Tuesday, February 21, 2012

Starlight Gala - Day 21

A photo of something that makes you happy - Day 21

This is another really hard one to pick out just one picture!! Nearly all of my pictures make me super happy to look at! They all hold great memories.

I quickly thumbed through my facebook pics that I've uploaded (hundreds!!) and I smiled at great memories of them all! One of the events in my life that really makes me happy when I think about it is when Spencer and I spoke at the Starlight Gala and did a short skit with our great friend, Emily.

Because this was one of the first things that popped in my mind (aside from our wedding!) I decided to upload one of the pics from the Gala!!!

This is Emily, myself, and Spencer eating one of the AMAZING ka-bobs that they were serving. Never a dull moment with the three of us! =)

Saturday, February 18, 2012

Getting Real...

Can we please just be real for a little bit? It gets exhausting putting up rose colored statuses and posting positive blogs all of the time. But with this blog post I'm going to get real... After all, it is MY blogs.. MY thoughts... MY opinions. If you don't like it then nothing is telling you to continue to read, you know? I shouldn't always have to feel like I need to protect everyone else from my feelings, though for some reason it's been hard to post how I am truly feeling. I don't want to feel judged. I don't want people to know how much I am hurting. I don't want all of this unsolicited advice and this is mainly why I haven't been posting. That and opinions that really aren't necessary. Opinions that hurt my soul.
I appreciate the comments and well wishes, but I don't appreciate people trying to tell me how they think I should be feeling, or what they think I should be doing. But dang it, I don't feel like I have many people to turn to. Who do I talk to? I just don't feel like there are very many people in my immediate circle who understand how I am feeling. No one gets it spot on, some do better than others. I just need an outlet for myself, and blogging is that outlet. I appreciate more than ever when people read my blog and make comments. I've been writing a lot on my personal blog, and yes it does help me - but it doesn't have the same effect. It's not public and so people cannot comment on it. I just feel so alone. I love reading the comments on my blog. It makes me realize that there are more people out there that do understand at least a portion of what I am going through. I need that kind of support. It's helpful for me.

I just want to say that I am probably not doing as well as many people think I am. Yes, I do have really good moments, but don't we all... But right now it seems like even in some of those good moments I am struggling in some way.. In fact these last 3 weeks I have been struggling, not necessarily outwardly... but very much internally... Internally it has been a battle for the last three weeks with how I am feeling, my thoughts, my emotions, my actions. My day to day life and tasks have been an internal struggle.... But I tend to never let it show... I keep this strong and positive facade nearly all of the time. I have been strong for too long, and I don't know how to let down that wall. In all of my life with Spencer I have had to be strong and supportive; now that I don't have to anymore, I feel so lost. I don't know what to do with myself. I don't know how to properly let out my emotions and my feelings. And my emotions are just so complicated. They are ones I have never in my life felt before. And it's a mixture of about a dozen different feelings. I can't sort through them. I can't get them out of my mind and down on paper, or through my mouth into words. It's this fog of thoughts and feelings that cannot unwind. It's so unlike me to not be able to express how I am feeling. When I try - I don't even touch the surface.

Part of me wants to be able to let it all out; but another part of me is scared. I don't want to feel the pain, heartache, and hurt. I don't want everyone to know how badly I hurt so therefore I rarely talk about it... I guess that's the part that I need to be able to overcome. To not be so scared of my own feelings. I know that it's okay to let it out. I know that it's healthy to be able to let it out - but I can't for some reason. It's been really hard. =/

I've been feeling very lonely. I don't think I need to go into much detail about that. But I see the same faces every single day. And at the end of the day I don't have that special someone to turn to. When i'm hurting and when I'm upset... when I'm needing someone I don't have him anymore. I just want his arms wrapped around me telling me that everything is going to be okay and giving me some unique way to look at the situation and help me through it. Giving me the loving advice he always did. When I was at the funeral on Thursday it really hit me how much I miss his presence. I felt so alone. No one to turn to. My mom was busy with family and making sure that my dad was okay. I didn't want to take up all of her attention because it shouldn't be focused on just me - other people have problems besides myself. I just miss the person that I could always turn to, without a doubt, no matter the situation. He was always, always there.
I miss having someone to share EVERYTHING with. I felt so comfortable talking to Spencer about anything. I find that there are so many little things I just really wish that I could go run and tell him. To laugh with him about. But alas I no longer have that.
None of my friends are here either. That's another part of feeling horribly lonely. I am in my house all day, or I am working watching Ashlyn. I don't see many faces. My High school friends are off at college, and honestly - even if they were home, we are all in different chapters of our lives. It's so hard for each other to grasp what the other person is going through. It's hard to relate anymore. I don't have any of my friends from Utah. I miss them all terribly. But then again - I'm sadly moved on to somewhat of a different chapter in my life. I'm a widow. Few, if any, of my friends can relate. (friends in person, that is.) I was so happy because I met so many friends who were married couples and I had that in common with them... but now I am not married. It's just different. I'm not saying they aren't my friends anymore, no not saying that at all... but it's just different and it's hard for me to know what to talk about.

Spencer's death has consumed me, it seems. Anything I talk about somehow is related to Spencer. I find myself ALWAYS wanting to bring Spencer's name up whenever I can. My life for the past 2 months has been living a life without my Pea. It's hard to think of anything else. And so my conversations with others aren't very fulfilling. What do I talk about? I haven't done anything. I sit at home on the computer. I write. I read. I play with my dog. I talk with my family. I work. That's it. I haven't done anything else for 2 months. (really, for 5 months now....) It's just hard. I feel like I'm ALWAYS talking about Spencer. Like every other word out of my mouth is about Spencer.
And I think I know why....

