My Year In Review with Pictures!

What a year it's been. It's been FULL of ups and downs - probably the most emotionally compact year I have ever had, and might ever have. Even though I've been through a lot of very sad a devastating events - I am able to look through this year with joy and peace - knowing that the time I spent this year was worth it all. It was filled with happiness. I am SO glad that I am able to say that. I'm so glad that this year wasn't filled with regrets and disappointments. Are there a few things I wish I could go back and change, go back and do differently? Of course - with the loss of my husband, of course I wish we could have done a few things differently and changed a couple of things - but I'm happy, overall, with how things went this year. And I have been very, very blessed this year. So here is year 2011 (the major happenings) - with pictures! =)

So we discovered the reason that Spencer was getting so sick so frequently was probably due to mold in his mom's house. We didn't want to move out until we got married, but his health was declining so very fast. Fungus started to grow in his lungs again as well and that was our sign that we HAD to move out of his mom's house as soon as humanly possible. Two weeks later, after a hospitalization, we were able to clean out and move into a basement apartment. We moved into a friends/old RT's basement and boy did it suit us perfectly! It had about everything we needed. The most exciting part? It was the first time Spencer had ever lived away from home =) I knew it was what he needed to start taking charge of his life and improve his health. To start taking some responsibility. So March 12th we packed up everything (in just about 4 hours!!!) And moved from Bountiful to Layton to start building our lives in our first place!!!!!

The above picture is of the living room as we were trying to dry the carpets after shampooing them. It was a pretty big living room. We put a bigger couch on the right wall, a chair next to that, the TV in the far left corner of the picture, and a smaller couch along the wall just outside of this picture! The bottom picture is of my territory =) The kitchen. It was small, but had just what we needed. There wasn't too much counter space, but when it was all cleaned of (haha) I had just enough room to cook us a meal.
I started seriously looking into the Church of Jesus Christ of Latter Day Saints at the beginning of 2011. As I said, Spencer really wasn't doing well and we were worried that the possibility of transplant was going to come up rather quickly. I was scared beyond belief of losing him because I saw him decline so fast. I had always been interested in the Mormon church and after talking to my wonderful friend, Christine, who is also a convert and is VERY similar to myself, I decided to take a trip to temple square with her one day while Spence was in the hospital. I had some amazing feelings while we were there.... I knew that I really wanted to look into it much deeper. So Christine so kindly helped me get set up with some missionaries from her ward and I started having a couple of lessons at her house. I was a little sad Spencer couldn't be part of these lessons - I was learning so much and I was so excited about it, but it was hard for him and I to share the same level of excitement and have the same discussions about the lessons because he wasn't there. So we met in Spencer's hospital room a couple of times as well. Spencer and I had some very spiritual moments in his hospital room during the evenings as we would read the scriptures together, listen to hymns. We would stay up until the wee hours of the morning, me just asking him questions. Man he was the BEST person to answer any question I needed. What a great missionary he was. <3
After he was discharged from the hospital I met some missionaries from Spencer's ward in Bountiful - The Mercers. What an absolutely lovely couple with such a strong spiritual connection. Even after we moved to Layton - they came to give me lessons every week and Spencer and I called upon them several times for blessings and questions that we had. They taught me so, so much - never pushing. I am not one to ask many questions, and they respected that, they let me lead, mostly just teaching me. Spencer would chime in so many times, giving his way of helping me to understand. Those moments were so special to me and I cherish them all so deeply.

After weeks and weeks of discussions, I made the decision to become baptized into the LDS church. I was worried about the criticism, what my parents would think... etc etc. But let me tell you - it was the best decision I've made. I believe and I KNOW this church to be the true church of Jesus Christ. I have felt the love of my Heavenly Father more times than ever since making the decision to join the church. I know He loves me. I know He lives. I know we have a living Prophet to share the words of the Lord with us today. I am SO comforted with the thought that we can be with our families not only in this mortal life, but for ETERNITY. I can be with Spencer, even though he's gone, forever and for all eternity.

As it says in Matthew 16:19 --

"And I will give unto thee the keys of the kingdom of heaven: and whatsoever thou shalt bind on earth shall be bound in heaven: and whatsoever thou shalt loose on earth shall be loosed in heaven."

What a comforting feeling is that?!?! I am so happy to be a child of God and to know the truth, and to be a part of the Church that is true. <3

So I was baptized into the church I believe it was in May. (times run together since SO much has happened) And the best thing about it - Spencer was able to baptize me =) How special <3

This is a picture of Spencer, myself, and Elder and Sister Mercer, my missionaries and forever friends.

Thank you, Mercer's, for EVERYTHING you taught me. Thank you for being such a big part of our lives. You helped me not only grow in my own faith, but you helped our marriage grow and become rooted in Christ. Our relationship with Christ as a couple may have stumbled many times because of all of the trials that we faced, but every time we saw you we regained our ground again and remembered what was important. Thank you. I am forever grateful that I could, and still can, count on the both of you to give us blessings when we needed it, To give us a pick me up here and there, to be an ear to listen when I needed it. I feel so blessed that you two have come into our lives and I am grateful that I KNOW our friendship will not end when we die, but will be forever and all eternity. I love you both so deeply and sincerely.

