.

Thursday, April 19, 2012

Great Strides

Today is a special day. Today is Teresa's birthday. She had a fabulous day down in Nicaragua, where she has been living with her family for four months. She motorcycled around some volcanoes with her husband and enjoyed some private beach time. Sounds fabulous, right? Well, I want to wish her a happy birthday from here in Utah and hope that she'll come visit soon. If you would have told me back in the summer of 2004, when I knew of her in the apartment complex, but not her, that we would be friends, I would have laughed. She was pretty and popular and I wasn't. But I am so glad I know her. She has taught me a lot and been an inspiration.

In honor of Teresa, I am writing a special blog post. Now, I want to be clear that Teresa is many things. She is smart, crafty, a good photographer. But most importantly, Teresa is the sweetest, kindest, caring person---so giving. Plus look at that picture, gorgeous right? Jenny, Teresa's sister, and I frequently talk about how amazing she is. However, as multi-faceted as she is, Teresa does have CF (cystic fibrosis).

I wrote a post once before (see here) about Teresa and her sister, Jenny, who both have CF and what wonderful, fabulous, hardcore women they are. CF is a difficult disease. It requires people to spend hours a day doing treatments with vibrating vests and nebulizers. Daily they take handful after handful of pills---enzymes for digestion every time they eat, sometimes antibiotics or steroids, supplements....the list goes on.

Often the disease not only affects their lungs, but digestion, pancrease, and fertility. CFers are at high risk for diabetes as their pancrease is affected. It is not uncommon for CFers to received double lung transplants as their lung functioning drops to as low as below 20%. They are admitted for two weeks stays in the hospital when they become too sick (this can happen frequently throughout the year). These stays can be brought on by a simple cold bacteria becoming stuck in the sticky mucus in their lungs. This bacteria that might not even bother you and I, can turn into pneumonia for a CFer. A high calorie diet is a must for CF, as the body struggles to absorb nutrients through the mucus clogging their digestive track.

During hospital visits they are pumped full of concoctions of antibiotics around the clock and require PICC lines (think extreme IV's that start in their upper arm and end close to their heart). If over times they cannot access veins, they will receive a permanent port to administer drugs. Needless to say, this is a hard core disease. And for some, no matter how compliant they are with treatment, it cannot be controlled.

In 1959, the life expectancy for CF was 6 months. Now it is 37. CF has come such a longs way. A few months ago, a drug called Kalydeco was released, ahead of schedule no less, to treat at a cellular level CF. The only downside is it does not treat the most common genetic mutation causing CF. Kalydeco only treats the mutation affecting 4% of the CF community. But this of course, is a huge success and signals that other drugs to treat not just the side effects, but the cellular mutation might be close on the horizon for the majority of CFers.

However, cystic fibrosis research does not receive any government grants. The majority of the research funds are provided by the Cystic Fibrosis Foundation. This foundation holds walks across the country to raise money for research.

Jenny asked me to be apart of her team and walk with her at the Provo Great Strides Walk on June 2nd. I have gladly agreed to walk. I wish to raise money for Jenny and Teresa and all those affected by CF whether they have the disease, are a mother, sister, father, brother, or friend of a CFer. The money raised will make a different to this tight knit community.

Please donate toward this cause. Donate as a birthday gift to Teresa. Donate as an early birthday gift to me (two weeks after the walk). Donate because both of these women have husbands and children who are also affected by this disease. Donate because my boys have been tested for CF---it could have been us. Unfortunately it will be someone's child.

I know what it is like to have a sick child. To have your day to day life altered by the disease. To worry. To fret. To think at night over the dishes about what kind of life they will have as an adult. What kind of opportunities and things we take for granted will be unattainable. I know what it is like to wish for a "normal" life. I bet these CF mothers feel the same. I know that I worry and fret over Jenny and Teresa--and I am not even their mother. Donate. Please.

I know that it is always difficult financially, but please skip a meal out, skip a new sweater, skip the movie you were going to see. Anything you can spare is worth it to them. It helps. Kalydeco is proof that donations to Great Strides are worth it. I have a button on side bar that will allow you to donate to Jenny's team. It is just a click away.

