Outrun CF and a little about my journey

Today was absolutely amazing!  We had our outrun CF 5k and here is the group that came to support us!  I love them all and am so grateful for them in my life. 

The whole crew that came this morning.  My awesome sis in laws made some shirts since ours didn't make it in time.  Im feeling very blessed and very loved!

 I have more pictures to follow, but as CF awareness month has ended I just want to share a little about the journey that I have had with CF.  I was born on December 28, 1979 and within 3 days of life had to have surgery.  I had a blockage in my small intestine and had to have 20% of it removed.  My parents weren't sure how I would do with surgery.  In our church, the Church of Jesus Christ of Latter-Day Saints when babies are born they are given a name and a blessing.  This usually happens in the church during our Sacrament service and the baby is all dressed in white.  Due to the circumstances surrounding me, my parents decided to bless me in the hospital.  I did well with surgery and when my mom saw me after surgery she knew that I had Cystic Fibrosis.  My brother that is 2 years older than me has it as well so they knew what they were dealing with.   I wasn't actually diagnosed until about 3 months.  When my brother was diagnosed they were told he would live to be maybe 13.  I cant imagine the devastation that must have been with my parents knowing that 2 of 3 children would most likely not make it to adulthood. 

Fast forward through my life and I don't really recall CF playing a huge role.  I did everything the other kids did.  I did sports, gymnastics, dance and cheered all 4 years of High School. It was rare that CF held me back from anything.  Of course it took a lot of dedication to make sure I did all my treatments and stayed healthy but I didn't feel any different than anybody else.

I think when I really understood that I had a disease was when I was in 4th grade and got pneumonia.  I missed a month of school and knew that wasn't a normal thing. Thankfully throughout my life I have had amazing teachers that were very helpful and supportive and I never got behind.  In 8th grade I remember getting very sick again and for some reason my mom and I had a very irrational idea about going in the hospital, thinking that if I went in there then it was the beginning of the end.  The Drs. worked out a plan that if we stuck to, they wouldn't make me go in the hospital.  I had to do an inhaled antibiotic 3 times a day, this meant I had to go to my Grandmas everyday during lunch and do medicine.  Every night my friend Kevin would come and sit with me and keep me company since it took a really long time to do.  His mom even bought us bean bags to hang out on.  Thankfully I always had the most supportive and loving friends.  When I was 15 the time came that I finally needed to go in the hospital.  I was super scared and truly thought maybe I wouldn't live very long after this.  After that first stay though, I realized it wasn't as scary as I thought and I felt awesome.  In fact those 10 days became days that I looked forward to.  I would have friends come and stay overnight and it became a party with fabulous food.  I continued to go in the hospital every year until I was 21 and then things changed a bit for me. 

I was going to my 4th year of College getting my Bachelors degree in Psychology at Weber State University and living in Ogden.  I had had a few small episodes of hemoptysis, (coughing up blood.) My dr had always said if it was more than 1/4 cup then you needed to worry.  It usually stopped before that so I wasn't too worried.  Then came that fateful day,  I was at Disney on Ice at the Delta Center and I suddenly started to feel weird.  I went up to the bathroom, my cousins boy Dakota came with me because he needed to go too.  I think he was 4.  We were in the bathroom stall and I began coughing up lots and lots of blood.  It was awful and very scary.  I kept telling Dakota that I just had a bloody nose and to turn away.  I really wasn't sure what was going to happen at that point.  Finally it stopped and we went back to our seats.  I remember my grandma telling me I didn't look very good.  I told them after what had occurred.  I believe the next day I ended up in the ER with my oldest brother and the Drs. just sent me home.  Well the bleeding continued on and off and I ended up in the hospital.  The first night there my mom stayed with me and I had the worst bleed I have ever had in my life.  They believe I lost around 6 cups of blood and I nearly needed a transfusion.  I had a lung embolization at that time and didn't have a bleed again until 2 years later when I was pregnant with Cambree. 

