Sunday, January 27, 2013

To my Cyster Wives

[SideNote: This is not directed towards any specific person in our group. I promise. I just needed to share my thoughts in my own space.]

Can I please just be honest and open with you all??? I wanted to write this in the group when everything started.. but was afraid of posting it and involving myself in everything that was going on.... I have made some incredible friends with all of you CF Wives. You have been there for me through some of my happiest moments and you were there for me with unwavering support during the absolute worse moment of my life when I had to let my husband go Home. 

I can say from first hand experience that CF is hell. I, unfortunately, saw cystic fibrosis to it's very, very bitter end. I saw it drain the life from the man that I love the most. I was with Spencer over 3 years and every single day was a struggle for us. Yes, we had some very, very memorable moments and some incredibly happy times together, and these are times that I cherish, hold on to, and remember the most, but when I look at our relationship as a whole (and a recent dream made me realize this...) we struggled. A LOT. We struggled every minute of every day with CF. I know that some of my posts and my blogs reflected that struggle, but I often tired to stay upbeat. I always tried to put a positive spin on our situation. If I didn't I went crazy. But the reality of it was that from the moment he woke up in the morning to the moment he went to bed was filled with struggling.

Spencer didn't get the luxury of waking up on his own accord in the morning. Our daily routine was the same. He woke up to terrible fits of coughing. As he took off his bi-pap first thing and cleared out the junk in his immediate airways, he struggled to catch his breath as he fished around for his nasal canula to give him 6 liters of oxygen. He sat there with his head in his hands for a minimum of 10 minutes trying to catch his breath. His chest rising and falling with a terrifying intensity. His inhales making his ribs protrude out and his exhales being quick and sudden. He would then stumble to the bathroom, often dizzy from lack of oxygen, and the cycle would start all over again, as walking for the first time in the morning caused the junk that settled in his lungs over night to move around and cause irritation. He'd sit on the toilet coughing so hard he would throw up. He would then have to sit there for another 10 minutes just trying to catch his breath. I'd often get concerned and would have to check on him to make sure he was okay. He would then stumble to his treatment room and start an hours worth of morning treatments -- coughing fits, more throwing up, spiking fevers, and sometimes a panic attack that would strike from being so "air hungry"and so scared because he couldn't catch his breath. This would lead to him de-satting and really not being able to catch his breath. I would have to sit with him (very willingly, as it was the only way that I could help him) and hold him, comfort him, while he concentrated on his breathing and realizing that he was okay. But the time his morning treatments were over he'd have to eat, but often times would be too exhausted from doing so much coughing and heaving so he'd go take a 3 to 4 hour 'nap', and this cycle would start ALL over again. Every single breath was a struggle for Spencer, and I desperately wish that I was exaggerating.

And not only did we struggle with CF,  but we dealt with severe depression, anxiety, CF related liver disease, and kidney disease, too. It all went hand in hand and it was a constant uphill battle. I wish that I could paint a more vivid picture of what a typical week was like in the Riddle house. I look back and I honestly do not know how I did it. How he did it. Every. Single. Day.

And that's where you laides came in. I was feeling at SUCH a loss. Drastic drops in PFTs, transplant talks, and tangible fear of the future that I had was getting to me in the worse of ways. I only knew one other CF wife at the time, who is now one of my best friends, but I desperately wanted to connect with others whose husbands were just as sick as mine. I didn't have anyone to talk to about this. Sadly enough, I know that a lot of you ladies can relate, understand, and were probably nodding your heads when I described a typical morning in quite a short paragraph (compared to what we went through) up above because you have lived that too. You are the only ladies I know who understand how much it SUCKS to be the wife looking over at your husband suffering so much and being so helpless. Completely unable to take that suffering away. 

And then there were the moments of noncompliance with my husband. Most of the time these moments came from the depression and anxiety he had on a daily basis. It all came from feeling so defeated and not seeing a light at the end of the tunnel. Some of it even came from not at all having the ability to do something he was supposed to be doing (ie. the vest because he'd puke; exercising because his sats would drop below 90, HS and Tobi because it'd make him cough to the point of bleeding and/or puking yet again... etc). I would get so frustrated. So angry at him for not taking care of himself. I would beg and plead for him to do what he was supposed to do. I would yell at him. I would give him the silent treatment. I would tell him that I didn't know if we could work if he didn't get his act together. Mostly I would just sob, because it tore me apart at the seams to know that by not doing these things, he was cutting his life short. 

