Lemons

Things have been a little nutty around here. Between sickies, Disneyland, homework, and work-work. Seems having down time doesn't happen too frequently. We decided last minute that we were going to go to Disneyland with the kids. Figured it would be the last opportunity for a while before we could all go again. You know, since Chase is trying to get into medical school and all. It was a blast!! One of the best trips we've had and we almost didn't go. The kids got sick.... Each one with something different. Kael had Croup, Claire got two different flu bugs and Molly got a cold/cough that came with a really high fever, no appetite and an ear infection. First Kael and Claire got sick and I had Molly on 'lock down' where NO ONE with sickie germs could be by her. I was a crazy nut case for a week. If I was helping my barfing daughter I wouldn't touch Molly until I de-contaminated myself. For reals.... I was a nut. But I just didn't want her getting sick..... and I didn't want to tell my children the bad news of a cancelled Disneyland trip because Molly was sick. But alas, Molly got sick anyways. And just days before we were supposed to leave. We were so lucky that we were able to get a CF clinic visit or else we definitely wouldn't have gone. Once she was on some antibiotics for her pesky ear infection, she started feeling a ton better. I'll post later on that trip.... but lets just say it was awesome.

I was really worried this time when Molly was sick. I thought for sure we would end up in the hospital. Her fever just got really bad, and then the fact that she wasn't eating well, didn't help either. She lost quite a bit of weight but that is also partly because her enzymes have decided to quit working for her. We are currently trying a bunch of different things but not much seems to be helping. The insurance won't approve the new enzymes the doctor wants to put her on so we have been battling that too.

Just a constant battle.

It sucks.


I've tried preparing myself for this but can you ever really be prepared for Lemons?

I mean you can try, but sometimes I wonder if it even helps. One of my goals for this year was to try and simplify. So that I could eliminate unnecessary stress. I'm failing miserably. I was dumb and thought I was ready to go back to school. So I signed up... only part-time... but still. I really thought it wasn't going to add stress..... idiot.

Ha ha, oh well. I really am enjoying my classes but I feel guilty when I'm away from my kids. And I'm not able to put 100% into my classes because I have a BABY with CF.

Babies take up so much of your time and then you throw in a chronic illness and finding time for anything extra just gets harder.

The battles will never end. It will never get easier.

I had a thought a while ago. I think I've heard this saying somewhere..... or maybe I made it up..... probably not, I'm not that smart. Ha ha.

Struggles don't get easier, you just get stronger.

I really do believe this to be true. Especially now. Hardships definitely do not get easier, but it seems that we become stronger as we battle on and push forward.

This year I've had a running theme. When life gives you lemons, make lemonade. I've always liked this saying but for some reason it's really been tuggin on my heart strings. When I get stressed or worried or dealing with some kind of battle, I think of this saying and it helps me stay positive. It helps me stay strong.

I life isn't going to get easier. And there will always be lemons thrown my way. Life is rude like that. Doesn't it know that throwing fruit is just not nice? Rudeness.

So let's all turn our lemons into lemonade. Stay thirsty my friends..... Cause I got a crap load a lemons headed my way.

Hard to Breath

Sometimes it's hard to breath.
Not because I'm sick.
Or have a chronic illness.

It's a combination of things. But mostly panic... and dread.

It's hard to make friends in the CF community.
Not because I don't like people. (which I don't sometimes)
Or because there aren't many people to connect with.

It's mostly because when you reach out or get to know these amazing people and you learn of their struggles and share similar trials. You start to care for them, and fear for them. And you get slapped in the face with the harsh reality of cystic fibrosis.

It's a harsh reality.

Since Molly was diagnosed I wanted to connect with other people in the CF community. So I searched and read stories and cried.... A LOT. So I stopped.

It was too hard. I couldn't deal with it.
I would panic and cry at what was happening to kids only months older than Molly and fear for them. And fear for Molly's future. So I took a break and I had my family members with CF and they would be my community until I got stronger.