The next big event?! Well our marriage, of course!!!! Spencer and I tied the knot in Kansas on June 3rd, 2011. What an absolutely beautiful, amazing, wonderful, and perfect day. All of our planning and stressing over our day being flawless 100% payed off. It wasn't sweltering hot like we expected it to be; the wind died down for our day even though it was blowing like crazy the previous day. I am so happy that so many friends and family were able to witness our big day. We had friends and family from Texas, California, Nebraska, and Utah able to make it to Kansas. It was a perfect day <3. The day I married my love, soul mate, and best friend.
My favorite memory from the whole day, and I have so many, was the way he looked at me the very first time he saw me. We did our "first look" photos before the ceremony so that we could spread things out so that Spencer wouldn't get sick and feel run down. So we cheated a little and saw each other a bit prematurely. =) I am so glad we did. The moment was so private, just our moment to share. I walked out of the church for the first time and covered up Spencer's eyes. He was so ANXIOUS to turn around and see me... But I will NEVER forget his look. The way he looked at me said it all. His eyes just lit up and you could read every expression on his face. He could not remove the smile... his smile said it all too. I was, and still am so deeply in love with him, even more so than the day I promised to be with him, no matter what. I was the happiest girl in the world on that day.
We chose to write our own vows - I thought it would be easy for me, and difficult for Spencer. BOY WAS I WRONG! Spencer typed his own in 10-15 minutes flat about 5 days before our wedding day. Me, on the other hand, spent HOURS and HOURS trying to write them out. I didn't get them done until 1:00AM the night before our wedding day. Holy cow. I don't believe I've ever shared our wedding vows - so here they are, a great reminder of the promises we made to each others. Words I'm going to cherish forever.

Spencer's Vows To Me:

Nikki, because of you, I learned to live again. You brought me out of my self imposed darkness and brought me into the light and as I stood there, startled and blind in the brightness, you continued to hold my hand as I again found my sight. My footing was, and continues to be, unsure and I stumbled.

Your strength kept me upright and continues to do so today.

I marvel at your compassion and beauty, both inside and out. I look forward to our lives together. Our love so strong that even the hand of death will only part us for a moment, until our spirits can again join each other on the other side

I take these vows before God to be faithful, supportive, and to cherish you unwaveringly.

I vow from this day forward to stand beside you through the good times and the bad.

I vow to constantly strive to be the husband and protector you deserve me to be.

You hold my heart now and for all eternity.

In Christ may we be together as one.

My Vows To Spencer:

Spencer, because of you I'm strengthened in every way.

When we come upon difficult times, the qualities I lack shine through you.

When you have patience, I have none. When you are courageous, I am scared. When you are confident, I'm unsure.

Together, we make our relationship whole.

I take these vows before God to be true to you, to love you, to encourage you, and to be a shoulder to lean on.

I promise to respect you and be sensitive to your needs; to always be the best wife I can be.

And I promise to be your best friend and never forget the love that we share on this day.

You hold my heat now and for all eternity.

In Christ may we be together as one.

And of course - A picture of the first kiss as husband and wife =) We didn't take a honeymoon after. We were planning on doing that at our 6 month or year anniversary. I'm really disappointed we didn't get that opportunity to share with one another. We also had plans to get sealed in the temple on our 1 year anniversary. To get sealed to each other forever and all eternity. I'm very sad we didn't get to share that either. But I am SO blessed with the time we did spend together. Not only did we have 6 months of marriage, we shared 4.5 BEAUTIFUL and loving years together.

As we were still in Kansas, trying to soak up as much time with my family as we could before we went back to Utah to start the rest of our lives together, we got the very sad news, one week after we got married, that Spencer's dad passed away from stage four malignant melanoma. This was a very rough time on Spencer. The bliss and happiness that we were supposed to be experiencing was consumed with shock and greif at the loss of Spencer's dad, and my father-in-law. We knew that he didn't have much longer here on Earth with us. He had fought a very long and brave fight with cancer and survived much longer than doctors expected him to. It just came as a blow to both of us that it happened so soon after our wedding day. June 11th, 2011. Spencer and I cut our trip a couple of days short to go back to Utah and be with his family.
Spencer had a really hard time with his dad's death, though I thought he handled it very well. Spence and his dad had recently started becoming very close ever since Mark found out he had cancer. They would spend long amounts of time on the phone talking and discussing various things. Spencer and I tried to visit Laurel and his dad as much as his health would let him. Spencer also started becoming much closer to Heavenly Father, and Mark was the source of that. He would always call his dad up to ask about scripture references and long discussions about the Lord. Mark's death was so hard on Spencer in that way. Rest in peace, dad. I am so happy that I was able to call you my father. I wish I would have gotten to know you better and to have spent more time with you. The relationship that you and Spencer built made me want you to be a big part in my life. I wanted to look up to you for Spiritual guidance just like Spencer did. Spence looked up to you. You are greatly missed.

Going in and out of the hospital consumed a lot of our time together. Spencer was able to finally have a pretty positive outlook on our life. He really did a huge change. He strived to be better. He wanted to be healthy. He really jumped on his treatments, did every single one of them - even if he thought he couldn't. We really thought he was making progress, and he was.... until September 19th when Spence woke up and couldn't breathe. He was admitted into ICU with a severe collapsed lung and sepsis infection. No one expected him to make it - but by the power of prayer and miracles, he survived..... but little did we know - that frantic trip to the hospital was the last time we'd ever do that again. That episode would forever be a memory engraved in my mind as the last time we walked through those hospital doors together. A moment in time that Forever changed the rest of my life.

I won't go into details since everyone reading this blog pretty much knows what happened. We had so many ups and downs. So many scary moments. But let me tell you what - those last 3 months he spent in the hospital were some of the most precious moments I have EVER spent with Spencer. They were hard. SO SO hard - but I quickly learned to CHERISH every moment I had with him like they were the last. I didn't know that my hopes about Spencer getting to come home with me again, to even just go to Christmas in Kansas with me were going to be shattered. But I held onto hope, up until the very, very last week he was alive.
I love this above picture of us. The last picture we took together. He was actually happy. He was working SO hard to get better. To get off that vent and to GET HOME. We had long term goals the whole stay. Be home for Halloween, Be home for Thanksgiving... And then to be home for Christmas. Unfortunately that didn't happen. We didn't even get a Christmas together as a newly wed couple.
I learned so much about myself during those 3 months in the hospital. I learned so much about our relationship as well. We were meant to be together. I believe we really were soul mates. We made it through the hardest thing all in one piece. How special our relationship was. It was such an HONOR and a PRIVILEGE to be able to care for Spencer through our relationship. To be his girlfriend, fiance, and wife. To be able to help him. to love him unconditionally and so deeply. Such an honor to be able to care for him in his last days of life. I wouldn't have it ANY other way.
I am in love with the above picture of Spencer. It was one of his last days with us here on Earth. He loved that sock monkey that was made for him. He was barely able to open his eyes up, he was SO weak. But yet when I asked him to smile for a picture - he did. He smiled until the very end. Until the very last moment he was able. What a precious soul.