Again, you are some of the only ladies that I know that have been through this exact same thing. I wasn't at all worried about posting my true thoughts about him. I knew you wouldn't judge and criticize me if I needed a place to complain about my husband and what he was (or wasn't) doing. It was a place where I wouldn't need to justify my feelings to anyone because you ladies understood my feelings. I could rant all I wanted to and none of you would think twice about it. You wouldn't shrug off my feelings of hurt, anger, and despair. Most importantly it was my safe place to go to share my frustrations with you.

Our group provided me a place to share my deepest of fears and worries. It gave me a place to connect with each and every one of you on a level that no one else could offer. There was no one else that I could share this stuff with. I was feeling so alone! And I was feeling guilty that I was feeling a certain way at a certain time. As another CF wife posted, I needed to hear the negative. I realized that what I was feeling was okay. I needed to hear the venting, the frustrations, the hospital stays, the struggles because I needed someone to relate to and connect with. 

I chose to not focus and dwell on those bad days. I couldn't. I did the best I could at making our lives positive. But I did need someone there for me when I was having an awful day, as I know many of you need it as well. A lot of what you saw from me may have been negative and harsh... but it was only a fourth of our story. There was so much more.

Now that my husband is gone, I go to the group to share my experiences with those who are in similar situations that I was in. I remain a part of the group because I want to keep updated with each and every one of you. I stay there because I care about you all and I love you all. I also stay there because I know that if I am having a very rough day and I need someone to talk to - you will be there. I know that I can still count on you. 

I sometimes distance myself because topics that are brought up are a little too much for me to bare at the moment. Either because we didn't get to experience it or your situation is way to close to my own. I don't post near as much as I used to, but I still read your posts. 

Our husbands are at varying degrees of health... some are waiting on transplants and barely surviving, and others are thriving and living a life without stopping. That's the beauty of it. I love hearing about your accomplishments and the good things in your life and I don't think that you should feel bad about sharing them with the group. We're not only there to vent about CF and our husbands, but we're there to share in your accomplishments and things that you pride yourself in. I never, ever felt spiteful or jealous because of something positive that has been posted. It lifted my mood up to know that you're blessed enough to have those opportunities with your spouse. That your husband was not at sick as mine. 

Yes there may be a lot of very sick hubbies in our group, but those of you who have husbands who are in pretty good shape.... You balance us out. You are here for us when we need you in our time of need -- and on the opposite side of that, we are here for you when you want to share something awesome. Remember that. It goes both ways.

I know that I value all of your friendships enough to not let a little bickering get between the bond that we have formed. I hope that all of you can feel the same. This too shall pass, ladies. It will, but we have to be willing to move forward, stop bringing this up, and go back to the way things were. This group has not fallen completely apart... it's just had a little stress at the seams. We're stronger and better than that. I know it.

And as my last note, I leave you with this -- Always remember to be blessed with what you have... Do try to take the time out to find positive in your situations because it will carry you through a lot. I promise. I am living proof of that. 

Wednesday, January 23, 2013

Crisis and loneliness

I hurt so deeply inside. I feel abandoned and alone.... and oh-so very lonely. I sometimes wonder what there is for me now that one of the most important things in my life was stripped away. No, scratch that, when my life, this brand new, wonderful, imperfectly perfect life that I started to build for myself, that we were building together, was stripped away from me. I moved to Utah with everything in place. Utah was where I wanted to be. It felt like home. I could see my future clearly. In Utah. Married. Children. A successful career (in goodness knows what, but a career nonetheless). But CF and death stole that, and so much more, away from me. It leaves me feeling broken, incomplete, and lost. 

So lost

The place where I moved to and fell so deeply in love with is now no longer the place it was. It carries a different meaning for me now. It doesn't hold the same place in my heart that it once did. Do I still love it here? Absolutely. It is beautiful and breathtaking. The culture is one I love. But now that I'm in this place alone, and facing the world on my own, head-on, it's somehow different and not quite as bright as it once appeared. Before this place was glistening in color, but now I see it in varying shades of grey; black and white with hints of color dispersed gradually when I feel a sense of hope, and maybe possibly, but very rarely, a feeling of completeness. My perception of this place, and my entire life, has changed, as you can imagine. The value of this place has changed quite significantly for me and it's left me at a cross roads. 

It's left me to deal with a crisis. This crisis mode arose a week ago, and it's something that's hard to shake. I suddenly realize that I don't have a path. I don't have a future planned out. I don't even know the next step in this journey and that is something that I am not used to. It's something I don't handle very well. Because I am a planner. I always have a plan. I suddenly realize, with a new perspective that I no longer know what I want to do.

I no longer know what my goals and aspirations are.

I no longer know where I want to live; right now or in the future.