[Please know that I know that no one has actually forgotten... But this is how I feel and I'm trying to be as expressive as I possibly can...]

I feel like everyone has forgotten Spencer. Like they have forgotten he's gone. They have forgotten that I have had a very devastating loss in my life very recently. I feel like everyone thinks that because it has been 2 months, for some reason I have continued to move on. No one talks about Spencer any more. I rarely hear is name. I rarely hear stories about Spencer. I feel like everyone has closed that chapter of their lives and have moved on to another one. It's like if I don't say his name, it won't be said. If I don't tell stories of Spencer they will be forgotten. If I don't remember constantly I am going to somehow forget.
And it's not only just talking about Spencer. It's rare that people ask me how I am doing anymore. Not just in a general "how are you doing" question. But asking me how I am with Spencer's death. It's like it's a taboo topic anymore. Before I was geting asked this question left and right. And while yes sometimes it got really old really fast, I was glad that people were thinking about me. But now that the cards have stopped coming, the messages and txts have stopped... the questions have stopped - I feel like people have just forgotten about Spencer and about myself. =/ Here I am thinking about it every single day. Missing him every day of my life. Of course I do though... he was the center of it. My focus. I don't expect to move on after 2 months. It's going to take a VERY long time and I will never actually move on... things will just change... but I hate knowing that other people are seemingly having an easier time with it. (i know that sounds weird.. of course they are going to have an easier time... I'm just jealous, you know...) I want to be able to move on with my life and be happy. I want to be ready to move back to Utah, to start school again, to find a job, to make new friends.

But dang it - I don't know how I am going to do any of that. I can't just go back and resume where I left off. I do not have anything to go back to.. I don't have Spencer to go back to, I don't have our home to go back to... I don't have the hospital to go back to. It's all changed. That chapter in my life is over. I have to be ready to actually start a new chapter before I move back, and right now I'm NOT.
You know I always wondered what it would feel like when I fog and haze from what happened would lift. I wanted it to so that I could get on with the process of grieving and healing. But now that it has lifted and I am seeing the true colors of this situation.. I hate it and I wish I could go back and have the fog there again. =/

I've been feeling at a loss.... of and with everything. I don't even feel like I know who I am sometimes. I question everything. What do I want to do with my life now? WHO AM I?! This is going to take a whole lot of self discovery. I thought I had it all figured out, but I'm not so sure anymore. So much has changed in such a small amount of time.
I have to start all over again... with just about everything. I dread it. I do not want to at all. I don't even know where to begin, you know?

I'm lost =( I don't know where to turn. The thought of my future haunts me. I dont want to think about it, but then again I do. I just don't know what to do with myself.
I'm lost, I'm lonely, I'm hurting.... That about sums it up.

I just think it's important to share that I'm not doing so great. I do try and be optimistic, and I do try to be positive - but I can't be all of the time, and it probably wouldn't hurt me if I would stop trying and actually be pessimistic and negative. Maybe it would help knock some of my walls down. I don't know.

I just wish people would continue to ask me how I am doing with the loss. I want to be able to be honest and open about it as well. I don't want people to ask me how I am because they feel they have to... but because they WANT to and because they truly care. You know I had so many friends pop out of the wood work when I lost Spencer. But now where are they? It's only been 2 months and I feel like everyone has disappeared. Even some of my close friends. =/ it's just really frustrating for me. I don't want to feel alone and I want to feel like people really do care. That's all....

I miss you Spencer. so much. And I love you forever and for all eternity, just like I promised you in my vows. <3

My Blog Name.

The meaning behind your blog name - Day 20

Moving along slowly in my 30 Days of Blogs! But moving on to the next one. So my blog name, It's Simply... Life is really just what it says. I really wanted to have a super creative blog name but nothing was coming to me so I thought about what my blog was going to be about. My blog is about my life with Crohn's disease, being a widow, Cystic Fibrosis, school... etc etc. Its just simply a record of my life =)
And I don't think that my life is anything special!!

Friday, February 17, 2012

How the "I" became "We"

I haven't been blogging as much lately, I realize this. I've been posting a lot in my personal blog, just because I can't seem to get any of my thoughts straight and a lot of those thoughts I don't feel comfortable posting publicly, at least yet. There are more people that read my blog than I realize!

But I saw this post idea from a friends blog and I just feel like talking about Spencer and I and remembering. I love to remember the things that make me so happy. Most all of these questions are worded in such a way that it's intended for the couple who is still.. uhmmm Earthly Together? Interesting way to put it.... but I just want to talk about our relationship =) I've never really shared certain parts of it fully (ie our engagement story?! lol) and I think some people might be interested... enjoy =) [Fair warning... this may get very long!] Annnd this is meant to be a Valentines day post. So I am gong to leave out some things, since we didn't get to celebrate Valentines day; though I will leave the questions on here incase someone else wants to do this too.

How the "I" Became "We"

1. How long have you and your significant other been together?

Spencer and I were friends for, oh I guess I would say about 6 years. We were friends for about 6 months to a year before we started dating. In total, (excluding friendship) through dating, engagement, and marriage we were together about 4.5-5 years! Definitely not long enough, but I'm so thankful that even though we weren't married long, we got those 5 years together.