Spencer passed away about 3:30 PM on December 11th; exactly 6 months after his dad passed away. He went so very peacefully, his hand in mine. It was the hardest thing I have EVER had to go through - but I am such a different person now than I was. I have a different outlook on everything about life. I know that Spencer is in a better place. Sitting with our Heavenly Father and his dad, his friends who have went before him. He is BREATHING and that is the most important thing of all.
Breathe Easy, Spencer.... <3

As I said - this year has been crazy.... but despite everything.... I am still alive. I'm here. I'm as happy as I could be under the circumstances I am under. I have a passion for life that I have never had before. I have new aspirations and dreams because of this year. I am thankful for everything that has happened to me... Granted I am deeply saddened and hurt that my best friend is in Heaven now, but what I learned through our relationship together is worth more than anything in this world.

The next year to come is going to present a TON of challenges. I am just now getting over the denial and shock of his death and so I am just now starting to grieve. It's the worse feeling one could have. It's very, very difficult. But I am so thankful I can be surrounded by the love of my family through it. I am going to experience new feelings all of the time... My emotions will constantly be changing. But I can do this. Somehow I will get through it and become stronger because of it.

I am looking forward to the new year - though I am also very scared. I don't know what to expect. But I know there will be so many new things and new opportunities for me and I'm ready for them. Bring it on 2012!!!!!! =)

Vision Or Research?

Not feeling too expressive tonight and so I decided to just make a quick post tonight.

Spencer always wanted to donate anything he could that would help others when he died. He told me even if his organs couldn't go to a person to save their life, he'd love for them to go to medical research. He was SUCH a kind and giving person.

We didn't really talk about organ and tissue donation when he neared the end of his life. It really never crossed either of our minds and the doctors didn't bring it up. I did think of it once and talked to Spencer about it the last few days he was here, but that's all the further it went. In hindsight I wish I would have brought it up with the doctors when I thought of it, but oh well, I can't go back.

The day that Spencer passed away we were driving back to Layton from the hospital and I got a phone call, not knowing who it was I nearly didn't answer due to the fact that I just wasn't in the mood to talk to anyone. But boy am I glad that I answered! It was the coordinator for organ and tissue donation!!! She told me that the only thing that Spencer was eligible to donate was his corneas. At that point I got a huge smile on my face and I just lit up. She continued to ask if that was something me and the family was interested in. I remember saying, "yes, yes, YES. He wanted to donate anything possible, so of course that is okay!." So she went on to tell me thank you and that they will proceed with the removal of his corneas as soon as I answered a questionnaire. I was told that if for any reason his corneas were not eligible to donate they would go to research at the U. Either way I was just fine with that since Spencer specifically told me that he would be okay with that - he wanted that.

After a 20 minute questionnaire she proceeded to tell me I would receive a letter in the mail telling me if they were able to donate them or if they used them for research.

Not a day passed by that I didn't wonder what happened to Spencer's corneas. Was someone seeing because of Spencer or were they learning? Did Spence give the gift of sight? Was someone seeing through his eyes? What a question! I was constantly on the edge of my seat to get the answer to that question.

Well about a week after Spencer's death I received a package in the mail. I noticed it was from the Moran Eye Center and I KNEW it was the answer to my question! I frantically opened up the package to find out what happened to Spencer's corneas....

I am SO happy to write that Spencer was able to give the gift of vision to someone who couldn't see =). Someone is now seeing through Spencer's eyes. What a great gift. I have no information about the recipient of his eyes but just knowing that maybe a person is seeing his/her children for the first time.... or colors.... or his/her wife/husband... Ahhh What an amazing thought =) I hope whoever received them is as deserving as could be. That they have a heart as big as Spencer's was. It might not have been the gift of life, but the gift of sight is equally as satisfying for me.

I so desperately wish Spencer could have donated more. To have saved more lives. He so badly wanted to. But every organ he had was diseased and his nephropathy effected his skin so that couldn't be donated either. I wish I would have thought to ask about his other organs going to research but as I said before - I cannot go back and change that.

I will later blog my spiel about organ donation, but for now I leave you with this:

If you haven't already, please sign up to be an organ donor! And remember to talk to your family about your wishes as well. You will be saving multiple peoples lives, there isn't a better gift than LIFE.

New Years Changes

I titled this post New Years Changes because I just don't like "resolution". It's so cliche. Everyone makes and breaks new years resolutions. Well this year, I just want to change. I want to make some differences in my life. Yes - I have said this in the past, we all have. I have really never went through with the resolutions that I have set. Other things took priority.

I have had some MAJOR life changes this year... and I really want to start next year off on the right foot. I want something in mind to reach for. Something I am able to obtain and be proud of. So therefore, I have thought of 3 things I really want to change and work on this year. To make different.

1) I want to eat healthier and exercise more. Do people say this every year? Of course they do. But this year I mean business. I am SICK of not being in shape. And I am REALLY hating the way my body looks. I am desperate for change. I NEED to change for ME. To be happy. I want to be confident again. I gained weight when Spencer was in the hospital and I lost A LOT of muscle mass as well. It's going to be so, so hard to do this - but it's something I need to do for myself. I'm already trying to start to change my eating habits - so far it hasn't been too bad. It's the exercising part that's going to be hard for me. But I am going to start really slow and only 2-3 times a week. I can do this....

