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.

Rambling...

Ok ok - so I get why people will say "things will get better. I know they will". It's out of optimism, support, and care. They need something to say so somehow it will make things better... right?

I'm sorry but telling us that You know Spencer is going to get better and everything will get better is really starting to bother me. It doesn't make me mad... it just is kind of one of those small annoyances. It's one of those phrases that people say to help support someone but they really don't get the weight of their words unless they've actually been in that position and realize what those words really mean to the sick patient and caregiver.

Telling us it will get better is just like telling a terminally ill cancer patient who they can't do anything else for that it will all get better and not to worry.

There isn't a difference. You're telling a terminally ill, end stage, Cystic Fibrosis patient who's only chance of survival is a double lung transplant which, by the way, isn't at all guaranteed and who's not even yet been evaluated that things are going to get better. That you know they are going to get better. No one know's he's going to get better, guys.

It's easy to say these things.... It's easy to just feel like you should say something and so you don't actually think before saying it.

All I'm asking is that you truly think about the situation and don't speculate before you say something. I'm not trying to be rude or ungrateful... I'm just trying to tell it as it is. As I feel it. I'm entitled to my opinion.

Now that i've gotten that off of my chest... On to other things.

This week has been hard - just like any of the rest of them. I had a COMPLETE break down Monday evening. It was horrible. I'm just to the point where I didn't know where to turn anymore and I just can't see the light at the end of the tunnel. I've since gotten better since Monday evening - but I'm still having several of the same feelings. It's just not as overwhelming.

It's really hard to sit here and watch my best friend fight to breathe. To not even be able to be awake longer than 1-2 minutes at a time. Sure it's hard on him - but it's equally as hard on me. Possibly even harder.

At first I was optimistic, hopeful, I knew things would get better. But it's been almost 3 months now and it's getting harder and harder to see the end in sight. Things keep looking less hopeful as we go along. I see him getting more and more weak after putting in so much effort to regain some of his strength. I know he's sick with an infection right now - but it completely takes him out of commission and the next lung infection could be the last. We never know how things are going to go.

I am still trying to be hopeful that he'll be able to get new lungs. Sure most often I am very doubtful because I see the condition he is in and I know all of the facts... the odds... But just the fact that I can still see the possibility of him getting lungs... even if it's just for a moment, just a second... that's the hope that i'm holding onto. As long as I can still see that goal....

The holidays are really hard this year. I want them to be so enjoyable and more... But It's super hard on me because I am so torn. I want to and need to be with Spencer. It could be our last Christmas together... But I really want to be around my family. But there is no one I'm leaving Spence here by himself.

I am going to be here with Spencer on Christmas. And I am trying to think of every way possible to make it such a memorable Christmas. We have been blessed to have some 'extra' money since I am babysitting a little bit and since we are finally getting the SSI that we are supposed to be. The last 2 months I have also stuck a little bit back into savings... I've decided I'm going to use it to make Christmas memorable. Wonderful. Spectacular. I think we deserve it. If we can't do anything else, then we deserve to treat ourselves. If this is going to be the last holiday we spend together... it's going to be good. And I want to know i've tried my best to make it that way.

It's just been hard because I had so many thoughts and ideas that we could do together this Christmas.

We both really wanted to go see the lights at Temple square... We've been wanting to do that for 4 years now... Never have gotten to because he's always been sick. We wanted to take one of the carriage rides around temple square on the horses. (That's originally how he was going to propose to me... until I figured it out haha) We're finally in a place of our own and so I was really looking forward to putting up a Christmas tree - decorating... Making our house festive.... I'm still going to try to do this at the hospital. But it's going to be VERY downscaled and he can't help me. I wanted to Christmas shop together. Luckily we got to do that together last year... But still.

Just things like that that we are going to miss our on this year. Of course I hope next year we'll be able to. Oh the things people take for granted.

Anyway... I just feel like i'm rambling... (I am!) Need to put together the rest of the photobook of our wedding pics and put together Christmas cards. That's just me thoughts for the day, I guess!

My two cents for the day......