I don't know if I will ever find "the one" again, because to me, the kind of love that Spencer and I shared was once in a lifetime, something that will never be able to be reclaimed. Could I find a different kind of love? Of course, and chances are at 22 years old I will. But I don't ever want to feel like I'm settling for less, and that's what I'm scared it's going to feel like. You never realize the true capacity that one has to love another human being until you've loved and lost like I have. It's immeasurable. I want to have that again, but it will always be different.

I don't know if I'll ever have children. And that kills me because I desperately want to be a mother. But I don't want to be a mother to just anyones children -- I wanted want to be a mother to his children. We were supposed to have a family together. I was supposed to be able to watch my husband grow a deep connection and bond to his children... to our children. But that was also stripped away from me, and it's something I will never be able to experience, being a parent with my husband.

My future is gone. That future is gone and I have no idea where things are heading. It terrifies me and therefore puts me into crisis mode. Before, I had a rough plan of where things were headed. Yes there were twists and turns along the way, and I knew that some things were not going to turn out as intended, but at least there was something to grasp on to. What do I have to grasp on to now? What is my reward??? 

I have seen firsthand that my future is so incredibly unpredictable. Anything can happen, and maybe that's what scares me the most. I know that even though I plan something out, it can change in the blink of an eye. Nothing is as it seems. Sometimes it just seems as though the world turns against you and shoves you out it's door. You see, nothing is guaranteed. One may say that I will find love again, and one may say I will be the mother that I deserve to be -- but who are you to tell me these things? You told me that a miracle would happen. You told me that he would pull through. Again I ask, you were you to tell me that? It may seem as if my fears of not finding love, or not being a mother, or not finding a successful career path that makes me happy, etc are irrational, and maybe in a sense they are -- but at the same time I think they can be validated.

Comare this to a man going through his midlife crisis. He suddenly realizes that he is at least half way done with his life. He quickly becomes aware of his own mortality. He understands that he is going to die and that life is very, very short. He thinks of all the things that he hasn't done and that he could do before his life ends. Before he comes to terms with his mortality, he enters a period of self doubt and a sense of urgency to accomplish a thousand things.... and thus begins the cycle of a crisis. 

I have seen CF to it's very bitter end. I witnessed, first hand, as death took over a body so full of life. I saw death take the life of a 23 year old man who had so many dreams, goals, and aspirations that he never even got the opportunity to fulfill. It was at that time that I, myself, became fully aware of the preciousness of life. I became aware of not only my husbands mortality, but my own. I suddenly realized that life is short -- so much shorter than one thinks. I realized that, as Spencer did, I have so many things that I have left to do, yet I don't know what these things are -- but I know I have them. It was then that I entered my "midlife" crisis.... only without the 'midlife'. 

And it is just now sneaking up on me after a year of being shoved to the back of my mind. The panic is now coming forward. The realizations that I once had a husband, had the chances of having children with my husband, having a goal for a career and etc are all past tense. I suddenly feel like I'm starting from square one. 

I'm definitely repeating myself and so I'll stop there, but I can't state enough how much all of that scares me. How much it hurts me. It hurts me to the core. I cannot adequately put into words how panicked I feel at the thought of my future dissolving away right before my eyes. 

And, dang it, I'm just so lonely.

Before I went home for Christmas to spend time with my family, I think that feeling lonely was just my new norm. I took that feeling for what it was and was living with it, because what other choice did I have. But then after being around so much, so much, love, compassion, and company from my family and one of my best friends, I came home to a stale, empty, uninviting, and cold house. And I felt the loneliness then more than ever before. And it's stayed with me this whole time. I have never craved a trip back to Kansas so badly than now. 

When I ask myself the question of, "What is here in Utah for me?"..... I almost come up completely empty minded. That's such, such, a hard thing for me to realize, especially since I once had, what I thought to be, so much out here for me. And I've thought about this a lot lately. Two things immediately come to my mind. My 2 friends, The Soderborg's, and my job at ARUP. That's it. Those are two things that I would miss terribly if I were to leave Utah. I don't have many friends here, I don't even know a lot of people. I just don't have much here. As I've stated, when Spence was alive, Utah meant so much more to me. He was here. I guess I just didn't realize that Spencer is what made Utah so special in my heart. [I guess that all ties in to what I was trying to get at up above on why UT is different now ^^^] 

The thought of being in Kansas right now seems so appealing to me. I want to be around my family. I miss them so much. It feels like they are the only thing that I have left. They are so special and so precious to me that it's rough to be so far away. But I cannot just up and move "home" because that's where I feel like I want to be at the present moment. I cannot keep moving back and forth -- I don't have the time or the money. Sometimes you can't always get what your heart desires, obviously. If only I could have the very best of both worlds..... 

