Wednesday, November 30, 2011


Ok ok - so I get why people will say "things will get better. I know they will". It's out of optimism, support, and care. They need something to say so somehow it will make things better... right?
I'm sorry but telling us that You know Spencer is going to get better and everything will get better is really starting to bother me. It doesn't make me mad... it just is kind of one of those small annoyances. It's one of those phrases that people say to help support someone but they really don't get the weight of their words unless they've actually been in that position and realize what those words really mean to the sick patient and caregiver.
Telling us it will get better is just like telling a terminally ill cancer patient who they can't do anything else for that it will all get better and not to worry.
There isn't a difference. You're telling a terminally ill, end stage, Cystic Fibrosis patient who's only chance of survival is a double lung transplant which, by the way, isn't at all guaranteed and who's not even yet been evaluated that things are going to get better. That you know they are going to get better. No one know's he's going to get better, guys.
It's easy to say these things.... It's easy to just feel like you should say something and so you don't actually think before saying it.
All I'm asking is that you truly think about the situation and don't speculate before you say something. I'm not trying to be rude or ungrateful... I'm just trying to tell it as it is. As I feel it. I'm entitled to my opinion.

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

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

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

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

The holidays are really hard this year. I want them to be so enjoyable and more... But It's super hard on me because I am so torn. I want to and need to be with Spencer. It could be our last Christmas together... But I really want to be around my family. But there is no one I'm leaving Spence here by himself.
I am going to be here with Spencer on Christmas. And I am trying to think of every way possible to make it such a memorable Christmas. We have been blessed to have some 'extra' money since I am babysitting a little bit and since we are finally getting the SSI that we are supposed to be. The last 2 months I have also stuck a little bit back into savings... I've decided I'm going to use it to make Christmas memorable. Wonderful. Spectacular. I think we deserve it. If we can't do anything else, then we deserve to treat ourselves. If this is going to be the last holiday we spend together... it's going to be good. And I want to know i've tried my best to make it that way.
It's just been hard because I had so many thoughts and ideas that we could do together this Christmas.
We both really wanted to go see the lights at Temple square... We've been wanting to do that for 4 years now... Never have gotten to because he's always been sick. We wanted to take one of the carriage rides around temple square on the horses. (That's originally how he was going to propose to me... until I figured it out haha) We're finally in a place of our own and so I was really looking forward to putting up a Christmas tree - decorating... Making our house festive.... I'm still going to try to do this at the hospital. But it's going to be VERY downscaled and he can't help me. I wanted to Christmas shop together. Luckily we got to do that together last year... But still.

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

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

Friday, November 25, 2011

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

I want to be home. I don't want to be home. I want to be at the hospital. I don't want to be at the hospital. There is nothing for me at home but a messy house that just needs to be cleaned. No one to come home to - no one to talk to. No one to do anything with. No motivation to clean, not even a desire to clean - maybe the thought when I'm at the hospital to clean sounds good, but once I get home and notion goes straight out the window.
There's not too much at the hospital for me either. I get to sit here and watch Spencer sleep for 10 hours a day with maybe 20 minutes at a time where he's awake and we tend to just stare at the blank wall anymore. This is all we've known for the last 2 months - the conversation has run dry. There is nothing new to discuss. We're sick of doing the same things every single day in and out. What else can you do when the one you love is basically bed bound and feeling sick 24/7. So I sit here. Because I don't want to be at home. I don't want to leave Spencer here alone.
We very rarely get visitors, but that's no surprise. Never really have gotten visitors. Guess people don't really understand that Spencer is dying and it's only a matter of time. One can always hope that he'll get new lungs... One can pray that's the case, but we're never ever going to be guaranteed. Even if he gets on the transplant list - it's not guaranteed it'll happen. People aren't grasping that the time to Spend with Spence is now - not later. There might not be a later. I understand it - I know our time is short, transplant or not. I'm here every day.. but I'm getting tired. Weak. My courage and strength is fading quickly every single day. Every day I'm here I continue to feel like I just can't do it today. That today is going to be the day I just kind of "quit". Quite being positive, quite being optimistic. But then, somehow, by some miracle I pull through. No idea how it happens. I look back on the previous day - NO IDEA how I ever made it through considering all the emotions I went through.
Everyone calls me so strong - well thanks... but I sure don't feel like it. You don't know what goes inside of my head... what I do when I'm by myself. If you knew - strong wouldn't be the word to describe me. Maybe once - but not to much anymore.
But you know... I really don't want to be at the hospital anyway. I hate it here. I hate seeing the same people every single day - who tell me they are sorry for me. Sorry for Spencer. Sorry for our situation. Ok your sorry - but what do I say to that? I'm sorry for us too. it sucks. Be glad you don't have to live it. Sure i'm thankful for the people who are kind to me - but when you see the same people every single day you tend to get bored of it too. I don't want to be at the hospital because I get upset. I get mad at Spencer. Not rational to be upset at him - he can't help it. He'd change it if he could. But I get really mad because he's sleeping all the time. He doesn't talk to me anymore. He says he 'can't talk' because he's on the ventilator. He CAN. I can understand him. But yet he won't say anything to me. So I get angry at him. And I shouldn't. I mean what can he possibly say to me anyway? he does the same thing every day. Doesn't even get the joy of seeing the outdoors. Feeling the crisp breeze. At least I get to do that. I shouldn't complain about it. I don't want to be at the hospital because I'm sick of the food. I've eaten the same food for 2 months. I hate the weight i've gained because of it. I just hate it.
I feel guilty being away because Spencer can't. He can't do the simplest things that we take for granted. He can't even sit up for more than 30 min at a time. It's not fair.

