July 31, 2010

Our first carrot

Today Levi dug up one of the carrots from our back yard.  He washed it in the sprinkler (we re-washed it) and we ate it!

July 27, 2010

My Heroes

Two nights before my sister Rebecca's wedding she was feeling sick.  Our friend Daniela had flown up to be in the wedding and was staying with Rebecca at her house.  Rebecca was so sick and weak she asked Daniela to come in the bathroom with her while she showered just in case she fainted.  She took care of her, got her her medicines and they fell asleep holding hands.

I heard this and thought it was so sweet.  I thought back to Eva's blog before she died and remembered that she too had a circle or friends who were there for her, comforting her when she was sick.  These people are amazing.  The caregivers, the real friends.

Anyone can find friends, the type to have fun with.  But who can find friends who are there through thick and thin, rolling up their sleeves and hopping in the trenches with them during their sickest hours.

I am so thankful for the people in my life who have had the guts to stick around.  To not get scared off.  To those of you who have been there for me thank you.  Thank you from the bottom of my heart.  

You are my heroes.

The Lunds:  I haven't seen or heard of these folks for years, but they were very encouraging to us.
To my sisters-in-law:  They write me the sweetest notes and cards - totally brighten my days.  Thank you.
To my in-laws:  I have awesome in-laws who are so supportive.  Thank you.
To Tyanna:  Who listens to me talk about blood and guts stories even over dinner.  And gets mad at me if I don't keep her in the loop.  Thank you.
To Tosh:  Who kept coming to visit me almost every time I was in the hospital.  Even though I had been super crabby to him in the past.  Thank you.
To Christina Bass:  Who has helped me so much, in so many different ways.  Watching Levi, cooking.  Thank you.
My mom and dad:  I can't even begin to start to think of how much they have sacrificed over my whole entire life.  Thank you
Seth:  Seth never bailed on me.  He has been my knight in shining armor and my strength.  From getting me food, to cleaning up my hospital room, to knowing how to calm me down, really the list is endless.  Thank you.
To friends who have helped financially, thank you.  For those of you who have prayed for me.  Thank you.

There are people who are willing to get down and dirty.  Who remain friends when all is not sunshine and roses.  People who believe me.  People who don't think I am just making excuses or being lazy.  People who take Cystic Fibrosis seriously, yet don't treat me as a frail person.  People who have pounded my chest to loosen up the mucus.  People who have taken the time to research CF.  People who knew my treatments well and goofed off and had fun with them.  And again, people who have had the guts to stick it out with me.  Those people are my heroes.  Caregivers are my heroes.  I watch people care for other people selflessly, and it is so beautiful.

Seth Boren you are my hero.
Mother you are my hero.
Father you are my hero.
Kyle Craw you are my hero.
Daniela Dawson you are my hero.
Brittani Weybright you are my hero.
Rene Hight you are my hero.
Casey Joens you are my hero.
Brad Beyenhof you are my hero.
Nate Lawrenson you are my hero.
Julie Howell you are my hero.
Nana you are my hero.
Pop you are my hero.
Grandma you are my hero.
Grandpa you are my hero.
Mendy Riggan you are my hero.

And there are more.  Real live heroes.

July 26, 2010

A year ago . . .

"a year ago this week we all caught the swine flu ...Levi and I eventually got over it but Leah never really did - until she got new lungs..."

That was Seth's Facebook status last night.   It got me thinking.  Yep, it was around a year ago when my health started spiraling down to an unmanageable, scary level.  Until then I had lived a relatively normal life.  Yes, I had treatments to do.  Yes, I would have to be admitted to the hospital for "tune-ups".  Okay, so maybe my life wasn't completely normal.  It was normal to me though, and although I was hindered from certain things I had enough freedom and independence to get by.

That is until late last summer...