I still cry every time I try to reach out and be apart of the CF community. It makes me so sad. I know there is so much happiness. Don't think that it's this horrible depressing thing. There are so many positive and great things. I look forward to meeting and connecting with more people.

But it's hard. You need to be strong.

I'm not.

Not today.

I'm a hot mess.

I'm struggling, daily, to be able to just breath.

The older she gets the more I fear for her. I want her to stay little forever. Little and perfect and healthy.

We had a cf appointment and Molly's doing ok. Not great, but ok. Her enzymes seem to not be working for her any more. So we decided to switch to a different type and see if this will fix the problem.

In the meantime, while we wait for the insurance to approve the new enzymes, she will continue taking the ones she is already on. But like I said they don't seem to be working all that great for her anymore. So she is dealing with all that awesome upset tummy stuff. Bloated, spitting up, just pure awesomeness.
And because it seems to be going right threw her, she is starving all the time.
She's a joy to be around right now. But would you be a happy camper? I know I wouldn't be.


And so we wait, and pray, and try other things to see if we can keep her happy and healthy.

And just keep trying to Breath.

I want to be strong like Claire

I thought this year was going to be better......

Well things don't seem to be going in that direction....

I welcomed 2014 with open arms. I was ready for the past year to be over and behind me. To quote a friend..."Be nice to us 2014." This was exactly what my heart was screaming. The past year seemed to be one full of trials not only for myself, but for many of my friends as well. Miscarriages, death, chronic illness, divorce, addiction.... just to name a few. 

I had high hopes for you 2014....

And then the feeling of impending doom crept in.....

I was released from my church calling and was quite dissappointed. I loved it and I was finally getting the hang of it. But I was fine. When they released me, I was told they weren't going to give me a calling right away. Give me a little 'break' since I just had a baby. I was like, hmmm ok, that sounds nice. But then I thought about it some more and wondered why?

Impending doom..... remember. 

I got this feeling like I was being given a 'break' because this year was going to be another hard one. And I panicked!!! I was letting it consume me and it was ridiculous because it was all just in my head. 

But when I had my last miscarriage I got the same feeling. 

Maybe I have super powers and I can see the future, Bahahaha. 

If only I could've seen what was coming.... If only.

Every parents worst nightmare.....

Have you ever had that feeling of your life going in slow motion, as you watch the horrors occurring right in front of you?

That was me today.

I watched, in slow motion, my daughter run in front of a moving truck and her tiny body get smashed by it's front fender and then fly about ten feet scraping the pavement as she went. 

My insides screaming at the nightmare that just happened. My brain accusing my eyes of being liars.

I couldn't stop it. 

Why couldn't this be just another horrible dream that I would soon wake up from?

It was all such a blur. At yet so vivid at the same time.

I'm just so grateful that she's ok. It could have easily been so much worse.... but it wasn't. 

There were kids all outside playing in the front yards. We were watching the kids, standing right there. We had just talked about how our kids freak us out when they try to bolt into the street. A few got yelled at and threatened for trying to attempt it. In that moment we were getting ready to go inside, then I watched Claire go for the street. I screamed... STOP!! But is was too late. 

I tried to run to block it and turn away from watching at the same time. I couldn't stop her from being hit. I couldn't watch her body get smashed. 

I heard the loud thump and watched her body get rocked by the blow. I watched helplessly while she skid across the asphalt just imagining the injuries this tiny person could be sustaining. 

It was one of the worst things I have ever witnessed in my entire life. 

I ran to her and scooped her in my arms..... I shouldn't have moved her.... but my brain was still trying to catch up and process all that had just happened. I felt like a chicken with it's head cut off, running around in circles not knowing what to do.

All my mind could come up with was....

WHAT SHOULD I DO?!!