When I found out Spencer's Co2 levels went up again it really hit me hard.
It's only going to get WORSE until he gets new lungs. If and When he does - because as I said before, it's not a promise he will. Never ever will be. How the heck am I going to make it through. I just do it because I have to. Because I love him and that's what wives to. I made a promise to him to stick by his side no matter how sick he gets. I WANT to be here for him. It's just hard. The hardest thing I've ever in my life had to do. I don't know how anyone else does it. How am I even supposed to be happy when Spence is dying? WHY is he dying?! Why my husband, who I feel i've barely even gotten to know.

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

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

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

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

Thursday, November 24, 2011


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

1) My husband is alive
2) Kalydeco and Vertex... enough said =)
3) Dinner was brought up to us
4) My family
5) My mom and her amazing support
6) Sally and her help with fundraising
7) Not having to take classes with everything else going on
8) Advancements in medicine keeping my husband alive
7) Competent doctors and nurses
8) Charlie Brown Thanksgiving
9) Every little moment with Spence that brings a smile to my face
10) Nacho is home safe and sound
11) Duke is willing to look at Spencer's case
12) Donations and gratitude of friends & family
13) A place to live with minimal rent
14) A car, after everything we went through trying to get it!
15) Social security finally got figured out
16) Insurance is paying for all of transplant as far as we know
17) Warm weather yesterday, allowing my joints a short break
18) A very happy baby every week that I babysit!
19) My friends Christine and Adam and the way they have been helping me out
20) My true friends, in general
21) Spencer gaining weight, finally!
22) Being baptized in this wonderful Church
23) Getting married to the love of my life
24) Mom being able to come out to help me for a week
25) My family being able to spend thanksgiving together, even if it was without me!
26) The strength I've been giving through this troubling time
27) Everything I've learned about myself the past 2 months - good or bad
28) My Crohn's has been stable through all of this craziness!!!
29) Knowing what I want for Christmas - more than a week before (finally!)
30) I have not caught a cold or the flu yet -knock on wood-
31) CF Wives =)
32) Netflix and Hulu for all my late night TV needs lately =)
33) Finally learning how to knit and getting into the crafty mood
34) Understanding. period.
35) One of my friends husbands just got the okay for a double lung/liver transplant!!!!
-Read more about their journey, HERE and you can donate, HERE
36) Optimism, even what little I might have at some points
37) My mother-in-law is doing well in her fight with breast cancer.
38) My Aunt surviving breast cancer
39) The good times with my kitty even tho she's now gone <3
40) The times Spencer and I spent OUT of the hospital this year
41) Meeting new friends this year (Malina and Emily & Jesse)
42) Glad my new friend Emily and her husband are FINALLY out of the hospital enjoying today at HOME after over 4 months of being in here!
43) My faith
44) Being able to finally get a new computer, even if it was with loan money
45) Social Networking.... you all know you're thankful for it too!
46) Laughing late at night with my sister
47) Playing a million omgpop games until my eyes go funny with my sister
48) Fishman ;-)
49) a couple heart-to-heart talks with sister
50) That I have the best little sister ( I think she needs her own category on my thankful list!)