A few months later I got married, had a good job and then I began going in the hospital a lot more.   Im sure some  of the reason was from the embolization but I think mostly it was from the stress of my job.  I was placing people with disabilities in a type of foster care and managing the home.  It took a lot out of me.  In fact I had 4 hospital stays in the year and a half that I worked there.  This was unheard of for me.  I then learned that I was pregnant and knew that I needed to quit my job.  Pregnancy went mostly good.  I ended up on oxygen at about 31 weeks and had some severe rib pain that caused things to go downhill fast.  I was admitted at 32 weeks and my PFTs were in the low 20s.  They think they probably got a little worse after this point but I wasn't well enough to do PFTs again.  After being in the hospital for a day I ended up on 8 liters of Oxygen and after a week I had hemoptysis and was intubated and embolized.  Cambree was born at 34 weeks and I was again intubated and embolized right after she was born.  I had one more episode shortly after she was born that I was embolized for, but thankfully both Cambree and I did well and 9 years later Im still here to share my story.  I was on Oxygen 24/7 for about a year and half and amazingly I have been able to come off it for the most part.  I still wear it to exercise and sleep.  There are times when it is needed 24/7 but thankfully they are not very frequent.  These past 9 years I have had to learn a lot more about CF and face fears that I hoped I would never have to face.  I have learned to let go of some things, cleaning my house isn't nearly as important to me as it once was and learning the word no, is something I have had to do.  I have never wanted CF to control any part of my life but with time I have realized it is easier to give into it a little than to fight it.  I have had to learn different ways of doing things.  Playing catch with my daughter requires oxygen.  Pushing my son on the swing or chasing them in the water requires oxygen.  Sometimes its okay to take a nap.  But I have made a promise to myself that if at all possible I will do it, I just might have to do it differently than most.  I learned the hard way that running is just something my body cant do. Im pretty stubborn so sometimes it takes me longer to get it and let go. 

In the past 9 years I have had quite a few hospital stays and with each one there is always the fear wondering if my numbers will come back up and if I will be able to keep pushing on.  Thankfully through the power of prayer, priesthood blessings and faith I know that I am on the right track and my days are not yet over.  I pray I have years yet to live and feel as though I do. 

During my journey I have met some of the most amazing people with CF.  They truly inspire me everyday and I learn from them and hopefully become better because of them.  I am thankful that I get to call them friends.  I have lost some along the way and I like to think they help watch over me.  I miss them, but I am so grateful that I knew them.  I have the most amazing support system.  I don't know what I would do without my family and friends.  I also know without the gospel in my life I would be lost.  I have truly felt the love of my Savior surround me in times when I thought I couldn't go on.  I have been strengthened and lifted and receive the peace and the strength I need to journey on.  I truly think I am the most blessed girl in the world!  I could not have asked for a better husband.  He lifts me up everyday and gives me the strength to push on.  I don't know what I would do without him and my 2 sweet children.  When I don't feel like exercising or doing my medicine I think of them and it doesn't take me long to get my butt in gear.  I do it for them.  I do it for me.  I do it because I am a fighter and I will outrun CF!

Just starting our journey!

papa, Bull and Kathi

This is how we roll.  Ben carrying my backpack and me tied to the leash.  Literal ball and chain:)

Dad, Lesa and Payton

At the finish line.  Feeling good.  My first 5k for the books.

My sweet family!  They make this journey worth living everyday.

My awesome mama who is a rockstar!  I can never repay her for all she does for me.

The nieces and nephews that walked with me.  Jake was awesome!

My brothers and Sisters that were able to come.  I love them all so much and am so grateful for each of them in my life.

The parents, minus my dad that had to leave for a funeral. 

I am truly to grateful today and everyday for all the amazing people that show me so much love and support.  They are my strength and they help me to keep fighting.  One day CF will stand for Cure Found.

What a week it has been

I have been home exactly one week today!  It has been a crazy 6 months in regards to my health and an especially hard winter.  Since Sept. I have been in the hospital 4 times.  It has been hard and frustrating.  I have put off writing this blog today because I felt that all it would be was negative and thats not me.  Its really not.  I have had a rough few days and this morning was the clencher. 

On Wed. afternoon I got a call from a good friend of mine who has CF she heard some awful news about another CF friend and we needed to find out if it was true.  The news she heard was not true, but the truth was still very upsetting.  Our friend Angelic had been sent to ICU and needed to be vented.  Its heartbreaking and scary.  Then last night Cambree came down for dinner and sounded kind of funny.  I asked if she was sick and she said she had been coughing a little.  It has sent my mind reeling and its time to reel it back in.  I am hoping that sharing some of my thoughts will do that. 

I met Angelic in Sept so we havent known each other very long, but the thing about connecting with someone with CF it is as if you have known each other forever.  We became instant friends and have had 3 hospital visits together since then.  We have had some good visits and been cheerleaders for each other.  She txt me the Sunday before she was coming to clinic and said she wasnt doing good and was going to be coming into the hospital again the next day.  I was in the hospital and was looking forward to seeing her although I was sad she was coming in again. She just left about 10 days before this so this was not good news.  The next day she was admitted and we txt a bit.  I didnt go visit her that day because I knew she was tired and upset and I didnt want to bother her.  On Tuesday I stopped by her room and we visited for a little bit.  She was scared and worried.  We talked a bit but I didnt want to visit too long.  I could tell she was tired.  She definitely was worrying me.  Everyday I would check on her and she would say, I think Im getting a little better.  On Friday I was discharged and I said good bye to her and that I would be checking on her.  I have not been able to get her off my mind.  I have never seen her that sick and that tired.  It really worried me. 