Not having someone to come home to after a 10 hour shift at work is really hard. I miss coming in the door, having our little dog right at my feet greeting me, finding my husband on the couch and going over to give him a big hug. I miss not having someone to share my day with. It gets lonely not being able to share a simple conversation with someone. And when you're too tired to start a conversation, it's just nice to have someone to curl up with and share the silence. 

Ever since Sunday morning, I have had an ache deep down in my soul that I cannot even begin to wrap my head around. I feel like I say things like this a lot, but I guess the aches continues to change and intensify with time. But I woke up on Sunday morning recalling a dream that I had about Spencer. It was the most intense dream I have ever had, and probably will ever have in my life. I remember every little detail of it. I feel like it had such a deep meaning to it... it was symbolic of many things and made me relive the whole of our relationship in just a few minutes. It was deeply personal and something that I don't want to delve into right now because of the feelings it brings up and honestly just the length of it.... [I journaled about it that morning and it took up over 4 pages] but at some point I may choose to share parts of it, as I think it has a special meaning that can be taken from it.... But anyway.... 

This dream has left me feeling..... well it's a feeling I can't even describe. I don't even know if there is a feeling. It is like the most deep and intense sense of loneliness that I have ever felt. I was so happy to have dreamt of Spencer and actually remember it, but at the same time it has left me with a lot of questions, a lot of thoughts, and quite a bit of heartache. 

This is a dream, and the feelings that accompany it, that has left me absolutely speechless, but yet I have so much to say. Have you ever felt that way? It is one of the most frustrating things. I can't even wrap my mind around everything that the dream possibly meant, and that also bothers me. I'm kind of just left with this gaping hole... I guess maybe that's the best way to describe it. As if I wasn't feeling incomplete enough, this dream has just compounded that. 

I was hoping that maybe after December was over (because that was one of the toughest months I've had since his death) I would start to pull out of this funk.... but year two, so far, is nothing compared to year one of being widowed. It's been brutal and I'm finding it incredibly hard to deal with. I'm wanting to see a counselor to help me work through some of these intense thought processes I have going on, but I don't know who to contact... I don't even know where to start. 

So for the time being... I guess writing is my therapy. And you all are my support. It's hard for me to reach out to people, but if you have a moment here and there throughout the next few months, and heck, really within the next year... just check up on me. 

Honestly, questions such as "how are you" are difficult for me to answer. But just a "thinking of you" card, txt, or message means a lot to me. Maybe an inspiring quote. A memory of my husband. A care package. Anything like that. Anything to get me to smile because that's what I need. A reason to smile and to know that people still care, even though it's been over a year.

Asking me out to dinner or to go out and do something is GREAT for me as I'm not good at all right now with initiating and setting up things to do even though I know that I need to get out. =/  Your support means a lot to me, and I really need it. Thanks to everyone who's shown it!

Wednesday, January 16, 2013

"Wordless" Wednesday

Winter Storm, Gandolf, in Salt Lake City, Utah
About 11 inches of snow in the mountains and anywhere between 1-2 feet in the valleys

"There is one friend in the life of each of us who seems not a separate person, however dear and beloved, but an expansion, an interpretation, of one's self, the very meaning of one's soul."
I found that someone special and I miss him very much. I hope that someday you can find your special friend, too. 

Monday, January 7, 2013

A Different Glow

For the first time today in over a month I sat down and looked through pictures of Spencer and I. During the holiday season, my birthday, and the anniversary of his death I completely shut off all of my grieving emotions. Dealing with so much in such a short period of time was too much for me to handle and it was a lot easier to just not think about any of it at all. I didn't realize that I was doing this until I went home to KS to visit my family for Christmas. There was a day when I realized I had been completely ignoring all of my feelings. It got to the point where I didn't want to think about him, I didn't want to look at pictures of him, or us, and I didn't want anything to do with that part of my life. It left me feeling terribly guilty and heartbroken that I was firstly able to do that and secondly that I was allowing myself to do that.

But for the first time today as I was looking through pictures of us, new and quite old, I let myself feel every emotion that was bottled up inside. I suddenly missed Spencer with an ache that was so intense. One so deep I couldn't possibly shove it to the side for a rainy day. No... today was going to be my rainy day.

I started out looking at pictures of our wedding day. I looked at them in a different way this time, with a different perspective. The perspective of a young widow who is starting to realize what the full implications are of losing the one you want to spend the rest of your life with. The perspective of the young widow who is heartbroken and grieving her husband over what she no longer has. She sees the future with him no longer in it and weeps.

