Sunday, December 16, 2012

Grief doesn't end after a year

Just because it has been a year since Spencer passed away doesn't mean that the grieving stops. If anything I have had many, many widow friends tell me that if anything, it gets a little bit harder the second year... and as the second year is now in full swing, I can completely understand that. The fog of losing my husband has lifted. I am no longer just treading along, going through the motions. I'm fully aware and because of that things seem a lot harder than they were last year.

Some things do get easier, but I am in full belief that grieving is a life long process. It's something that you never, ever just "get over". You learn to work through things and cope in different ways. You begin to build a new normal. Life does go on, it just takes awhile.

I came across this post on a widows blog and I still feel like it applies to me, and probably will for a very long time. Yes, this is VERY helpful for a new widow to post so people can know how to help, but I think it's also important for those of you around us [by us I mean, us widowed people] to remember that around the holidays, anniversaries, angelversaries, and significant dates, no matter how far along we are in our grieving process, that we need your support more thane ever. I understand that most of the time you just don't know what to say. You don't know how to act.

Maybe this will help you understand a little bit better. Give you some insight. I know that this month has been really hard on me. I feel like I've hit a brick wall. But your support is huge in helping me get through each and every day and I'd really appreciate it if you could take the time to help me.

Hope this helps some of you! I've bolded/underlined and colored some of the things that really stick out to me and really apply to me, personally.

"How You Can Help Me"

Please talk about my loved one, even though he is gone. It is more comforting to cry than to pretend that he never existed. I need to talk about him, and I need to do it over and over.

Be patient with my agitation. Nothing feels secure in my world. Get comfortable with my crying. Sadness hits me in waves, and I never know when my tears may flow. Just sit with me in silence and hold my hand.

Don't abandon me with the excuse that you don't want to upset me. You can't catch my grief. My world is painful, and when you are too afraid to call me or visit or say anything, you isolate me at a time when I most need to be cared about. If you don't know what to say, just come over, give me a hug or touch my arm, and gently say, "I'm sorry." You can even say, "I just don't know what to say, but I care, and want you to know that."

Just because I look good does not mean that I feel good. Ask me how I feel only if you really have time to find out.

I am not strong. I'm just numb. When you tell me I am strong, I feel that you don't see me. I will not recover. This is not a cold or the flu. I'm not sick. I'm grieving and that's different. My grieving may only begin 6 months after my loved one's death. Don't think that I will be over it in a year. For I am not only grieving his death, but also the person I was when I was with him, the life that we shared, the plans we had for our children, the places we will never get to go together, and the hopes and dreams that will never come true. My whole world has crumbled and I will never be the same.

I will not always be grieving as intensely, but I will never forget my loved one and rather than recover, I want to incorporate his life and love into the rest of my life. He is a part of me and always will be, and sometimes I will remember him with joy and other times with a tear. Both are okay.

I don't have to accept the death. Yes, I have to understand that it has happened and it is real, but there are some things in life that are just not acceptable. When you tell me what I should be doing, then I feel even more lost and alone. I feel badly enough that my loved one is dead, so please don't make it worse by telling me I'm not doing this right. And remember, I was a capable adult before his death and I still am.

Please don't tell me I can find someone else or that I need to start dating again. I may not be ready. And maybe I don't want to be. And besides, what makes you think people are replaceable? They aren't. Whoever comes after will always be someone different.

I don't even understand what you mean when you say, "You've got to get on with your life." My life is going on, I've been forced to take on many new responsibilities and roles. It may not look the way you think it should. This will take time and I will never be my old self again. So please, just love me as I am today, and know that with your love and support, the joy will slowly return to my life. But I will never forget and there will always be times that I cry.

I need to know that you care about me. I need to feel your touch, your hugs. I need you just to be with me, and I need to be with you. I need to know you believe in me and in my ability to get through my grief in my own way, and in my own time.

Please don't say, "Call me if you need anything." [Yes, I am thankful for your offer, but please don't actually expect a call, text, or message... And don't get offended if I don't take you up on your offer...] I'll never call you because I have no idea what I need. Trying to figure out what you could do for me takes more energy than I have. So, in advance, let me give you some ideas:

(a) Bring food or a movie over to watch together.

(b) Send me a card on special holidays, our wedding anniversary, his birthday, and the anniversary of his death, and be sure to mention his name. You can't make me cry. The tears are here and I will love you for giving me the opportunity to shed them because someone cared enough about me to reach out on this difficult day.

(c) Ask me more than once to join you at a movie or lunch or dinner. I may say no at first or even for a while, but please don't give up on me because somewhere down the line, I may be ready, and if you've given up then I really will be alone.

(d) Understand how difficult it is for me to be surrounded by couples, to walk into events alone, to feel out of place in the same situations where I used to feel so comfortable.

Please don't judge me now - or think that I'm behaving strangely. Remember I'm grieving. I may even be in shock. I am afraid. I may feel deep rage. I may even feel guilty. But above all, I hurt. I'm experiencing a pain unlike any I've ever felt before and one that can't be imagined by anyone who has not walked in my shoes.

Don't worry if you think I'm getting better and then suddenly I seem to slip backward. Grief makes me behave this way at times. And please don't tell me you know how I feel, or that it's time for me to get on with my life. What I need now is time to grieve. Most of all thank you for being my friend. Thank you for your patience.

Thank you for caring. Thank you for helping, for understanding.

And remember in the days or years ahead, after your loss - when you need me as I have needed you - I will understand. And then I will come and be with you.

--Author Unknown

Monday, December 10, 2012

A challenge for you...

December has really crept up on me. For some reason I thought it was still weeks away. The other night I was talking with my mom and she reminded me that there were about 5 different things to look forward to this December. 1. Me coming back home 2. Shayna's birthday 3. My parents anniversary 4. Christmas. And 5. My birthday. MY BIRTHDAY. What?! I cannot believe that I forgot about my own birthday.

I guess that's been quite low on the priority list.

But something that I find even harder to believe? Spencer has been gone 1 day shy of a whole year.

365 Days.

52 Weeks.

1 Year.

At this point last year I was sitting at his bedside waiting for my parents to arrive. Just holding his hand and looking at his beautiful face. I can't believe it was 1 year ago. How did I get here?

Where did the time go? I've been asking myself a lot recently something to the effect of, "How did I make it this far?" I think of everything that has happened within the last year. There have been so many moments that I so desperately wish my husband could have shared with me.

Turing 21 years old. Holidays. Moving back out to Utah and finding a place to live. Going through the interview process for the very first time and ROCKING it. Landing my first "real" job that I actually really, really love. Joining a new ward. Being involved in things he would have loved to do with me. The list really does go on.

I have changed a significant amount from knowing Spencer and being his wife. Some has been for the better. And some has been a digression in things that I gained while we were married that I'm working on getting back. (were married, it still is awful to say) I learned so, so much that I have put into practice this year that he taught me. Valuable lessons I keep very close to my heart.

I'm going to take you back a year ago. When we first learned Spencer wasn't going to make it. The outpouring of love and support was extremely humbling and overwhelming for me. But something else that overwhelmed me? The number of messages that I got from all of you telling me how Spencer changed your life. How you learned so many things from him that you would remember forever.

I was told many times by friends, and even strangers, how you were going to live your life differently in some way to honor him and in memory of him. All for Spencer. Sometimes it's easy to say these things and then forget about them. It doesn't mean that they weren't true, but it's easy for life to get in the way of promises we make and things that we say.

So I just wonder... how many of you remember what Spencer taught you? How many of you remember how he inspired you and touched you? How many of you remember the promises you made to him before he died to live your life in a different way because of him?

Now... how many of you followed through??

If you want to, I would be delighted to hear the answers to my questions above. Just post a comment to this blog. If you'd rather keep it to yourself, that's just fine too.

But I want to pose a challenge to you for the remainder of this month...

If you made a promise or commitment to Spencer, or in honor of Spencer, before he died, try to fulfill that promise by the end of this year. Maybe you said that you'd be more kind and loving. You'd take more time to appreciate the things around you. You'd give more to others. Anything.

I want you to reflect on the lessons that you tell me that my husband taught you, no matter how small; and instead of verbally saying these things, I hope that you will act upon them. Change something. Do something. Make a difference in your life, for the better, because of the way you were touched by a young, selfless man.

Friday, December 7, 2012

Grieving and Faith

Jeeze it's been awhile since I've posted. I really have had a lot to say, and I've started writing a couple of blog posts, but I never finished them, never posted them. Hopefully I can get back on the bandwagon and start posting a lot more frequently. I love looking back on old posts and remembering where I was physically, emotionally, mentally, at a specific time in my life. So here it goes.. jumping back on the blogging train..

I follow this blog called Widows Voice and more often than not when I read a post it tends to define me. The words that these widows and widowers convey often times put into words what I've been unable to for a long period of time. There was a blog that I read today talking about how she lost her Faith when her husband got sick with cancer. It hit pretty close to home..