2. How did you meet? (What's your "love" story?)

Spencer and I met because he had Cystic Fibrosis and I have Crohn's disease. We met on a website for Chronically ill teenagers and their siblings called Starbright World. (SBW for short) I joined back in around 2005 and really became active in 2006 and that's when Spencer and I met! We started talking a lot in SBW chat. One day Spencer whispered me and told me that he had a question to ask me and if it would be okay if he could IM me. I told him that it was fine. I was so anxious to hear this question he had to ask me! We started IMing and talking a little bit and he hadn't brought any kinds of questions up and so I asked him what he wanted to know. He then proceeded to tell me that, "I honestly don't remember what I wanted to ask you." Mhmmm. Sure Spencer! I didn't, and still to this day I don't, buy it. After prodding him time after time again he ended up asking for my email address so that we could talk on MSN without being on Starbright World to talk. I was all for it. But honestly, I think he just wanted to IM me so that he could get my email address, no questions involved ;-) He denied that to the day he died saying that he really did have a question to ask me and that he forgot... Guess we'll never know!!!!

But I'm not going to lie, this guy intrigued me. There was something about him that I just loved! He could make me laugh any time and he was just so much fun to talk to. I started to go on SBW just to talk to Spencer!

So I gave him my email address and we started talking on MSN for a few months, just as friends. Well after we coined popular nicknames for each other (I'll get to that later!) and after many late night phone calls, one of Spencer's friends asked him if we were 'dating'. So, of course, Spencer came to me online and asked me, "Nik, Alysa is asking me if we're together.... what do I tell her?? are we?" At this point I really had a huge crush on Spence. We were flirting a lot on SBW, MSN, and some on the phone. We just had a great time talking to each other. But after having long distance relationships before, I didn't want to have another - especially someone who was 12 hours away from me! I could barely handle a LDR 1 hour away, in Tribune! haha.

But when he asked me if we were together, I remember turing really red, getting warm, butterflies in my stomach, and a huge smile on my face; yet I had this internal conflict going on because I really didn't think anything would come from this online / long distance relationship and hey, what if someone else was interested in me back home! I didn't want things to get complicated!!!!

Soooo I told Spencer how I felt, that I did like him, but I didn't think it would ever work out. I told him no. I turned the poor guy down! But, let me tell you, Spencer was kind of a stubborn person! He didn't take no for an answer! He assured me that everything would be okay. That we would just try it out; test the waters. Nothing had to be serious. We could just do this for a little while and if we didn't like it, if things didn't work out - it was over, no questions asked. I still said no. He told me that if I found someone here that I liked, I could date him and it would be over between us. Same as if he found a girl out there.

Eventually, after MUCH persuasion, I caved and told him that he could tell his/our friend Alysa that we were officially together. I believe that was either Sept or Oct 13th ;-). We then of course changed our Myspace relationship status, told everyone on SBW that we were official... You know - all of that fun stuff.

I do have to say - I am SOO glad he pushed me. I don't think either of us expected things to turn out like they did. Spencer even admitted that at the time he just wanted a girl friend. He just wanted someone to like him. Haha! Oh the little things we knew ;-)

And from there it's just kind of history! Lots of visits of me going to Utah to see Spencer, and a few of Spencer coming to Kansas to see me, and go to my senior prom with me. I then moved to Utah in 2009 and started school there and our relationship really took off and led to us getting engaged and then married =)

3. If married, how long have you been married?

Well, we got married on June 3rd, 2011 =) Best day of our lives! And Spencer and I were married 6 months on December 3rd, 2011. In total we were married for 6 months and 8 days until his death on Dec 11th. I still feel married to him and so it's weird to say that it was only 6 months. Just weird.

4. If you are married, where did you get married at? Big or small wedding?

Spencer and I got married in Kansas, in my hometown of Bird City. We got married in the church that I grew up in, The Methodist Church. We were originally planning to get married in Salt Lake City, but not many, if any of my family would be able to make it. It was a really hard decision of where to have it, but ultimately knew that more of his family would be able to travel to Kansas than my family could go to Utah. I am so glad that so many of Spencer's family was able to make it for our wedding. It meant so much to the both of us - especially him.

I would say that we had a medium, average sized wedding. We were a little disappointed that a few people weren't able to make it, but of course understand, but those who meant the most to us were there and we are so happy and blessed for that. It was such a beautiful, perfect, and special day. I will never, ever forget it. The look on his face, in his eyes. The love just radiating from him. And closeness of our family and friends as we shared such a wonderfully amazing day. Our reception was at the Bird City Legion hall where we had my favorite DJ. It got so, so hot in there, people left early, without notice (we were disappointed, but alas we were also very tired), we only got to do the bouquet toss, first dance, father daughter/mother son dance... no dollar dance, no garter toss... Spencer got sick about 1/4 of the way into the reception so he wasn't able to participate - but he still had a good time visiting with friends and family =)

5. Do you have any nicknames that you call one another? Share!

Of course we do! Told you I would get to this =)

We called each other "Pea". We were on SBW so much, and one day we were finishing each others sentences left and right. I eventually said to Spencer, "Spence, we're really like two peas in a pod since we're always saying what the other person says, at nearly the same time" or something of the sort! And it really just kind of stuck! Spencer then called me Pea every time I would enter the chat room on SBW. I caught on quickly and started calling him Pea as well. After we made the decision to "be together" and "date" he started calling me "My Pea" =) What a warm thought for me. Every time I entered chat I would get a huuuge welcome from Spencer with, "MY PEEEA!!!!!!!". I again caught on and called him "My Pea" and it went from there. Our wedding reception was kind of based off of the Two Peas in a Pod concept =) so cute! I honestly miss calling him my Pea.