I looked at him more than I did us. I studied the expressions on his face. The wedding picture that got to me most was this one

I never really studied Spencer's body language and expression before with this picture. I always just laughed at how silly I looked. But in this picture he's so comfortable. He's content, not struggling to breathe. He is more relax than ever. And his smile, though it may not have been a full smile, it's one that shows a deep happiness. He was so ready for our life together. And it kills me that we only got 6 months after becoming man and wife. 6 months.

I then looked through older pictures of us. Ones that I hadn't seen in a very long time. I stumbled upon a photo of myself smiling for the camera shortly after getting engaged.


Look at me. I am so incredibly happy. And I remember being so happy. Overjoyed really about the thought of spending the rest of Spencer's life with him, and if we got a miracle -- the rest of our lives together.

After looking through some more older pictures of the two of us and then going back to more recent ones, I looked at some of the pictures that were taken after Spencer passed away. There aren't a whole lot of me, and the ones I have I'm not too fond of. There is just something different about them. It's like a century of time has passed between the photos "then" and the photos "now". But I couldn't figure out what was so different.

But then it hit me and I let out a sob like I haven't let out in such a long time. One of deep longing and desire for the life that I once had. A life that made me so happy. There was in fact a difference between these pictures, aside from the obvious difference. In every single "then" picture that I look at that includes Spencer or has anything to do with Spencer, whether I was smiling and giddy or if I was tired and showing a half smile, I was happy. I was genuinely very, very happy. I had a glow about me that was radiating. A glow that I had never noticed before. I had this aura about me constantly because I was complete. I was fulfilled. I was so, so in love and so full of love for that man and for the life that I was living. He is and was my better half and completed me 110%. He made me happy. He made me, me.

I look at pictures "now" and I look so different. I don't look sad, but I don't look the same. I do look happy, and I am happy in the pictures that I have taken, but that glow is no longer there. My eyes are dull, my smile faded. I don't have the same zest for life that I had in the "before" and sadly it shows.

I do get excited about things in my life, but nothing like I used to. I get extremely happy about certain things, but it's not the same. I no longer react how I used to react. I'm not able to. It's like when he passed away this little unknown switch went to the neutral, or off, position. The best way I can describe it is that I have been dulled. My life has been dulled by this loss and I haven't realized it until a year later.

I called up my mom over her lunch break and told her of this very heartbreaking understanding that I came do. She told me she has seen it for a long time. And I had wondered that before I even talked to her -- if I can see it now, have others seen it before in the pictures I've posted? I asked her if it had been that obvious; she told me that it isn't that obvious, it's not like I look terrible now and like a completely different person, but she can see the dullness that has now taken over my life. I wonder if it's just in pictures? Have I changed in my personality and day-to-day life as well? Have my close friends and family seen a subtle, or heck, even an obvious change in me since I lost Spencer?

It's amazing what death can suck out of a person. I never thought this would be me. I have read blogs and grief books about this same thing. I have watched movies, TV shows, and books about fictional grieving characters. I have seen this happen in all of them, but for some reason I didn't think that it was actually happening to me. I don't know how or why I missed this detail. It kind of bothers me that I didn't realize it before. How could I have been so naive to think that my life was the same (minus one) that it was before.?It's funny how our bodies and minds do this, play tricks on us so that we don't feel the real emotions until we are ready to feel them. Our bodies and minds make us naive for a distinct reason. Sometimes I am thankful and sometimes it upsets me. But it's something that I cannot control, like most things.

Year two is hard... harder than year one. I expected it, but I didn't expect it like this. I ache all over and so very deep inside. I am empty. I am lonely. I am changed. I miss him more than ever.

I miss my glow. I miss my excitement and zest for life. One day I will get it back, but until then it's something I long for and I cannot wait until I look at a picture of me and rediscover that glow.

Saturday, January 5, 2013

2012 Reflections


Usually I write and post this annual blog at the very end of each year, but unfortunately my computer has been dead and I didn't get a chance to at the end of 2012! I am definitely behind (nearly a week!) but it's never to late to sit down and write. I love reflecting on my year so I'm really looking forward to writing my 2012 Year in Review =)

I feel like every time I start my annual reminiscing-about-the-year-post I always want to start out with, “Wow! What a year it’s been!” But I feel like each year since I’ve started doing this it has been quite the year... Whether it’s been moving, getting engaged, getting married, major health problems, or 5 funerals in year, it never ceases to be an exciting year in some way for me. The life of Nikki is always interesting; at least that’s what I’ve been told. Sometimes I think an uninteresting year would suffice ;-)

2012 started out with a lot of optimism for me, believe it or not. I was more determined than ever to make this a great year, despite the newness of being The Riddle Family, minus one. I had a lot of things I wanted to get accomplished; probably a lot more than was possible in just a year. But my hopes were high. I think mostly I just wanted to keep myself busy. I had a mindset from the very beginning of becoming a widow that Spencer died, I did not. I didn’t want to waste a year just because my husband was gone. To me, it was a reason to live my life more than I ever had before and I really wanted to make Spencer proud of me.