I am not sure if I've posted about my struggle with Faith since Spencer's death. I am not going to lie - it has been the single hardest thing for me to deal with since I lost my husband. There have been times where I've felt close to the Lord. I read my scriptures and I prayed every night. But the majority of the time I feel I have been so incredibly distanced from my Heavenly Father. I have been unable to put forth an effort to continue uphold my end of the relationship and rely on Him for answers and guidance.

There has definitely been a void in this area of my life. I get angry and feel quite guilty because I am not at all where I should be in regards to my faith. I mean, I have every reason that I SHOULD become more Christ-like and closer to Heavenly Father. My husband is now in Heaven, and if I want to be with him again, I need to put forth an effort to earn it. If I want to enter the Temple and get my endowments, I need to work to earn it. I've heard that the vail is a lot thinner than we think and I'd love to experience not only the blessings of the Temple, but the communication that sometimes comes from being a worthy member of the church and being able to go through the Temple. I don't know that I will ever get sealed to Spencer (complicated issue, one that tugs me in both ways always...), but if I would ever want that to be a possibility... again, I need to earn that.

But for some reason (multiple reasons) I've been so far away that it's hard to get back..

It's also been really hard for me, because even when people say things with the very, very best of intentions, it often times stings me and makes me feel guilty. Sometimes (okay honestly, really every single time) I try to bring up how I feel, I get the same type of reply over, and over, and over again. When I try to talk about how I don't feel worthy, how I am angry and hurt at God, and etc I get a response like this, "Oh, Nikki! You really shouldn't feel that way." I understand what's going through their mind when they say it. But what goes through my mind after hearing it constantly is something completely different. I KNOW that I shouldn't feel that way.... But talking about this topic to people is hard for me, it takes a lot for me to bring it up and it's frustrating when I always get shrugged off and the response I get is "You shouldn't feel that way". I want people to look me in the eye and tell me that it's okay. That it's normal to feel how I'm feeling. That it's understandable and I have every right on Earth to feel this way. And then I want them to help me go about working through things. Getting back on track.

But I rarely get that. And it gets to me. Very few people seem to take enough time to really listen to me and help me through it. And honestly, it could be because I play it off to be not such a big deal because everyone else seems to think it's not such a big deal. That these feelings will pass. Will it's been over a year now and they are still hanging around. But truth is... it IS a big deal to me. It's an internal conflict that I deal with EVERY DAY. There is not one day that goes by that I am not disappointed in myself for my terrible lack of faith. I want to have unshakable Faith. I want Spencer to be proud of me in how much I've grown in my faith. But the sad thing is... I haven't, at least I don't feel like I have. And any other time that I struggled, I had him there to help pick me back up. He helped get me back on the right path. He knew exactly who I needed to talk to, or what I needed to do... I'm so new at all of this. 1.5 years a member of the church... I don't know the ins and outs and the ways to make appointments with people who I should talk to to help me out... And I think people forget this. So I just often times feel completely alone. And anymore it's getting to the point where I just ignore it because I'm not sure how to deal with it. -deep breath- I'm getting all worked up... It's hard on me...

But as I mentioned, the words in the blog, Widow's Voice, really defined my year off and on. I want to post some of them...

"As I watched Daniel deal with cancer and all the joy it entails, I lost faith." -- I can't even explain how true this seems for me. I can't say that I completely lost my faith, but it seemed so shattered. When I should have been drawing closer, I pulled away... 

"I tried to go to church after he died, but I was so angry that I would just cry in church and hate all of the happy families sitting around me.  I was bitter and resentful.  I didn't want to be there."

 Oh man... That last statement is very much me. It is to the point where I don't want to go to church because it is the one time that I truly hurt to the core. It makes me miss my husband on a level that is indescribable  I feel an intense longing, a deep ache, and a void that can't be filled. Often times I would sit there with tears in my eyes... Something they would say would make me remember, a hymn that we sang made me remember how much Spencer loved them... And I would get angry. I don't know what or who I was angry with, but I would definitely feel bitter which made being there miserable.   I mean, who WANTS to put themselves in a situation that is going to cause so much pain? That's where I'm coming from. And it's also not JUST going to church, it's praying at home, reading the scriptures, FHE, visiting teaching discussions. It's everything. I have been so deeply hurt and shattered it's so hard for me to get back on the right path...

All of it this so, so, hard to describe to someone who hasn't lived it. If you don't understand, it's okay -- I don't at all expect you to. But I needed to write about it. I needed to start blogging again somewhere, and this is what ended up...

Thursday, November 8, 2012

Thankful Thursday

For a couple of years now I've jumped on the bandwagon with, well I guess you could call it, "Thankful November". Where everyone either posts 1 blog a day with what they are feeling thankful for that day, or posting a status update on facebook with something that they are thankful for. I've done it both ways -- or at least attempted to.

But I decided not to do it this year. It's not that I'm NOT thankful -- but part of it is that I just possibly can't even express how thankful I am for the things in my life. I don't think anyone can even begin to realize the perspective that I have been blessed with this past year with everything that I went through. From the kindness I have received right down to finding a wonderful job and convient place to live, I can't even begin to put into words how humbled and thankful I have become for everything in my life. I feel like this is something very unique and not very many possess this deep gratitude for everything.

Now of course I can be your normal, typical, every-day Debbie Downer, just like every one is once in awhile -- but more often than not I am able to take a step back and look at the good in my life. I'm able to look at things in a different way. I realize how fleeting things can be. Not just life, but everything. I have the ability to find thanks in even the moments that cause the most pain.

So for this thankful Thursday, I just want to write about how thankful I am for personal realizations and a bit of self discovery.

When one loses someone they care for very deeply they often hear about how the next several years will be filled with moments of discovering who you really are. I completely get that because it seems like with every turn I am realizing new things about myself that I never knew before. I am realizing so many things that I dont' think I would be able to realize so early in life and without such a painful event in my life. Where I obviously am not thankful for the loss that I have experienced, I am thankful for the deeper appreciation that I have of life, and more importantly the appreciation and respect that I am learning to have for myself.

I have come to realize that it takes a very special and strong person to have this unique viewpoint on life even when one has been through so very much. Throughout my whole life people have constantly told me how much strength I have and for the longest time I couldn't even begin to believe it. From the moment I was diagnosed with my own disease, and even more so when I began taking care of the person I loved most, I have always been told how strong I am. But not once did I believe it.

I never saw it as strength. I always saw it as something I HAD to do. Going through the things that I went through was never a choice... it was something I had to do because, well, who wouldn't? Who wouldn't stand by their husband every waking hour? Who wouldn't go to extreme lengths to try and save his life? Who would just give up on the one they loved most?? It wasn't until after I had started to recover from the weakest point in my life that I realized what true strength really was.... and for so, so long, I had been the definition of it.

I did have a choice to stay or to walk away when the going got tough. It didn't even necessarily have to be leaving him because I couldn't handle it... but it could have been something as simple as, well sayy, choosing not to be at the hospital near as much. There was not one thing saying that I had to stay. There wasn't one thing keeping me at his bedside. The only thing that kept me there was my own strength. Those days that I didn't think I could make it through? I made it through because of the inner strength that I didn't realize I had and was using. Until beginning to heal from the biggest loss of my life I had no idea the resilience that I have.

I am so thankful for knowing how much strength I really have. It's helped me through some of the more, I guess you could say, less significant, melt downs that I've had. The worry of moving back out to Utah. Finding a job. Finding a place to live. Things like that. Yes they are legitimate worries, but I know that if I can get through losing a spouse and the grieving that comes along with it, I can get through nearly anything thrown my way. I now KNOW that I have the strength to do it.

I've proved it to myself time after time again and it just took a little bit of self reflection to realize it.

Sunday, November 4, 2012

What if

Tonight it just kind of one of those nights.

One of those nights where I miss him. Where my heart truly aches. I feel emptiness inside. I can't quite even describe the longing that is present right now. The hurt. The emptiness.

I am tired. I am worn out. I am absolutely exhausted from working 6 days for 10 hours each day and knowing that I still have one more day to go. I know that this makes my emotions all out of whack and makes my feelings 10 times as strong. When I'm feeling like this, this is when I start to miss him and start to get emotional about it. But the feelings.... they are still there. That's something I can't deny. And the crappy part is that I can't shed a tear even though I want to so badly. I wish that I could cry. Why is it that in the moments where I WANT to cry and NEED to cry I can't. I put up this defense. Something that blocks my emotions off to where I am numb and just sad. In the times where I don't have to be strong, I am... but the times where I really shouldn't be crying and I should be strong -- I can't be and I end up breaking down. Embrace it, they say -- but I can't. I could really use a good cry being by myself.