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

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

Tuesday, November 22, 2011

Catching up...

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

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

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

Thirdly - I am currently thinking of the next fundraiser I want to tackle. I think for the short term I want to create some t-shirts to sell. Firstly we need to create a website, pick out our "official" fundraising colors, create a slogan-type-thing, and get someone to draw us a pretty cool set of lungs ;-) Kind of like a logo. Once we get that all done I will start taking orders for t-shirts and start selling them with all the profits going towards the transplant. So if anyone knows of anyone who would like to make a logo for us let me know! =)
I also really want to start an Etsy shop - I enjoy crafting quite a bit, I just need to spend some time actually doing it! I know it won't make much, but what little does come in will all go towards the transplant as well.
For the next 'big' fundraiser I want to do - I am thinking about one of two things.
1) Geocaching Scavenger Hunt/Poker Run..... not 100% sure how it will work nor any of the details... but I've been pondering about it! Geocaching seems to be big around here and so I thought I'd use that to our advantage.
2) A talent show kind of themed on America's Got Talent. Have some people who could really play it up be the judges, have the audience vote... etc. I haven't thought about this one as much as I can see it taking a lot of work - but it's a possibility!

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

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

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

Saturday, November 19, 2011

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

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

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

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

Thursday, November 17, 2011

It's a Breakdown Kinda Day...

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

Something really hit me hard today... This could very well be the rest of our life together. Being in the hospital, him on a ventilator. I might not ever hear his voice again. May not ever get to experience a day out with him ever again. God how I wish I could just go back and handle things a little bit differently... But don't we all?
The only chance that he'll be able to come back home with me is if he gets a transplant and I'm feeling really discouraged about that right now. Of course we don't know what will happen - we can't... but with him being on the ventilator things are becoming very complicated. Finding a center to accept him is really hard. Duke has told us they would be willing to look at his case, which is good - but that MIGHT be our only option. I still haven't contacted Cleveland or Barnes. Or rather - they haven't contacted me back. Today I was planning on calling them both and getting more information but I can't bring myself to do it. I don't have the strength today. I guess that's ok - but it does really need to get done.

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

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

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

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

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

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

Wednesday, November 16, 2011

How to Donate

So to start off this blog post I want to include some information that so many people have been asking me!!!! I've had several people ask me how to make a donation to our efforts in funding a transplant for Spencer..... Well - here is how!!!

There's 3 options:

1) You can go into any Zions Bank and tell them that you want to make a donation to the Spencer K. Riddle Donation Account. They should be able to guide you from there

2) You can mail a check to this address:

Sally Rollins

1112 N 3000 E

Layton, UT 84040

And make it out to the Spencer K. Riddle Donation Account. She will make sure it gets deposited in the account!

3) You can hold off for a few weeks until we get our official fundraising account set up with an organization called COTA. After that is set up you will be able to make a donation online.

It is all up to you! All of the money will go toward the exact same thing so it's just your preference!

Cool =) Now that we have that taken care of.. I want to remind everyone that this Saturday is the benefit dinner and auction for Spencer!!!! It's only $12 for a nice meal and some entertainment from a live band =) Don't forget that there will be a silent AND live auction as well. If you can't make it to the dinner, please consider coming to one or both of the auctions!!

Silent Auction starts at 5:00 PM

Dinner is served between 6 and 6:30 PM

Live Auction starts at 7:00 PM

I would LOVE to see you there! If you're interested in purchasing tickets to the dinner, please contact:

Sally Rollins: 801-450-3736

Now that we have that taken care of - it's time to reflect on what I'm thankful for.

I am so excited and thankful that my friend's husband, who has CF, just got the green light to be listed for a double lung / liver transplant!!!!!!!! Kelly has been a huge help to me in our journey to finding a center for transplant and just going through the process. She's been there for me even though they themselves have been going through the process and evaluation! They just found out today that it will be a go!!!!

I get so encouraged reading and hearing about people who have been successful in being listed and going through with it even though their cases are complicated.