I got home and settled and had a lovely nights sleep in my own bed.  The next few nights were filled with horrible dreams about CF and my health failing me.  I kept telling Ben about it.  I thought it was probably because I was so worried about Ang.  On Monday me and the kids were playing around and Lawson coughed.  Just a little cough but it didnt sound good.  Cambree instantly looked at me and then began to cry and was worried that I would get sick and have to go back in the hospital.  It broke my heart.  Thankfully our little comic relief Lawson knew just what to say.  "Sissy crying?"  "Yes, buddy, sissy is crying."  "Sissy hungry."  We all laughed and laughed.  Of course, all this crying because she is hungry.  The next day my Oxygen wasnt doing great.  I have been borderline 90's so I decided to just wear it all day and not have to worry about it and hopefully give my lungs a little rest.  When Cambree got home from school I made sure to tell her why I was wearing it and she seemed fine with it.  Usually when I start wearing my oxygen 24/7 it is a sign that I am sick and need to go in the hospital.  That night Cambree put a letter on my lap as she went up to bed.  It read, Mom we need to talk.  Come to my room in 2 min. and knock.  She had just been a little stinker and got in trouble so I thought it had something to do with that.  When I got up to her room she apologized for how she had acted and then she asked through her tears, "why are you wearing oxygen?"  It broke my heart to see my daughter so worried about me.  No 8 year old should have to worry this much about their mom.  I held her and talked to her about the reasons for wearing it and she continued to cry and cry and share all the burdens of her little heart.  She is so worried that I will have to go back to the hospital soon and I cant blame her.  I am worried about it myself.  I tried to console her the best I could and as I went to sleep that night tears wet my pillow. 

Then Wed came and the call from my friend Somer.  I have been able to think of nothing else.  My thoughts are consumed with my dear friend Angelic and her fight for her life.  It has brought all the ugliness that I hate about CF to the forefront and I am trying despereately to push it back.  Then with Cambree getting sick my other worries about myself going back in too soon can not be contained.  Everytime Cambree would start to come near me she would start to cry because she knew I shouldnt be by her.  What mother cant cuddle her own daughter when she is sick for fear of it sending her to the hospital for 2 weeks and possibly losing precious lung function?  About a month ago my sister in law Abby called me with an idea.  She asked if it would help if when my kids got sick they went and stayed with her for a few days?  I was so grateful to her for offering, but I did not want to have to send my kids away when they are sick.  I knew it was a smart thing since if I get sick I have to leave for 2 weeks but what mother does that?  Now I am faced with it.  What do I do?  Well, being a week out of the hospital I am acceptionally vulnerable to any type of illness and I knew I had to take Abby up on her offer.  I asked Cambree if she wanted to go to Abby's I wasnt going to send her if she didnt want to.  She said she did and then she said, "I just dont want to get you sick."  crushing...  As Abby left out the door with her, the tears began to fall.  I felt defeated.  I felt as though CF was taking everything from me and wondered how my children would view me when they thought back on our lives together.  Every miserable thought that I shouldnt have been thinking was flooding my brain and consumming my soul.  Then my husband called.  My oh so wise husband, truly.  He knows me so well and he knows when I need a loving consoling husband or a put on your big girl panties husband.  Well people it was a big girl panties kind of day and he put it to me.  He told me I needed to change my thoughts and be grateful and quit consumming myself with all of this or I would end up in a dark hole of deep despair.  I hated hearing it.  In fact I was a little upset with him.  But as we hung up the words he said sank in and I knew I needed to change my thoughts.  I began to feel a deep gratitude for Abby for taking Cambree and for showing her the love she needs now.  Im thankful that she could see this answer because I know I never could have.  I also know Cambree felt relief going somewhere that wouldnt get me sick.  Thinking of Angelic and the short friendship we have had it made me not want to be friends with another person with CF, but yet as I sat thinking about all of the beautiful people that I know and how they have made my life better I would never wish to not know them.  Yes, CF has its challenges and yes, it takes up so much of my life, but it has made me this person that I am and for that I am grateful.  It has made these friends who they are and I wouldnt know them otherwise or want them any other way.