These past 2 or 3 days I've been having some fleeting "what-if" thoughts. Everyone has them. I know nothing can be done and most of the time a person just hurts themselves more by thinking about those "what-if" moments. That's why they have been fleeting. They come into my mind and I try and push them out as quickly as they come in because it hurts to think about. It physically, emotionally, and mentally hurts to think that in some way, no matter how small that chance would have been, I could have done something more, suggested something different that might have saved, or prolonged my husbands life. I get a knot in my stomach each and every time a thought like that crosses my mind.

I try to rationalize everything, but these thoughts won't leave. I miss him so much that any little thought that comes to mind that says that maybe, possibly, if I would have done something different that things would have had a different outcome, well it plays a small guilt trip on me.

So what has been weight on my mind so heavily lately and why? One of my friends with CF is currently fighting for her life. I've known her for quite awhile now and she's reached out to me a few times, especially recently. She's a wonderful girl with a great spirit about her and it kills me that she's struggling. She has been in the ICU for about 3-ish weeks now and has taken a turn despite all measures to help her get better. She's currently in a very critical situation right now and there is a chance that she may not make it through the night. And just as a side note here....I am very tired of losing my friends. It hurts me with every one and for some reason this situation has really been getting to me.  I think it's because I see her and her family going through nearly the same things that Spencer and I went through when he was so sick. The updates I get from her mom are so eerily similar to what I went through with Spencer. It hits home a little bit too hard, especially being so close to the year mark of when I lost him. And I have lived it. I know that they have to have hope. I totally and completely get that. I had to have SO much hope with Spence in order to make it through. But I also know the odds. I have seen several other CFers pass away in these same situations since Spencer died (and even before). Not one of them in this type of situation has made it through. I pray that she's an exception to this... I really do. Because my heart will absolutely break if I wake up in the morning, or at any time learn that she's earned her wings. My heart can't possibly take any more loss.... Anyway...

She had to be put on an ECHMO machine to work for her heart and lungs because they couldn't do the work for her. I've heard of other CFers being put on ECHMO to give their lungs a break and give things a chance to heal -- not often does it work (from what I've heard) but sometimes it does... it allows them another chance to fight through things. When Spencer was nearing his final weeks I had read about a little boy being put on ECHMO, it's the first time that I'd ever heard it. And then someone reached out to me, was giving me straws to grasp at for anyway to save Spencer's life. They mentioned ECHMO but I immediately dismissed the idea of it. For one, it was scary to me. Two, the doctors hadn't mentioned it and so I figured it wasn't an option for us (and it probably wasn't.... but of course... what if?) But now I hear about my friend being given this last ditch effort to save her life.

The thought that crosses my mind a few times a day now is wondering "what if" I would have spoken up about this? At least mentioned it as an option to try and get his lungs to heal. The worse we could have been told is no.... but I didn't even try.

When I think about it in detail, when I think about it in the way that I force myself to to spare me from the pain -- It probably wouldn't have been a good option. Again, "What if" it wouldn't have worked? What if things would have gone horribly wrong? What if they would have tried to ween him from it and it failed? He would have died in a way that neither him or I wanted. If it wouldn't have worked I wouldn't have gotten so many precious moments with him. I wouldn't have gotten to be there, with my support system, as he eased into the next life. It would have put him through another surgery, more pain, more struggles. The possibility of more complications and infections. I don't even think he would have agreed to it. He was done. He was ready to go.

But then I go back to the good, "what-ifs". If it would have helped his lungs heal long enough to get him stable. Possibly gotten him stable enough to get evaluated for a lung transplant (even though that would have been even more unlikely considering we had to travel....) and etc etc. You know where it could lead -- it could lead to where he would still be with me right now.

I know the logistics of it. I know it most likely never would have been an option because no one thought he was going to recover. There wasn't much hope from his medical team that he would survive or even get a transplant (not to say that they didn't have his best interests in mind or they were "heartless" or anything like that... they weren't. They did everything they could... at least I think so.) And the more I type things out, the more I know it really was just not an option considering everything that was against him.

But when you miss someone SO much... When you want them back SO badly, you just cannot help these thoughts creeping into your mind every now and then.

It's the same with all of this talk about the new medications that are giving CFers a completely different and new life. Kalydeco and all of the advancements. The timing of what happened to Spencer is absolutely awful. Just a few short months later all of this finally came available to patients. "What-if" it would have just waited. There would have been SO many promising things for him... in HIS lifetime. It would have given him more hope. More reason to stay healthy.... I'm not going to go on and on about that -- but it does bother me and it makes me think about the crappy timing of everything quite often.


What I want more than anything right now is to be able to hold him in my arms. To be able to reassure one another. Comfort one another. Cry with each other. Support each other.

I miss him tonight. I have an ache in my heart, a void, that hasn't, and can't quite get filled with anything. I just needed to write a little bit to get it off of my chest in hopes of a good nights sleep. Whether it made sense or not, that doesn't matter. I just needed to write.

Saturday, October 20, 2012

I'm infuriated

Okay... I never, ever make political posts. I never comment on others. I never talk about politics because I will be the first to admit that I am not that knowledgeable and I only have strong opinions about a couple of things that play a role in my personal life. Not to mention I hate the backlash that comes from politics -- and I please ask that if you choose to make a comment on this you keep it clean and nice. You are very much entitled to your opinion, but please don't try to sway me from my own. I know that my opinion won't sway yours and I'm not trying to push my opinion upon you. But I wanted to share this because it struck such a cord within me...

I am very, very angered by Romney's comment. Not only am I angered, but I am infuriated and I take it quite personally, as do many of my friends with chronic and terminal illnesses.

Firstly, people die every day because they do not have insurance. I have seen and heard it all, and that is the honest truth. What about those needing life saving surgeries that doctors won't perform because the patient doesn't have insurance? What about those needing transplants in order to live another day who don't have insurance and can't afford it? What about those who NEED, medication to keep them alive but don't have the insurance or money to afford them? They don't get these things handed to them. They can't just go to the ER, as he seems to think, and ask for medications that are going to keep them alive. He gives example to a heart-attack patient. Sure they may be able to get treated for that heart attack for a couple of days, but what about the surgery that may need to follow? What about the rest of that patients life on blood thinners to keep it from happening again? What about the long term care that he doesn't seem to mention? Who pays for that????

I'm going to put this into a very personal context for a minute. If my husband did not have the insurance that he did when he was alive, he wouldn't have been living as long as he did. He was very, very LUCKY that he was able to stay on his moms insurance until he was 26, plus get covered by medicaid. Had he not been able to stay on his moms insurance, we would have been stuck with ungodly medical bills that there would have been no way we would have been able to pay them. And I would most likely be declaring medical bankruptcy at 21 years old. Last year alone, he was EASILY over a million dollar patient. And that is NO exaggeration. Had he not had insurance. There would have been no future for him. There would have been no option of a transplant for him. He would have died much sooner. (that may have been poorly worded, but I hope you got the point)

And what about those with chronic conditions? People like me who, if not on maintenance medications, who can become violently ill and cannot function without these thousand dollar medications? When medications like this aren't available to us because of the sad fact that we don't have, and cannot obtain medical insurance, and we come to be incredibly ill, we are living a life that is not worth living.

Not to mention those of us with these health conditions get discriminated against constantly. Frankly I am completely sick of it. We are denied life saving meds, procedures, surgeries. We are denied medical insurance, forced to pay astronomical premiums because we are sick, or we are forced to pay for our insurance but cannot use it for a year. If this isn't discrimination I don't know what is.

Sorry if this hits someone the wrong way. I don't believe I'm missing the point here with any of this. This may just be one issue out of many, but it's something I feel very strongly about. I can't even imagine what will happen if "Obamacare" is overruled. I am so, so SICK of our healthcare system changing. It was a MESS when Spence and I were dealing with it with his medications. Every single hospitalization, clinic visit, and trip to the pharmacy was dreaded because there was always some new loophole we had to jump through because things were changing back and forth. I don't want that to happen again. So far, Obamacare has made things so much better for me, and it made things a lot better for Spencer.

I almost feel as if one side wants to overrule it "just because". That absolutely no one has what is better for America in the back, or front, of their minds. No one thinks about the impact it's having on people right now. They just want to be the ones who are "right". And it angers me.

I don't know what's best for our country. I don't know what's best down the line. I am no expert on any of this and I would be the last to tell you what's "best". But I do know what is working for me and for my family right now. I do know what will be good for me and my family within the next 5 years. And that is what is currently in place.

Tuesday, October 9, 2012

You know what I miss??

