Tuesday, August 30, 2016


It's 5:50am on Tuesday morning. I haven't slept a wink all night. The hospital is supposed to be a place for healing and it always makes me laugh how many times you're interrupted through the night. Do they sincerely think a broken or non-existent sleep is adequate for recovery or healing? Maybe that's not how all the floors are? Maybe just mine? Or specifically those caring for CF? If it's not the slow but steady stream of people in and out of your door; turning off alarming IV poles, or to poke your skin for blood draws, it's that your mind is racing of the unknown. You've just received some bad news, you're "taking it all in" - everything that's happening to your body right now. Or you may be going into surgery the next day. Worrying about your job, your family, things left unattended while you are here.

My mind is racing through many of those. Though, yes I agree to being an "open book," I also do reserve the right for some privacy and at this point am not ready to talk about all that is going on.

Though last night I had some visitors and a 12 year old boy, unbeknownst to the full extent of what's going on, he reminded me of the words, "be not afraid, only believe" (Mark 5:36). Turning my head and looking down, hiding my face with my hair, my eyes welled and my chin quivered. It was exactly what I needed to hear.

Monday, August 29, 2016


These past two weeks we celebrated my honey's birthday.
 We were able to pull up a pretty nice party all things considering. Over the years in the hospital we've pulled together "BBQ's", birthdays, mother's day, thanksgiving, christmas, and a gender reveal(!!). You get pretty creative and it's fun to stretch your mind and resources. They have a wonderful Recreational Therapist at the University of Utah hospital that always excited to help me or our family celebrate our party ideas during our stay.

Ric turned 28. I sent a text our asking people to "describe Ric in one word" & that's what accumulated on the posters behind him. Our siblings (that were able to make it) came up for some Costa Vida, outside fresh air, ice cream, chatting and laughing. 

                                                         Happy 28th Birthday my Ricky.

Thursday, August 4, 2016


It's a good way to start the day when you can go out and play in the sunshine with your baby. I get up up 90 minutes before Hawke's scheduled wakeup time, to complete my morning treatment routine. This month I'm on the Tobramycin medication. I have been on this medication since eleven years old. I used to only have to do it, "when I was sick" and grew a bacterial infection in my lungs. That bacteria has seem to found a nice home inside me, and the last ten years I've been doing this medication every other month. The "one month off" is to help slow down my body's resistance to the drug. Having CF we are on antibiotics eminently. The bacteria and infections in our body get used to the antibiotics and mutate - developing a resistance to the meds so they become less and less effective, until the bacteria reaches full resistance. Not good - always trying to avoid this.

But my early morning treatment time has become a savory moment for me. Treatments are the first thing I do. That alarm goes off and I sleepily walk straight to my machine and get going. It's been several hours since my last one and lots of secretions have built up in my airways, morning breathing is hard. I find almost immediate relief as I start working through my treatment. This time has also become the moments I study my scriptures  ( Book of Mormon and Bible) and strengthen my relationship with my Heavenly Father. I have found it almost symbolic that my first moments of the day rely so much on him. I am struggling and he knows it. He has allowed knowledgeable people into this world to create medications and machines to help me feel relief and to keep going. He hears my morning prayers, and in those early mornings it's usually just he and I working together to get the day going. My early mornings are my worship time. I am working hard to take care of the body God created for me. Studying the words & stories of our Savior, and the Prophets of old helps me to care for my spirit and soul.

As I clean up my treatments, I'll hear the cry of my baby. My favorite moment of the day - Hawke is waking up. Living in Utah for the summer has allowed cooler temperatures and living at Grandma's house with a big, grassy backyard has been bliss. I pick him up, we go outside and work out his morning jitters, enjoying the morning sunshine and life of a new day.