Disappointments and Realizations

I've been putting off this post for a couple weeks, I've known I've needed to share it, but I've also known I haven't wanted to and I've been far too emotional about it to write with a clear head.  Ive had an interesting couple of months.  I've set goals for myself that we're far out of my reach, and would push me nearly to my breaking point.

This goal in particular started when I saw a picture of a friend of mine on her facebook. It was a picture of her running on the beach. The amazing thing about this picture is that it was taken about 5 months post double lung/heart transplant. Seeing this made my heart full. I remember looking at it and thinking, I want to do that. As I had this thought many others entered. I wondered if I would have to wait for the time of transplant to be able to do this. Then I became inspired. Its difficult to know Sharlie and not be inspired. I decided then and there that I was going to get every last bit of life out of these lungs that I could. I was going to make them work harder than they have and I was going to see just how far we, my lungs and I could go together. (a little dramatic right?)

Shortly after, I decided to start running, I decided I wanted do a 5k in St. George in Nov. I was sure I would never run the whole time but wanted to say that I did it.

It took a stroller, a big tank of oxygen cranked to 8 liters and a lot of determination to get started. I looked ridiculous pushing that oxygen around, but hey you gotta do what you gotta do. I remember the first morning, I would walk for 3 min and then run for 1. That first min run was one of the longest of my life. I literally thought I was going to die. When all was said and done I think I walked/ran about 1.5 miles . The second day was similar, but as I checked my oxygen and heart rate I realized my heart rate was about 212 bpm. Not good! I was so frustrated. I remember going in and talking to Ben, nearly in tears sharing my dismay with him. I wondered if it was even physically possible for me to run. He gave me encouraging words and told me not to work too hard. I decided I needed to pray about it. I know it may seem silly to pray about running, does the lord really care if I run? Probably not, but he does care that it means a lot to me and he will lead me to what I should be doing. In that I have no doubt.

After praying and contemplating this matter for a while I remembered a talk I heard by Elaine S. Dalton. She talked about when she first started running she would walk a step and run a step and continued this until she was running more and more. I decided to try it and felt peace that this was a good way to go. It went really well and instead of boring you with all the details, I got to the point in a matter of weeks that I ran 1/2 a mile continuous without stopping, about 7 min. I couldn't believe it. I was so excited and had hope that I really could obtain my goal. Each day I was decreasing my time or Increasing my distance. I got up to 2.6 miles, running probably 1/2 of that intermittently. It felt good. Then a little over a month ago I was running/walking on the treadmill and I felt different. I couldn't run for nearly as long at a time and I had to stop quite a bit. I felt very short of breath. I was worried. That Sunday I walked up some stairs, got very short of breath and had quite a bit of pain. The best explanation I have is it felt like I had a weight on my chest and when I would breath deep the pain increased. I tried to take it easy that week, the pain eased but never completely went away. I then had a drs appointment. Typically I can tell if I'm going to need to go into the hospital. I definitely thought my numbers would be down but felt pretty good overall.

Every visit before I see the Dr. I do what is called a Pulmonary Function Test (PFT). This tests a lot of different things in my lungs, the main thing they look at is the FEV1. Basically, how much air I'm able to blow out in the first second. This determines how much infection is in my lungs. I got done with the first round ( we have to do it at least 3 times) I was anxiously awaiting the numbers to pop up on the screen. It takes a few seconds. When I saw them, shocked is the only way to describe my reaction. I looked at Ben and could see the shock on his face as well. My numbers were the lowest they had been in years, yet i was probably working harder than I ever had (i.e. exercise, treatments etc.) Two more tries brought similar results. Ben and I walked to the elevator and I couldn't even talk to him. If I did I would start crying. I was angry, sad, frustrated, and frankly scared. I don't admit that very often or very easily.

We talked with the Dr. about my running. We wondered if it had something to do with my low numbers. He told me to scale it back a notch and come back in a month to see where I was at. That night and the next day were very emotional for me. My hopes of being able to run we're shattered. I felt defeated. Here I had worked so hard and had wanted it so bad.

Logically when I think about running and needing 8 liters of oxygen I wonder why on earth I am doing this? It seems pretty ridiculous. I think the biggest problem is its just one more thing on the list of things that CF holds me back from and having to deal with that realization is never easy for me, big or small. Whenever someone tells me I can't do something I go into immediate "you wanna bet" mode. So to have my body tell me I can't do something it just makes me want to work that much harder. But at this point I fear I'd be doing more harm than good just to prove a point.