...... Those cold nights snuggled up beside a warm body under the covers. My "human heater".
The hand that was laced in mine during movies. Walking in the grocery store.
Sitting beside the one I love.
Hearing "I love you" said a million times to the point it got on my nerves. almost.
A smile that said a million words.
Small gestures that said "I care".
3 words in a text message knowing I'm missed and loved.
The anticipation of coming home after work to my hubby.
Being introduced as "My wife".
Introducing him as "My husband".
Neck rubs when I am tense without even having to ask.
Giggles over things only we would understand.
Washing dishes together.
Watching youtube videos online.
Mentoring young teens on SBW together.
Sweet kisses shared every morning when you wake up and every night before you fall asleep.
His face being the very first thing I look at when I open my eyes.
Intimate kisses quickly shared when we're surrounded by a group of people. Friends or strangers.
Attending church as a married couple. Attending church. Period.
Looking over and seeing Nacho and Spencer snuggled together, napping on the couch.
The love of man and his dog.
Having someone understand you on a level that no one else can.
A hand rubbing my back when I'm having a breakdown.
Someone to help me when I'm feeling sick.
Someone who knows exactly what to do and not do when I have a horrible migraine.
A driving force in keeping myself healthy.
The inspiration he gave me.
Courage and strength that radiated from him when I feel weak.
A home built around optimism as much as we could.
Wearing my wedding ring and knowing he is wearing his. (gosh I miss my ring...)
Not having to second guess myself with things I never would have before.
Someone to bounce ideas off and gave me ideas back. 
A support that was unwavering. 
Being serenaded at the most random times to the most random songs. 
Getting a voicemail with him singing, "I just called to say I love you". (how I DESPERATELY wish I still had that voicemail....)
Cooking for two (or 4!)
Nightly TV shows together.
Dates with my one and only. 
Long car trips to Kansas and his dads.
Hearing him talk in his "Nacho Dog" voice.
Hearing They Might Be Giants Songs blasting from his computer.
Sharing memories together that only the two of us know about.
Having a steamy conversation on AIM while he was doing his treatment and we couldn't hear each other talk. (sorry mom!)
Looking forward to the challenge of what I'm going to get him for Christmas.
The anticipation of what he was going to get me for my birthday and Christmas.
Being able to buy something in the store if it made me think of him.
Comforting him when he cried. Being there for him when he was upset.
Being that one thing in life that kept him going when all he felt like doing was falling apart.
As everyone said, and I only recently came to believe, being his angel.
Dates at Olive Garden and Village Inn.

His smell.

His voice. 

His smile.



I miss those things that couples take for granted every moment of every day. The things that you don't even think twice about. The things I never thought about when he was alive. These are things that I loved and savored every moment of when I had the chance, but in those moments I never thought I'd never have that again with him. It didn't dawn on me that I'd miss the simple things so, so much. Almost more than anything.

Our relationship wasn't perfect. Far from it. But I am so thankful and so blessed that I can look back at it and see so many more positives than negatives. I am grateful that I am able to miss things like this. If we wouldn't have had these things in our relationship, it wouldn't have been as special as it was. As fulfilling as it was. 

I just miss him. I miss this. I miss "us". If only we could go back in time....

If only....

Thursday, October 4, 2012

Oh how I remember....

Oh the things that set a person off…

I was reading an e-mail that our supervisor sends out on a daily basis called the “Daily Diagnosis”. It talks about infectious diseases, medications, and different types of research going on. I ran across an article that was talking about how Mamba venom contains a painkiller that works just as well as Morphine but without any of the side effects. It went on to say, and I quote, side effects “...such as depressed respiration and addiction…”

I know that this doesn’t seem like a big deal, it’s just words. It’s just simply talking about a pain medication. But this is a medication that helped my husband ease into the next life and earn his angel wings. It helped his excruciating pain level. It made him more comfortable than he's ever been here on earth. It helped him not panic when we started and continued to withdraw the ventilator. As we upped the Morphine, his breathing became more shallow, or as the article states, he had significantly “depressed respiration”.

Reading those two words hit hard. I don't think it was specifically those words that did it, but just the topic in general. Morphine. A drug that I now really love to hate. The decision to allow the nurse to give him the very first dose of morphine was one of the very hardest decisions within the last week of his life. It meant that I was taking control and giving the medical team more control than they've ever had. By allowing them to give him Morphine, I was taking away my husbands ability to speak. Communicate. Move. Be involved with his medical treatment like he always has been. I was beginning the very hard process of handing him over to God. I was ending our mortal relationship in the physical sense. Everything was again changing and I had to brace myself for what was to come.

Spencer had always been in charge of his health. He may not have made the best decisions sometimes, but it was always his choice. His final call. He made critical decisions about his health long before a young boy ever should have to decide these things. And he made these critical decisions up to the very last week of his life. Choosing to have DNR orders. Planning his own funeral with his wife. Things like this that no one at the age of 23 should ever even have to think about.

But the moment I asked for the Morphine was the moment that I became in control of his fate, so to speak. The moment that I began making every single decision for my husband.  It was in my hands. I knew what Spencer wanted. We'd talked about it multiple times. It was always changing and the topic was always being brought up.... but I knew his wishes on how he wanted his life to end. Painless and struggle free. He wanted to be at peace and experience an easy transition.

Even though I knew this is what he wanted, making that decision was so incredibly hard. I remember the nurse coming in the day before he passed away. She noticed that he was moving around a lot and a little bit uncomfortable and asked me if we should give him just a little bit of morphine. At one point she even brought some in the room. But I continued to tell her, "No, not yet." I needed time with him and I knew that if he had any kind of pain meds in his system I would not get the time I wanted and needed. So I continued to decline throughout the day and she finally just told me, "well if you think that he needs it at any point in time, just let me know and we'll get it for him." I finally got some precious time with him the day before he passed away. It was sweet, intimate, and perfect. I didn't really have all that much to say to him at that point except reminding him that I loved him with all my heart and that I would be okay. I asked him several questions and we discussed a few different topics.... and then we just laid beside each other, hands intertwined, never letting go; heads close to each other; kisses on the cheek; smiles being shared when we looked into each others eyes; tears being shed as we knew... just knew; hearts beating together as one as we drifted off to sleep.

That evening as my parents drove in from Kansas to see Spencer and be with me he had his last alert moment, which I'll share at some point, but not now. It was so very special for me and my family. When he said what he needed to say to my parents and they said what they needed to say to him, he drifted off to sleep. As we were sitting in his hospital room, chatting, we noticed him moving around a lot. Getting really uncomfortable. That's when I just knew. He needed something to help him. He was in pain. He couldn't breathe right. He was suffering. Even though it was hard to press the nurse call button, I did it and asked for a low dose of Morphine so that we could both sleep through the night.

That night I slept like a baby. I woke up a couple of times to the alarms from the machines, but I got a very restful sleep. Probably knowing that he was comfortable and I had a VERY long day ahead of me, as I knew the next day, I just knew deep down in my heart, it was going to be his last. That night was going to be my very last night with my husband. It did take quite a long time for me to fall asleep. I couldn't stop looking at him rest. I couldn't help but think of the time we shared together in the last week. The very special moments we had. But I was at peace. For the very, VERY first time throughout that whole ordeal, I was at peace, just like Spencer was. I had accepted, as much as one possibly can, the fate that awaited us the next day.

On December 11th, it was a fairly slow day. I had been in very close contact with the palliative care team and expressed my concerns and both mine and Spencer's wishes. We made the decision to keep a very low dose of morphine in his system to keep him comfortable.

There was a moment that they asked me if I wanted them to give him more Morphine, but he looked really comfortable and so I told them that we should just hold off. I think there was part of me that just wanted one last moment with him. (of course one last moment would have turned into 2, then 3, 4, 5 and so on... you get the idea...) I wanted him to open his eyes and see me. Smile at me. Kiss me back. Hold my hand. But making the decision to not give him another dose of Morphine was not my brightest idea, but how was I to know?

He started coughing and when we suctioned it out of his lungs he started to bleed. A lot. It was terrifying to me. My parents had just went downstairs to grab breakfast and I immediately texted my mom and told her to hurry upstairs, that Spencer wasn't doing well. I honestly thought that was it. He was going to die right them. It was the scariest moment of my life.

I thought I was watching my husband bleed to death right before my very eyes. I was so, SO angry with myself, not only in the moment after it stopped, but for weeks and a few months after as well. I kept telling myself if I had allowed them to give him the Morphine, that never would have happened. He was suffering, in pain, and not comfortable at all. That wasn't what he wanted and I was the one that screwed it up. I really felt like I had let Spencer down by not respecting his wishes. I felt like I was being SOOO selfish trying to keep him alive despite how he felt. I felt horrible. As he was coughing he was 'awake' and just kept looking at me. I don't know if he fully understood what was going on, but I continued to tell him that it was going to be okay, not to panic, and just try to relax. He was struggling for every breath. Struggling more than I had every seen him struggle before. You could see every muscle and bone in his neck with every breath he sucked in. It was terrifying. It put tears in all of our eyes. Even my dad, and he VERY rarely shows emotion. It was awful. Surprisingly I was able to stay composed on the outside, but on the inside, as I've stated, I was beyond the point of freaking out. I was panicking. I was in a fight or flight response internally. I don't know how I kept it together. It was all for him.

