Tuesday, November 27, 2012

Basil.


We've been missing this guy terribly. We've been away from him before but this time we know when we get home he won't be there waiting for us...

Cale said tonight at dinner, "Basil is like a human. Like my brother." 

Broke my heart. I know finding Basil a good family was the best thing for him and for Cale, but boy oh boy...we just really miss that big lug. 

Saturday, November 24, 2012

friends, games, muscles, and...us :o)


I had a baking day with Julie! After a really good run we went right inside and started baking. Between the cookie dough and the warm goodies...my run was thrown out the window! It was so worth it!
Last week we went for a walk with our two friends here and a couple staff. The weather so far has been so amazing! Today it chilled up though! Yikes! 

The little purple guy...yeah, he's being completed for our new home. Doesn't he look like he'll fit right in?! Cale picked the colors and did all the purple painting! We haven't decided a name yet...

We've been playing games...games...and more games! Like we always do! :o)

Including a game of bowling today. To brag just a little- Cale did AWESOME! It was his first time not using bumpers, finishing the whole game, not getting angry, AND he hit pins! Normally he gets so mad right away when he gets gutter balls and the bumpers make him mad, but this time he tried roll after roll. So proud of him!! 

And...eating the ball...that was his idea! 


Since starting the rewards program, Cale has been riding this bike everyday. EVERY.DAY! This is a HUGE deal if you know how Cale has been since being home. HUGE DEAL! I'm kind of having fun with the caps. Anyways...


Exercising in the first place is a big deal and then not only that, but he was doing the same boring thing as well. I could see his frustration level rising at the mention of doing it one more time. He has wanted the point for it so he has been compliant but the point was quickly becoming not worth it. With all the Navy guys around we came up with another idea for today. He was also cleared today (I think) to start using the exercise room on 7west. That will help to change it up!

He did sit-ups, push ups, plank, leg hold, and arm circles! What was so awesome is that he didn't just do what was asked. He always did a few more. I love that! I love that about my man! I think he held the plank longer than I can! 



One of the other patients asked me to smile for a picture. I made a funny face right when he snapped it. He laughed and said, "Oh now that one is going on Facebook to embarrass you." I quickly filled him in that there are multiple pictures of me all over the internet I'm sure that are much much worse. ;o) 

We've been doing good with things around here. We're still not sure how much longer we'll be here. I'm meeting with the docs this week to go over the plan and see where that leads. My guess is that we be leavin' this place soon...either way, I just want to make sure Cale has all that is offered to him!

He would disagree. He was ready to leave before coming!

The rewards program is still going very well! We made a few more changes and he goes right along with it. I've had a few discussions about continuing this at home with him. Sometimes he just says it's dumb and he's not going to do it and sometimes he totally agrees. Yesterday while looking over the plan we came up for him once home, we talked about each thing he would need to do to get points and then how many points he would need for the different rewards. 

After we were about done I said, "Once we have a baby, we'll have to add more things to your list, like, changing diapers and holding the baby." Cale added without hesitation, "and breastfeed?" HA! Oh man...this husband of mine makes me laugh!

To end this post I quickly wanted to share something. For some reason this morning I started to hear all of these lies run through my head. I'm not really sure how to explain it other than just that. Things that I know are not true were running though my head and I started to fall into believing them. I wasn't purposefully making the choice to let them take hold of my thoughts and emotions, but that's exactly what was happening. As the morning continued my mood started to shift. I took notice as I walked to the hospital and for the most part shut it down. 

That should be the end of it, but when you try to shut off lies that so easily seep in without binding them through Christ, well...they don't so easily shut down. 

All day it was eating at me, but the Lord provided two different people to send me a message and an email today...that confirmed His truth. 

It wasn't until then that I was able to fully recognize a lie for a lie and bind them.

I'm so thankful for a loving personal God in my life. He can be stern and blunt but also cares enough about His children to give them soft and gentle reminders of His grace. 

I know I may say it a lot, but thank you for walking in our journey with us. Each of you are used as a very specific blessing in our life. 


Thursday, November 22, 2012

we give thanks.