Kelly is blogging about her and William's journey HERE, so if you have a chance check out their story and leave some love =)

CONGRATS William on being listed!!! Best of luck to you two and your in my continued prayers that things keep going well and you have lots of success fundraising!! =)

Tuesday, November 15, 2011

A moment I cherish...

Today I'm thankful for the time spent with Spencer. He's just simply amazing. Such a trooper and fighter.
I babysat all day today and was really anxious to get up to the hospital to see him. He had surgery today for the PEG tube they put in and I was assuming he'd be sleeping. But when I got there he woke up and I talked to him for 1-2 hours... It wasn't even about anything specific really. Just how my day went and a few things about transplant. We seemed to actually have a normal conversation! We haven't been able to talk a lot lately because there has been nothing to talk about since i've been up at the hospital about as much as he had.

For a moment there - things actually felt 'normal'. We were both smiling and giggling. I was telling him about the two super cute boys I babysat for the first time today. Not that being in the hospital is normal. But we were uninterrupted and able to just talk. Be ourselves. Those are the kind of moments I absolutely cherish and cannot get enough of. Moments I won't ever forget. I'm not ready for those conversations to end. HE NEEDS NEW LUNGS! We need a new life together. One that doesn't revolve around hospitals every week. I just want at least one super good year with him in which we can explore things we've never ever gotten to explore before. I think we deserve that...

Monday, November 14, 2011

The Joshland Rap!

Today I am thankful for awesome people like my friend Josh who dedicate their lives to helping kids and adults fight Cystic Fibrosis with a positive outlook!

You can learn more about Josh and what he does here.

You can read and follow his blog, here.

And the coolest thing you can check out is the new Joshland Rap that he just put together here!

Come on friends! Check him out, share with your friends, and show him some love!

Sunday, November 13, 2011


Not going to lie - today was hard. It seemed like nothing was going right... But I am still thankful!!

I am thankful for direction. This whole transplant process is becoming more and more complicated and stressful. Found out today that things should be moving along pretty quickly. I think a lot more quickly than I have expected. We haven't really known where to turn for all of this. We haven't known what steps have needed to be taken when. Today I finally got some direction as to what needs to happen next with the transplant process. I'm feeling a lot better about it... But each and every day things are becoming more and more real for me. This is happening. I have SO many mixed emotions I can barely set them straight.

Part of me is VERY excited. Just the thought of new lungs and being able to live life with Spencer to the FULLEST with him being able to BREATHE is amazing to me. Beyond something I can even fathom. I was happy and content (to an extent) with Spence when he couldn't breathe well, had to be on oxygen, had to stay home at times, got sick all the time.. I can't even imagine what it would/will be like with him when/if he gets new lungs! I've never known him any other way. My heart jumps for joy thinking about it.

I am also very scared. Beyond terrified to be exact. I mean who wouldn't be. I am worried I might lose him. NO ONE can tell me that I won't. You never know what will happen... when it will happen as we have known the last 2 months. Reality is starting to set in too. This is going so fast... I don't have very much longer with him before we start the evaluation and get him listed!!!!! I hope that I have YEARS with him AFTER he gets lungs... but in all reality - I could only have a few months left. wow..... Just saying that makes my heart skip a beat. You see what I mean = terrified.

How does one even begin to cope???? I can't even think straight. I can barely even type how I feel because my mind is going a million miles a minute. Just as I am typing this I am finally seeing the magnitude of everything. Holy. Freaking. Cow. This is why I blog. So I can set my mind straight. THIS IS REALLY HAPPENING. so soon..... Everything just kind of came at me in a matter of seconds. I feel like I've been hit by a freight train. Whewwww

At any rate.. I'm thankful for the direction We're now getting from the docs... hopefully it will take us far...

Saturday, November 12, 2011

Thankful Day 12

I notice a theme with what I'm thankful for every day. I think I need to start digging a little bit deeper here!
Soooo even though I am NOT a fan of winter, the cold, or the snow - I am going to go out on a limb today and say - I am thankful for the snow... the BEAUTY of the snow. I really enjoyed staying inside today, watching a beautiful baby while watching the snow fall. There is something really mesmerizing about it. It's really beautiful, especially watching it fall with the mountains in the background. I am so thankful for where I live. I love it - It's absolutely beautiful here. I am also thankful for the snow because I am not a fan of bitter cold weather with no snow. There is just something about it that I really dislike! If it's going to be cold - lets have some snow!!!!