But that moment really brought the big picture into place. It really made me realize everything that was going on. I was so angry with myself and so sad and scared and hurt. I decided then that we needed to get him Morphine. Not just a low dose, but a dose high enough to keep him fully comfortable. A continuous drip, whereas before it was just bolus doses. This time, I knew we couldn't stop it. I had to put myself in Spencer's position and realize that he was downright miserable.

They told me that I could take things at my own pace. We didn't have to rush into anything, we should do it when we were ready. When I was ready. To up the Morphine more to make him comfortable. To ween down the ventilator and eventually remove it. To let my husband pass away like his body was so desperately pleading to do.

I remember when the moment came that my parents and I were just watching Spence. Our chatting had basically stopped and we were just waiting. What for? I don't know. We all knew what the next step was. It was that huge elephant in the room we were all ignoring and talking around. My parents were waiting on me. I was just waiting on when it felt right. when I felt ready. But honestly. When do you feel ready for something like that? You don't. You just don't. Ever. After talking about it a little bit with my parents, I made the decision to page the nurse to get the palliative care doctor in his room to start the process. Pressing that button was so surreal to me. I was just going through the motions at that point. I have no memory of what made me finally make the decision to go on with the process. I don't know what on earth (or beyond) gave me the power, strength, and courage to press that button.... but all of a sudden my arm was reaching for it and it had been pressed.

After speaking with the doctor and getting everything ready we started the process. I think I'll stop there as I can't quite find the words to share the rest of it.... I just don't think I'm quite ready.

But my point of this whole post is that just reading those two words, "depressed respirations" and reading about Morphine brought me back. Back to my husbands final two days on Earth. I got many flash backs and just kept staring at those words, unable to look away. Unable to think about anything else. I saw his face nearly perfectly in my mind. And it was a face that I didn't want to see. It was an image when he was struggling so much... when he just could NOT breathe. It was the image of him as we were upping the morphine and weening down the ventilator. The feelings that I had came rushing back at full force. All at once. How I wanted to scream out so many times during the process, "STOP IT!! We're going too fast! This is the wrong decision!!!" The feelings I had when we had finally disconnected the ventilator and he had passed away. The words ringing in my ears when the doctor said, "we do think that Spencer has passed away now". When the second doctor came to confirm the time of death. How I so desperately wanted to yell at them to bring him back. To just do SOMETHING because there was NO way that my husband could be dead. There is no way that I just watched him die. The picture came to my mind of his lips as they started to slowly turn blue throughout the process. His face as it came a pasty white and drained of all color. How lifeless his body was. I was able to feel, again, his hands as they started to chill, reminding me that his body was not alive anymore circulating his blood and keeping it warm. Being amazed at how quickly it all happened. How fast things change. I remember knowing when it was time to leave. I told myself before hand that when he started to get cold... it was time to go, because that was NOT the Spencer I wanted to remember.

You know, I hate how I can recall memories like this so well.... relive them as if they were yesterday. Remember every detail of his face and even be able to feel my emotions and feel his skin as if it was just yesterday. Yet I cannot do that with happy memories. Fun memories. The "feel-good" memories. It drives me nuts. I just hope some day I'm able to recall those just as well, if not better, than I can recall these memories that resurface so quickly. So suddenly. And so perfectly.

Monday, October 1, 2012

I don't feel him...

I've been connecting with this blog a lot lately. I've recently shared a post on my facebook and I've read several posts lately that have really summed up some of my feelings.

The post that Cassie wrote today really pulled me in. She's talking about how she cannot feel her husband and it's something that is nearly too painful for words because she so desperately wants the experience.

An experience that so many people around me have claimed that they have had. Sometimes I wonder if people are just saying that they feel Spencer with them because they really do, or because they think it's something that I want to hear. Something that will somehow comfort me. If you really feel him near you -- fantastic. I'm happy for you. (and insanely jealous) But if you're saying it because you think it's what i want to hear.... Please refrain because you have no idea how much it hurts me sometimes to hear other people talking about an experience as personal and intimate as this.

I cannot 'feel' Spencer. I can say that I never really have felt him around me after he died. Now I have no idea what feeling the deceased is like. I've been told that when they are around you get really emotional and start crying. I've been told that you feel a sense of peace around you. I've been told that you just feel it in your heart. In your chest. I've been told that you just know.

I think we like to think of it as this comforting, peaceful, wonderful, warm, and perfect moment -- I think we (or at least I) hold my expectations way too high when it comes to feeling when my husband is around me. I think that I imagine it as this life changing moment. That the world stops and it's SO obvious that he's around. Something that I am most certain does not happen. But I have just never had that "Oh, I just know that he is with me" feeling. Ever. I cannot say that he's never around. I am sure he is. He promised me he would be before he died. But I've just never had that experience. If I have, I have not noticed it.

Through her words, I feel like she sums up my feelings behind not being able to feel Spencer much better than I could ever describe it. This paragraph is how I feel a lot of the time:

"The fact that I don't feel him around me is one so painful that I can barely talk about it. There is nothing I want more than to feel his presence. Nothing. I talk to him. I beg him to visit me. I beg the Universe to give me the comfort of his presence, even for a moment.

The fact that it doesn't happen is torturous to me. I tell myself that it's hard for energy to communicate with those of us still in bodies. I tell myself that I'm not ready. That I'm somehow subconsciously not allowing the experience. Somehow, I speculate, I might be so trained not to believe that I've discounted the subtle signs before I can even truly see them."

I do the same. I beg my husband to be with me all of the time. I don't think that he's abandoned me. Not at all. But often times I wonder if it is my fault that I cannot feel him. It's not really a guilty feeling, I guess I can't really describe it. A lot of times I truly think it is because of my current lack of faith that I cannot feel him. If I was more in touch with the spirit (which right now I am probably as far away from the Spirit as possible) I could feel his Spirit wrapped around me. (and really this could get into a whole new topic, -sigh- but I'll save it for later). I was talking to my sweet mother the other night about an experience that I had and she brought up something along the lines that I need to talk out loud to him. Let him know that I am ready to feel him. Let him know that I appreciate when he visits me. Until that night I never did think it might be an issue of me not being ready to feel him near me.

I am sure that I miss obvious signs of him being near every now and then. In my rational mind I think that it's just a coincidence... things like -- Oh the two peas in a pod? No, not from Spencer, just something that naturally happens.

I also like what she says here:

"I don't feel much of anything other than the loss, the missing, the Dave-shaped hole in me, and the utter frustration that we were pulled apart so early...... Maybe I’m just impossible to satisfy because what I want, what I need, is HIM. Not his memory or a sense of him. I want HIM and everything else is a pale and unsatisfying substitute. "

I think that this speaks true for me as well. Not literally, because I do feel other things. I mean I'm happy with my life (as much as I can be) I feel other emotions.... but kind of figuratively. In this context of "feeling" him. And I wonder if I, too, am just impossible to satisfy because I never will get what I want and what I need. The memories are not enough. The "feelings" are likely not near enough, if anything maybe they are too painful for me to bear and so I block them out.

I just wanted to write out some of my feelings to this blog before I went to bed. I want to write more, because man, I sure do have a lot to write about... I haven't been blogging lately and things have really built up. But for now this will have to do. I am definitely open to other people sharing with me who have experienced something similar... to connect with me on this level of understanding. It always helps to know that you're really not alone...

Friday, September 14, 2012

Another "family" Event.

Tonight is a summer picnic for the Infectious Disease (ID) department at ARUP where I work. I thought it would be a good opportunity to meet people in our department. Our supervisor encouraged us to go and a few of my co-workers are going so the other day I signed up to go and bring some tomatoes. 

But now... I'm just not so sure about this. And it could possibly be because of the day I had. I go on a break with a couple of my co-workers during the day and they talk A LOT about their babies, or soon to be babies. Most of them are pregnant or have young kids and babies. While I don't mind the conversation, I just can't join in because I can't relate. And it always kind of hurts when other people always talk about their families and kids because that's what I want. So badly. Spence and I wanted to start building a family, and had everything worked out (ie. he still be alive) we would probably be looking into IVF right now and be starting the journey of becoming parents. 

Well today I went on break with 2 girls and, again, they were talking about their babies. After they finished their conversation, one of the ladies that works in IDPro (a different section than I do) and I don't know very well asked me if I had kids. All I could say was "no". I mean, there isn't anything else to say. I can't really elaborate on it. If I do it turns into a whole pity Nikki situation. 

"No, I don't have kids. My husband, who passed away last year, and I wanted to have kids but were never able to because of his health..." blah blah blah, you get the gist. And after that it turns into them feeling really guilty for bringing it up, lots of questions, sometimes silence, questions about our relationship, questions if I knew he was sick when I married him, and just all around awkwardness. So I feel bad that I can't carry on the conversation much because sometimes while I would like people to know about my past (just in general that my husband passed away), I don't always want to get into the details 10 times a day to everyone I talk to. 

