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

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!!!!

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!!!

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 =)

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!!! =)

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!!!!!