I want to be home. I don't want to be home. I want to be at the hospital. I don't want to be at the hospital. There is nothing for me at home but a messy house that just needs to be cleaned. No one to come home to - no one to talk to. No one to do anything with. No motivation to clean, not even a desire to clean - maybe the thought when I'm at the hospital to clean sounds good, but once I get home and notion goes straight out the window.

There's not too much at the hospital for me either. I get to sit here and watch Spencer sleep for 10 hours a day with maybe 20 minutes at a time where he's awake and we tend to just stare at the blank wall anymore. This is all we've known for the last 2 months - the conversation has run dry. There is nothing new to discuss. We're sick of doing the same things every single day in and out. What else can you do when the one you love is basically bed bound and feeling sick 24/7. So I sit here. Because I don't want to be at home. I don't want to leave Spencer here alone.
We very rarely get visitors, but that's no surprise. Never really have gotten visitors. Guess people don't really understand that Spencer is dying and it's only a matter of time. One can always hope that he'll get new lungs... One can pray that's the case, but we're never ever going to be guaranteed. Even if he gets on the transplant list - it's not guaranteed it'll happen. People aren't grasping that the time to Spend with Spence is now - not later. There might not be a later. I understand it - I know our time is short, transplant or not. I'm here every day.. but I'm getting tired. Weak. My courage and strength is fading quickly every single day. Every day I'm here I continue to feel like I just can't do it today. That today is going to be the day I just kind of "quit". Quite being positive, quite being optimistic. But then, somehow, by some miracle I pull through. No idea how it happens. I look back on the previous day - NO IDEA how I ever made it through considering all the emotions I went through.

Everyone calls me so strong - well thanks... but I sure don't feel like it. You don't know what goes inside of my head... what I do when I'm by myself. If you knew - strong wouldn't be the word to describe me. Maybe once - but not to much anymore.

But you know... I really don't want to be at the hospital anyway. I hate it here. I hate seeing the same people every single day - who tell me they are sorry for me. Sorry for Spencer. Sorry for our situation. Ok your sorry - but what do I say to that? I'm sorry for us too. it sucks. Be glad you don't have to live it. Sure i'm thankful for the people who are kind to me - but when you see the same people every single day you tend to get bored of it too. I don't want to be at the hospital because I get upset. I get mad at Spencer. Not rational to be upset at him - he can't help it. He'd change it if he could. But I get really mad because he's sleeping all the time. He doesn't talk to me anymore. He says he 'can't talk' because he's on the ventilator. He CAN. I can understand him. But yet he won't say anything to me. So I get angry at him. And I shouldn't. I mean what can he possibly say to me anyway? he does the same thing every day. Doesn't even get the joy of seeing the outdoors. Feeling the crisp breeze. At least I get to do that. I shouldn't complain about it. I don't want to be at the hospital because I'm sick of the food. I've eaten the same food for 2 months. I hate the weight i've gained because of it. I just hate it.

I feel guilty being away because Spencer can't. He can't do the simplest things that we take for granted. He can't even sit up for more than 30 min at a time. It's not fair.

When I found out Spencer's Co2 levels went up again it really hit me hard.

this.

isn't.

going.

to.

get.

better.

It's only going to get WORSE until he gets new lungs. If and When he does - because as I said before, it's not a promise he will. Never ever will be. How the heck am I going to make it through. I just do it because I have to. Because I love him and that's what wives to. I made a promise to him to stick by his side no matter how sick he gets. I WANT to be here for him. It's just hard. The hardest thing I've ever in my life had to do. I don't know how anyone else does it. How am I even supposed to be happy when Spence is dying? WHY is he dying?! Why my husband, who I feel i've barely even gotten to know.

I'm just feeling so damn bitter today. with EVERYONE... EVERYTHING. This isn't fair. And i hate that line. Because i know life isn't fair never has been. But how am I supposed to be ok with him dying. Why now. Why did it have to happen all of a sudden? Why one morning did our life have to be flipped completely upside down with absolutely NO warning. I'm so angry!!!!