2) I want to start on some of the projects I have in store. I am going to start putting together a book that I want to write. I am going to throw myself into it this next semester that I have off. I think it will be good for me to put my time and energy into a good use. Writing - something I love to do. I have no idea how I'm going to go about it yet - and it's NOT going to happen overnight... More so over the course of several years. But I want to get a good start on it while I have this break where I'm trying to figure out what I want to do with my life.

3) I want to read the entire Book of Mormon this year. I have printed out a reading schedule every night. I've tried to do this with the bible before and only lasted 3-4 days. I just want to spiritually grow. I am lacking in that part in my life right now - especially since Spencer died. I am desperate to find it again and learn so so much more about the church I know and believe to be true. Since moving back home I have already ran across some criticism in my home town about Mormons... It's going to be a REALLY hard test of my faith to stay here - but I hope it makes me grow closer towards my Heavenly Father, relying upon him for guidance with how to handle confrontations regarding my religion.

Sidenote: I'm not judging you for being Catholic, Lutheran, Methodist, or whatever religion you are... so please don't judge me for being a Mormon. I am a Christian and I believe in the same God that you do. Respect me and do not treat me differently. <3

I also have some little things that I want to focus on this year - but these 3 things are the most important to me. I will set little goals along the way... to finish our wedding things, craft more... etc etc.

So what does YOUR new year have in store for you?! =)

Sharing a friends words

Ever since Spencer's death I have known that my friend, Sarah, had written a blog post to me. I don't think I have ever met Sarah on a personal level but we are facebook friends, both go (went) to the U of U and we were both in ASUU together. I know I have seen her a few times on campus breifly as well. I don't think it was just by chance that Sarah and I crossed paths. She also has a few medical problems herself and so I'm sure there was a reason that we are in each others lives, if only it be online right now. You can read more about Sarah and her life on her blog: http://thebest8years.blogspot.com/ =)

Anyway...... I glanced at the post when I saw it linked on her facebook page but didn't take the time to read it. I was much overwhelmed and tired with everything going on and didn't have the right state of mind to sit down and appreciate what she said. But yesterday I sat down and saw her link a new blog post which made me remember that she wrote one to me awhile ago. I made the decision yesterday to sit down and read it. And WOW - it was just what I needed to hear. It was SO beautifully written. Her words flowed so well. I really wanted to share what she wrote and so with her permission here it is:

Somewhere, Beyond the Sea

This is for Nikki.

Somewhere high above the city, through the cumulonimbus and the thinning atmosphere, past the spot where stars twinkle and the moon smiles, beyond earth and beyond space, is a world without doors, sadness, or heartbreak. It's a place of light and love, where love really never dies and white is always in season. The gloriousness of this place can hardly be conveyed by a mere mortal. Having never been there, only symbolically I suppose, I can only imagine what it's truly like. But I do know that there is no disease, pain, or sorrow. Suffering is left behind and joy fills every crevice because the journey is over, and all were triumphant.

The worst part of this world is the ones left behind, the ones still suffering through grief and sorrow here on earth. It's hard to see sometimes that the ones you've lost are better because you feel so much worse. Slowly specs of time start to fill the emptiness inside, and confirmation will come through in the tiniest of ways to let you know everything will indeed be alright. An Everclear song on the radio, a sunflower on the side of the highway, two peas in a pod from the garden... It's the evolution of the soul in so many different contexts, all meaningful and all pertinent to the progression of the human spirit.

Loss is never easy. If it were, it wouldn't be called "loss", or the word wouldn't have such a negative connotation. The most sacred part of loss is knowing that eternity exists, the afterlife is there, and for the rest of your journey in this life can be propelled by knowing the ones you loved and lost will be there waiting for you when your sojourn is through. And that living without them, though never easy, does get more bearable, and even a little less lonely, even if it's the most minuscule amount humanly possible.

Somewhere, through the gray of the clouds and the inversion over this valley, past the light pollution from the skyscrapers downtown, above the space station and the moons of Jupiter and Saturn's rings, waits paradise for all of us.

Thank you for that, Sarah. So beautiful.

New Recipe Organization

I admit it.... I'm kind of a recipe addict. I probably haven't even cooked the majority of the recipes I have!!! I have tons of recipe books with ear tags, sticky notes, you name it all over them. I have tried a recipe box, but I could never find the one I was looking for! So I came up with this clever idea the other day as I was rummaging through a few old boxes.

I found an empty, lonely, photo album just waiting to be used. (I got so many for HS graduation!) The sleeves looked just big enough for my recipe cards that have meal ideas from the interwebs. So Hey! *light bulb* it hit me, Why can't I not just put my recipe cards in these photo album sleeves?! And so I did today =) Still have a long way to go to finish it... but I'm already loving it.

No more flipping through a recipe box... I can look at all of my recipes at once!

I'm sure I'm not the first one who thought of this genius idea.... But I wanted to share!!

I really quickly made up the labels - Entrèes, desserts, side dishes, and drinks... I am probably going to go back at a later date and re-do them to make them more fancy and crafty - but they work for now!!! And these pics - they aren't the best. I couldn't find my camera and so I clumsily tried to snap a pic with my webcam built into my computer... they will have to suffice for now!

Thoughts..

Christmas seemed to come and go this year. No preparation; almost no warning. Sad to say that it truly just didn't feel like Christmas. Even though we tried to keep traditions alive - it wasn't the same. Combination of several things:

Wasn't able to get gifts for Spence and I didn't get to open any from him; Not to mention he's not here and I don't have him to come back to.

Grandpa is in a home now and wasn't there for Christmas Eve at grandmas.... was different

Granma Johnson is in the home as well and so it was really different for Christmas day. Usually we go up to grandmas house or people come here, or we go to my aunts house - but this year they went to the home with her. I didn't go because I have a nasty cold so I stayed home with my mom (who was on call) and my sister (who couldn't go).

We still played the Wii on Christmas day like we did last year. It was fun.