6. Name 3 things you love most about your honey.

Really... just 3 things??? Holy cow... 3 things honestly doesn't even begin to touch the surface. You know, since Spencer has passed away, I remember all the time the things I love most about him. And by the way... these are in no order at all... I loved everything about Spencer and I can't put them in order ;-)

1) I loved his advice and listening ear. If I had a problem, ANY problem at all no matter how big or small, Spencer would always listen to me. It didn't matter how long and drawn out my explanations of my problems would be, he'd listen until the very end. I didn't always like what he had to say at the time, by giving his advice I would always ask for... but thinking back - man Spencer was always, always right. If I only would have listened to him more ;-) He had a very, very unique was of looking at a situation and helping me out. I truly miss that. (ok i miss EVERYTHING....)

2) I really loved how Spencer would always, always tell me how much he loved me, and he would constantly tell me how beautiful I was, inside and how. He told me how amazing I was. I guess he just praised me so much. He just never, ever let me forget how much he respected me, looked up to me, loved me, and felt about me. I heard it ALL of the time. I loved how compassionate he was towards me. His spirit was beautiful. He had a heart of gold and was an absolutely, without a single doubt, a beautiful soul.

3) It's hard picking a third. So many things I want to share... Haven't even scratched the surface... but I will say uhhhh.... I'm just going to say a bunch.. forget 3 things. I'll just spare you and won't go into detail about why I love this about Spencer.... The way he touched others. His smile. His Faith. His encouragement. His Empathy. His attitude, though sometimes it would be down... he really did have a good attitude. His selflessness. And now I'm really missing him so...etc etc etc.

7. Tell us how he proposed!

=) Good memory! Spencer and I were asked to speak about our illnesses and our relationship at the Starlight Gala in 2010. We were asked to talk about how important Starbright World was in our lives. And we were also asked to preform a skit with our best friend, Emily, who we also met on SBW. [Side note... we had an AMAZING time! We met and hung out with tons of celebs and we were treated like Celebs that night... ahhhhh]... So Spencer and I flew to LA to meet up with Emily, and my family who was also invited to attend to hear us speak. We hung out all morning and afternoon and had a wonderful time. But during the late afternoon things started getting, well.... strange for me. I felt like everyone was hiding something because they were talking among themselves and I felt like everyone was keeping something from me because mom would keep taking me out of the room and away from Spencer! I finally complained to my mom about how left out I was feeling, and she told me not to worry at all that she just really wanted to spend some time with me since it had been so long since we'd seen each other! I calmed down and figured she was right. much time passed and Spence, Em, and I were all hanging out in our hotel room when someone called Spencer on the phone. He told me it was my sister and that she wanted us to go down to the poolside. Emily agreed and said that she really wanted to swim. I thought swimming sounded like a fantastic idea and was shocked that Spencer wanted to come too! So I went into the bathroom to change into my suit and emily did the same. We then headed down to the pool - I was pretty excited and in such a good mood! We got down there and my mom tells me, "Nikki! You should go check out that cabana over there, it's really cool!!" Of course, I didn't think anything of it and walked over to the cabana while Emily joined her family. Spencer followed me. It opened up the side of it and saw candles everywhere, rose petals all over the table, and a huge bouquet of roses sitting on the table.

[side note... I was completely oblivious the WHOLE time. Haha I really should have known!!!!! Spencer and I had talked about wanting to spend just a little bit of time to ourselves during this trip because we VERY rarely got to travel... we wanted to take advantage of being in such a cool place together!!!! It was first for the both of us...]

So even after seeing this very romantic cabana set up, I didn't think twice about what was going on. Of course since this was a suuuper fancy hotel, they just randomly did this at night, right?! It was just something fun they did for dates and such! HAHAHA!! Lame I know. So I ran out of the cabana and begged Emily to come over and check it out! (of course I did..) My mom hollers at me to get back in there and she'll be there soon. Ok, sure. So I go back in there and Spencer comes in. I am just looking around, huge smile on my face, thinking of how cool things are. And then it hit me.... Spencer had them set this up for me!! Not for an engagement (of course not! I had no idea...) but just for some time together. Just for a really nice night to ourselves. I thanked him so much and just couldn't get the smile off of my face. Spencer never did anything like this for me. It was SO SWEET!

After talking for a little while he started acting like his portable oxygen compressor was acting up. He told me that he was having a harder time breathing and that he thought something was wrong with the O2 machine. I got concerned and a little disappointed, because things like this always seemed to happen to us.... so he got down on both his knees to "check his oxygen compressor". I started to go to the other side of the bench to help him when he told me, "no just sit down, I figured it out, it was on pulse" (ya right.. ugh)... so I relaxed and then he turned around, still on his knees when he suddenly put one knee up and pulled out a box. Poor old me.. I was still confused.... He then started to talk to me... and it really, really hit me. He was proposing!!! I have no idea what he said. None. I am pretty sure he told me how much I meant to him etc etc.. he then opened the box and asked me to marry him. After he opened that box I continued to shake my head, tears streaming down my face, saying "no no no no!! you're not doing this! oh my goodness no no no no!!!". And then I actually asked Spencer, "Oh my gosh.. did you ask my dad?!" He told me that yes, he did indeed ask my dad and then again said, So Nik, will you marry me... I finally got knocked out of my dazed and confused mind frame and of course told him yes while still sobbing!!! One of the happiest nights of my LIFE! =) We then went to eat a very fancy meal with everyone at the hotel =) and lots of pictures taken!!!