Friday, November 11, 2011

Thankful Day 11

I am feeling so thankful right now. I think I've posted about it before but my heart is overwhelmed with gratitude. We received a very generous gift from a couple today who is also going through their own hardships here in the hospital. These are people I barely know, have only met a month ago. I also got word from someone who I am going to keep anonymous that they are going to donate a *very* generous gift to our transplant fund. It left me absolutely speechless.

We are becoming very humbled with all of the generosity. We are touched and blessed beyond words and to the point of tears. How can we ever possibly repay those who have been so kind to us in our time of need. What stuns me is the people who are giving and helping us out who a) are complete strangers, or b) going through trials of their own. The fact that they think of us, pray for us, gift to us is very selfless and kind.

When Spencer and I are ever in a position to give - we're going to be paying it forward all the time.... What else CAN we do... we are so very thankful......

Thursday, November 10, 2011

Thankful Thursday (day 9 and 10)

I feel bad - I didn't post yesterday. I had a pretty rough day and I did TRY to think of things positive in the midst of being upset, but I couldn't think of ANYTHING. I really should have dug a little deeper because even amongst all the things that upset me, there is ALWAYS something to be thankful for!!!!
Thankful Thursday ties in nicely with my November theme of being thankful for something each and every day... So here it goes - yesterday and today's Thankfulness =)

Day 9 - I'm thankful that even though Spencer has a few rough days - he has MANY good days following. I'm so thankful that even though yesterday was rough, he still was able to sit up for a few minutes and do some resistance bands. I won't ever know how he feels and it must be horrible trying to gain back all of your strength and energy..... I feel bad because sometimes I blame him for not trying hard enough, when sometimes he just simply can't do it. I'm used to the old Spencer, being able to walk and so I would push him to 'run' (not really run, but exercise) and I have to realize that I can't expect that out of him right now. Yes, it is valid most days to expect him to get up and walking - but there ARE going to be a few days where he really can't do it. I felt bad after I was pushing him yesterday to walk because he sat up in the chair for only about 10 minutes and as we were getting ready to get back up on the bed ( i was just going to help him) He couldn't even stand up on his own and we had to call in a nurse to help him. Yesterday was just simply one of those days where he couldn't do it - and that's okay!!! Just as long as he tries his best.

Day 10 - I'm thankful for sleeping in! I finally didn't sleep in too late, or wake up too early. But I did sleep in until a nice 10:30. I can deal with that! After waking up I just stayed in my bed and caught up on episodes of New Girl and Up All Night.... perfect!

Tuesday, November 8, 2011

Thankful Day 8

Today I have a lot to be thankful for..... this time in bullet format!!

* Spencer may not need a transplanted liver!!! There is a glimmer of hope that he will only have to have a double lung transplant! We still will have to move as our center can't do the transplant with a case as complicated as his, but we have more centers now to choose from. Amazing news.... I am just so thankful and I am holding on to this hope of NO NEW LIVER!

* The doctor thinks one of the biggest obstacles is getting Spence to gain weight. Gaining weight is something we actually have partial control over! FINALLY something within our control!!!!

* I'm thankful for good nurses. Today we had a nurse that liked to complain about everything. This was too much work, and that was just a pain to do. Saying how tired she was and how much she wanted to go home. How glad she was she didn't have to change the port dressing. Asking me where everything was and what they used.... Really lady - Wanna trade lives for a little while? Please don't complain about your job in front of me... It just made me extra thankful for the nurses out there that do their job without complaining and with compassion. It makes me smile.

* I am thankful for the job that I have. A lot of people don't consider babysitting a job - but it is. I would tell you that a lot of teenager babysitting jobs probably shouldn't be considered jobs because the stereotypical babysitting sits the kids down in front of a movie and chats with their friends... etc. I'm just not like that. The kids need stimulation... attention... connection and a way to build trust with another person. Trust beyond the parents is huge and from the classes I have taken I've learned that a caregiver (such as a babysitter) gaining a close relationship and trust with the child is so, so very important... I don't just sit there and let the kids entertain themselves... I play with them. Engage in conversation with them. I have fun with them. I am so very thankful that the moms I babysit for recognize what I do and that I do a good job at it. It makes me smile because I like when my work doesn't go unrecognized. I know they trust me and know I do a good job because recently I have been recommended to other moms to tend their kiddos. I am just thankful I can be doing something that I truly ENJOY. Something that makes me smile. There is just something special about every kid I work with. They bring so much joy into my life. I am thankful that babysitting is working for me. I am able to bring in a little bit of money once a week - soon to be 2-3 times a week equaling a full time job. Actually being able to live comfortably and saving a little bit back for the future (most likely transplant associated expenses). It makes me smile.