But it's just a bummer it came and passed with not much enthusiasm - from anyone. I suppose that's okay considering everything... Just stinks.

We didn't focus much of gifts this year. Just really time with family. I'm perfectly okay with that. My big gift this year was a sewing machine. =) Just what I asked for. I have been really crafty and there are several things I want to make out of the blue and so I always thought it'd be nice to just have my own machine instead of waiting to go home and use moms.

I am so thankful for all the care packages, birthday packages, and holiday packages that came along with all of the cards. They really lightened the mood this year with everything that has went on. Makes it a little easier knowing that you have so many people who care enough to take the time to send something. Thank you to all who have done so. I'm working on thank you cards for the packages or gifts and will get them out shortly after the new year - writing a couple every few days.

Our house is stuffed to the brim with boxes and things from my house. I am so anxious and ready to get everything in its right place so I can feel like I actually live here and am not just visiting. Of course I'm not going to live here forever - but I am making myself stay at least 6 months.

I was going through a couple of boxes in my closet. I discovered my books that I used to read and I finally found my whole set of A Series of Unfortunate Events! Such depressing books but I love them. Ha. I am only missing the last one - and I have only read books 1 through 10! Guess it's time to reread the series and purchase the last book... but maybe for a later date!

I was also going through a box with memories from high school. My awards, pictures in the paper, articles, even a couple of essays that I wrote! Wow - How things change! I ran across 2 fill-in-the-blank books from when I was 8-10 years old.. Oh my goodness! The things I wrote in there were so funny! It was all about your best friend, so I wrote about my childhood friend, Tessa. Got a chuckle out of those memories!

The last thing I ran across was probably the thing I am most anxious to read. My high school journals!!! I am almost EMBARRASSED by them! XD I flipped through a couple of entries and I was laughing... typical teenager I was!

I started when I was a freshman - I got a journal for my 8th grade graduation from a family friend and I am so glad I started writing. A lot of my writing faded out when I was a senior. I am interested to go back and read about my disease, but like I said, almost embarrassed to read about my like in boys and who I dated along with the memories that comes with it! HA! I know there are some thing about Spencer in there towards the end - I am wanting to read that as I don't remember much about when Spence and I first got together!

I'm trying to give myself little tasks every day to keep busy. Today I tried planning out a lower calorie and healthy menu... Looking to get back into shape and lose some of the weight I gained when Spencer was in the hospital as well as gain back the muscle I lost. It's going to be pretty hard to do since I was so sedentary for 3 months - but I miss my old body! lol

Have a few plans for some projects I want to do while I am home. Just need to organize my thoughts and get separate journals for each project so I can keep them all straight and not forget anything that I may think of. I want my time to be useful!!!

Thats all for now. I have a couple more ideas for blog posts later! Just didn't want to cram it all into one long one! (even though this one is probably much longer than I intended it to be - but I just needed to write)

Help a friend out - it only takes a couple of clicks!!!

I know that there is a heck of a lot going on since it is the holiday season! Stress runs high, money runs short, everyone is running around everywhere getting last minute tasks done... But hang with me and please keep reading - because I'm only going to ask you do make a couple of clicks to help out a very special friend of mine!!!

Josh Mogren is just a not-so-typical guy (said in the BEST way possible - promise!!!) who has the same disease that my husband, Spencer, had - Cystic Fibrosis. He has a passion of helping others, kids and adults, live their life to the fullest, even with having CF. Josh has created many videos using his m/puppet, Moganko to help kids comply with their treatments to help them feel well and stay healthy! He makes it fun!
Well Josh has been working on the Super Secret, Not-So-Secret Moganko Project for the last several months and, friends, I am so EXCITED to say that it has finally launched!!! But the whole idea of this project CANNOT and WILL NOT happen without the help of friends, family, and the CF community!

Let me tell you a little bit about what Josh is wanting to do! (Taken directly from mogankoforcf.org):
As I've said - Josh makes a lot of videos featuring Moganko to help kids comply with their treatments and realize that they are so much MORE than Cystic Fibrosis!!!
"Creating these videos gave me a great idea! I want Moganko to meet The Muppets and create a public service announcement about cystic fibrosis. I know the Muppets could help promote our cause by reach out to people all over the world I'm not the only one who thinks this is a great idea."

Sooo how can you help make Josh his dream a reality?!

• Visit the Moganko For CF website to watch the Moganko videos, hear brand new and original music, and find information about great CF organizations.

• Join the "Moganko For Cystic Fibrosis Awareness" Facebook Fanpage <---- PLEASE JOIN!!!! =D • Share this project everyone you know. Retweet in Twitter using #moganko. If you only want to do one thing - JOIN THE MOGANKO FOR CYSTIC FIBROSIS AWARENESS facebook page!

Share This project with EVERYONE you know!! Retweet in Twitter using #moganko

Friends - this can WORK with your help!!

Why is this important to me? Good question!

1) As you know, and as I've said, my husband Spencer had Cystic Fibrosis. Josh and Moganko were a huge inspiration for Spencer. He always mentioned how much Josh inspired him to be more compliant and realize he was MORE than CF!

2) Moganko has helped so many young kids strive to keep up with their treatments and therapies which in turn keeps them healthy. As some of you have heard there is, what I like to call, a miracle drug called Kalydeco waiting to be FDA approved. This DRASTICALLY improves the lung function and over all well being of those living with CF. The healthier they are before this drug gets approved, the healthier they will remain after they start taking this medication. THESE VIDEOS REALLY HELP KIDS! I really want to see the word get spread!

3) I want more awareness brought to CF! It affects such a large number of individuals and more attention needs to be brought to help us make CF stand for CURE FOUND. By bringing the Muppets into this, we can in turn create a HUGE awareness project for Cystic Fibrosis!!! The more money can be raised to help cure CF!

As I've said - WE CAN'T DO THIS WITHOUT YOUR HELP! I need you ALL to log on to Facebook, go to the Moganko For Cystic Fibrosis Awareness Fanpage and "Like" it! Then Share it will all of your friends and encourage them to do the same! Also please, please check out www.mogankoforcf.org to learn more about this project!