Living at home again was a challenge. It was so nice to be around my family, but it was a big adjustment. My family has a different lifestyle than what Spencer and I had and not to mention I had gotten overly used to the city life. Bird City, KS doesn’t have much to offer in the way of entertainment. But I am so glad that I did move home for a while. The whole reason I moved after Spencer died was so that I could take the time to grieve and even begin to heal. I could be in the comforts of my childhood home with family available any time I needed them.

Shortly after moving home I was offered a babysitting position for the cutest 3 year old I know! This was SUCH a blessing due to the fact that I was worried about finding a job at all and making money. I needed to save up so that I could eventually move back out to Utah and also make some trips in between. I had a great time watching Ash.

We played dress up nearly every day, had bubble tea parties, drew on the sidewalk with chalk; played baseball with Andrew; had a lot of fun in the sun, did tons of arts and crafts.....


All of this among countless other things! Every day was an adventure with her and its one that I really miss! During my very last day watching her and her brother, Andrew, I came to work and found this:

A good luck banner, balloons all over the floor, with a homemade card from both of the kids. Brought tears to my eyes! I've never loved a kiddo as much as I started to love Ash!!

I made a couple of trips to Utah during my time in Kansas. There was a point in time where I felt like I needed to face the reality of Spencer’s death. Even though being home was exactly what I needed, I felt like being in Kansas was escaping my reality. It always felt like I was just taking a vacation. The moment I went back to Utah it seemed like Spencer would be there and we’d reunite again. Since I had taken many trips home to Kansas without Spence during school breaks it was understandable that I felt this way. My first trip back to Utah was a lot of fun and exactly what I needed. I spent my time there at the Soderborg’s house thankfully. I had really missed them and it was so nice to spend a week there! I remember my very first trip up to the hospital since Spence died. I went up there to eat lunch with Christine and we even went up to AIM B to visit for a few minutes. At first it wasn’t bad at all. Actually it really just felt like home. I mean think about it… Spence and I were at the hospital for 2 weeks at a time each and every month for the past 2 years, and then I spent the last 3 months of 2011 sitting in an ICU room with him. It became, instead of my 2nd home, my 1st home. I was definitely comfortable there – a feeling that I didn’t at all expect.

But once we went up to AIM B I got exactly what I needed; the reassurance that this place was no longer my home. Christine went to go and visit one of her friends in the hospital and I was out talking with the nurses and aids. After about 5 minutes they had to go about doing their job and I wasn’t sure which patient room Christine went into. I suddenly felt very, very out of place. Just a few months before I would have been able to go back to Spencer’s room. That was really the moment where things changed for me. Spencer wasn't there anymore and he wasn't coming back. I didn't belong at the hospital anymore. That place that we used to call home together was no longer a home for me.

Within the same trip to Utah, I went to visit Spencer's grave at the Orem City Cemetery for the very first time. I was really nervous about visiting. I had never went to visit a grave before and I didn't know what I was supposed to do or how I was supposed to act. If you think of the stereotypical grieving widow you see them dressed all in back, moving slowly, tears streaming down their face as they arrive at the grave site. And then you picture them hunched over the grave, sobbing uncontrollably. You picture them bringing flowers, belongings, pictures or something of the sort to the grave. But I just didn't feel like that was going to be me. 

Upon arriving to the cemetery I realized that it was very peaceful. It was kind of awkward at first, but I just sat down beside his grave. I didn't do much talking, I didn't cry. Instead I took out the sidewalk chalk and drew around his headstone. Writing whatever came to my mind. 

I have visited Spencer's grave a total of 3 times since he passed away and I have realized that I'm just not a huge fan of visiting the cemetery. His physical body may be there, but he isn't. I don't necessarily get much comfort, as some people do, from visiting his grave. It took me awhile to accept that I don't enjoy going to the cemetery. For awhile I felt like I "had" to for some reason. (probably stereotypes). I can't exactly state why I don't like going, but I've come to accept that it's okay if I don't go. I have to remind myself that Spencer isn't there. He's around me. He's everywhere. I don't have to go to the cemetery to talk to him, to seek comfort from him, to be with him. I have moved on enough to be okay with that, and for that I'm thankful.