At the end of July we all got sick.  Very, very sick.  It was the sickest I have ever felt, and I pray to God I never feel like that again.  I was so weak.  Fevers daily.  Never ending, relentless fevers immune to any medication.  Nothing brought them down.  My lungs were bleeding for days on end.  They were gurgling and I tried to avoid the inevitable coughing so I wouldn't exasperate the situation and make it worse.  I could only lay on the couch.  I couldn't stand through a whole shower.  I ended up in the hospital.  Extremely anemic, I could barely make it to the bathroom.  To walk across the room felt like I had just ran a marathon.  Living was exhausting, but I didn't have a choice in the matter.  It felt like I had to do extreme exercise just to survive.  When I was an inpatient a doctor told me he thought it was time for me to get evaluated for transplant.  I was shocked.  As sick as I was,  I wasn't mentally ready to face the fact that I needed a transplant. Around this time I was placed on oxygen.  I had been on oxygen here and there before, but never NEEDED it.  As in, can't-breathe-without-it needing it.  One night my oxygen got pulled out of the wall and I woke up with a panic and suffocating feeling.  I pressed the nurses button.  They didn't come.  They never come.  That was the closest I have been to a panic attack.  Maybe it was a panic attack.  I don't know.  All I remember is that I couldn't breathe, and even later in the day when I could breathe finally I was still shaky from the intense fear I had experienced earlier that morning.

When I transitioned back home I was so, so, so sick.  The hospital didn't help make me well at all.  Just transitioning from hospital to home used up every ounce of energy I had within me and more.  I felt like I was going to die.  I got oxygen set up at home and I laid in bed for days.  I was losing weight at a scary pace, and no matter what I did I could not gain.  Eating was a chore and something I had to force myself to do to stay alive.  The number on the scale kept falling.  I was down to eighty pounds, and did not like what I saw in the mirror.  I looked like death.  People around me were not handling the situation very well.  Sometimes I felt confused why I was the one who was sick, but was handling it better than everyone else.  That may or may not be true, but that is how it felt.

I knew I didn't even have a year left to live, and that it was down to months.  I could feel it.  I wasn't sure that I would make it to Christmas.  It was such a dark time, but yet the comfort of God was so real to me.  I had true peace about "real life"  in eternity.  I didn't want to leave my family behind, and I was scared of the pain, but what happened after I died I was confident in.

This was all a year ago.  And so the wait for new lungs began.  The unknown was terrifying.  The pain was unbearable.  My normally clear head was a mess.  I felt lazy and depressed although I wasn't.  The Lord God revealed himself to me in the most amazing ways.  I learned lessons and things about myself, people and God that I wouldn't have otherwise.  I learned that God is in control and we have no control. I learned that God's goodness has nothing to do with our individual circumstances at the time.  I learned that God gives and takes away, but blessed be the name of the Lord.  I learned that I am very against positive thinking and thinking we can "will things to happen" by our own thoughts.  I have a strong disdain for the word of faith movement.  I learned that if God is for me, who can be against me and that I don't need to fear man or satan.  I learned that being a Christian to have an easier life is not the way to go, and that is not what Christianity is about.

I was blessed to watch this video a few days ago.  Everything this pastor says is a word-for-word into the inside of my brain and heart when I was suffering a year ago.  This is how I felt exactly, and God revealed though His word and spirit these same truths to me.  I am not nearly as articulate as he is in communicating God's peace through suffering.  Take the time to watch it, seriously.

*** Also, please keep this family in your prayers.  James 5:16 ***
You can keep up with what is going on with Daisy Love here at http://prayfordaisy.com/

July 25, 2010

Rebecca and Kyle's Wedding

Two weeks ago was such a great day!  The day my little sister became Mrs. Craw.  Their wedding was cute and super fun.  It was country themed and all of the guests were told to wear "country casual" attire.  People went all out dressing up from cowboy hats, to tight jeans to big belt buckles. 
It was at a mini western town called Long Branch Farms in Half Moon Bay.  We had the whole town to ourselves for the day, including the saloon where The Quick and the Dead was filmed.  