Feel free to blog about it, talk about it at your family dinners, set it as your profile picture - ANYTHING you can do to help Josh and Moganko out! =) It would really mean a lot to me. Thanks Friends!!!

And Josh - you rock! You're an amazing and extraordinary guy! Spencer REALLY looked up to you and loved, loved, loved what you do! <3

-Nikki

Thankful Thursday

Haven't posted in awhile due to my life being completely uprooted by my husbands death, packing, moving, unpacking, and trying to settle back into life in Kansas with my family. Change is never easy.... transitioning isn't the easiest. But so far it hasn't been too bad. I think the worse days are when we don't have anything planned and I just kind of sit around, bored, not knowing what to do.
I'm trying to make a short list of things I want to accomplish while I am taking a break from school, grieving, healing, and enjoying my family; that way, when I'm having a rough day or just don't know what to do I can through myself into these "projects"
1) Get better at the piano - I want to learn the bottom hand much better, and I would like to be able to read sheet music much quicker than I do.
2) Finish our wedding things. I still need to put together a wedding album/scrapbook, put together our guest book, print out our guestbook pics, and order prints - among other things
3) Get into family history. No one really has picked up our family history for many many many years and I don't want anything to get lost. I really don't know anything about our family history so I'm going to spend time with the grandparents, aunts, uncles, and parents and start recording.

I also want to do some traveling this summer. I'm going to try to get a job here (good luck with that) to give me a distraction and so that I can continue to pay off a few thing - Hoping to save up a bunch so that I can make a trip to Philly this summer to spend awhile with my brother-in-law Isaac. I also would love to go and meet some of the CF Wives that I have gotten to know online so well. Really want to meet Kelly Drabant and her husband and daughter! Kelly has been such a huge support to me through the trails I went through these last 3 months. She's one amazing lady! Her husband is currently going through the process to be listed for a double lung and liver transplant!!! I am so excited for them as this is a new lease on life for their family =) If you would like to help Kelly and her husband, William out visit: http://www.cotaforwilliamjd.com/ and donate or sign their guestbook to give them some encouragement!

So now for the topic of my post - Thankful Thursday.
Amidst everything that's going on - I know there are things to be thankful for. Sometimes I just need to dig deep to find them

I'm thankful to be surrounded by my family. If I wouldn't be around them I would be having a very, very difficult time.

I'm so thankful for my friends and the love and support I've been receiving from everyone. It's what gets me through!

Even though I hate that Spencer is gone and I am feeling lost without him, I'm thankful he's no longer suffering. I'm so happy he can BREATHE without a struggle. I'm happy he can now watch over me and help guide me.

I'm thankful that I am ALIVE and doing well and that I can celebrate another beautiful year here on this Earth. Happy birthday to me!


=)

Just some thoughts....

This week I have started multiple blog posts but I've never actually posted any of them. It's been really hard to wrap my mind around everything that has been happening. I have been doing a lot of writing in a personal blog that I started and so most posts go there.

It's been a whirl wind of emotions and it can change with the snap of a finger.

I just wanted to kind of type out my feelings tonight. I think I have ultimately accepted, as much as one will be able to, that Spencer is nearing his last few days and that he will be dying soon. I've had a couple moments today that I had a hard time consoling myself, but I think those moments were needed. I needed to get my feelings out and stop staying so dang strong. Thankfully I was able to cuddle up right next to Spencer on the bed for about an hour and cry, tell him how much I love him, and pray with him. It was really nice to be able to do that. No worries about anyone coming in. Just our time. It's been nice having minimal visitors today. I can tell i've been needing this time, as I knew.

I was really happy when Spencer woke up enough to converse during his bath and trach care. And then I was very, very thankful that he stayed awake long enough to have a conversation with me. It meant so much. We didn't talk about much - and basically talked about the task at hand. But just a conversation is all I needed. I've told him countless times things that I need him to hear from me. How much I love him, how proud I am of him, the difference he's made... etc etc etc. He's probably tired of hearing it ;-) We've had some very special conversations and of course I wish it didn't all have to end.

I'm trying so hard to comfort myself in the fact that I WILL get to see him again. At some point we will be reunited and love & live for all eternity. It isn't goodbye at all. I will see him again. I also know that he will be with me. In the moments we've shared he's promised me that.

I'm have a very strange feeling. I just feel at peace with the situation. Of course I don't WANT this to happen, and I am going to be absolutely even more heart broken than I already am when he passes away... but I just feel okay with it. I know it has to happen at some point, with that point being pretty soon. I don't want to see him in pain anymore. I don't want to see him continue to fight to breathe. It just hurts me to see him that way and I want to go on with my life remembering him how we all know him. The loving, fun, kind, etc etc etc Spencer that we all know and LOVE. A piece of me will always be missing. He holds my heart. I will miss SO many things about him, about our relationship, about our love.... but something is telling me that everything will be okay. Things will work out.

It's pretty hard for me to see other people come into the room and break down. To be upset. I know they are just now seeing him and accepting things. Learning and understanding what really is going to happen. Saying goodbye... But it's kind of different to see everyone crying when I'm not. When I'm the one being strong. I understand why though, but it's just kind of weird....

The part that I am really scared of and I don't think I can handle is what happens after. The funeral.... The viewing... the planning. I don't want to see him dead. I want to see him alive. Remember him alive. I know I will need the closure... but the thought of seeing him when he's gone is really hurting me. That's NOT how I want to remember him. I'm so scared he won't look like the Spencer I know and remember. I am having a really hard time thinking about I guess just everyone else. I know this is hard on so many people and it is just my nature to care about everyone. I don't want to see people upset. I don't want to see other people hurting. I just want to remember Spencer how he was. The life that he had. I want a CELEBRATION OF LIFE not a mourning of death type thing.