And now that I've rambled on about that for awhile.... moving on =) (hey I'm just passionate about what I do!! No harm in that!)

* Last but not least, I'm always thankful of all the support that I am getting... and Spencer as well. I don't know how I would be able to go on with my days with Spencer being so sick if I didn't have the love, support, and prayers that we get daily. It keeps me going. It keeps my spirits high. I am SO SO grateful. Thank you... each and every one of you =)

Monday, November 7, 2011

Thankful day 7

Today I am thankful for sleeping in at home and then watching a movie with my love =) I know it sounds so simple, but little things like this are really helping me to get through the days. I have to make sure I get plenty of sleep or I really can't function and I'm super crabby the next day. So days of sleeping in are great! Even though Spencer was not feeling the best today yet we were able to spend some time together watching a movie =) I cherish every single moment like that with him!!! =)

Sunday, November 6, 2011

Thankful Day 5 and 6

I forgot to do yesterday's thankful day! So I'm going to to two today!

Day 5: I am thankful that I was able to take some time for myself yesterday. I was able to go to the craft store and DI to get me a couple pairs of jeans and a couple shirts. I needed time for myself and was able to take it!

Day 6: Today I am thankful for Sacrament meeting and testimony Sunday. I heard things that i've been needing to hear. I haven't been to church in awhile just because things have been so crazy around here and I always felt like I needed to be with Spencer. I didn't want to go to our ward because I just haven't been ready to answer all the questions about how Spencer is. It's still hard for me to talk about all the time and it just exhausts me. Going to sacrament up at the hospital is nice because there is no one to ask how he is doing and I can go and worship to myself, by myself and it's very helpful. I'm so thankful we have a place to go here at the hospital to do just that. I'm gracious for my Heavenly Father and I know that he will provide through anything. I trust in him and I am so grateful to be part of this church. <3

Saturday, November 5, 2011

Thoughts for the evening...

Man, tonight I'm really missing Spencer. . . It's really sad when you almost don't remember what your normal nightly routine is with your husband because he's been away from home for so long. It's hard for me to imagine what we'd be doing right now. I know what I want to do - cuddle up under a warm blanket, watch a good movie, drink hot chocolate, eat popcorn, and watch the snow fall. But i dont know if we'd really be doing that or not. Most of our nights consisted of him sitting up with his head in his hands trying to muster up enough energy to stay up late with me.

I think I'm just having a SCREW CF kind of night.... I hate how much quality time it takes away. Usually the hospital stays are not too bad.. we snuggle up to a movie which is nice because he can actually lay down in the bed.. we actually DO get some quality time together because he's in a place he can rest and feel better and after week 1 the second week he's feeling "healthy". Isn't it sad that our quality time is spent in the hospital because the minute we go home he seems to either catch another bug or get sick with his liver, kidneys, or intestines?

I am also struggling with seeing Spencer in the condition he is in. He looks so healthy (minus the horrible weight loss). He is joking around. Getting antsy. Wanting to get out of there. But his body isn't playing along. It's just so terrifying. Tonight I wanted to have a conversation with him so bad - but we have to work for each and every word that he says. He has to work extra hard to say it and then I have to put ALL my focus into the shape of his lips and the slight sounds I hear from the trach. one little conversation takes SO much energy. So mostly it's me telling him things - and I'm running out of things to tell. I try to have a conversation like we normally would... but when I'm in the hospital with him every day, I don't have anything new to tell him.