While I was working in the lab, one of my co-workers who I don't know very well asked me if I was going to the ID picnic tonight. I told her that I was. She asked if I was going to bring any friends or anything. I didn't know that I could and so I didn't ask anyone. She then went on to say "I brought my friend all the time when I didn't have a spouse because I didn't want to feel left out" or something to that extent. Well, fantastic. This was really the first idea that I had about it being not only my co-workers, but their families. =/ 

But just the way she said it, not even knowing that I'm widowed, "when I didn't have a spouse". But I DID have a spouse. But how am I supposed to say that. There are so many times where I want to relate to and connect with people on the topic of their spouses or being married. But I tend to kill the mood when I bring up my story if I'm asked, or even if I volunteer. That I was married. That I did have a husband. And if I don't explain that he passed away a year ago, I feel like people think that I'm divorced. And that's the LAST thing I want people to be thinking. I was very happily married. He died. It wasn't a choice. There was no option. Nothing in our relationship went wrong.

We also got an e-mail about the picnic tonight and at the end it was a reminder to bring our families and that they couldn't wait to see us and our families there. I instantly got a knot in my stomach with that line.

I really don't do the best in situations like that, yet. I don't like being around everyone who has a significant other there with them. Who has their kids running around. Makes me feel a bit left out, and definitely lonely. It makes me sad. I don't want to go by myself. I really wish I would have known that it's okay to bring friends before now. =/ I wish I had my family here, too. Bring someone with me.

I talked to my friend that works in ID with me (in a different section, though) about going to the picnic and she agreed it'd be a good idea to go. But she's not going to be there until 7 or 7:30. And she's coming with her new husband. I don't know if I'll hang around that long (all just depends) and it would be nice to meet her husband. Just stinks that I don't know anyone else in my department that is single. They all have boyfriends, husbands, and/or kids. -sigh-

Of course you want your spouse there. I finally have a job and I have been wanting to share this excitement with Spencer for almost a month now. I want to be able to take him to work related events. Meet MY friends. My co-workers. Introduce him to people that I'm around every day. Show him off because I'm proud of him and proud and happy to say that he's my husband. How my co-workers off to him because I'm happy to be working with the people I work with. 

But I can't. That's not an option now and it makes my heart hurt. Just something else I'm never going to get the opportunity to share with him. =/

I'm just hesitant to go. I don't want to feel out of place. I'm going, because I volunteered the tomatoes, but I don't know if I'll stay all that long. It depends who is there and if I feel comfortable around anyone. No one is saying I have to stay longer than I want. But I am nervous to go. I don't want to go, honestly. 

Hopefully it'll be better than I think it will, and I'm going to try to go into it with a fun and optimistic attitude. It's just been past experiences that haven't went the best for me that make me think this might be the same way!!!!

Tuesday, September 11, 2012


It's that one day of the month that I just don't really like. The 11th. The day I lost my father-in-law, my husband, and my grandma. As each month goes on, the month-a-versary gets a little bit easier. But it still hurts as it's just another reminder that they aren't here. Especially my husband. That it marks one more month without him. 9 Month today. 9 months. It's truly hard to believe!

Today wasn't too bad. When I realized it was the 11th this morning, my stomach tied itsself into a little knot and I started to let it get to me, but then I tried to convince myself that it was just another day and that it would be okay. I thought that it worked. But then I got to work and I really felt like I was in a fog all morning long. I couldn't focus. I wasn't consciously thinking about Spencer, but I know I was completely distracted from what I was doing. All because of the date and it's significance. It was kind of a tough morning just because I wanted to badly to fully focus, but wasn't able to. There was one moment where I just wanted to leave for a little bit and have a good cry when I was running a test and before I put my headphones in -- but I was able to hold it together and I got through okay.

I haven't mentioned this before, but I finally met another young widow. Not nearly as young as I am, but still young. I had orientation with 6 other people. I didn't think that I'd see any of them again, but I work in the same department (Infectious Disease) with 2 of them, Lauren and Mark. I have lunch with Lauren about every day and we're becoming fairly good friends. Well last week I was talking to Mark in the hallway. I have no idea what brought this up, but I mentioned how I lost my husband to CF last December. He nodded and kind of hesitated, told me he was sorry, and then mentioned how he was a widower. I was shocked. Something we have in common that INSTANTLY connected us. There was nothing that had to be said after he told me that. Nothing at all. We understood each other on a level that no one else can.

We just stood there for a little bit, looking at the ground, understanding the feelings going through each others minds. Understanding the unspoken words that never had to be said. Finally we started talking again about how old our spouses were, how much we loved them, how hard it is, how it is always hard, etc. I never did catch how his wife passed away, but that's okay. It doesn't matter. The fact is it happened and it sucks.

I have been thinking about him every day I am at work since that conversation. I've never met a younger widow before and I want to be able to talk about it. He's 3 years out and I want to know how he's doing. How he survived the first year. The second. The third. It almost leaves me in awe to see someone, in person, who has lost their spouse, who is surviving, and seems to be doing very well. Seems to be happy, even though internally is hurting. I know that other people think that about me, but I've never experienced it with someone else. I wonder how he made it through significant dates and etc. I just want to talk. I hope to maybe have lunch with him soon. Connect a little bit deeper on the unfortunate thing that we have in common. Maybe it wasn't a coincidence that we had orientation together. Maybe in some way we can help each other out through this. I don't know. I'm just most definitely empathetic to him and even though I barely know him -- I care. Because I know how much it can hurt. And how much it can help just to have someone to talk to that honest to goodness understands.

We exchange a nice greeting in the hallway at work when we catch each other on break and always ask how one another is doing. It always leads back to how we're doing at our new job. But I always wonder how he's doing. On the inside. Sometimes when I'm having a rough moment, I want to reach out to him. Just talk. Sometimes when he asks me how I'm doing (like this morning) I want to say, you know, I'm not doing okay right now. Because I know with those words - he would understand. He wouldn't necessarily have to say anything, but that's the thing about it. He'd understand he wouldn't have to. It's just something that no one else gets.

But anyway, I'm kind of, okay definitely, rambling on about that. I'm just "excited" about it.

I want to talk a little bit about my job because I am so happy with how it's going! I really wish Spence could be here because I know he would be SO proud of me. I want to see his face. The look in his eye. His smile. And hear his words when he would tell me how proud of me he was at how much I've accomplished in just a little over a months time. I know he'd be proud because for once, I'm actually very proud of myself.

Things at work are going great. I'm learning more and more each day and things are coming pretty familiar. I am starting to get further with my training modules and have completed about 4 of them. YAY! After they are graded and my supervisor signs off on them, I'm free to do things all by myself.

I have done 2 runs for strep-pneumo by myself and I've made 3 critical phone calls to clients about results by myself. I've done a couple of other prep for tests by myself. I'm definitely making progress and it makes me so happy! I'm still having some issues learning the computer system, but I'm getting there. So exciting! I still have A LOT to learn. But I'm finally familiar with mostly everything on the fecal side of things. Still need to learn how to run a couple of machines and get a better grasp on staining the different slides, but that will come with time. I am kind of excited to start learning the plating side of things :) I just want to know how to do it all!!!!

So grateful for this job, this condo, and everything that has been going right. I know I've had some rough days and weeks lately, but it all comes with this journey. It's going to happen.

I've been feeling a need to go to Orem to the cemetery and visit Spencer's grave. I think I'm going to try and go this Saturday. If any of his friends or family would like to join me, Please do. I will probably go down by myself, so I can spend a littttle bit of time there on my own (unless it's family who can't drive, then you can most definitely go down with me!!!!!), but I'd love some company. I want to talk about him and remember him with people who knew him, too. So please, let me know if you want to go on Saturday. I understand it's a bit of a drive. Totally get it. But it's worth it. It's Spencer. I can plan to meet you there. <3 nbsp="nbsp" p="p">
ALSO, one last thing, (whew this blog is longer than I planned)... I am done with my phlebotomy class!!!! I took my test and passed with 100%!!!! :) So now I am doing my externship. If anyone would like to volunteer to help me out, please let me know. I need at least 15 more sticks. I need people to be willing to come into the classroom with me (around 6:00, any day mon-friday) and volunteer for me to poke you to draw blood. I can poke you only once, or up to 4 times. I don't care :) It's up to you how much you're willing to let me :-P But your help would be appreciated!!!!!

Sunday, September 9, 2012

How could I?

Spencer has been on my mind every moment of every day since this last Thursday. Thursday morning I sat down on my computer before work and decided to look through Spencer's facebook profile pictures. This started what has been a very long few days of a deep ache for my husband. I am not overly sad. I am not having awful emotional pain. My heart doesn't constantly hurt with grief. I just feel a heaviness on my heart that hasn't been there for quite awhile. That is up until this very moment. I'm finally expressing some of this heaviness that I feel and it's finally turning into hurt, longing, and sadness.