8. Is he a flowers and teddy bear kid of guy for v-day, or strawberries, champagne, and rose petals kind of guy??

Uhmmm... I would say no and no. ;-) He might get me a nice teddy bear for v-day, but none of the other stuff. Spencer didn't like getting me flowers because they died. He didn't like spending money on something that just died within a week. Very practical. Totally got it from his dad!!! But we did have a tradition for vday and we would go to Olive Garden! It was a lot of fun. We usually went the weekend before or after Vday so it wouldn't be so crowded.

9. Are you a sunset dinner on the beach kind of gal, or pop in a movie and relax on the couch kind of gal?

Honestly... I like to pop in a movie and relax on the couch with my man kind of gal. BUT I really do like going out and having a romantic dinner, too =) I guess I just more see myself as someone who doesn't mind staying home... as long as I'm with him!

10. Tell us one thing you'd like to do with your significant other one day. if you could do anything? Go anywhere?

Oh boy... Spencer and I would have LOVED to travel. He told me so many times he would just love to live on a boat for several months! He wanted to see the world. See the USA. He honestly wanted to travel so much and just see it all. I could definitely agree to that - if we could have, we would have!!!!

11. Tell us what you plan on doing on this Valentines Day?

(it's already passed and I really have no comment with this one....I could do it for the next vday... but that has no significance to me right now....)

12. Are you asking for anything this Valentines Day?

(again... really no comment...)

13. Give us one piece of advice about keeping a relationship strong and full of love.

Oh boy... Live every single day like it's your last with one another. Enjoy every moment, even though it may be hard. See the good out of the bad. Stay positive. And I can't stress any of that enough. Tell each other you love one another all of the time. Don't take one moment for granted. Don't ever, ever go to bed angry. Love with all of your heart. Just love, love, love like there is no tomorrow.

14. Show us a picture of what love means to you.

Sunday, February 12, 2012

Reflection in the mirror - Day 19

Your reflection in the mirror - Day 19

Thought I'd start back up with my 30 Days of Blogs. I'm definitely behind! But I'm glad I was able to take a little bit of a break from blogging on here.

What I look at myself in the mirror I am not exactly happy with the outward appearance that I see, but I have definitely come to see my inner beauty. Everyone notices the flaws that no one else sees with his/her appearance... But I'm definitely disappointed in the way I've let my body down. From spending months in the hospital with Spencer day after day, and then coming home and sitting around for about a month grieving I definitely gained some weight. And not only have I gained weight, I've lost a heck of a lot of muscle mass. Sitting around on the computer and reading, and writing all day for 4-5 months will really do that to a person.
The stress on my body really didn't help either, causing me to eat probably the most unhealthy foods I could and I ate them at the worse times possible. The comfort foods. Comfort eating. And not to mention that the hospital food isn't the most healthiest either O_O. You'd think being in a hospital it'd be super healthy, but no.... not at all. Huge portions and greasy as heck!

But anyway... back on track.

I have been thinking and thinking about ways that I want to get my body back into the shape that it deserves. I'm just coming up short every time. I do well on one thing, and then fall short on another thing. I can eat pretty well for a few days/weeks at a time, and then I get super stressed out and eat everything in sight. Horrible. So I'm slowly working on improving my eating habits and also my activity level. Watching a 3 year old 4 days a week for 8 hours a day most definitely increases the activity level!! I just can't wait until it gets warmer outside so that we can do nature walks and go to the play ground and run around. That will really help me.

Again... back on the right track of the post...

So even though I'm not greatly impressed with my outward appearance, I am becoming more and more proud of my inward beauty. I have really come to understand this through years and years of self reflection and growing. I really started to realize who I truly am during and after those 3 months that Spence was sick. I realize how caring and empathetic I am. And I realize how incredibly strong I am. Even thought I don't feel strong half the time, when I reflect on especially those last 3 months, I realize how strong I had to be to go through everything and to help Spencer out.

It has taken me a very long time to realize all of this... and I've still got a ways to go.... but I'm getting there and I know that Spence would be super proud of me.

Saturday, February 11, 2012

The 11th...

What a post to bring me back from my blog hiatus. -sigh- I haven't been feeling up to blogging every day lately. Not even every few days. Every time I started a blog my mind would go blank and my fingers couldn't type.

But I knew I would want to write a blog today. I knew what it was going to be about and everything... little did I know yet another turn of events would happen that have changed my blog post idea yet again.... My mind is jumbled and a million thoughts are running across my mind....

The 11th hasn't been the best day of the month for me and today just adds to it, unfortunately.
June 11th, 2011 my father-in-law passed away from cancer.

Little did I know that 6 months later, on December 11th, 2011, my husband would also lose his life as well from Cystic Fibrosis..

Well today... on February 11th, 2011 - my Grandma Johnson joined Spencer and dad in Heaven. She's been suffering for a long time now. The last week has been horrible for her. She couldn't breathe, she couldn't talk at all. She was sleeping constantly, not waking up. In pain and discomfort. Getting morphine and medication to keep her calm. But now she's breathing much easier, free of all ailments. I am glad she's not suffering, it is a blessing she's passed on. But it doesn't make it any easier.