We may be celebrating another Thanksgiving in a hospital but we are still so full of thankfulness! 
We know the Lord has blessed us above and beyond anything we could have imagined. We know we have amazing family and friends in our lives.
We know how each day truly is a gift that we're given to live.
We're also very aware of what our life holds and the daily struggles that are like flashing neon lights;  a constant reminder of how different our life is now...

I'm reminded of 1 Thessalonians 5:18 which says to be thankful in all circumstances. 

It's a tough one to swallow sometimes. And I'm thankful that because of Christ, it's possible.

As for our day...

we spent it together which was wonderful! We were able to Face Time with family, play games and watch movies. We also went to the cafeteria for lunch. They did an awesome job of creating a special time! There was a ton of food and a chocolate fountain! Yum!

The weather has been BEAUTIFUL! As you can see in the picture, Cale was perfectly comfortable dressed for summer ;o) 

We're incredibly thankful for each of you. 

Happy Thanksgiving from the Darling's! 


Friday, November 16, 2012

Papers are signed!

We did something today that was kind of a big deal...
 
 
 
after a crazy afternoon we signed the closing papers on our home!!!!
 
We managed to work everything out to get them signed today and then I sent them on their way back to WA. We'll officially be closed on Tuesday! Hooray!
 
 
 
It's not just about the excitement of getting a new home. For us, it's a miracle. I remember so many nights before drifting to sleep, wondering if we'd ever live in the same house again. I remember wondering if we would ever be able to own a home. I remember wondering how it was going to be possible. I did know that God knew and I needed only to trust Him.
 
But the questions still came.
 
After ideas came and went and time passed, we're now owners of our very own home. This would not be unfolding before us if it wasn't because of how far the Lord has brought us in Cale's recovery.
 
We can't wait to get home to it! :o)
 
 


Thursday, November 15, 2012

four weeks.

As of yesterday we've been living hospital life for 4 weeks...
not sharing a bed at night
eating hospital food or frozen meals
no privacy
not driving our car
no visiting with our family
no waking up in our home
not going to our church
not using our own shower
saying good night and good bye.
 
The last few days I've been really missing home. Big time. I've been thinking about how being inpatient last time was way longer and much different but I didn't have a "home" to miss. We didn't know what home was going to look like or where it was going to be. The hospital became our home.
 
This time...we know home. We know where it's at. We know it's waiting. We know we both really want to go and we both miss it so much.
 
Along with these thoughts, I was thinking that all the things we've given up for this short time to be in this program is almost nothing compared to the change that being here can bring; and that we hope for. Since we've been down this road before, I know that before I know it, I'll be cuddled up next to my husband in our own bed (in our new house!!!!) talking with him about how I can't believe I had to leave the hospital every night and fall asleep without him...I know this because we've already had that discussion multiple times in the last year! ;o)
 
We're working really hard with Cale's checklist. He's doing amazing with it! We've made a few changes that started today and before going home we'll have to make a few more. My prayer is that he'll continue at home...and that going home isn't the only factor of why it's been going so well. I'm talking with God quite a bit about it :o)
 
Today he worked so hard to get enough points to go to the McDonald's right by the hospital. We still have a nurse with us but that doesn't bother him one bit! 4 weeks without going outside of the hospital is a really long time when you're not in a coma!
 
 
And yes...that is my Holiday Mint McFlurry and it was delicious. I didn't need it but oh how I wanted it! I ate every single bite!
 
Thank you for all of your prayers and cards! Now that Cale gets to go downstairs when he has enough points, he also gets to check if he has mail. The other day we went down and he was so excited to have mail! You are all such a blessing!
 
We are so thankful for God's continued work in our lives. He's constantly molding us into who He created us to be.
 
p.s. I just discovered that I can reply to each comment! I'll be able to directly reply to you! I'm sure this is a very late discovery, but...eh...I caught on eventually!


Tuesday, November 13, 2012

Little bit of this...and a little of that.