This is just one of those days where I feel like I can't deal with this. That I just want to call it quits. Everything else in my life it's been really really hard, curveballs have been thrown - but eventually life has gotten better. Things go back to the way they were - if not all the way, at least somewhat. This is different. I have no control over it. NONE. Spencer can't control it at all. It hurts me to know that he has to have help to breathe. To do the simplest thing ever. Just to breathe. >.<

I just hope today gets better. My mood improves because it's horrible right now. I don't want to be here. I want to go home and curl back up in bed. But I can't even do that. Blahhhh. I feel like I can't do squat.

This is a new life - I have to learn how to live with it.... Cuz it's not going away....

Thanksgiving

Despite having a rough day... I think it's ended well. It's a bummer that Spencer is still not feeling well but at least he's been awake the past hour. I just want to list what I'm thankful for. Anything and everything. No need for explanations unless I feel necessary. I'm just SOOO THANKFUL this year! So here it goes, not in any specific order, Except for number 1!! =)

1) My husband is alive

2) Kalydeco and Vertex... enough said =)

3) Dinner was brought up to us

4) My family

5) My mom and her amazing support

6) Sally and her help with fundraising

7) Not having to take classes with everything else going on

8) Advancements in medicine keeping my husband alive

7) Competent doctors and nurses

8) Charlie Brown Thanksgiving

9) Every little moment with Spence that brings a smile to my face

10) Nacho is home safe and sound

11) Duke is willing to look at Spencer's case

12) Donations and gratitude of friends & family

13) A place to live with minimal rent

14) A car, after everything we went through trying to get it!

15) Social security finally got figured out

16) Insurance is paying for all of transplant as far as we know

17) Warm weather yesterday, allowing my joints a short break

18) A very happy baby every week that I babysit!

19) My friends Christine and Adam and the way they have been helping me out

20) My true friends, in general

21) Spencer gaining weight, finally!

22) Being baptized in this wonderful Church

23) Getting married to the love of my life

24) Mom being able to come out to help me for a week

25) My family being able to spend thanksgiving together, even if it was without me!

26) The strength I've been giving through this troubling time

27) Everything I've learned about myself the past 2 months - good or bad

28) My Crohn's has been stable through all of this craziness!!!

29) Knowing what I want for Christmas - more than a week before (finally!)

30) I have not caught a cold or the flu yet -knock on wood-

31) CF Wives =)

32) Netflix and Hulu for all my late night TV needs lately =)

33) Finally learning how to knit and getting into the crafty mood

34) Understanding. period.

35) One of my friends husbands just got the okay for a double lung/liver transplant!!!!

-Read more about their journey, HERE and you can donate, HERE

36) Optimism, even what little I might have at some points

37) My mother-in-law is doing well in her fight with breast cancer.

38) My Aunt surviving breast cancer

39) The good times with my kitty even tho she's now gone <3

40) The times Spencer and I spent OUT of the hospital this year

41) Meeting new friends this year (Malina and Emily & Jesse)

42) Glad my new friend Emily and her husband are FINALLY out of the hospital enjoying today at HOME after over 4 months of being in here!

43) My faith

44) Being able to finally get a new computer, even if it was with loan money

45) Social Networking.... you all know you're thankful for it too!

46) Laughing late at night with my sister

47) Playing a million omgpop games until my eyes go funny with my sister

48) Fishman ;-)

49) a couple heart-to-heart talks with sister

50) That I have the best little sister ( I think she needs her own category on my thankful list!)

I'm starting to slow down a little so I'll call it quits there =) Was going quickly and steadily until about number 33. I'd say that's a dang good list! So even despite all the crappy things that have happened this year - I think the good things equal or outweigh the bad. That's why it's always good to reflect upon the positives. =)

Happy Thanksgiving everyone. I hope you all had a wonderful day with the ones you love.

Catching up...

I haven't blogged in a bit - I've been pretty overwhelmed to be quite honest with you. I've had so many thoughts going through my mind and I really haven't been able to sort through them all properly.