If I had not just lost Spencer 2 months ago, maybe this would all be easier to handle. I could see the light at the end of the tunnel... That even though she is gone, she isn't suffering at all. But right now I am struggling and hurting a great amount. Who knew that this specific 11th would be so hard to bare. I keep getting flashbacks from exactly 2 months ago, to the day. I had forgotten some of the emotions I felt leading up to making the decision to end life support. I forgot how hard it was on that day to see Spencer hurting. How hard it was to make decisions for him. To make the choice to give him Morphine to make him comfortable knowing that it would take away his ability to communicate with me. I just forgot how I felt that day. Even though I had a since of peace that it was ending... I forgot how hard it was.
Until today.... until the day that every emotion I had is coming flooding back to me. Exactly 2 months later. I find myself looking at the clock, thinking back to what was happening at this point 2 months ago, and then I hollar at myself to not torture myself by thinking of the things that happened by the hour. To just let it be.

I knew today wouldn't be easy... It marks another month that I have lived without my Pea. Another month that I have experienced things I will never get to share with him. Learned things we will never get to share. Grew 2 months older with him staying young. It hurts. Each passing moment gets just a little bit harder. But I really didn't think the 11th would bring another heartbreak. Another reason to despise it.

Yesterday we knew my grandma was not doing well. She would barely wake up. She definitely couldn't talk and only opened her eyes once for my dad. I told my sister that she had to avoid passing away tomorrow (today) because it was the 11th, the day Spencer died. I didn't think I could handle something happening tomorrow (today.) Great. That didn't happen. She couldn't hold on anymore. Not even another day. And so today I am left with yet another crack in my heart putting so much stress on it that it may break. I am extremely vulnerable and I can't stand to think of something else going 'wrong'.

I'm most definitely not ready to go through this process again. To sit and watch someone write her obituary. To plan the details of the funeral. To go to the funeral. I'm just not ready. Granted, I will never be ready...... but 2 months later going through another family members funeral is not okay with me. My heart, body, mind, and soul is incredibly weak, raw, and exposed. Going through the motions again is going to stir up all kinds of emotions and feelings I don't care to experience any time soon.

And I can't help but just kind of beat myself up about not going to see her. I mean I know that, yes, I did have a valid reason to steer away and not spend a little time with her since I got home from Utah. I haven't seen her since I got married, in June. I feel so bad that I didn't see her again. When I got home from Utah she was put in the hospital. I wasn't ready to go back to a hospital setting and see someone so sick... so I stayed home. I didn't go up to the home for Christmas because I wasn't feeling the best from a cold... but of course I still could have went. I just really didn't want to see the whole family. I didn't want to be around everyone. I didn't want to see someone sick again. I didn't think my heart could handle that. But she did get a little better at some point. My dad continued to ask me to go up and see her. Again and again I told myself I would later.... that right at that moment I wasn't strong enough to handle it. I wouldn't know what to say. I wouldn't know how to act. But time and time again I kept putting it off. And then she got really sick. To the point where she couldn't eat, couldn't speak. Great I really did it then. I put it off all those times she was "healthy" and now she's sick and dying. I wanted to go and see her, but I KNEW I couldn't this last week. Because she was on hospice, because we knew she was dying. I didn't want to be around that. I'm just upset at myself. I don't care what anyone else thinks about me not visiting her... I just missed my chance to see her one last time. How could I? I'm REALLY trying not to worry about it... but it's on my mind a lot. As I said... of course I had my reasons... but Why I couldn't I overcome it just once to have just went that one time to see her? Ahhhhh...... The things you look back on and beat yourself up over....

I've also been thinking about how numb I have felt recently. How I haven't really felt happy, nor sad. I haven't thought about Spencer a lot. A friend said to me that my body will feel again when it is ready. I got from that that maybe my body isn't in a position in which it is ready to feel so much pain. And right now... I believe it was trying to spare me for a few weeks.... somehow preparing me for this. Who knows how this all works... who knows if my body knew something was going to happen soon.... but I guess here is the answer to my prayers... the answer to me pleads of wanting to feel something again. Wanting to be able to think about Spencer since, for some reason, he hasn't been on my mind a lot. God answers our prayers in VERY mysterious ways. I just wish it wasn't this way... =/

I guess I don't know what else to say. I'll save my other thoughts for a different blog post. Today I think I'm just going to take it easy... let my body feel every single emotion it needs to feel. Heck I might even just choose to be depressed today. Watch some sappy movies and force myself to cry. It could turn out to be pretty cleansing. I don't know... I'm just going to take it as it comes. And continue to hate the 11th of every month that much more.

Grandma, may you rest in peace. We all love you very, very much.

I miss you Spence. You're in my heart forever and always..... annnd by the way.... I saw this on Pinterest and it really spoke to me.... Perfect. so much that I very spontaneously ordered this from her Etsy shop just an hour earlier to read "Spencer Pea" in the heart..... I can't wait for it to get here....

Friday, February 3, 2012

What I miss and the pain I feel

There are so many things that I realize I miss that I never once payed attention to before... and if I did pay attention to them - I told myself and Spencer several times that "I won't miss this!!!"

Truth is... I miss it all. And today I'm really missing those specific things that I didn't think I'd miss.

*The sound of his loud neb machine - I could never hear the TV, my music, sometimes I couldn't focus because this noise would be right in my ear... But now? I wish I had an excuse not to listen to my music or watch TV. It was a reminder that he was alive.

*The constant rumbling of his oxygen machine - we started to call it a white noise maker - This was something that I guess I didn't hate all that much, because it really did help me sleep, but at times, I just missed the silence. Sometimes I hated a constant noise. But now? I wish I could hear that rumbling of the compressor. The silence is just too deafening now. It was a reminder that he was alive.