Two weeks after that appt. I called the docs and told them I knew it was time to come in. I have actually ran a little in pulmonary rehab, at the hospital they monitor me. I think we have come up with a good plan. No more than 2 minutes running consecutively and at least 2 minutes walking in between.

I'm still not quite sure the why. Meaning, why this is such a big deal to me. I guess I still have a hard time dealing with the limitations caused by Cystic Fibrosis and given my best efforts my lungs are not ultimately in my control. Of all the pills I've had to swallow, this has always been the hardest.

First Day of School

School has been in full swing for 2 weeks and I am a complete slacker on my blog. I have so many things to catch up on, but didn't want to skip this. Hopefully I'll get back to posting about our fantastic summer later.

My beautiful girl started 3rd grade. I can't believe how grown up she is. I think I cried a little for two days before school even started. I hate change, I always have. We had a pretty good gig going this summer, her, I and, Lawson. Cambree was the most helpful girl. She played with her brother everyday and helped me out so much. One day while I was exercising downstairs and she was watching him she called me and said, "mom, I'm going to give Lawson a bath is that ok?"
Ok? Holy cow, why had I not realized her abilities earlier in the summer?

There were 2 things Cambree was most excited for: 1- she got bangs, she has even sang many a songs about her newfound hairstyle. 2- getting glasses, which she actually just received thurs. and she absolutely loves them.

The first day of school Cambree was nervous, she had talked to a lot of friends her age and most of them were in the the other 3rd grade class. There was one friend that Cambree was super close to that she hadn't had a chance to ask. She was holding out hope that she would be in her class. As I walked with her to the doors we saw lists of classes posted. We both searched for her friends name. I finally saw it listed below the other teacher and my heart sank. I showed Cambree and I watched my brave little girl hold back the tears. I was so sad for her, I too was fighting back tears. I hugged her good bye, went back to my car, and let the water gates open. I think I rayed for her all the way home hoping she would have a good experience. As she barreled through the door that afternoon there was nothing but excitement in her voice. I was so relieved and do grateful.

I have found over the years that one of the many gifts my daughter has is the ability to make friends with anyone and everyone, and more importantly to be a good friend. I love this about her. I'm looking forward to an exciting year of learning and growth for her.

Cambree's baptism

Cambree was baptized on June 2, 2012.  It was such an amazing day that I have been looking forward to for quite sometime.  Unfortunately it had to be postponed a month due to me being in the hospital, but everything was perfect and she was so excited to get baptized.  Ben and I both wrote Cambree a letter to read the morning of her baptism and gave her a necklace that we have been holding onto for a while.  We bought her a butterfly necklace with a little diamond in it when she was about 3 years old.  I always knew I wanted to give it to her for her baptism.  As time has gone on since that purchase there have been times where I have wondered if I would be here to give it to her.  It was such an amazing experience to finally be able to and to know that I am going to be here for a good long time yet.  I think one day she will realize the significance of that necklace to me. 

The opening song for her baptism was Im Trying to Be Like Jesus, talk about get me crying right from the start.  I have sang this song to Cambree thousands of times.  Its one of our favorites.  Cambree and my sister Whitney also sang a duet that was beautiful its called When I am Baptized.  So basically I was a cry baby the entire time. 

When Ben stood in the font with her to baptize her and began to get a little choked up I too cried again, I am so proud of Cambree and her decision to become a member of The Church of Jesus Christ of Latter Day Saints. She is such a special girl that has a huge heart. She loves people and is truly a kind little girl. I hope she can always stay that way and always remember how she felt on her special day.

Opening her necklace

Excited for the big day!

Very happy parents

My sweet little family

She is such a daddy's girl

Baylee got baptized the same day as Cambree

Cambree's cake. 