There is this thought and realization that continues to loom over me that, "Oh. He's really, really not here anymore." and "He really was alive at one point. My faint memories aren't dreams. I was one of the biggest and happiest parts of his life, too." Also creeps into mind. The pictures are my proof that he existed at one point -- because anymore, my memory isn't good enough to convince myself he was truly here. 

But how can I forget? I ask myself this question constantly. How is it possible that I have forgotten so many things. That our past together is such a blur and feels like a dream that I was in, instead of something that I experienced for years. 

How could I possibly forget the way that he looked at me? When he was proud of me. When he was happy with me. The look that showed me how much he loved me. The look when he was in awe.

How could I forget the way he kissed me? So tenderly and with so much meaning. A kiss could say a thousand words that weren't able to be said. How could I forget the touch of his lips on mine? The way he ran his fingers through my hair. The gentle caress and hold to show he cared.

How could I forget his smile? The lines on his face. The way his eyebrows were always in 4 different directions at once. His crooked teeth. His pimples. His eyes. Oh his big, eyes, that I have a hard time even recalling the color of anymore. The little imperfections upon his face that made him unique and perfect in every way. 

How could I forget the fun that we shared? Even on the gloomiest of occasions. The way we tired to make the best out of the worse situations we faced. What other choice did we have? The way we were always joking around. How quick-witted he was to about everything anyone said. He jokes he cracked. 

How could I forget the understanding that we had between each other without even saying a single word? The comfort level we had with each other. The sympathy, and empathy, we both had. How could I forget the way we were so easily able to express feelings to one another without worry what the other would think?

How is it possible to forget the way that he made me laugh? The things he would say. The looks he would give. How could I forget the way we laughed together. The way his laugh sounded. 

How could I forget how much he loved being an uncle. How much he loved his little nieces to pieces. How much he talked about them and wanted to see them. Even though they annoyed him at times, he still enjoyed their company. He loved being an uncle yet I have forgotten just how much.

And how could I forget how much he LOVED his family. His brothers. His sisters. His parents. He was so proud of his siblings. They meant the world to him, truly. How could I forget the love that he had for each and every one of them?

And how could I possibly forget how much I meant to Spencer? How in the hell have I forgotten how much he loved me???!

How could I allow these memories to slip away? To fade from my mind? With time the ability to recall his name. His face. His quirks. His love. His EVERYTHING is slowly fading away. I can no longer think of Spencer and have a perfectly, pristine, and flawless picture painted in my mind. It's hazy and so many details have been lost. I have to rely on photos and accept that they are the closest way I can get to recalling his appearance and the memories that I have of him, and that we shared. And it's only been 9 months since I was last able to took at his face.

This terrifies me. I am trying SO hard to hold onto every little ounce of Spencer I have left in my mind, but no matter how hard I try, it all just slips away. New memories fill old ones. New experiences push back the ones that I want to keep closest. How much am I going to lose with everything that I gain? I only spent 3 years with him in person, and I have 70 or 80 more to live. I don't want to lose anymore of him. I've already lost the most important and significant part. What if pieces continue to slip away and I'm left with nothing? I don't want that to happen. That can't happen. 

I want to be able to recall memories and moments like they were just yesterday. But I can't anymore and that's because the big fat truth is that they weren't. They were over a year ago. Can you believe that? OVER A GOSH DARNED YEAR AGO! It was over a year ago that I was able to spend any time with him outside of the hospital. A year ago this month he got critically ill and I wouldn't ever get the opportunity to walk out of that hospital with him ever, ever again. Last September my life changed in ways I never thought imaginable. My world stopped turning and I was living on autopilot trying to save my husbands life. Last September I started grieving because deep down I knew things were serious and I wasn't ever going to get him back. 

I knew this month would be hard. I was doing okay.... It wasn't up until I stopped to look at him... to study his pictures that I realized what I have truly lost. I realized that I haven't looked at pictures of Spencer in over a month. I haven't been able to talk about him in over a month. Ever since I moved out here he's been a distant part of my mind. (aside from moments when people tell me how sorry they are and pity me for my loss). I have no one to talk to about Spencer. No one knows him like I did. No one knows him, period. Only my closest friends here (2) and his family know how much he meant to me and know the relationship that we had. I can't talk about him to my co-workers. To my new friends. They didn't know me when Spencer was part of my life and so I can't talk about him like I wish to. 

I would love for someone to sit down with me and be completely open about Spencer. To be able to remember him and talk about him like he was still here. But I haven't been given that opportunity.

I wish that someone would be willing to go to Spencer's grave with me and share stories about him. Remember him. Keep his spirit alive. Someone who I feel close enough to to be able to cry around. To be able to let it all out around. Perhaps someday I will ask someone. But it would be nice if someone would approach me about it instead. So I can know that he still gets visits from those who cared about him most. 

I just miss him. And it's so hard to express how much. I have so many people tell me that they miss him too, but it's all on a different level. Only the ones who were truly so close to him really know what it's like to miss him like I do. I wish he could be here with me. I wish we could still travel the journey of life together instead of me having to navigate it alone. 

I love him with all of my heart. He left a huge hole when he died. I can only hope that one day this hole will be filled with the good and the joys of life and that one day I will be OKAY with this hole getting filled instead of being scared of it being filled and erasing the past......

Wednesday, September 5, 2012

Work, Moving, and Fun

I haven't written in my blog for a little while and so I wanted to just give an update... I have started about 3 or 4 different posts but I never could find the words I was looking for and so I have several saved drafts. Maybe some day I'll get around to finishing them since they are all on different topics ;-)

I just feel like I've been non-stop busy! But it's been the good kind of busy, really. By reading more you'll see!

New Job:
I am happy to say that this week is definitely going better than last week. Last week was by far the most difficult week that I've had since Spencer died. Hands down. Yes, I've had hard moments and even days, but nothing as extensive as last week was. It was just horrible. Starting out with being reminded he's gone, being completely overwhelmed with information, to ending the week with locking my keys in my car, walking home in the rain, and then remembering I'm locked out of the house as well until my friends get home from a birthday party. It was just horrid. I had a lot of anxiety on Monday (I had the day off) about going back to work on Tuesday. I wasn't sure where the lab coats are kept and I was panicing about getting lost finding them. LUCKILY I must have remembered something because I very easily found them and I haven't gotten lost once this week! I'm making progress!

Yesterday one of my co-workers helped me out a TON by helping me print out me training modules and giving me a MUCH better idea about what I'm going to be working on day-by-day in the lab as I'm training. Yesterday I did a lot of observing, and then did a few tests under observation.

But today was a big day for me! My trainer for the day had me run strep pneumo antigen tests on Urine. (for those interested, and because I want to feel smart!!, a strep pneumo infection can lead to things such as meningitis, pericarditis, endocarditis, arthritis, etc). Since I observed them being done yesterday, I was able to run the tests by myself today under observation! This is a critical test (meaning if there is a positive result it's life-threatening to the patient) and so if you have a positive result you're responsible for calling the client within 15 minutes after verification of the results. Which leads me to why it was such a huge and successful day for me! :) I observed 1 critical value call yesterday, and 2 today... and so I was qualified to make the phone call today to our client. If any of you know me very well, you know that I am terrified of making phone calls (and sometimes even answering them...). I HATE talking on the phone. I get so, so much anxiety leading up to it, when really, after I've made the call it isn't so bad. So I was really stressing out about doing this call.... but at the same time was feeling confident in it since I'd observed 3 previously.
Turns out -- everything went just fine! I did wonderfully and it really wasn't a huge deal at all. I was really proud of myself for *hopefully* not showing my anxiety and just diving in and doing it. (after, of course, writing out a short script to go by HA!)

Today I was also able to do a batch of O&P (ova and parasites) testing by myself (well, someone made sure I started out okay, but it was just someone watching over my shoulder!). I'm starting to learn the steps on my own without having to be prompted -- something I'm proud of! I feel like I'm catching on fairly quickly. I ran another test as well (well most of it), but I can't remember what it was.

I am still having issues learning the computer systems that we use... But I haven't used them very much.  Towards the end of the day I was starting to recognize the icons and kind of remember how to get to certain things. Picking it up slowly, but surely.

So overall -- I am liking my job :) It's stressful and very overwhelming, but a lot of fun when I start picking up on things and am able to do it by myself. My co-workers, so far, have been wonderful and very helpful. I'd be lost, VERY LITERALLY, without them!