I want everyone to wear something red to his funeral <3 Whether it be a red shirt, bracelet, necklace, shoes... Just something red. It's his favorite color and I want it to be bright... not gloomy with black.

Of course I'm scared and worried about what life will be like without him. I'm terrified of the grieving process. In a way I've already started it, and did awhile ago. I've known this was going to happen from day one. This was inevitable. I didn't know how it would happen or when... but I know I would lose him some day. When he was admitted into the ICU 3 months ago, I had a feeling that might be the last time I saw him. But it really hit me about 2-3 weeks ago that I just didn't think he was going to get any better. Of course I was holding out hope and really trying to be positive about everything. But I just had a feeling things weren't going in the right direction - probably when he got that nasty lung infection. =/ Spencer told me a few days ago that he knew about a week before we were told that there wasn't anything they could do that he just knew he was nearing his time. He said he had a lot of time to think and pray about everything and just knew that it was probably going to happen soon. He was right. He knew. I'm glad he was able to prepare himself, though.

I just needed to get some of my thoughts out. Not sure what the next step will be. We're just going to continue to keep him comfortable tonight and talk about things tomorrow morning. We can move at the pace that we want. There is no rush for anything. It's really hard because of the fact that he is on life support... His body could keep fighting for a pretty long time. It isn't as simple as him "just passing away". We have to make the choice if we want his body to tell us when it's ready to go... or to get him as comfortable as possible, surround him with love, and reassure him that it will be okay, and then to disconnect the ventilator and let his body do the rest. It's a pretty tough situation to be able to/burdened to take the situation into your own hands. Honestly though, ultimately it's up to our Heavenly Father. It's in His hands. He will take him when He is ready for him and He will help guide us along the way. <3 <3

My heart is heavy. . . .

Wow. I can't even begin to sort through my emotions. I just need to write.... Write whatever I feel. What a roller coaster ride. Everything is moving to fast. I want to shout at time to just "Slow down!" I want to yell at the doctors and say, "Please, slow down!" But nothing is going to slow down. It's all going to happen at the pace it is meant to happen; any amount of time is going to be too fast.

I had an absolutely horrible night last night. I could not sleep. I would lay down, close my eyes, and I wouldn't try to think about anything. As far as I knew i wasn't thinking about anything. But then all of a sudden a whirl wind of emotions swept over me about 3-4 minutes after closing my eyes and I would just start sobbing. Uncontrollable urges to just cry. I was up and down and up and back down until about 2:00 am. I finally found Spencer's blanket and the stuffed frog he gave me, I wrapped myself in it and drifted off to sleep though it was hard. I cried myself to sleep. I was just too exhausted to remain awake.

My heart and my body are so, so broken. We haven't even made a decision about what to do yet and I'm a mess. Just the aspect that we are having to think about it at all is absolutely horrible. No one should have to go through a loss like this. No one. It's all so unreal. I KNOW I haven't felt the full extent of what is happening yet - though I feel like I have. I just know i'm going to continue to feel worse. I am experiencing an absolutely unbearable feeling of pain and being broken that is just rushing through my body, mind, heart, and soul. When I'm not at the hospital I am anxious constantly. A knot builds up in my stomach, I feel completely sick like I'm going to throw up, and then a knot builds up in my throat and the tears start to flow. I won't even be thinking about the situation necessarily. My mind will be blank... but the thought is always there. I am losing my best friend.

I have so many moments where I want to take comfort in our Heavenly Father. I want to surround myself in Him. Pray to Him, ask Him, meditate with Him. And briefly I feel a sense of peace that comes over me... but as quickly as it comes it goes away with feelings of anger and sadness that just overcome everything else. It's back and forth constantly. So many feelings.

It is so very hard to sit here, watching Spencer sleep and fighting for every single breath he takes. I am in awe of him. He is my hero. I wish I could take all the hurt and pain away from him. I wish it could be me... any one else but him. I found the love of my life and I'm not ready to let go. 6 months married to him and 3 to 4 of those months were spent in the hospital. It's so incredibly painful. We had so many plans for our future... All things we aren't going to get to experience together. I'm just so thankful for the time we did have together, even though it was short.

Everyone says this... But I want to go back and do so many things differently. I didn't want to ever be in a situation that I would say that, but I think that NO MATTER how you live your life, you will always wish something at some point in time would have been done differently.

All I have known the entire time I have lived in Utah is being with Spencer, caring for Spencer, making plans with and around Spencer. There is NO part of me that can imagine what it's going to be life not having the privilege to do that anymore. Taking care of Spencer has always been so hard. I had my good moments and bad moments; but it has been teaching me so much about myself. It's been an absolute blessing and privilege to be able to care for him. To be with him in his time of need, to be able to love him unconditionally. When I would think of things 3-5 years from now I always imagined it with Spencer. Everyone imagines it with their loved ones. It's a heavy blow when all of a sudden everything changes and you realize that in 3-5 years you won't have them around to spend time with.

We just went to bed one night... planning to do so many things the next day. Doctors appointments, going to the bank to merge our accounts, going to social security to change my name, going out to dinner and doing something FUN in Salt Lake together since we'd been in the hospital so much.... and of course we wake up the next morning with our lives completely flipped upside down. No warning. Completely changed forever.

We went through these last 3 months thinking something could be done. Always hoping and praying that a transplant would be possible. searching and searching for answers to help Spencer get better and stronger so that he could have a transplant. So he could live a new life. So many questions... so many roadblocks... so, so many set backs... I just didn't think that he would get to the point that his body just decided to give up. It's the hardest thing, I'm sure as I am not IN this situation myself, when your body gives up but your mind and spirit want to continue fighting. It's just not fair. In absolutely no aspect is this disease fair.