*Taking the time out to do treatments. I'll admit. A lot of the time I got angry because we couldn't stay out for more than 3-4 hours before Spencer HAD to get home to do his Vest and Albuterol. We would take a portable nebulizer, but sometimes he just really needed to be at home so that he could relax and sometimes put on his vest to get the crap out of his lungs. Sometimes I hated him having to stay up an extra 40-45 minutes to do his nightly treatment. I wanted him next to me when I went to bed. But now? I wish I actually had a valid excuse not to go to bed and to come home early. Before we came home early for him, and because we had no other choice... now? I come home early, (or don't go out at all) because I'm just not up to being out with friends or doing other things because I miss him so much and wish he could be here with me. Before it was having to (only because I didn't want to sleep without him, and sometimes couldn't...) stay up that extra 45 minutes for a treatment... but now it's staying up 2 hours later because I just can't fall asleep without him. And unfortunately that is going to be reality for a heck of a long time. It was a reminder that he was alive.

*The smell of his TOBI - Yes I know.. It sounds unusual. But the smell of his TOBI really drove me crazy. It made me sneeze like crazy, get congested, and cough. (I can't even imagine how HE felt having to actually inhale it!!!!). But I have heard some people complain, recently, how much they hate the smell of their husbands or child's medications. But now? Of course I didn't enjoy that smell twice a day but I wouldn't mind the smell of just one more time. It was that antibiotic that helped his lungs fight the pseudomonas and helped him to breathe in the long run. It was a reminder that he was alive.

*His Oxygen Tanks - I can't tell you how much I despised carrying the oxygen tanks in and out of the car, the house, and the hospital. Every single time we went out we had to juggle 5-6 oxygen tanks (sometimes more!!!) and man, the more of those you lift the heavier they get! Once a week I would have to take 10-15 tanks in from the house to outside of our door for the company to come and pick up because we were their first stop at 7AM and I would either be in the shower, or we would both still be asleep. And then when I got home that evening. I had to carry 10-15 tanks from outside to inside of our house. It was a pain and I would get angry that Spencer wasn't able to do this. I knew it wasn't his fault, but I hated that he wasn't able to... But now? I wish I could carry an oxygen tank out to the car again. It was a reminder that he was alive. I was in my grandpas car the other day and he had a mini oxygen tank in the passenger seat. I just stopped for a quick second and started at it. Raw emotion of what I actually miss.

*Two week hospital stays - When Spencer got admitted, 9 times out of 10, I despised it and it really upset me. It took away time that we could spend together outside or doing something fun. It kind of put life on pause for 2-3 weeks. And when Spencer was getting admitted once, and even sometimes twice a month that was just TOO MUCH. Unfortunately there was little we could do to prevent that, especially in the last year of his life. He tried his hardest to stay out of that place, but it was just inevitable, we never could avoid it. But now? Who knew that the result of less frequent to no more hospital stays was death? -sigh- The hospital staff became not only Spencer's family... but my family as well. I miss the people that we worked with every time he was admitted. I miss their smiles and encouraging words. I miss the delay in getting cereal and other things that we needed. I miss the quality times that we would spend together watching movies and eating snacks from the cafeteria. Even though I got SICK and TIRED of that hospital food, especially since I was eating it twice a day every day for 3 months, I miss it and I wish I could eat it again. Being in the hospital so frequently, fighting for his life was a reminder that he was alive.

*The sound of his cough - I always thought that Spencer had a unique cough. It wasn't quite like any other CFers that I have heard. I think mainly because when he coughed, it would always turn into a coughing spasm for 1-5 minutes. I didn't like when he coughed because it was a reminder that he was sick and it really hurt my heart to hear him cough so much. I would also get annoyed sometimes because when we would be trying to listen to something he would end up coughing a whole bunch and I'd miss what was trying to be said. But now? I long to have that cough wake me up in the middle of the night, or to interrupt a conversation in some way or another. And even though it may have been a reminder that he was sick.... It was a reminder that he was alive.

There are other things that I miss; many, many things - I can't even count how many things I miss.. unusual or not. But I think you get the gist. All of these things were reminders that Spencer was alive and breathing. I no longer have those reminders because, and there is no way to sugar coat this, Spencer is dead.... and those words hurts my heart more than words can describe.

The pain that I feel behind those 3 words is completely indescribable and 100% unimaginable.

[*side note! If you have felt the loss of a loved one, be it a grandparent, parent, child, or friend - I can guarantee that you can not relate to exactly how I can feel just as I cannot relate to exactly how you feel. (keep reading) Even if you have lost your spouse, you can't possibly know the pain that I feel. (again, keep reading) Why? Because as a friend said to me when Spencer died.... the feelings you go through and the pain you feel is so specific and unique to the situation and to the relationship. I am not for a second doubting that you don't feel the pain of losing a loved one.. but I am just saying that your pain and my pain is unique and different from each others. Only we know how we feel. Please don't try to tell me that you understand completely and totally my feelings and my pain... I'm only saying this because it hurts me when you tell me you understand the way that I feel... *Side note over...]

That pain that I feel is even too much for me to bear and so I can't even begin to feel the magnitude of losing him. It only comes out as small, stabbing, and very painful bursts beyond my control. These feelings come at very random times and they are very rare, I've only experienced them three times in the, nearly, 2 months Spencer has been gone. But even though they don't come often, they are oh-so real and the worse pain I have ever in my life felt. Many times tears just roll down my face. I cry more tears than I ever have and the majority of the time I don't even make a sound. But the cries and gasps and moans that do escape my mouth are those of an absolutely broken and shattered heart. I never want to hear them because it is truly pain beyond my comfort level.. beyond my control... and those sounds scare me because I know at that moment I am totally vulnerable and ready to break at any point.