First off - I am beyond thankful and blessed for the successful Benefit Dinner on Saturday!!! We raised a little over 10K and it came as a complete shock to me. I didn't think we'd raise much over 5k! I am so impressed with everyone who came together to volunteer, donate, and bid. This is a GREAT start to our fundraising efforts and it makes me very optimistic about being able to raise the money we need to be able to get Spencer a new set of lungs. I know it will slow down after awhile, but I hope people continue to donate throughout this process so we can afford everything!!!!

Secondly - I have been slacking on my daily thankful for's.... Not proud to say that but I guess I needed a bit of a break. Trust me, though, I have been thankful. I'm just simply Thankful that Spencer is alive, sitting beside me right now. I can't imagine what my world would be like without him. He's been my hope and my hero for going through all of this. He's had more than a few bumps in the road but making it this far is saying something!!! He's found motivation hard recently and so I'm trying my best to keep him positive and thinking about the goal! NEW LUNGS! Today he did great with PT and I hope he continues. He needs every day of rehab he can get so that he can get stronger! The better he is before transplant - the better he will be after. They said that it was probable that he wouldn't get off the ventilator; not impossible. I am trying to remind him this every single day. I still hold hope for him being able to strengthen up his body and lungs so he can breath on his own!

Thirdly - I am currently thinking of the next fundraiser I want to tackle. I think for the short term I want to create some t-shirts to sell. Firstly we need to create a website, pick out our "official" fundraising colors, create a slogan-type-thing, and get someone to draw us a pretty cool set of lungs ;-) Kind of like a logo. Once we get that all done I will start taking orders for t-shirts and start selling them with all the profits going towards the transplant. So if anyone knows of anyone who would like to make a logo for us let me know! =)

I also really want to start an Etsy shop - I enjoy crafting quite a bit, I just need to spend some time actually doing it! I know it won't make much, but what little does come in will all go towards the transplant as well.

For the next 'big' fundraiser I want to do - I am thinking about one of two things.

1) Geocaching Scavenger Hunt/Poker Run..... not 100% sure how it will work nor any of the details... but I've been pondering about it! Geocaching seems to be big around here and so I thought I'd use that to our advantage.

2) A talent show kind of themed on America's Got Talent. Have some people who could really play it up be the judges, have the audience vote... etc. I haven't thought about this one as much as I can see it taking a lot of work - but it's a possibility!

Also my friend and I are thinking about putting together a virtual run, but we haven't even started thinking about that one yet XD. We're both strung high, her more-so thank me, and aren't ready to tackle something that big yet. Maybe in the near future though!

We are still working on getting COTA set up and once that is set up we really hope others will start doing some fundraisers in their area!!!! Any little amount helps us out!!

That's about all I know for right now. Watching Spence sleep as we speak.... Thinking about headed home for the night!

being 1:30 AM on Saturday I really shouldn't be awake. But I didn't say what I was thankful for for 2 days now and I wanted to catch up. So I'll do 2 right now and then one in the morning/afternoon.

Day 18: Even though I got really frustrated with Spencer, I'm glad and thankful that we are able to talk about things and sort it out. A lot of times I don't think he's listening but I think something that I said really hit him. I am also thankful for the intuition I have to back off when I really should back off of nagging him. I have gotten pretty good at telling when he's really feeling sick and when he's just using it as an excuse. He wasn't doing PT yesterday when they came in and tried to get him to do it. I knew he was feeling kind of bad and he had some pain from the PEG tube.. but I continued to push him. He finally told us that if they came back in an hour he'd work with them. I was really upset that Spencer didn't do it right then and I thought he'd put it off again and not get PT in that day... So I was super upset. But when they came back Spencer very willingly got up, did some stand, did some stretches and did a very fantastic job with rehab. I was proud of him. But I did find out that he has another lung infection so him telling me that he didn't feel good was probably 100% legit as I know how sick he gets to feeling! So today I knew he wasn't feeling well and not to push as much. I'm just glad I can point things out most of the time.

(that was completely rambling.. I don't know if it made since... as I'm typing this out I'm realizing how tired I am!!!!)