Life is hard.  It is.  There is no way around that, but we are given beautiful moments and amazing experiences.  I know when I am in the darkest of days I can look to my Savior and he can fill me with Light if I let Him in.  I am trying to let him in and help me to feel that peace again.  As I read my scriptures today I felt that.  As I read uplifting quotes from apostles and prophets I feel that.  I know He knows us each individually and can give the comfort we need if we only let Him.  I pray that my dear friend can feel His peace and love surround her and I pray if it be His will that she will be able to pull through this.  But if He has other plans I will trust in that and the heavens will gain one amazing angel and the reunion of her with her mother and sister will be something so sweet and beautiful.  I love you Ang and I know if you have any control over this you will fight for it. 

Laura's funeral

Today was hard. It was truly one of the hardest things I have done. I said good-bye to my dear friend. I bawled through my whole talk, but I hope it was well received. I am truly honored that I was able to pay tribute to her through my words. I pray it is what Laura would have wanted said.

My talk

I would like to introduce myself and share how Laura and I became friends. I’m Emilee Pehrson I didn’t know Laura until their family moved into our ward 6 or so years ago. I was the Young Women’s President at the time and was needing an advisor for the Miamaids. After praying about this i felt as though Laura was right for the calling. I talked with our bishop, who at the time happened to be my brother and she was called. We had a good friendship during those years serving together but it was after her diagnosis that things really changed for us. You see I have a disease called Cystic Fibrosis and suddenly we both had this greater understanding for each other. I will never know what it is like to have cancer and all that Laura went through, but we both understood what it was like to be sick, and having someone that understood that helped us both in so many ways. We would talk on the phone often and got close through our car rides to Drs, treatment, lunches and other things. Laura always made it appoint to come see me in the hospital even though I know it was never an easy thing for her, I enjoyed those visits very much. Im so grateful that we were able to be so close.

There are so many things in this world that are unsure, constantly changing, or even scary. But I want to speak on truth. There are 3 absolute truths that I know without any doubt. They are unchanging, they are constant.

1- Each one of us is here because we were touched in a beautiful way by an amazingly strong, loving, courageous woman. Laura Diane Mutch St. Jacques

2-we will see Laura again. Because of Gods plan she will be with her family for all eternity.

3-our Savior Jesus Christ made all of this possible through his atoning sacrifice for us all.
In a talk titled "Sunday Will Cone" Joseph B. Wirthlin said:

In all the history of the world there have been many great and wise souls, many of whom claimed special knowledge of God. But when the Savior rose from the tomb, He did something no one had ever done. He did something no one else could do. He broke the bonds of death, not only for Himself but for all who have ever lived—the just and the unjust.

When Christ rose from the grave, becoming the firstfruits of the Resurrection, He made that gift available to all. And with that sublime act, He softened the devastating, consuming sorrow that gnaws at the souls of those who have lost precious loved ones.

This is the comfort and peace we are able to have, knowing we will be with Laura again.

If anyone talked to Laura for very long you most likely talked of her family, her beautiful children and her loving husband. When Laura and I were first getting to know each other and learn each others stories she told me the story of going to be a Nanny and how she met Bob. When you hear her tell it you know without a doubt that she was brought to Massachusetts to meet Bob and to start a life with him. They were married in the Manti temple and now have the amazing blessing of being together for time and all eternity. What a comfort that is.

Laura had this amazing gift for creating things. When we were in Young Womens together she was the official person to come up with ideas for crafts for girls camp. I couldn’t create anything to save my life and we would often laugh about this. I would ask Laura to come up with something and all she had to do was look in her closet of material and crafts and she had an idea and enough supplies for 20+ girls. I loved that about her.

Laura served a mission in the south states when she was younger and whenever she spoke of her mission you could feel the love that she had for those she served and taught. She is on a different mission now and I am sure that she is ready and eager to fulfill her second mission to bring souls unto Christ and to teach them of this gospel. I know that although she is not physically here she will be helping to rear her children from the other side. They have one incredible Angel looking after them.

One of the most amazing things about Laura is that even though she was struggling tremendously she still found ways to serve others. I will never forget the great act of service that she did for me in November. We had been talking earlier that day and I had been complaining to her. It seems silly now that I was the one complaining. Ben was away on business and I was sick and knew that I would be going in the hospital when he got back. He had told me to ask people for help, but it was something that was really hard to do. I remember telling Laura, “when people ask me what can I do? I never know what to have them do. The only thing I can ever think of is to have them bring me dinner and I am not going to ask people even family to bring me dinner.” She agreed that its hard to ask for something like that. Well, I had complained to the wrong woman. We finished our conversation and about 30 minutes later I received a text message from her. "I’m bringing over dinner tonight." I of course told her she didn’t need to do that and she responded with "well if you don’t let me you will make me feel bad." I would never want to make her feel bad, but I couldn’t believe that this woman who had just finished her last bout of radiation the day before was going to bring me dinner. It was a delicious dinner and I hope she knows how much it meant to me. That is the kind of woman Laura was. I know she struggled tremendously the last few years with finding ways to serve others with her lack of energy and other struggles she was going through, but I don’t think she realized that her friendship to those around her was the greatest service of all. I have a book called She and as I read from it I think of Laura. I would like to share a few passages from it.

she just had this way of brightening the day...celebrate her radiance

she made the whole world feel like home...celebrate her warmth

She made the whole world a better place...Celebrate her.