At the very beginning of 2012 I started working on a website in memory of Spencer and as a way to spread awareness and education about cystic fibrosis. It took a heck of a lot of time and dedication, but the website, www.riddleofcf.com launched in April and it was a huge success. I was, and am, very proud of myself for following through with this project. 


During the end of spring and very beginning of summer one of my best friends, Emily, flew from San Diego to spend a week with me -- we had a BLAST! We spent a few days in Colorado visting our good friends Molly and Lauren. Unfortunately Molly was pretty sick and on Dialysis, but it was more of a reason to go and visit her. To keep her company and lift her sprits up a little bit. We made some great memories, and even dedicated a day to honoring Spencer's memory. We ordered a specially made cake (THANK YOU Kim and Jake's Cakes!!!), released balloons, wrote on the sidewalk with chalk, and ate a gigantic pizza. We shared many memories and made many more. 


In May I was extremely honored to be asked to go back to Los Angeles and speak at the annual Starlight Children's Foundation gala! Not only did I get to prepare a short speech, but I presented the humanitarian award to Morrison and Foerster, a law firm in LA that is super supportive of Starlight. I had a blast being back in LA, seeing old and familiar faces, and once again being among and mingling with the celebs of Hollywood. My best friend Emily and her wonderful mom got to accompany me that night and I got to see another friend who I rarely see while I was waiting for the event to take place. The night was a huge success and my speech went so well. Did I mention that it was a HUGE honor?!



Right before my big trip to LA, I drove to Salt Lake City again to see my friends and participate in the Great Strides walk for cystic fibrosis. It was such a great experience but it was hard to be there around other CF families, knowing what they are going through. And it was hard not having Spencer there with me -- but it was more motivation to walk! If anything, I was doing it for Spence and for the many friends that I have who are fighting CF every day. I had a very successful fundraising year for the walk! I got more donations than ever before. If I remember correctly I raised over $400 through donations and by selling t-shirts. Hope to at least match, if not top that number for 2013's fundraising!!

This summer I was also asked to be a backstage mom for a local (Cheyenne County in KS) scholarship program called Young Miss. I participated in this program my Junior year of High School and I had a blast and learned so much! I was so happy to come back as a mom =) My 'daughter' was the pervious years Young Miss and so I helped her help the contestants prepare for their big night! Kaitlin was a blast to mentor and I'm so glad I got to know not only her, but the 4 other girls as well! (well 3 if you consider Steph, as I've known her my entire life.)


In late July I decided that it was time to move back to Utah which was a very difficult decision, but it was one that was for the best. I missed Utah; the beauty, the city, my friends. I realized that I had done all the grieving that I could possibly do in Kansas I hit a stand-still and it was time to continue on my path. I wanted to enter into the next stage and I wanted to feel like I was starting to heal. Upon arriving back in Utah, things literally fell into place more perfectly than I could have ever imagined.

Two friends that I met while Spencer was in the hospital offered me their home up in Ogden while they were away for the summer. This was great and perfect as I had time to look for a good place to live and a decent job that would get me by. Shortly after moving back, I applied for multiple positions at ARUP Laboratories knowing in my heart that this was the perfect position for me. Within a month of applying, interviewing, and a little bit of waiting I was hired! My first "real" job! I now work in the Infections Disease Rapid Testing department at ARUP and it is PERFECT! I absolutely love my job and my co-workers.



A week after getting hired I found a very good place to live -- excellent price and a perfect location. Right next to research park, only 3-5 minutes away from where I work! It's a cute little condo.



I live with 2 roommates, who are sisters, and they are super nice. It's really hard living with roommates, but I'm slowly adjusting and trying to accept another persons life style.

After moving back to Utah, between working and sleeping, I tried my best to hang out with friends more and get out and do things. I went to three different concerts and they were so much fun!! The first one was A Capella Stock -- the second year that I went. The groups that performed were AMAZING! I just love the sounds of the human voice, no instruments.

The second one I went to was The Piano Guys concert at Red Butte Gardens and it was amazing! It was a live recording for a PBS show that was aired in December. And if you know me at all, you know how much I LOVE TPG!

I also went to a Train concert with My best friend Christine and Grace. The energy was great and we had such a blast together!


As 2012 wound down I sure didn't! During the first big snow of the year, [over a foot] I had my nieces over for a cookie decorating party. Man those girls are wild, but I had so much fun with them. It's so important to me that I stay a part of their lives and it was a great bonding opportunity. We decorated cookies, played out in the snow, drew their Uncle Michael pictures to send to him on his mission, had hot chocolate, and watched a movie! I think I gave them a sugar high and I'm shocked they didn't throw up from it all. I'm sure they crashed well that night ;-)


Even though 2012 seemed to be a fairly good year for me, it definitely wasn't all rainbows and butterflies, so to speak. I had a lot of rough moments and a lot of expected and unexpected challenges that were thrown my way.

