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!

 
 
 

5 comments:

  1. What an update !!!! Wow, all I can think of is Lazarus. Honest and truely - How Jesus was only like a mile and 1/2 away from his home but he let him "sleep" so that the Glory of God could be revealed in the son. I think the verse that strikes me the most is when Jesus asks Martha Do you believe this? In other words .... who do you think I AM ...being mindful of who the great I AM is -Martha answered I believe you are the son of God, who was sent here to save us. Jesus is never outside of our hearts cry, he is right there weeping with us, but in that place he will ask us if we believe, if we KNOW who he really is ? In this place of brain death, God is still God and will be gloryified within Cal and within you ....He can still heal,and he knows your hearts cry....and in all of it he asks Do you believe this? It is always personal...... I see you making this verse your life.... You KNOW He is the great I AM , you may not understand him but you can trust him , just like Martha..and I love that about you, the simple honesty of trust and love comes through in all you do and say. Death of a dream, death of a life plan, death of some brain tissue doesn't get the final say ~ I AM does. Praying for continued grace and strength as you walk this out ...... Oh one more thing that I was just remembering about Lazarus, you know he really stank he was the big stinker ..... but who released him from his grave clothes ??? It wasn't Jesus....nope it was the ones closest to him, his family and his friends - Jesus told them to take off his grave clothes .... so they are the ones closest to him breathing in the stench of it, but seeing God's full life breathing healing alive in Lazarus.... Don't be dismayed by the "big Stinker" ( and I say that lovingly) God already did a miracle bringing him out of the grave literally - did they not tell you he would not live??? As each layer is unwrapped He is getting unbound .... and God is getting and will continue to get the glory in your story of life and love!!!! Praying for you ~ hey how are Amy and Adam doing ??? Praying for them too. Love you !!!!! ((())))Always, Reenie

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  2. Again, as always. You are amazing!!!

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  3. Wow. Thinking of you and praying for you both.
    Love in Christ.
    Emily Jordan

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  4. My Dear Kathleen, I love and honor you. Father has His hand on you in special way. He is doing a mighty work in and through you. You will be amazed at the fruit grown from this time of your life. I love you, Marion

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  5. Kathleen,
    You are a treasure! You used the Scripture I have relied on for years, and really, what better gift than to be able to lay it all down and trust in the Lord. I understand the work ahead because we have taken care of Jonathan for over 5 years with no resite at all and he is 24/7 care and totally dependant. Your life is richer than most because of your commitment to Cale and the honor you give as his wife. Bless you as you continued to do all you can to help your dear Cale. The Lord knows!~

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