I just want to touch on one other thing because I really need to express this and it's to no fault of ANYONE.

All this news of the new drug Kalydeco is really getting to me, I think. Of course I am ecstatic for those 4% with the mutation who are able to take this medication. I wish the best for them and I know there are better things to come. More people will be able to take a medication similar to this and live a healthier life.
So what gets to me about this?
Spencer doesn't have this opportunity. Granted, he didn't have the specific mutation and so he wouldn't be eligible to Kalydeco right now..... but this is all happening SO soon after he died. I know that the damage that was done is permanent, and even if he WERE to be able to take Kalydeco he would still need a transplant... but lets get around that fact for a minute.

And this is all really hard for me to describe so I hope maybe this will all make sense.... but I just struggle to know that if he wouldn't have gotten sick back in that awful day in September, he might still be with me today.. and he might have the opportunity to live a better life with this medication. I guess I just ask why couldn't he have been given a little bit longer of "Good" health so he could improve and soon get to take this medication. Everyone said how much room for improvement he had and how possible getting healthier would be. No one said it would be easy... but they truly thought it was possible.... and Spencer was actually doing a little bit better before, and after, we got married. What if that would have continued?
I guess just to know that this medication is now available, actually in patients hands, and a cure is literally fingertips away.... And to know that Spencer isn't alive anymore to be able to get that medication and possibly a cure really hurts my heart. In fact, I find myself getting a little angry. I just, of course wish for a better and different outcome. -sigh-

That's just some feelings I've been having recently. I needed to share them. I've been feeling pretty numb this week and I haven't had many feelings to express so now that I actually felt something, I wanted to write it down.

Thursday, February 2, 2012

My irritants... Shayna ;-) Day 18

Five things that irritate you - Day 18

1) When Shayna, my sister, looks over my shoulder while typing

2) When Shayna doesn't stop looking over my shoulder even though she knows it annoys me

3) When Shayna looks over my "arm" while I am typing

4) When Shayna corrects me with what I say constantly.

5) ...... Shayna.....

Ok ok just kidding =) She was looking over my shoulder and that does really bother me, but I thought I'd be funny and post about her. She thought it was pretty clever and started laughing and begged me to keep it on here.... Made me smile so I thought I would ;-)
But really... only 5 things that irritate me? I have a lot of irritants :-P I guess these are just going to be the 5 first things that pop in my mind. It changes on a minute to minute basis!

1) When people smack their gum or chew with their mouths open

2) When people ruin their health with bad habbits

3) People having no manners

4) When people say FML all. the. time. Really..... it could be worse.

5) People who are very, very fake. Who try to act like they like EVERYONE and then talk behind your back, etc. Yes - that really bothers me.

Wednesday, February 1, 2012

What I hope my future holds for me - Day 17

How you hope your future will be like - Day 17

I have many hopes for my future - and sometimes this is a rough topic to think about because my whole future has just changed.

I honestly don't know what my future has in store for me... but I know it's going to be big.

I want to move back to Utah probably very late summer or early to mid fall. I just need to give myself some time and space from the real world.... even though the real work is still existing despite that....
I hope to start up school either next spring semester or summer semester. I think I am going to have to work all of fall semester to save up some money and pay off some debt. But I hope to be back in action soon!!!
I am going to be working very closely with an advisor when I move back. I need to get back on track with my major and figure out best way possible to graduate. Even though I was 100% sure I wanted to be a Child Life Specialist, once again, for right now, my major is up in the air again. I don't know if I just need these 6 months to take a break from the hospital and medical life, or if I just want to change my career track - but either way... I am trying to rethink my options for my major... We'll see what happens. If I end up in school an extra few years - so be it. But I WILL finish my major... I WILL graduate... and I WILL be successful. That's something I have no doubt about!!!!! I miss school (hard to believe?! lol) and I'm ready to get back at it.

When I move back to Utah, if everything works out, I think one of my good friends is going to share an apartment with me for a year! =) I am SUPER excited about this! She was Spencer's very best friend and I am really looking forward to getting to know her better and become close with her. She's a super great girl!
I want to live the college life. Not the sterotypical college life (drinking, partying.. etc) But just making friends... being really involved with school activities... staying up late watching movies with my friends... going to the mall... Having game nights..... those kinds of things =) I think that's the best fun!
I hope to start dating again in the far future. I don't want to jump into it. Not at all. But I do hope that my future provides me with an opportunity to find love again. I am VERY hesitant about all of that right now... Of course I am.. everything is *very* fresh and will be for quite awhile. It's very hard for me to think that I will fall in love again, get married again, and have kids with someone else. But I want a family so, so terribly bad. I hope I get presented with that opportunity! =)

And I hope my future holds a good job opportunity... When I move back, when I start school, and when I graduate from college and get a career... I hope I'm successful in finding a job that I LOVE and just live for.

Not last but certainly not least... I hope I grow in my faith 10 fold. I kind of backed away after Spencer passed - and even while he was sick in ICU for those 4 months... It was very hard to trust. But now I'm feeling it come back.. and I long to strengthen my relationship with my Heavenly Father!!! I am so excited for callings that I might receive, for many blessings that will be given to me, and to meet friends and create a family within my church. I also want to be able to strengthen and build my testimony over not only the next few years... but my entire life. I want to be centered and focused on my Heavenly Father and trust in him and that he will provide in whatever way I need.

I'd like to hear what you think YOUR future will hold!!! Comment on this post and link your blog! =)