I hate that we might not even get the life back that we once knew. It would be one thing if we could be guaranteed him getting better and coming back home etc... but we're not guaranteed anything. We never are. Life is full of curve balls. It's all kind of hitting me again the magnitude of the situation. I do okay for a few days... It feels like I have accepted everything that's going on - I'm able to talk about fundraising, transplant, the future... but then I have a couple days where I have a little set back myself and discover I'm still in a little bit of denial. I feel so very overwhelmed with the situation and can barely cope. On days that I find it hard to cope I so badly just want to shut off to the world, but I find that hard as well. It's a vicious cycle.

I just want it all to end. I want Spencer home. I think one of the hardest things is not knowing what the future may hold. Usually we have a discharge date... but right now - it could be a few weeks, a month, or several months before I can take him home... and what might happen in between that time? It's stressful.

I just needed to get down some of my thoughts so that I'll be able to sleep a little bit better. Whether they make sense or not. I can't get my exact thoughts down - it's impossible. But this is as close as it gets...

Tomorrow will be better. Get to go shopping for some jeans (wish me luck) a couple warm shirts, and possibly hit up the craft store... Then spend the weekend with my love. Going to try to spend the night up there Sat and Sun night... hope he has understanding nurses!!!!

Friday, November 4, 2011

Thankful day 4

Today I am thankful for a very happy baby! The little girl I watch is probably the cutest thing ever - and today she hasn't fussed even once! She's playing hard, eating great, talking up a storm, and napping perfectly. Seeing her bounce in her jumper is probably the best! She just gets so excited! Then when she's done she'll pause with such a serious look on her face and break out in a toothless smile. She's also been way into her feet today. I think it's the bright colored socks. She's been munchin' on them like crazy when she rolls over during tummy time! so cute!

Ahhhhh kids brighten my day =) Love when my days with her rock like this!!!

Thursday, November 3, 2011

Thankful day 3

I'm very thankful today that I got a good nights sleep last night. It carried me through the day with Spencer as he wasn't feeling very well.

I'm also very thankful that he was able to sit up in a chair for about 3 hours! Probably a little bit too long but he loved it!
We got a short photo shoot in to pass the time... Gotta share a few of the pics!!! =)

I love him =)

Wednesday, November 2, 2011

Thankful November!!!!!

Since we reflect on what we are thankful for come Thanksgiving time this month - I wanted to try to reflect on something every day this month to keep me positive and optimistic.

I missed yesterday so I will post two right now =)

November 1:
I am so thankful for the cards we received in the mail yesterday! My guidance counselor from grade school/ jr high/ and HS is having all of the kids in grade school make cards for Spencer after she shares his story with them. How amazing is that?! We have so far gotten cards from The 2nd and 3rd grade classes and then from the 1st and 6th grade classes! We can't wait to see more. They put huge smiles on our faces and tears in my eyes. They are wayyy cute!!! Spencer and I talked about the next time we're in Kansas to stop by the school and visit each classroom =)

November 2:
I am thankful for all of the support I've had. Online and offline. I had so many friends jump in very quickly today with prayers and love when Spencer had an episode of massive hemoptysis. We've been in here over 40 days and the support love and prayers hasn't stopped. I'm so very grateful for that. We need all we can get!!!

Day 3 to come tomorrow!!! =)

Tuesday, November 1, 2011

To the strongest person I know....

"Strength does not come from physical capacity. It comes from an indomitable will."
- Mahatma Gandhi

You are easily the strongest man that I know. Maybe not physically, but in courage, perseverance, love, and hope you beat everyone I know. Even myself. You tell me that I am strong, much stronger than you - but I feel so weak in your presence.

Your will to live seems never ending. Your want and need to keep on loving, living, and enjoying life is what keeps my hope alive. I have ALWAYS believed in you, even when you haven't believed in yourself. I have always known deep down in my heart that you have a copious amount of inner strength to fight, hope, believe, and breathe. This last month and a half has proved that and I hope you hold on and just remember how far you have come. Even though it seems like this journey is never ending and you feel yourself wearing thin, remember what you've gotten through and smile that you're still alive, breathing, feeling.

I look up to you. You're my inspiration. You are my hero.

"A hero is not a person who puts on a cape flying around and saving people. A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles."

I have never, ever known someone to go through as much as you have and still lay there with your spirits high, smile on your face, and a twinkle in your eye. Though you may get down and discouraged, you are sure holding your head high despite all the adversities you have faced not only in this last month and a half, but in your whole entire life.

