Happy Halloween!

  Los Altos Fall Festival:

Don't worry, Ryan and I usually don't wear matching shirts but this picture was taken on the "Virtual Out Run CF" day and we wore our shirts proudly. I pumped up my oxygen and walked two miles to out run CF! The shirts say: 2 Feet. 1 Goal. Out Run CF.

Harrison is loving all this quality time with Grandma Coco!

Celebrating Halloween with some new friends:

I was in charge of the snack and I went to "Pinterest" for a little inspiration. I also sent mummy dogs and both snacks were a hit!

 Trunk or Treat:

Warming up with some hot cocoa!

Finn Mcmissile: British Intelligence

 Halloween Night: Trick or Treating in a full-size candy bar neighborhood...score : )

There is a truck that looks just like Mater down the street from us. We go visit him regularly : ) Finn Mcmissile wanted to get a photo with his buddy Sir Mater!

I have to share this funny story. A boy came up to me at trunk or treat and looked at me and asked, "what are YOU?!" I was confused because I wasn't dressed up so I said, "Oh, I'm just a mom!" He gave me this puzzled look and then walked away. Ryan and I realized at the same time that he thought my oxygen tubes were part of a costume and started laughing. I commented that I really should have just swiped a gown from the hospital and gone as a CF patient!

"God Bless You, Honey."

This is what a stranger said to me last week as I awkwardly attempted to maneuver my oxygen on wheels around tables and chairs to exit a restaurant. A week before that, in another restaurant, a girl waited for me outside the restroom as I took Harrison potty to hand me a note. I thought she was waiting for the bathroom but she just handed me this note and quickly walked away. The note said she would be praying for me and that she believed in miracles. It was a very humbling moment. People are SO GOOD.

I looked at the man who had said, "God bless you, honey" to me. He had kind and sincere eyes, and I held them for a moment and then smiled and said, "thank you." The familiar lump of gratitude rose in my throat (that lump of gratitude has been showing up a lot lately!) and stayed there the whole ride home. Because of the "lump," it was hard to talk, so instead I just reflected on a few things.

Can I share?

I remember when Lexi had to start wearing oxygen. It was hard for her and it was scary for all of us. I remember the first day she wore it to school and how she bravely rolled it into her fifth grade classroom and how crushed she was when a boy called her "tube-face." I also recall how strong she got (emotionally) and how she used humor to diffuse her self-consciousness. When she noticed people staring at her she would startle them by quickly looking at them and pulling a face or start coughing violently and comment loudly that she hoped she wasn't still contagious! She was constantly cracking us up. She also would dress up her tank and even gave it a name. Lexi, with wisdom beyond her years, made the best of her tough situation.

I have dreaded crossing the "CF milestone" of supplemental oxygen for years. Lexi only wore oxygen for a few years before she got listed and in my mind, I knew that when it came down to needing supplemental oxygen, the situation was serious. When I could not get my O2 sats to stay up this last hospital visit, I got "the oxygen lecture" from my Dr.. I will never forget him drawing his diagram on the white board in my room and saying matter-of-factly, "It's time Sharlie. You will be doing permanent damage to all of your organs if your sats keep dropping and you don't use supplemental O2." It was hard...and scary. I thought about Lex a lot. I determined to channel her strength and humor and just deal.

The first few days home were kinda tough. Ryan and I ran some errands and I was acutely aware of people doing double-takes and looking at me. I even heard a girl ask her mommy "why does that lady have that thing on her face?" Even though I was embarrassed, I just smiled. I was self-conscious and it was an adjustment that I wasn't sure I would get used to. One of those first nights home, I was putting Harrison to bed and I was performing one of our night-time rituals of telling him something on his face that I love and then kissing it. I would say, "i love your eyes" and then kiss his eyelids, and, "i love your cheeks" and then kiss his cheeks, etc. etc. After I was done kissing all over his face, he looked at me and said, "i love your oxygen" and reached his little head up to mine and kissed the tubing under my nose. It was a blessing, a tender mercy, an epiphany. As my eyes blinked back the moisture that threatened to spill over, I thought to myself that if Harrison loved me and accepted me with my funny oxygen tube face, then I really didn't care what anybody else thought. It was a little gift that allowed me to see myself through my son's eyes of love and love myself a little more in return.

Since then, I have come to appreciate my supplemental O2 on a whole different level. Yes, I still get frustrated sometimes with the feeling that I am on a leash and I still get self-conscious sometimes when I see people staring but, I also realize that this cumbersome little machine is a gift. It is not only helping me stay strong enough to get a transplant, but is also attracting love and light to me through genuine good people like the man in the restaurant. On the car ride home I realized...for the most part, people aren't staring, they are CARING. I know, cheesy, but I don't care. They are looking at me and feeling empathy, they are hoping that I'm okay and maybe even appreciating their healthy lungs a little more. I don't like to be scrutinized but I will take all the healing love and prayers I can get and if the tube on my face elicits more of that, I'm grateful.

I know God IS blessing me and I know he blesses the kind, caring and wonderful type of people who would say, "God bless you, honey" to a hopeful girl pulling an oxygen tank.