A June filled with emotion

I've been thinking about writing a post for sometime now, talking about the different emotions that have occurred, both highs and lows. Just when I would think I had what I wanted to say collected in my brain a new event would occur and change everything I was thinking. I'm sure this post will be scattered so please bear with me. June started out with the baptism of my baby girl. I'll post a separate post later, but it was a beautiful day. We were saddened to hear of the loss of our cousins father in law that day. Cambrees baptism could not have been more beautiful. I had tears often because of the joy I felt for the decision she had made. Then came our Anniversary, 10 wonderful years filled with a lifetime of experiences. I remember feeling a little sad with the realization that we only got about 1.5 years of marriage together with healthy Emilee. Sometimes I miss her desperately. I miss being fun and outgoing and not having my life revolve around medicine or oxygen. We had a wonderful Anniversary filled with amazing food and the joy of being together. The next weekend we went to Fish Lake for 2 days, although fun, it reminded me of how much I missed the healthy me as well. Having to wear my oxygen constantly gets really old really fast! The space between Anniversary and Fish Lake we heard some terrible news that two former classmates passed away. One a year older than me (suicide)and the other a year younger (accidental overdose) I was deeply saddened for their families, but more for them and the life choices they had made that brought them to this point. I remember thinking, by all counts these two should have outlived me. I was saddened that they were lacking in joy. I've been thinking a lot about joy and the quote by President Gordon B. Hinckley, "Life is to be enjoyed not just endured." I wish people understood this more. This life has so much to offer. I also have been thinking about a quote by President Thomas S. Monson, "Find joy in the journey." Find is an action, we might have to work a little to get the joy, but it is there to be found. My hope for everyone I know is that they can see the joy in their lives, that thy can feel the love that surrounds them and they can know of their great worth and talents they have. Not long after these deaths a fire started in our area. I have never seen a fire so close to us. After 24 hrs of it burning it began to become very real. A man that I don't know well, but that works for the city had his house burn down. He lost everything he owned. He had a trailer ready to load things, but because he was so concerned with the welfare of others he never got a minute to go back to his home. I had family that lost 100s of sheep. I became emotional hearing these stories. I was saddened for their loss. A few days passed and it seemed that things were getting under control. My nephew had his 9th birthday and a bunch of us went to 7 peaks to celebrate. On our way home we learned that Fairview, the town I live in was being evacuated. I remember feeling a sense of panic. I wouldn't be able to go home and grab anything. All I had was a swimming suit, some underwear (thankfully) a t-shirt, and some basketball shorts. My children each had an outfit and that was it. I didnt have the medicine I needed or even a car because I had loaned it to my brother to go home earlier. I'm not sure I've ever felt so helpless. I was with my sister in law Kim and we decided to go to my sister Brandi's house. It's kind of amazing how everything worked out, my sister Whitney was able to get me oxygen just before the place closed, I was able to get the most important medicine I needed just before the pharmacy closed. It was very apparent to me that I was being watched over. As I lay in bed that night with both my babies by my side (Ben was in Cedar City at a football camp) I realized that worse case scenario my house burn to the ground. I knew even if that happened(the likely hood was very slim) that we would be ok. My family was safe and that was all I needed to know. It was a humbling experience, realizing that none of this "stuff" matters. Yes, I would have been sad and there are things I wish I could have grabbed, but overall it all would have been alright. I'm thankful for the lesson I learned that day, but even more grateful for the joy and the love that I am so abundantly blessed with.

10 Years and Counting!

 I remember sitting in a hospital bed when he came in with some of my friends from High School.  They happened to be his cousin.  Its funny that thats where we met, the hospital.  Who knew how much our lives would revolve around that place.  When I first saw him, I thought he was pretty cute.  I thought he would be cuter without braces, but still cute.  Then he was messing with his pager and asked if he could use my phone to call it.  I then thought, why is this little rich boy here in my room?  Obviously he was less than interested in being there.  See, where I lived no one I knew had a pager to me that just meant he had a lot of money.  Yes, I was making judgements.  Then as we are all visiting suddenly I get beaned in the head with a rolled up piece of paper.  Is this kid for real?  He could not of been anymore obnoxious.  Fast forward to almost a year later.  I am out on the high school track warming up for cheer practice when the football boys come running out of the tunnel, (it was always the highlight of our practice.)  Then I saw him, I know, so cliche, the football player and the head cheerleader.  This is good stuff people.  I remember looking at him and thinking, this cant be the same annoying kid I met nearly a year ago.  In a matter of a few months I came to know that he indeed was.  I asked him to the first boy girl dance of the year, girls choice and as they say, the rest is history.  Nearly 15 years later I still like to think back on that time.  Two very young kids with only hope and love in their eyes.  I would never believe people could know what love is in High School, except that I did.  It has definitely been a rollercoaster with this boy.  It doesnt seem that much has come easy except the love that we have for each other.  That has never been hard. 

When he went on his mission for 2 years to Ohio I have never been so sad, but have never grown so much either.  It was an amazing time for both of us with much growth and learning.  It prepared us to be married, to be ready for marriage and especially to be ready for what would lie ahead of us.  Our wedding day 6 weeks after he got home could not have been more amazing.  Simple and elegant, just how I like things.  We had our most amazing family and friends supporting us and the future held so much.  I never could have known the journey we would go on, but I wouldnt change a thing.  No things have not always been easy, but I couldnt have done any of it without Ben by my side.  He is truly the most incredible man I know.  He never questions what we are asked to go through he just buckles down and treads ahead full bore never looking back or wondering what could have been.  He always gives me the peace and comfort I need when I need it and when I need someone to tell me just how it is, he does that too.  I have been so blessed to find him and am so grateful that we will be together with our beautiful children for all eternity!  What an amazing gift that is.  Thank you Ben for 10 incredible years of marriage you make each day fun and exciting.  I look forward to what the future holds for us and know that with you by my side we can get through anything! I love you!