"Everyday may not be good.... but there is something good in every day..."

I don't know who said this - but I have been trying to live every day in accordance with this saying and I hope you will too. You've had your ups and downs - the days where everything seems to be going well are easy to get through, but the days that drag on and little progress is made are the hardest, not only for me - but even more for you too. Even though those days may be a struggle, remember that it's important to look at the good that has come out of the day. Being positive and keeping the hope alive is what is going to carry you through.

Martha Washington said " I am determined to be cheerful and happy in whatever situation I may find myself. For I have learned that the greater part of our misery or happiness is determined not by our circumstance but by our disposition."

As I said, an optimistic outlook and positive disposition is key to our mental strength to help us through. I know you have this within you and when the days start to get rough I am asking you to dig deep inside of you and discover it. You have gotten so far, don't give up now. If you can get through this you can get through anything. I am so proud of you for how hard you've been working and how far you have come. I am here through everything, every single day. Your progress is my progress, and your set backs are my set backs. I promise to be your biggest supporter and your biggest fan, no matter what each day may bring.

Continue to fight, my love - we're not through with you yet!! <3 <3

Nov 1 = snow!?

Woke up this morning welcomed by some "wonderful" snow... What a good way to start November, right? Not so much in my book... lol I'm definitely not a fan on winter. It means painful joints and a jaw that locks and clicks; cold and flu season and I hate being sick; and Spencer gets sick a lot more frequently during winter. Not to mention it's just always way to cold!!!
No idea when Spencer will be getting out of the hospital, but when he does it will be vital that we keep the germs away from our house and keep things very sanitary so that he can avoid the germs. If we go out - I'm afraid we'll be wearing masks to protect ourselves. It's not only important that Spencer doesn't get sick - but me as well. I don't want to bring germs into the house!!! I'm trying to get REALLY good at using hand sanitizer frequently and washing my hands when I can. Before Spence gets to go home I'm cleaning the house like the worse germ-a-phobe you've ever seen. lol I'm really looking forward to the day that I can take him home!!! We're so tired of this place. We'd LOVE to get out by Thanksgiving but I have a feeling that might not be possible.

So today I'm just relaxing in the hospital with my love. Going to try to keep him company and awake all day. Waiting for doctors to come in and several discussions to be had. Kind of nervous but we need things answered. We need to know. I caught his team as I was getting off the elevator and they said they'd be back in to examine him and talk with us about everything - but they said it looks like weening off the vent is going to be a very slow and long process. This is very discouraging for both Spencer and I. Here I look at Spencer, and he is looking great, healthy, smile on his face, shine in his eye.... but yet he needs help breathing and his muscle mass is basically zero right now. I'm sure it's even more frustrating to him because he knows what he wants to do, he can just imagine what it will be like to get off the vent - he wants it SO bad; but his body is not following along. Of course the process could go faster than any of us imagine (it's honestly HARD for me to imagine it taking a long time because I see Spencer looking so well) or it could even take longer than we imagine.

This is why physical therapy and gaining weight is so gosh darned important. One reason it's going to be a slow process is because he's lost SO much weight and his muscles have atrophied so much. I'm hoping that we can get his weight up quickly because they talk like everything else will follow. But PT is so important because it strengthens his lungs and allows them to get better air flow. I'm trying to set goals every single day with Spence. Sure we can try and have a lot of fun while we're here in the hospital - but a lot of it is going to need to be WORK as we try to get him in the best shape possible.

We can't start evaluation for transplant until he gets stronger. He will have to undergo a lot of procedures (EGD, heart caths, etc) and his body can't handle that right now. I don't know much about the transplant process and where we are with Spencer about it... but I hope to get some answers soon. We need to know.

It's so hard to see his body to frail but his spirits soaring high. So, so unimaginably hard. Sometimes I just want to be like - K Spence lets go home, because he's feeling so well and acting just like the old Spence. Once we get the pain under control I hope things will get even better. He's taking less pain medication, only about 2 doses a day and he waits longer and longer to take them. He doesn't take them until his pain gets to be about an 8 - which I think is PRETTY AMAZING!

So those are my daily thoughts..... If anyone has any tips on keeping Spencer motivated and working hard as well as keeping his spirits up - please let me know. I can see him getting tired and I am trying so very very hard to help keep him going!!!!!