So I am so happy that I can finally say I've MOVED and it's no longer temporary! I am SO excited to be moved in somewhere. It's fantastic. I was looking on KSL and wasn't finding too many places that would work out for me. A friend suggested and upon checking it out, I immediately found a listing that sounded PERFECT and so I called right away. They seemed very interested in me, and so I looked at the place that weekend and got the green light to move in the next week! I am now living in Salt Lake City, only about 5 minutes away from ARUP which is fantastic :) It is a condo and it's a very, very nice place. It is pretty small, but the way things are set up makes it seem much bigger. my room is VERY tiny, but I'm making due. It's cozy and a space that is completely mine where I can relax if I need to, or just do whatever I need to do.
We have a pool which has been lovely! I've been lap swimming and I'm loving it. Finally a work out that I can do that I WANT to do and that I really enjoy doing. It doesn't feel like a work out. It's relaxing and a lot of fun.
The only downside of where I live = the walls are paper thin! You can hear EVERYTHING! I am SO thankful that at night, everyone is very quiet. I have never been woken up by noise. But during the day is another question ;-) It really doesn't bother me too much, it's just something I'm trying to get used to. You just can't have it all ;-)

Tomorrow is my last phlebotomy class! I feel like it's went by so quickly! I get to take the test tomorrow. We are going to work on butterfly needles, finger sticks, and general veins tomorrow as well. I've really enjoyed this class. I have wonderful classmates and amazing teachers. I am definitely nervous about it being over, but I still have an externship to do. And knowing that I can come back at any time and practice drawing blood is nice and puts me at ease. I can practice all I need to so that I can be comfortable with what I'm doing. I still don't feel confident with drawing blood on people who's veins are a little bit harder to find. I haven't been too successful with that. =/ But it just takes practice with palpating to find them. My figure will eventually be able to hone into where the veins are. Practice makes perfect!
I have volunteered to do a health fair at Sams Club on Saturday where we will do finger sticks to do cholesterol checks for people. It will count towards some of my externship, will be great on my resumes, and be good for experience. I'm actually excited for it :-)

Firstly... I LOVE Acappella. The power of the human voice is amazing. The things these people are able to do with their voice is amazing. Everything about it is AMAZING... So Aug 25th I went to Acappella Stock in Ogden and It was SO MUCH FUN! I'm really bummed that I, once again, had to go by myself, but it was worth it. I had a great time. They had some great groups there. Eclipse, T Minus 5, Delilah (from The Sing-Off!), The Bobs (I honestly wasn't a huge fan, but still good entertainment!). Delilah is an all-girls group and definitely at the top of my favorite list!! Their sound was AMAZING. Their range is great. I can't even describe it. Unfortunately my video isn't very good for their group, but please check at least two of their songs (two of my favorites! Aren't they AMAZING?)

Eclipse also comes in at the top of my favorite list. They are from Utah and I have been listening to them every single day (nearly!) since ACappellastock! They are GREAT. I don't really have the best video from them either, but here is a Youtube video of one of my favorites :)

So there you have it! If I get a chance I want to post another blog with pictures and some of the better videos I have from that night... These groups really know how to entertain the crowd!!! :)

I am also SUPER excited to go to a Train concert September 20th with my friends Adam and Christine! :) It will be so very fun!! And I can't leave out the day before, on the 19th, I am going to a "The Piano Guys" concert at Red Butte Gardens! The Concert will be recorded for PBS. Tickets were only $25 for about 2 hours of entertainment and I am in LOVE, IN LOVE with The Piano Guys. I am so excited!!!!! =D Does anyone in Utah want to go with me on the 19th? Please let me know because I'd love to have a friend go along! So much more fun that way!!!

Tuesday, August 28, 2012

Rough Day

I could blog about something really happy and positive right now, sure. But I honestly don't feel like it. I had a really rough day and it's all that has been on my mind. Don't get me wrong. I'm happy - very happy. Things in my life are going WONDERFULLY right now. I don't think they could be more perfect. I am very thankful for everything I have and etc.

But today was hard. And those hard days really play their tole on me, especially when they have to do with grief. Despite everything I am thankful for and the fantastic life I have going for me, I need to take a moment to just write. To accept these moments of pain, hurt, and grief that come with being a widow. I tell you what, grief wipes everything out of you no matter what it constitutes of. Especially if you fight it and don't let the emotions out when you feel them. The "sad" emotions that you felt earlier in the day are now turned into anger, or guilt, etc. That's one reason why it's SO important to feel the emotions when they come. Not hide them.

But today was one of those days where I had to hide my feelings and couldn't fully embrace what I was feeling. It wasn't appropriate to start crying or take that moment for myself and take a 'bathroom break'. I just started my new job on Monday. I've been doing orientation and tomorrow is my first actual day in my department. During orientation we've been doing the basic things. And today involved a lot of computer time with training. We were getting instruction on how to get to specific spots on the computer and I couldn't just leave because I was having a 'moment'.

Talking about all our different options we can sign up for.
Benefits -  This is finally a job with benefits that could have supported both Spencer and I and have been very, very affordable. This could have given us what we needed to get by. Without the stress and worry. Finally. And now that I have it? He's gone.
Emergency contacts - Has automatically been Spencer for 3 years. Something I never hesitated with. If something happened to me, I wanted my husband to know about it first and make the decision about what should be done. I have no problem listing my parents, except for the fact that they do not live in Utah. They live 12 hours away. I don't want them to worry. 
Beneficiaries -  Of course this kicks up some feelings. I always thought I'd outlive Spencer. It was just kind of an understood thing in our relationship because of his terminal illness. But still, if something awful were to happen to me, I would want my husband to get the money. I have no problem with my mom, she deserves any extra money more than anyone I know... but it's still the fact that I don't have a husband to leave it to. I don't have a family. I don't have that anymore and it hurts to be reminded of that.
Spouse - I want to sign up Spencer for everything. To me, I still have a spouse. I hate that I can't do that. I hate being reminded that he is something I no longer have. I hate having to completely ignore that part of things now. I hate that people assume I am just single. That I don't have a past. That I am just your average 21 year old instead of a not-so-average, been-though-everything, widowed 21-year old. 
And the stupid little section on the computer screen that only gives you the option to be "married" or "single" - Legally I am no longer married. Legally I am single. But in my heart? I don't feel single. I am still very much tied to my husband, deceased or not. Even though I hate being labeled as a widow.. It's what I am. It gives me a defining term that I feel more comfortable with rather than "single". 

And not only those things... But I have been meeting so, so many people. I have been getting to know many people and they ask me about my life. The basics. You know -- what most people can answer without even having to think about. But asking me about my life... about why I've moved so much etc etc is a question that makes me think. Questions that I seriously hesitate to answer. What should I say? When is it appropriate to disclose that I lost my husband? How are other people going to react? The outcome of how ever I choose to answer in the moment is one of two things: either awkward, or feels very incomplete.
Awkward because of 1) How I say it and act to their response (sometimes I feel like I'm "too okay" with it when they freak out) and 2) how they choose to respond. "I'm Sorry" "I didn't know" "You're so young" "oh my gosh I am so sorry. Wow. I'm sorry (and it goes on)". There is no easy way to bring it up without having some kind of awkward moment between me and the person I am talking to.
It can feel incomplete because in the moment, for whatever reason, I choose not to disclose that I'm widowed. But then I feel like I'm leaving out such a MAJOR part of my life. Spencer was, and still is, a huge part of me and my life. My past, present, and future. He will ALWAYS be with me. In my heart. And so it's hard when I feel like I can't talk about him. Because I want to be able to talk about him all of the time. Like he is here.

It's definitely a balance. A very hard balance. It's an answer that is going to take a lot of time and practice to perfect. And even when I am able to come up with an answer and a way of saying things that is comfortable, in a moment under the pressure of answering questions about my life, I will most likely forget the answer that I want to say.

It's that elephant in the room that is always going to be there. With time it will get easier to deal with. But for now, it's hard. I've never been around so many people, meeting so many people, and having to make small talk.... Everyone else's small talk is my "really-big-life-changing-talk"... or something to that effect. You see what I'm saying??

There is a lot of times that I'm talking to someone around my age and they just got married... or are going to get married. (in fact a girl that was orienting with me just got married 2 weeks ago and we spent a lot of time together and I had this situation....) I want to relate to them on that level. Because it was a huge moment in my life. A very special moment. I want to talk about my wedding day too. But when I might start saying something about "oh when I got married..." "yeah my husband..." etc. They don't see the ring. They haven't heard me talk about my husband at all. They assume that I am single. They are taken off guard. They ask the questions. Which leads to the answer that I am just not quite sure how on earth to answer so i'm comfortable with it.

It's all just hard. An adjustment I didn't even think of. I was so excited about everything, which I should be, that I didn't expect or plan for these events. And there is no amount of 'planning' that you can do... because in the situation it's so, so much different.

I just hope that with time (preferably quickly) things will go a little smoother. My co-workers will learn a little bit about my past in the most comfortable way possible... and then it will blow over and we'll all be normal. Hopefully I won't be labeled as "that poor girl" "the widow" or various other hurtful terms. Hopefully tomorrow is better and everyone is able to focus on WORK and not my life, you know? I don't know if I can deal with another day like today....

It was a hard day....