I finally think.... 'call 911!' and 'put her down, stupid, you shouldn't have moved her'

I set her down in the grass. Her eyes roll back and she's trying so hard to focus. You can tell she is so dizzy and rocked. I see a mark forming on her head. I scream at the house call 911!  I lay Claire back and run to the door and scream inside call 911! I hear my friend yelling the same thing. She's already on it. I go back to Claire and the driver is by her. We are a hot mess and looking Claire over trying to see if she's bleeding or misshapen in any way. I fear she's laying there dying. The driver just starts sobbing.... I know she's thinking the same thing. We are both sobbing. I grab her and hug her and tell her it's not her fault. It's going to be ok. She hugs me back and we cry... waiting. A policemen on a motorcycle pulls up. It seem like hours but only seconds have passed since the accident. 

More people show up. A lot is going on. A lot happened all at once. They checked her. She's just screaming and clinging to me, saying I don't want to see a doctor. She seems ok other than a few bumps. The ambulance shows up. They say there is no major urgency if we would like to just take her in ourselves. My brain is screaming at me HOW CAN SHE BE OK?! I just look around at the people surrounding me not knowing what to do or say. After more discussion I finally decide to take her in myself. Everyone makes sure I'm ok and they pack up and are gone in a flash. The police stay and take my statement. I'm holding a still screaming Claire. Chase shows up. He was working and I didn't think he would be able to get off, but he was there. In fact, I didn't even know he was called. He takes Claire. 

The driver comes over and we cling to each other and sob. We are so glad that she's ok. 

We are both mom's who just experienced a mother's worst nightmare together.

I'm so grateful that she was the driver. That she was paying attention. That she was driving slow because of all the kids. That she was able to slam on her breaks fast enough. That she was so kind and caring.

We gave Claire a priesthood blessing and then took her to the ER so she could get her head scanned.

She ate and drank and watched cartoons. She bossed the nurses and doctors around... "check my heartbeat" "check my eyes"

The scan came back ok.

We are home and safe.

She has a bump on her face right by her eye and a few small scratches and bruises. 

It could have been so much worse.

I feel so blessed that it wasn't.

I am still so amazed at how little she walked away with.

I'm still in shock.

I'm still crying.

I'm hoping that this will be the last that 2014 will throw at us.

Please,

for my sanity and for my children,

please let this be the worst of it.

 Chillin' with Daddy at the hospital he works at.

 Not even a truck could keep this little power house down.

She's amazing.

I want to be strong like Claire.

With Hope, The Odds Don't Matter

I've learned the importance of raising awareness. If nobody knows about it, then how can you receive or give help? 

Growing up with cousins who had cystic fibrosis was an easy way for me to become 'aware' of the illness. And now that my own daughter has it, I am even more 'aware' and I have an even greater desire to raise awareness about cystic fibrosis. 

Cancer seems to be something almost EVERYBODY knows about. I've lost so many.... too many, friends to this awful killer. Each one was different. Each 'Killer' was different and I became aware of them because they had taken someone from me. 

I hate cancer.

But..... I have learned the importance of awareness, and what a powerful tool this can be to even just one person. 

I have friends who have beat the odds with cancer. Because someone, started raising awareness, at one point. And through that more people started learning and helping and saving. 

In the cystic fibrosis community I have personally seen the changes and progress awareness has helped create. 

I recently became 'aware' of a different type of cancer I knew nothing about. I would like to share one survivor's beautiful story of hope. 

Her name is Heather. 

In 2005, at the age 36, and only 3 months after giving birth to her daughter, she was diagnosed with pleural mesothelioma. She knew she needed to find a way to beat the odds for her husband and newborn. 

Asbestos is not banned in the US, yet it’s the only known cause of mesothelioma. Once diagnosed, most patients die within 2 years.

It has been almost eight years and she has dedicated her life to spreading awareness of this awful 'killer.'

Please take a moment and click here to watch a short clip on her story..... Help us raise awareness.

Help us share hope.

With hope, the odds don't matter.

I am grateful for CF.... Wait?! What?!!

Yes that's right, I'm grateful for my daughter's disease that I despise with every fiber of my being. Makes no sense right? 