 
We've started behavioral training. Cale is actually doing waaaaay better than I guessed he was going to do. We have a rewards system set up and with each thing he completes he gets a point and with so many points he gets a reward. At this time it's very simple and going well. There was a fairly big explosion on Saturday because he didn't have enough points to go downstairs for Dunkin Donuts, but we moved past it and kept going. Today he wanted D&D so we counted points together and he needed one more. He looked through the list and then looked to me and said, "shave me." Ha! Getting him shaved meant a donut and a trip off the unit! So far his trips off the unit are with me and one of the staff. Even though it's just downstairs, Cale loves getting to leave 7E! We're hoping to build and tweak the program to fit our daily doings at home and maybe help take a lot of the fuss away.
 
 
Along with getting to go downstairs we also get to sit outside in a little garden area and get fresh air...of course...we seem to get a bit crazy with fresh air!
 
 
Cale wrote a letter to his brother. He actually wrote words!!!! Like more than just a couple and without much help. Some of it is still hard to read unless you focus on it, but actually I feel like he did really well with this one. Since he had enough points he also was able to walk it downstairs and drop it in the mail box! He loved it!
 
 
The nursing team spends a significant amount of time talking Cale through his anger. This is a huge part of each day around here...I have to hold back laughter sometimes because they're so very patient with him but they'll have this discussion with him and just when they think they're almost done, he starts over with the same question. I deal with this every day and watching from the outside it's a lot more fun! The talks are progress rather than big ol' explosions!
 
 
We like to just chill. The hospital was quiet yesterday so we played games, cuddled, listened to music and watched a movie! Nice relaxing day!
 
I could write a ton more about what the Lord has been teaching me and all of my many thoughts...but today pictures say enough :o)


Wednesday, November 7, 2012

2597.20

According to mapquest.com we are 2597.20 miles from home. The driving time is 39.29...and daily Cale says he's going to walk it! That's a whole lotta steps!
 
We miss home. As of today we've been here 3 weeks and prior to that we were gone for 3 weeks...so a total of 6 weeks we've been gone and if you don't count the 3 days we were home...it's actually 7 weeks! I'm still not sure when we'll be heading back that way either.
 
I was trying to get Cale out of a funk today so I handed him my phone and told him to take 10 pictures of things around the unit that are also at home. Here are some...
 
- Jesus Calling for Kids, a sink, soda, cribbage, tissues, and his girl. He also took a picture of a computer, door, and Xbox.
 
It helped a little to take his mind off not being home. :o)
 
Mama sent a few videos of our new home. I'll have to get an updated picture soon to share with you. It's so crazy for me to think the house is still being built even though we're not there driving to see it everyday! I've been told it's turning into a pretty home!
 
Tonight I am so very thankful that we know when we leave here we have a home to return to!
 
A few other things...
 
* Cale was able to leave the unit for 30 minutes today! He still has to stay in the hospital and we have to have a staff with us, but it felt so gooooood to leave 7E together! You could say it was our first little date ;o) We went downstairs to the Dunkin Donuts. Yes, I know...one right here in the hospital. Dangerous. I can't even say I love DD but when you're living in a hospital...it's all good! Haha!
 
 
As soon as we were back to the room he started chowing down! After a few times of a staff going with us, they'll lengthen the time and eventually let us go just us! So super excited and nervous all at the same time.It  could get a bit interesting if he tries to bolt with just me there! Thankfully there's usually always a person in uniform walking around...I can call out, "Help me! Help me!" Heehee!
 
A funny for today...
 
I was told by one of the other patients, "For a trim and fit girl, you sure do got yourself a bubble butt." Um...thanks? Ha! I'm very aware of it!
 
Next time I think to grab that slice of pie...it's gonna run through my head!
 
 


Tuesday, November 6, 2012

Heeeeelloooo!

We are still here at Walter Reed! Cale just finished up the second part of observation-which was going until dinner time without me around. Yikes! I've been asked who it was harder on, him or me...and I'd have to say we were neck and neck!
 
Because of the storm it was only 3 days instead of 5. At home it will be the two of us, so they want my time with him to continue as we would like...together. Of course this doesn't mean that I won't make sure to take care of myself and get out of the hospital, but it does mean that I can see him a little more and not feel so much like I've abandoned my husband to an unknown place!
 
A little dramatic. I know.
Ha!

Anyways, we've been doing good here. Cale is still struggling, but it's good for them to see every side of him-including how funny he is! And, through this time of observing him, they're coming up with an action plan. As much as he hates it here...I'm so thankful we're here! They are seriously amazing with him. The nursing staff here are so connected with his needs and listen to everything I have to say. All the staff are also very caring of the family members and our needs. So blessed!