 These are the only pictures I have on my computer so here  you go:

Our engagement picture that was on our invitation.

It was such a beautiful day!

One of my bridal pictures.

Remembering Mothers Day

As I sit here in my hospital bed, waiting for my beautiful family to join me I am reminded of a mothers day from long ago. Eight years to be exact. I sat in a room very similar to this one trying to wrap my head around what had just occurred over the past 4 weeks and how on earth I survived it all. I think I was wondering how on earth I was going to take on this mighty task of motherhood feeling the way I felt and being weaker than I had ever experienced before, mind, body, and soul. I remember not having any energy as I felt the withdrawals from the heavy pain medication they had me on that I had decided to stop "cold turkey". Bad idea by the way. I felt as if though this greatest calling of motherhood was too great a task for this naive young girl who could barely get out of bed. I remember getting enough strength to go and see her that morning and as I gazed at this tiny, most beautiful little thing my courage returned and I knew with her by my side I could conquer the world! I would fight with everything I had to live for her and Ben and I would spend everyday trying to be the best mother I could be. I knew with the help of the Lord he would help me to raise one of his most precious daughters. Thank goodness Ben and I wouldn't have to do it alone. Although I have fallen short many many times I continue to try and am grateful for the opportunity to raise my now 2 children. I'm grateful for a wonderful mother who has shown me how to be a mom and has loved me unconditionally. Without her I would not be who I am today! Although I would prefer to not be in the hospital for yet another mothers day, is this 3 or 4? I've lost track. As long as my babies are with me I'm home.

Cambree turns 8!

These pictures are completely out of order. I still have a hard time with Blogger. Haven't quite figured it out. I think I am still in shock that my baby girl is 8 years old. Where has the time gone? For her birthday Ben and I made her breakfast in bed. I'm pretty sure this is the new tradition that she won't let me forget about. I started it last year. Hot fudge banana French toast, how can you beat that? She was pretty excited. We also gave her her presents. I made her a photo book from 2-3. Yes, I'm completely behind, about 6 years worth:). We decided to leave Lawson home and just make it a really special day focused on Cambree. She was so excited when she got done with school. She told me she wanted to get her ears pierced and that she wanted Aprils birthstone which is diamond. Apparantly her friend who is a couple weeks older than her had just got hers done. I told Cambree we could go do it if it was something she really wanted and wasn't just doing it for her friends or because her friends had it done. Her immediate answer,"okay, never mind. I don't want to." I was pretty surprised but I think it turned into a good lesson. She is a silly girl sometimes. We told her we would take her anywhere she wanted to eat. She chose Macaroni Grill. We also decided to start getting use of our pass of all passes and went to trafalga in Lehi. we had a lot of fun there. Laser tag, rides and rock climbing. All in all I think it was a good birthday. On fri. We let Cambree have a late night party with. Few friends. She invited Heather, Megan, Payton, Ellie, and Emma Kate. I usually go all out with decorations and all that, but this party was pretty low key since I wasn't feeling great and we will be having a big family arty when she gets baptized. The girls made mini pizzas and per Cambrees request we had mini cupcakes. The girls got to stay until 9:30 and I think all in all it was a success!It still amazes me that 8 years ago we sat in great anticipation for the beautiful girl we couldn't believe was coming so soon. I remember us frantically trying to come up with a middle name for her. Originally I had thought she shouldn't have one because I didn't have one. Then the night before her arrival I was adamant that she should have one because I was always a little upset that I didn't. I wanted something that had meaning and purpose something that would in someway describe the amazing ness of this little soul and all we had been through. I wanted her named after me, but Cambree Emilee just didn't fit right. After looking for quite sometime Ben found Malli, it means flower. Yes, that would be perfect so delicate yet so strong to grow into such beauty. It also is like Emilee without the E. I loved it from the minute I heard it and knew that it was very fitting.I am so very proud of my little girl and the amazingly loving beautiful girl that she is. She has given me a world filled with wonder and joy and I look forward to what her future holds in store for her. I have great hopes for all that she can become. She never ceases to amaze me and the love and concern that she has for others is a great gift that she has been blessed with. I've learned more from her in her 8 years than I could have ever learned otherwise. I pray we continue to teach each other and learn along the way. I love you sweet Cambree Malli and all that you are!