I hope we can all celebrate Laura and the life she lived. I hope we can celebrate the memories that we have shared with her.

As Laura went through all her ups and downs I would call her to see how things were going. We would laugh together and cry together. She would rarely complain and if she did she always apologized for it. I would always tell her she had every right to complain, but it was so rare for her that it just didn't come easy or natural. Then I would watch as she would go through the next battle in cancer and I was truly always awe inspired at this woman. She had incredible strength and faith that could move mountains. If faith alone could have cured her of this awful disease, it most certainly would have. She had more faith than anyone I know. I know now that The Lord had a different plan, but I know that because of her faith he blessed her and helped her through every battle she endured. I know that she was brought through the other side with loving embraces from those that have passed before her and that the Lord was pleased with the mission she accomplished here on earth.

I would like to close with a scripture, in Enos 1:27 it reads
And I soon go to the place of my rest, which is with my Redeemer; for I know that in him I shall rest. And I rejoice in the day when my mortal shall put on immortality, and shall stand before him; then shall I see his face with pleasure, and he will say unto me: Come unto me, ye blessed, there is a place prepared for you in the mansions of my Father. Amen.

I know that Laura is with her Savior again and he has welcomed her with open arms saying “well done thou good and faithful servant.” May we all strive to be a little better and remember the example that Laura was to each of us is my prayer. I will miss you my friend. Until we meet again.

In the name of Jesus Christ Amen

Disheartening Events

This past weeks events have proved some of the most emotional I have had in sometime. Needless to say I am back in the hospital for the 5th time in under 365 days. This in and of itself can be emotional but compared to the other things going on seems trivial.

My dear friend is dying...even writing these words makes my heart hurt. I am so saddened for her family, and saddened that I cant be there in some way. Im feeling awfully far from home. My friend has suffered from stage 4 breast cancer. For the past I believe 3 years. Chemo and radiation have been common place. I have spent many pleasurable hours with this amazing woman. The strength Laura has is a force to be reckoned with. If faith alone could have cured her, it would have been done.

The second emotional experience was hearing that another dear friends oldest brother passed away due to an aneurism in his brain, it was sudden and shocking. They were our neighbors all growing up and the one thing that has always stuck out in my mind about Nick was his kindness. I remember one morning after a long nightfall of snow, the snowplow came by, causing all the snow that had been previously shoveled to block the exit of our driveway. My mother was distraught. I believe she was trying to get us to school. Then without question or even asking for help Nick came and shoveled us out. It's amazing how such small acts of kindness can change a person for life. I was a mere 12 or 13 years old yet I can see these events so clearly as if they happened yesterday. I believe it was the first time I truly saw or at least remember what it meant to be "in the service of your fellow men". I've never, nor will I ever forget this young mans service.

As I contemplate both of these events and the lives they are leaving behind, spouse, children, I am so perplexed at how anything not of this earth can be more important than raising your own children. But as I truly ponder and try to seek solace I find the gratefulness that God is all knowing, He has a plan. We may not ever fully understand but for me it gives me great comfort to know that all is in His hands and His mercifulness. Without that knowledge I'm not sure I could cope. I will miss my friend. I'm sure there will be days where I reach for the phone to call her and realize again she's not there. I pray she knows of my love for her and her family and I pray Nicks family knows my love for them also. This is a rough world we live in, but there is still so much good and so many good people that I am lucky enough to know.

I apologize for my ramblings, I needed an outlet and blogger is it. Here is A scripture that often gives me comfort and peace
"And I soon go to the place of my rest, which is with my Redeemer; for I know that in him I shall rest. And I rejoice in the day when my mortal shall put on immortality, and shall stand before him; then shall I see his face with pleasure, and he will say unto me: Come unto me, ye blessed, there is a place prepared for you in the mansions of my Father. Amen." Enos 1:27

I pray for my dear friends, their families and anyone who is dealing with loss right now. Remember, all is not lost. Our lord and Savior died that we might live.