This year as been especially hard on the CF community. I have grown close to so many CFers since Spencer has gotten sick and I have seen the true colors and the ugliness that this disease is. I've seen so many CFers who have been mostly healthy get very ill and hospitalized much more frequently than they are used to. I've heard of far too many that have passed away this year. When we were in the MICU, we were there during two CFers final days. It was so hard to see the families grieve the loss, knowing that I would be facing the same thing at some point. Not only has our clinic lost so many, I know there have been many losses in the CF community as a whole. One life is just too many and it pains me to know that Spencer is not going to be an exception. Even if transplant was possible this was inevitable. It's the disease.... It's what happens.

I just don't know how to handle this situation. No one knows how. You just go through it like you're in someones else's shoes looking in. You take things as they come... You cry, you scream, you feel the most agonizing pain one can feel - a truly broken heart. You wonder how life could possibly continue on when you're losing the one you love.

But the world keeps spinning on around you.... taking no notice to the loss that you're feeling.

=(

My mind is in a haze. I'm shaking. I'm on the verge of tears. Spencer is just getting worse. Every day seems a little worse than the last. I don't know what to do. I just have that feeling that he's not going to get better. I know that no one can ever know what's going to happen. But I'm so scared. I'm so afraid I'm losing him. I'm not ready for this. I'm never going to be ready for this.

My heart is just broken. Shattered. This isn't fair and I don't understand it. I have no idea what possible good could come out of losing your husband, your best friend, the one you love the most.

I have that pit in my stomach that this is it. There isn't going to be a transplant. He's entirely too sick right now. I can't even imagine things without him. My life as been dedicated to him for the past 3 years. We've only been married 6 months... 3 months straight he's been in the hospital... and if you combine times between getting married and where we are now - I'm sure it's been 4 months total he's been in here. I feel like he DESERVES another shot at life. Why on Earth does he have to go? I'm not ready to lose him. I'm not ready for him to die.

I don't know what to do. I don't know what to think. Don't know how to act. I'm just a mess. I'm so terrified and completely pissed off. I'm hurt, upset.... broken. I want him to get better. I want to believe he's going to get better - but I can't have a false sense of hope. I also need to be realistic about the situation.

I just don't know how I'm supposed to do this. How I'm supposed to continue on. How I am supposed to bear the pain of losing him. I don't feel strong enough to do this.

I'm falling apart......

I'm worried.

Arrg. I really don't like this unit. Not a huge fan of the staff - there's only a couple three that I actually like. Usually by now I have gotten to know the staff better on the unit Spencer is on, but this time I haven't connected with anyone. I know some of it is probably a combination of being so sick of being here and annoyed with everything - but a lot of it is how they handle things on this floor.

They never call me when something is going on with Spencer. Didn't call me when he was bleeding, didn't call me when he needed an embolization, didn't call me after the embolization was done. I have had to call myself to get the information I'm looking for. Spencer has even asked the nurse to call me and she didn't. She gave me the reason of, "sorry I was just so busy with three patients I couldn't get away". Well I'm sorry but I think I have every right to know when something big is going on with my husband. It only takes you 3-5 minutes to give me a call. Have someone cover you or have the doctor call me. I don't appreciate being out of the loop.

I've been here for about an hour now and I haven't seen his nurse. About 5-10 minutes ago I asked to speak to her. I'm sure she's on her lunch. Not to mention it's really not my most favorite nurse who's taking care of him today. Lets just say she *really* likes to complain. =/

I am going to have her page Dr. Liou, one of the CF doctors. He tells me like it is and doesn't usually hold things back from me like the other doctors do. I need to speak with a doc asap. I am pretty worried. Things just really suddenly got bad. Of course I don't know how long his Co2 levels have been high - but it all seemed to happen suddenly yesterday. His vent settings were at 16/5 and now they are at 26/5. They really didn't want to have to go up to 26 because the higher his pip is the bigger the risk of his lung expanding too much that it will pop a hole in it which would collaps it. =/ So they really don't want to go up any more. His Co2 levels really aren't going down - they are still hanging around in the 90's. His pH is a little low but not too bad. No one wants to give me the actual number. Something isn't right and I'm scared.

I am getting really frustrated with getting information from the staff here. No one is straight with me and I don't feel like I deserve that. I've been dealing with this for 3 years now and this specific situation almost 3 months. I think I can understand what everything means. I ask what his Co2s are and they just say "they are up, pretty high" so I ask what they are and they kind of give me a blank stare and then tell me the number and explain, again, that it's really high. Then I ask what his pH is and they say "the same, they are getting higher though" and so I reply.. ok what is his pH? So they either say that they aren't sure or they give me the number and continue to tell me what's normal etc. These are the same people that I talk to every day. You think they'd get the point that I want to know the specifics and that I understand what they mean. I feel like when it comes to the end of the day they get that I want to know everything and are upfront with me.. but then shift change I have to start ALL over again - which is REALLY frustrating to me. We've been in this unit over a month - you'd think they'd start getting the point. Ahhhhhh.

They also put Spencer back on a strict NPO diet >.< I'm not mad that they did this - I'm annoyed that they keep changing it!!! One doctor said he was aspirating and put him NPO - the next doctor said he was okay to eat and drink..... now they are saying he's aspirating again and put him NPO. If you think he's aspirating then please DON'T put him back on a normal diet!!!!! Communication is NOT happening between teams right now and it's not okay!!!

I just don't even know what to think. I am really really concerned. I don't want anything to happen =( Things are going in the opposite way that they are supposed to and it terrifies me. I just want him better - as always. I'm afraid things are just going to continue to decline. Of course I don't know this but i just have that feeling. I'm afraid his lungs are just giving up =( Gosh I really don't want to say that.

I don't know what else to say. I'm just going through the motions today... Doubt I'm going to get many answers until Monday as I just found out Dr. Liou is out of the state until then. The pulmonary team isn't the best with communication and letting me know whats happening. As long as Spence hangs in there until Monday I guess I'll survive.

I'm asking for so many prayers. For not only him but myself - I'm really struggling. I need strength to get through this and support.