Well, I had a really crappy appointment with Molly's CF Specialist this past friday. She seems to be doing ok but her weight gain was only and ounce and a half. Booooo. They aren't too worried about it but that wasn't even the tip of the scale this time. Remember how in my last post I mentioned my worry about insurance not covering her medications? Well.... So it begins. I've been using samples that they have been giving me and haven't needed to fill any perscriptions yet. Except her inhaler. She has been starting to get super 'rattly' in her lungs. Not horrible. But just more noticeable. I mentioned this to the Doc. She decided to be proactive and start her on pulmozyme. 

Here is a little info:

Pulmozyme^® is an inhaled medication used to treat the symptoms of cystic fibrosis (CF). It helps thin the mucus in the lungs so people can cough it out more easily.

Pulmozyme, along with other CF therapies, improve lung function in people with CF. Taking Pulmozyme every day has also been shown to reduce the risk of lung (respiratory) infections.

Pulmozyme acts like “scissors” in the mucus. It cuts up the DNA strands outside the cell that can make CF mucus thick and sticky. This DNA is from the white blood cells that work to fight lung infections. Even if a person with CF has not had a lung infection, the white blood cell DNA is still in the mucus.

So a 'typical' CF treatment goes like this:

1. Bronchodilator - like albuterol inhaler
2. Mucus thinning medicines, like Pulmozyme
3. Airway clearance-like chest percussions
4. Inhaled antibiotics

Pulmozyme is something that is going to be part of her survival in life. Even with this drug, CF will continue to damage her lungs but this drug helps extend the health of her lungs. Well.... my insurance doesn't cover it. They don't even cover the machine (nebulizer/compressor) in order for her to take the drug. They also don't cover her vitamins. Common seriously. Vitamins people!!! I'm waiting to hear back to see if I get my 'special' approval. These are things she needs to survive. These things are not optional, and they aren't covered!!! This is wrong, and it's only the beginning. I.... We are going to be constantly battling 'the system' trying to get the things she needs for survival. 

As I was sitting there in the parking garage of the hospital, having just left their pharmacy empty handed, I just sat and cried. I was being slapped in the face, again, with the reality of CF. Its such an ugly, horrible, cow pie and bologna sandwich, stupid disease. I drove home with this dark cloud full of thunder and lightening, just hovering over me. How? What? How? Why? When? Why? What the heck? So many things storming in my mind. 

Wait.... And your grateful for CF?!

Why yes I am! Let me tell you why. 

I teach Relief Society in my ward and it was my week to teach. I had been going over my lesson but had been struggling with where to go with it. So I kept putting off writing it up. Saturday, I decided instead of staying home and working on my lesson I would go help my friend who was in desperate need. I love this girl. Seriously. She's an amazing mom and friend. She has some major trials going on and I was ever so happy to go and help, even just a little. I left her house that night feeling on top of the world. Serving had put some of my broken pieces of me back together. And what do you know... That's what my lesson was on. Doing good in the world. Serving one another spreads happiness. It makes the person your are serving happy and in turn it makes you happy. We get so wrapped up in ourselves sometimes and forget that the best way to be happy is by serving others. 

Our happiness increases when we help others find happiness.

We should have before us a strong desire to do good to others. Never mind so much about ourselves. Good will come to us all right if we keep our minds outside of ourselves to a certain extent, and try to make others happier and draw them a little nearer to the Lord. … When you find yourselves a little gloomy, look around you and find somebody that is in a worse plight than yourself; go to him and find out what the trouble is, then try to remove it with the wisdom which the Lord bestows upon you; and the first thing you know, your gloom is gone, you feel light, the Spirit of the Lord is upon you, and everything seems illuminated. -Teachings of Lorenzo Snow, Chapter 22

So what does this have to do with CF? I would've never learned this lesson if it wasn't


for my daughter's CF. I would have never noticed the difference in my happiness or how to get my broken pieces back together if it wasn't for the experience I had at the hospital the day before. I am being forced to grow, wether I like it or not, and it's because of my children. The Lord is working through them. Especially my sweet little Molly. I am grateful for Molly because she is a major blessing in my life and I wouldn't want her to be any different than she is now.

So yes..... I am grateful for Cystic Fibrosis.

Not even 3 months! She's such a strong little girl!