First of all I had to face, for the very first time, all of the significant dates and holidays since Spencer passed -- Spencer's birthday, our anniversary, the anniversary of his death, and more. I handled them with a lot of grace and I tried to honor his memory the very best that I could. They were still difficult, but I got through them with the love of family and friends. Spencer's birthday was a good memory for me. I spent it with my sister after I got off work. We went to the store and picked up a big chocolate cake, kit-kats, skittles, and balloons. We had a balloon release for him, shared memories, and ate a great cake!



Another challenge I faced was loosing 3 more very important people in my life which marked 5 significant losses in one year -- too much for anyone to have to bare. On February 11th, my Grandma Johnson passed away. That was a pretty tough one because it was on the 2 month mark, to the day, of Spencer's passing. (As if the 11th couldn't suck more!!). I then lost my Grandpa Sanders and my Mother-In-Law within one day of each other. I volunteered and had the great honor of writing and presenting my grandpas Eulogy. I got to learn a lot about his life that I didn't previously know -- he was an incredible and very accomplished man. My mother-in-laws funeral was on the same day as my grandpas and so I wasn't able to attend which definitely hurt. But I was able to speak to her over the phone before she passed away and I wrote her a detailed letter telling her all the things I needed to say to her. I was told it brought her to tears. I miss them all so very much.

Loosing so many people in a year presented a huge problem with my grieving. It was hard to grieve one person, let alone 5. I will be on this journey of grief for a very, very long time; and really for the rest of my life. I am starting to notice feelings of grief, for the first time since their deaths, for my MIL and my grandparents. I notice their absence in my life. As the grief for Spencer gets less, the grief for them intensifies. But it's a feeling I am now familiar with and am having an easier time coping with.

When 2012 came to a close I was blind sighted by December coming so quickly. December was a terribly hard month for me, one of the hardest I have had. The anticipation of Spencer's angelversary and the holidays without him was getting the best of me. I had many moments where I just didn't know what to do myself and desperately didn't want to be in my shoes.

But on December 11th I felt a huge brick taken off of my shoulders by the end of the night. We had a wonderful celebration of life for Spencer and it was perfect. Friends and family gathered at his childhood home. We looked through pictures and cards, shared countless memories, signed ornaments in memory of him, listened to They Might Be Giants all night, ate great food, had a balloon release, and watched the video that George put together with all of the pictures of Spencer growing up and into adulthood. It was a beautiful night filled with so much love.






Honestly, when December hit I was terribly depressed about the way that my year had turned out. I didn’t feel like I accomplished enough. I felt like I had SO much left that I wanted and/or needed to get done before 2012 ended and 2013 began. I had the overwhelming feeling that it was as if I didn’t get these things done the moment this year was over, I would have failed in some way, whether that be failing myself, my friends, my family, or Spencer. For some reason I felt like this year had been a waste. I felt empty. I had never ended a year with this feeling before and it bothered me a great deal. So I do what I always do, I spent days talking about it and reflecting about it over and over again. Obviously  as you can see from this ridiculously long blog post, I have had a HUGE year, full of memories, and so many fun things. I have done so, so much in such short amount of time. There is no way that this year was lacking in accomplishments, especially if you consider what I've lost. But I finally came to the conclusion that the reason I felt this way was because I was missing the biggest part of me -- Spencer. He still has that piece of my heart and he always will. Thankfully this feeling subsided about a week after his angelversary, and it's now completely gone after writing this blog post reflecting upon my busy year!

Within the last two weeks of December I was able to go home and visit my family and friends. I had a wonderful Christmas with my family and spent a lot of great quality time with my best friend from High school, Jay. You know you have a true friend when you've been able to keep a close bond through 1 year of Jr. High, 4 years of high school, and 3.5 years being separated during college along with all of the little arguments and things that have come up in between! =) I'm thankful for a friend like him and I really value what we have.

Unfortunately I had to work on Christmas, and even more unfortunately I had to walk to work on Christmas due to the battery on my car being dead (It was freeezing!!!), but I was able to ring in the new year with a co-worker and new friend, Mary. We went to Village Inn together, had a great meal, laughed a whole bunch, and rang in the new year there. Shortly after midnight hit we were both overly ready to head home and go to bed.

All-in-All 2012 was a very successful and busy year!!! I learned A LOT about myself and so many life lessons within the year. It was jam packed with new memories, experiences, and emotions. I just hope that 2013 can match it, or even top it! I'm sure ready, so bring it on =)