Day 19: I'm so thankful for good friends. Tonight I went over to my friend Christine and Adam's house. They have been helping me out so much through all of this. We played a bunch of games with some friends for Christine's birthday and had a blast. I'm so glad I went even though I was inclined to go home early do to the snow. Very happy I stayed =)

It's a Breakdown Kinda Day...

This has been a very hard week for me. And today I can't keep it together any longer. I feel like withering up into a ball and forgetting it all... sleeping... crying... not thinking anything. But the reality of this is that it's never going to go away. This is our life.... There isn't a thing we can do to change it.

Something really hit me hard today... This could very well be the rest of our life together. Being in the hospital, him on a ventilator. I might not ever hear his voice again. May not ever get to experience a day out with him ever again. God how I wish I could just go back and handle things a little bit differently... But don't we all?

The only chance that he'll be able to come back home with me is if he gets a transplant and I'm feeling really discouraged about that right now. Of course we don't know what will happen - we can't... but with him being on the ventilator things are becoming very complicated. Finding a center to accept him is really hard. Duke has told us they would be willing to look at his case, which is good - but that MIGHT be our only option. I still haven't contacted Cleveland or Barnes. Or rather - they haven't contacted me back. Today I was planning on calling them both and getting more information but I can't bring myself to do it. I don't have the strength today. I guess that's ok - but it does really need to get done.

I don't want this to be the rest of our life. Spencer is getting horribly depressed and I don't know how to handle it. I'm just trying to get by every single day - and sometimes I wonder how I do it. I'm feeling so helpless, so dang vulnerable. I don't know what to do =( I couldn't get to sleep last night because I couldn't help but think of our situation.

I know attitude a lot of the time is everything... But please tell me how on Earth one is supposed to have a positive attitude when the magnitude of it all hits you like a train??! I can barely even function today. Every other thing I say tears creep up in my eyes and a big lump forms in my throat. It's one of those days where I just don't feel like I can get through it. It's hard to be by myself but it's really hard to be with people. I can't properly describe how I'm feeling. Even though I'm trying right now it doesn't even scratch the surface will how painfully deep my emotions are today.

This all might sound very cliche... but It's just not fair. This whole situation isn't fair. Why is my husband being stripped away from me? WHY US?! It never seems like we can get a break and now in the blink of an eye our world has been changed and it may not get better. I can't even bare to think of what it will be like without him. I already feel like a huge piece of me is missing and he's not even gone. My best friend can't come home with me at night. I can't hear his voice and so our communication isn't much. He doesn't have much to say to me because the hospital it all he's known for 2 months - and it's really all I've known as well so I have struggles with finding what to talk about. It's just not right that I have to decide when I want to see Spencer during the day and when I want to go home at night. I don't want to leave him at all. I don't want to have to CHOOSE when to see him =( I want to sleep in in the morning, yet I really want to be with Spencer. I want to go home early at night - but I don't want to leave spencer for the evening. I want to be somewhere else doing something for myself during the day sometimes, but I can't stand leaving Spencer here at the hospital by himself. I KNOW he's being taken care of and I KNOW he's ok - but who am I to have fun while he's stuck in a place he can't control... where he doesn't want to be. I'm his partner, his best friend, his wife... and I'm sticking beside him.. It just sucks having to make the choice to be here or at home.

-sigh- I am having such a hard time =( I feel like I'm going to have to start just simply going through the motions again instead of taking charge. Taking charge for me doesn't last long... maybe a day or 2... and then I have to go to taking it one single day at a time. That doesn't get us far. How useful is that?

I'm supposed to be able to make all these phone calls... talk to all these people... update everyone on our situation. I'm supposed to be the strong one so how much good does it do when I just can't do it. =/ Ahhhhhhhhhhhhh......

People ask what they can do - I'm telling you ... please just keep us both, ME INCLUDED, in your thoughts and prayers. I need uplifted. I'm struggling and I need help.... The only help I can think that you all can give me is your positive words and your prayers. Not only for me... but that our situation improves for the better. Just anything for the better....