Day 5...Walking away from my (health) problems...

I was blessed enough to attend my beautiful cousins wedding last month and although I have no regrets, the trip left me struggling health-wise. She was married in Utah and my mom and I drove and planned to stay for just a few days. I had been feeling strong and felt confident that I would do fine. I brought my portable oxygen concentrator with me in case I needed it.

Well, I was surprised at how breathless I was. I needed to be on my oxygen nearly the whole time. I have spent so much time in Utah over the years but this trip was really hard and it was eye opening. I'm realizing that my body is definitely not as strong as it used to be. My baseline has dropped and even just a few days at a higher altitude affected my lungs more than I expected.

Anyway, my mom and husband were both understandably worried and wanted to get me into the hospital right away. However, I felt like I was just there as I did 5 weeks of I.V.'s in February and March and couldn't do it. I just couldn't go in. I told them to give me a few days to rest and try to recover on my own.

Against Ryan's wishes, I dragged myself onto my treadmill. I cranked up my oxygen to 5 liters and just went slowly, very slowly. It was so tough the first time especially because my lungs were so tight. I kept a careful watch on my saturation and just kept going.

Everyday, I have been feeling more energy. I am definitely not back up to 100% but I'm honestly convinced getting on my treadmill despite feeling like I should actually be going to the ER prevented me from ending up there!

This week I got on the treadmill five times and walked a mile each time I got on. I have resolved to make this even more a part of my health routine as I can really see how it has helped me overcome this set-back.

P.S. Here's a picture of the gorgeous bride....have you ever seen something so beautiful it made you cry?! I wept when I saw Ali, she is an angel in my life and I will never forget being there on her special day! Totally worth it : )



Day 5 of Healthy Home Challenge:

This is another tip that costs nothing and is so easy to do.

The book talks about how toxins enter our homes and one of the ways is through our shoes. "Toxins don't just waft it--they also walk in." When we walk in our homes, our shoes track in dirt and other contaminants that can be harmful...especially if we have kids who are playing on the floor!

The simple solution is to have a basket by your door or a shoe rack in the garage where you can remove your shoes before entering the house. Of course you don't need a basket or a rack, the important part is just to remember to remove your shoes before walking through your house!

I put a basket by our front door so we can have a place to put our shoes when we come into the house. Easy!

****REMEMBER to let me know if you are applying any of these tips in your own home and I will send you your own copy of The Healthy Home book as a gift!!****

A Glimpse...

For those of you who wonder what "home hospital care" really means, let me give you a glimpse!



The Set Up


Mommy's little helper


The finishing touch


This has pretty much been my life the last month. I am not complaining, just informing : ) It seems I'm constantly hooked up to one tube or another. Ryan snapped this picture of Harrison and I and it really sums everything up. I am in this exact position at least four times a day. If I'm lucky, Harrison will sit and play with me but he usually tries to crawl right off the bed. Here's what's going on in this picture: I am wearing Oxygen to increase the amount of oxygen in my blood. The less oxygen in the blood, the harder the heart has to work to pump blood and the more exhausted the body becomes. I am also doing a breathing treatment which helps to open my airways and makes it easier to breath. While I do my breathing treatments, I wear my nifty vibrating vest which not only shakes loose my mucus but gives me an awesome darth vader voice! It is not enough sometimes to just open the airways and shake them up a bit... Enter the big guns. I.V.s!! I am running my I.V. antibiotics five times a day. These antibiotics will kill the bacteria growing in my lungs. The I.V.s go in through a PICC line in my arm which goes to a big vein in my chest so it will last longer than a regular I.V.. Today will be 21 days on I.V.s and I have one more week and then I will be a free woman!

There are good things about being on home hospital care. I can milk it and pretty much get Ryan to do anything I ask, including going to the store at 11:00 at night to get me some lime sherbet! Also, lots of treatments means lots of time to study the scriptures. It's kind of my rule of thumb to do my scripture study whenever I do a breathing treatment. I started that years ago because it helped make something I dreaded doing...my treatments, more enjoyable and even meaningful by pairing it with something I treasure doing. Another plus is getting Persian food! Whenever I am not feeling well Sanam always delivers delicious home-made Persian food. This time around I got Ob Gousht and it was seriously so yummy and so healing. I also got a delivery from Suedy of Gormeh Sabsi, the ultimate Persian comfort food! Thank you Sharon and Suedy and thank you Sanam for the hours you have spent preparing healing meals for me! It's almost worth getting sick when I know I'm going to get your cooking : ) Last but not least on the list of perks of being sick is visits from mom. Yesterday she brought me the most adorable shirt from Anthropology "just because!" Thank you mom for everything, the babysitting, the groceries, the goodies and the love. You have always eased these more difficult times with your love.

Most of all, anytime I get sick, I reflect on how lucky I am to be alive and the abundance of blessings in my life. I feel Lexi closer and know she strengthens me when I am fighting harder to be well. I am humbled and turn closer to my Father in Heaven for comfort and healing. At the end of a "tune-up" I always feel like I have been strengthened physically and spiritually. I guess it's not such a bad price to pay... it just takes some patience!