The church building was adorable.  My favorite part was that the whole front wall could open up on hinges.  It reminded me of a doll house.

I was so happy to be the maid of honor and have a front row seat to watching them exchange their vows.  I know my sister had been waiting for this day for a long time, and it was a blessing to watch it unfold before my eyes.  Their personalities are perfect for one another and compliment each other nicely.  I pray that their marriage will be totally blessed by God for years and years to come.

Rebecca was beautiful, as always.

Here is some of us girls getting ourselves ready before the wedding.  The very cool thing about the bridesmaids that Rebecca chose is that I happen to be good friends with them too.  We had so much fun together, and they are some of my favorite people.  I totally love them which made for a very fun weekend.

Here is a photo of the whole wedding party.  Levi was the ring bearer.  He got to wear his bright red cowboy boots.  He did a good job walking down the aisle and standing up front.  Throughout the ceremony he kept winking at the flower girl, his friend Mia.  She kept getting shy.  So. CUTE.

At the reception there was lots to do, including archery . . .

And dressing up in pioneer clothes . . .

and dancing.

We had to do the electric slide . . . at least once.

Rebecca decided that it would be a good idea to shove the wedding cake in her brand new groom's face.

But don't worry.  He got her back.

Congratulations Rebecca and Kyle!  I love you guys!

Two are better than one, Because they have a good reward for their labor.  
For if they fall, one will lift up his companion.  But woe to him who is alone when he falls, For he has no one to help him up.
Again, if two lie down together, they will keep warm; But how can one be warm alone?  
Though one may be overpowered by another, two can withstand him. And a threefold cord is not quickly broken.
Ecclesiastes 4:9-12

*** All of these wedding photos were taken by our friends at Aptos Photography ***

July 17, 2010

Just Shoes

Check out these cute shoes I scored at Crossroads.  They are Steve Madden.  I got to go shopping with my mom today which was nice.  We haven't done that much (as me being an adult anyway).

But as excited as I am to find deals and such . . . . shoes are not what I feel like blogging about.  Nope, it's not.  What I really want to write about is my sister's wedding.  Her wedding was so wonderful, so fun and such a special day.  Or I could write about her masquerade bachelorette party, or how much fun I had swimming with her and her bridesmaids after rehearsal, or visiting San Francisco with relatives Monday, or hanging out with friends on the beach this week and jumping off of the jetty.

You get the point.

But it is late.  Five minutes after midnight actually.  This is the first chance during this amazing whirlwind of a week that I have had to sit down for a decent stretch of time.

So for now I'll just blog about shoes.

Hopefully, someday soon I'll be able to sit and reflect on all the phenomenal and pure carefree fun I have been blessed to have.  Now is bedtime though!  Nighty - night!

July 07, 2010


I have been on tons of prescription drugs spanning my lifetime.  And by tons I mean A LOT.  Possibly and probably hundreds.  This includes many hard core, intense and even addicting drugs.

Morphine, Xanax, Dilaudid, Benadryl, Vicodin, Percocet, Phenergan, Ativan.  And more.  You name it and I have probably been on it one time or another.  Well not really, but you get the idea.  I have obviously not taken all of these at once, but as I needed them.  And boy did I need them living through CF and not just CF, but "end stage CF" as they call it.

Some of these drugs I really, really like - to be quite perfectly honest.  Dilaudid is definitely my drug of choice;  the rush and all that it gives while taking away pain, and making it seem as though everything is right in the world.  I am always a little hesitant when I have to taper down off of this drug . . . . something inside doesn't want to!  Which leads me to my next thought.  Thank God my body doesn't seem to get too chemically dependent.  No really.  I thank God for that.  I know of some people with CF who have a very hard time coming off of some of these drugs.  Thankfully I don't.  I have a pretty addictive personality in general, but have never gotten addicted to medication.  Like I said, I'm a little hesitant and sad to stop taking it, but my actual body handles it okay.  I can drink espresso everyday for weeks and then stop cold turkey also.  No caffeine headaches!  It's great.