I had a meeting with the social worker today that was tough but good. I've had many of those meetings in the last few years...

So far with everything they've been able to figure out with Cale, there aren't any added layers for what he's going through. This is good and bad because, the good part is that we're dealing just with his brain injury. The not so good part is that what he's dealing with can't be helped with meds.

Cale has a significant amount of dead brain tissue. This isn't the first time I've heard this. It's always the reality of what we're living. Even though I really want Cale off all meds, the idea that some of what we're facing can be "fixed" or "helped" with meds...does sound kind of nice...especially on the harder days but without covering up his functioning ability, meds are off the tools list. And I really am thankful for that!

It was also talked about the level of care that Cale does need. The severity of his injury causes extreme behavior issues that will take a ton of energy and time to help guide. There's no fixing dead tissue, but we can try to help him learn new ways of living life in a more structured and consistent environment. Which of course adds a new level of difficulty in the Darling household!

With the discussion of the care that he needs and all that comes with it, this brings up topics like, putting Cale in a facility that will allow me to visit and be with him for the cozy loving parts of his day and passes on weekends...and the rest of the time the staff would be the ones to force issues like showering and teeth brushing.

I immediately replied that it's not an option for us. It's not. First, can you imagine the creature that would present itself daily if he had to be in a facility the rest of his life?! Wowza! I wouldn't want to be the staff helping him...not to mention that I have been fighting since he was in ICU against a nursing home or any other sort of facility!

Thankfully, they're honest here and explain reality very well. I was able to explain that yes, I want to just be his wife and have the cozy lovey moments and happy times...but I love him through the bad and challenging times too. Yes, it will be a load of work and I may have unswept floors and dirty dishes but nothing would pile up too much that I would trade for my husband home with me every night. I think it also was a good and needed thing for me to be confronted with this option right after discussing all the ugly details and still be confident in my choice.

It is difficult that his speech isn't great, he can't be left alone, he needs constant entertainment, he needs help with walking, needs to be driven everywhere, needs help showering and taking meds, needs continual prompts to do his ADL's and other tasks, he can't keep track of his schedule or cook for himself, he throws fits. His memory is terrible, he can't do the finances, and he can't clean the house. He gets mad when he loses a game and he picks his nose no matter where we are.

He can't just stop at the store and bring me flowers or plan a surprise trip...

...but I am his and he is mine.

We have a whole lot of life together ahead of us and although the challenges aren't near being over, for now I can confidently say, I will stand by my man and take care of him to the best of my ability!

To prepare for home we're going to try to start Cale using a rewards program. I have no idea what this is going to look like...and I don't have many details, but I'll try to keep you posted!

After all of that, I will also add that I have not forgotten Who the ultimate healer is and I have not lost hope in Cale's continued healing! :o)

Just the other night while doing devotions, we read in Jesus Calling for Kids:

Learn to trust Me in all situations-tough ones, as well as the easy ones. Trust me when you don’t understand what’s going on.

We then had quite the discussion about what that meant. This kind of hits right on the nose for Cale at the moment. Sometimes when I dig a little too much Cale gets frustrated and then he's done, but that night we were able to go a little deeper than most nights. It was a good reminder for me too!

Just a few pics...


I had ordered a few pictures of us for Cale's room and they finally came! It took forever because of the mail system at the hospital, but now they're up!


We did some art! We both agree we are just not the artistic couple!


I really love this crazy man.

Also, thank you for all the cards and packages! You are all so sweet!

I've only put the hospital address on here but it seems there is a lot of confusion with the mail system here...so please send any other cards or packages for either of us to:

Kathleen Darling
24 Stokes Road
Fisher House Bldg 5 Room 202
Bethesda, MD 20814
 (Sorry to those of you that have been asking and haven't heard from me!)

Thank you for your continued prayers! We are so thankful for you!

Trust in the Lord with all your heart
and lean not on your own understanding;
in all your ways submit to him,
and he will make your paths straight.
-Proverbs 3:5-6

p.s. I hope ya'll voted! Here we go!