If you would like to know more about being a CF mother and the affect this disease can have, please read Teresa's guest post on Jenny's blog here. There is also a great post on Life, Love and 65 Roses about how CF has affected the way she feels about her newest newborn because of her experiences with her girl who has CF. Here.

Wednesday, April 18, 2012

Sunday, April 15, 2012

Utah



Evan has finals in a few weeks....and after that we are really entering our year of lasts in Utah---last summer semester, last fall semester, last spring semester, last Halloween, Thanksgiving, Christmas, Easter.....

And as we enter our year of lasts, I'll reach 10 years of living in Utah.

As the weather has been nice, I've been enjoying driving around. Cresting the belt route and looking west, taking in the beauty of the Great Salt Lake, or today driving the corridor over the Point of the Mountain deep into the heart of Utah County. I love Utah, particularly the spring time where the weather changes and you feel the beauty of this land and know the summer is holding something special for you.

Yes, I was born and raised in Portland, Oregon and the surrounding area (Beaverton, Aloha, Tiger, Clackamas, Hillsboro, Lincoln City, Gresham, Tigard, Oregon City, Milwaukie, Sheridan, and Forest Grove). However, there is nothing there for me anymore. Less than a handful of people, every corner, turn and bend holds horrific memories. I never loved it there. I never wanted to go back. I just wanted to leave.

But Utah has my heart. It isn't at all what I expected arriving on a plane with two checked bags and three boxes shipped from Portland.

Here is where I learned about the Gospel of Jesus Christ. Here is where I stretched myself, faced demons and came through. Here is where I learned Heavenly Father loves me.

Here is where I met my husband, got married, and became a mother. Here is where I received the full blessings of the temple.

Here is where I made a best friend who helped me heal, birth my Aiden in the safety of my own home, and then lose her unexpectedly. Here I grieved.

Here is where I became an adult. I took on a household, learned about budgets, paid bills, and realized there is no safety net. I fought hard to provide for my family. And although there will never be any cloth diapers, I learned to make my own laundry soap and cleaners. I coupon. I shop at thrift stores. Here I learned I love to can, dehydrate, do it from scratch, and garden.

Here I learned to be a good neighbor and had the best neighbors imaginable.

This land has shown me so many wonderful and beautiful things that it has to offer. Like small oil towns or quaint country towns centered around a miracle pageant, that I adore particularly because they cradle the women and babies that I love there. Gorgeous landscapes, high mountains, lakes, and rivers designed to be floated in the heat of July because they are freezing year round. Nature is so close to this city. You drive the freeway and see fields and cows. Here I long to hike and camp and swim. I live in the shadow of the mountains, quite literally.

I came and created my own family of friends, that even when we don't always talk frequently it is like no time has past. People who rally around me. People who cry with me and smile. People who bring amazing things into my life. And with Evan, he had created the same sort of family of friends, so my husband expanded my family with his friends who have embraced me.

Utah changed me. It showed me that nothing is as simple as it seems. Every person is trying their best. That forgiveness is necessary. Here I saw human nature at its best and worst. Here I saw grey in a black and white picture.

Here I failed and tried again. I built a safe place for my boys. I built a team of specialists. Here I fought to protect them and care for them. Here I learned every nook and cranny of the "hob-bspital with the orange toy room."

Here I learned to love, to trust, to let go. I learned faith and prayer. And unexpectedly Utah taught me that I am worth loving in return too.

Saturday, April 14, 2012

Moving Forward and Writing



I've been reading some amazing blog posts by great women recently. Things that make me think about who I want to be as a woman, who I want to be as a mother, and thoughts on our life stories. I have a lot of things that I want to say because of what I've been reading; however, I have only on sporadic occasions written my thoughts on this blog. It has mostly been to chronicle our lives and share pictures, but I feel that my thoughts and feelings are vital and important some day for my boys (and hopefully a girl eventually) to read. I've been burned by what I've written on this blog in the past. It has been the reason that I've stopped writing, or only been writing the sunshine part and pictures. But I need to move past radio silence and write for me, for Evan, for Kyle, and for Aiden.