Anyway,  back when I was extremely sick and frail I was emaciated and paper thin.  Eighty pounds.  I was unable to eat much as hard as I tried.  My doctor prescribed me marinol.  Marinol, in case you didn't know, is the prescription pill form of Marijuana.

Marijuana gives people the munchies.  The munchies is exactly what I needed.  I remember very clearly as my doctor was writing up the script telling me that it might make me high.  Yes it did.  I got high every time.  There were times when I was just sitting alone, cracking up hysterically for no reason.  Everything was funny.  Time was messed up, and so was my head.  I ate though . . . mac n' cheese, slim jims, the junkiest of foods . . . but I ate.
At the time I didn't tell a lot of people I was taking Marijuana.  Only really close friends knew.  I wasn't ashamed at all, but I know that a lot of people might not understand.  I didn't want to "stumble the weaker brother" so to speak.  Being a pastor's kid, I didn't want people whispering about their pastor's daughter being on drugs, that sort of thing.  Even if it was prescribed . . .

Now that I am six months past my double lung transplant, healthy and doing great I have more confidence in talking publicly about drugs I have been on.  I eat fine on my own now, thank you very much, and have not taken a single pill of marinol since.
So I am not gonna hop on a little soapbox and say "legalize marijuana" or any such nonsense.  I just feel like I had such a unique experience by being a Christian, praying about it, God guiding me and blessing me by giving me a drug to help me eat.  (How new-age-ish do I sound right now? Haha.)

Recently I was sitting with a couple of friends and we were talking about our pasts. They were bringing up some things they had done before they received Jesus in their lives.  My friend Myrna asked me "Leah did you ever try marijuana before?"  I just chuckled and was like, "Yeah . . . about six months ago . . . ."

July 06, 2010


I finished up my course of steroids.  Three days.  Outpatient.  No problem.  I'm not saying I particularly enjoyed it (because I didn't)  . . . driving up there three days in a row. . . . but, oh, doing things as an outpatient is so much nicer than being admitted.  Yep.

I didn't sleep, but that's okay.  I am sleeping again quite perfectly soundly now that it's over.  Whenever I am fully sleep deprived I am tempted to write blogs on here.  There's not much else to do in the wee hours of the AM when you are super tired, but yet somehow still wired.  I resisted the temptation this last course.  I'll spare you, ha.

So I'll hear the results about if I still have rejection after another bronch.  That should take place in the next few weeks.  Not on my mind right now though . . . I have been busy living, living, living - having fun and relaxing.  Spending time with wonderful friends and spending time just staying home.  Seth is usually more of a homebody and I am usually more antsy to GO.  This long weekend we were for the most part just staying home or doing small errands around town, but I enjoyed it.  Plus living in Santa Cruz on Independence Day is an experience of it's own.  No need to wander very far.  We rode bikes to get down to the beach, because as usual the roads were shut down and traffic was being redirected.  It's always a little intense, but there's nothing like it.  This year was actually the most tame I can remember. They are cracking down more I suppose.  Maybe we'll have to go down to Aptos next year.  I saw no fire dancers or hillsides catch on fire.  We did end up in some kind of outdoor rave/dance party where everyone was adorned in glow sticks and totally intoxicated.  Try pushing your bike through a crowd like that.

My sister is getting married this week!  AAAAHHHHH!  I can't believe it, time has flown.  I am so happy for her and am already antsy for her to start having babies, ha.  This week we have rehearsal, a bachelorette party, manicure,  wedding.  Y'know, the usual.  Except it's not usual because it's my one and only sister getting married - a once in a lifetime thing, so I'm pretty elated.

I hope it's okay with her, but here are a few pictures I took of my good friend's son.  He is adorable (so is his older brother) and I have been waiting to get some good shots of him ever since they brought him home from South Korea.

So cute, right?