well hello there. :o)
the day after i posted last was a delightful day for the darlings.
i'm in quite the mood at the moment so we'll see how this post turns out...
back to the delightful day.
after seven and a half weeks here we finally had a couple hours that we were without staff. whew! the whole time we've been here, we've had staff with us at all (aaaall) moments. the mr. & mrs. needed some us time. badly.
it was a weird feeling walking through the double doors off 7E and not have anyone with us. kind of nerve racking. what if cale decides to bolt? i knew i wouldn't be able to stop him. no siree bob.
good news is that he didn't try not even once.
also good news is that we had an amazing time.
we needed it. badly.
life back in inpatient is so different this time. the playing field is completely for a whole other game. my heart is in a different place, cale's awareness is at a different place, our marriage is at a different place.
just plain ol' different.
and can i just say, praise God?!
i'm rejoicing in all the differences!
cale had won a gift card to olive garden at the party last week and my mouth was already watering for soup and salad...what's up with their salad? i ask mine to have no dressing because well, i'm a weirdo...and i still crave it! it's drugged. or not.
fresh. fresh is a good word.
isn't all salad "fresh?"
hmm...
after a really ginormous lunch we went to target for a few groceries (i basically live on frozen meals here) and a few other exciting things like tooth paste.
we actually picked out mama's christmas gift...cale's idea after i pointed them out. i laughed my head right off my body. almost literally but only because i ran into the medal thing. whoops!
while walking out of the store i mentioned how funny it was and with a grin spread across his face cale said, "it's payback." and we both started laughing.
not sure what he's paying her back for! haha! i can't wait to share pictures with you!
after our day out we went back to the hospital for dinner. i think it was definitely a good thing he ate a big fatty steak for lunch because the hotdog that came on his tray was ugly. uuuuugly.
he ended up having a bowl of cereal and afterwards we cuddled up in his little hospital bed and watched us an action movie with lots of manly things.
yep, saturday was a delightful day for the darlings.
my quick stop sign pose and cale's cool man pose.
way too long to go without a date! at least for these two lovebirds ;o)
after we paid and tipped and right before we were leaving, cale took a big chomp off the end of this breadstick and decided to leave the waitress a funny thing to return to. the rest of the table had already been cleared off so this guy had a solo. every time i show this picture to cale, he laughs.
this would be the really pathetic gross weird hotdog on his tray. the picture loses some of the odd detail and the ends of it...oh goodness waaaaaay worse. not sure how it passed to go on a tray...but they got it back! haha! no thank you!
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one of the things with our life now that i'm always amazed with is how things that we think nothing about or even care about are things that are so exciting and huge to cale. he still doesn't have control over his right eye so when he opens it and notices it, he gets excited and wants me to celebrate with him. it's a big deal. when we're driving down the road and the car in front of us is making a turn, the beat the signal light makes is special to cale. he loves it. he drums his legs right along with it and gets excited about it. if the light turns green around the time he says it's going to, he totally lights up. he shouts, "yay!" over things many people never think about.
on sunday we walked down to get him a donut and on our way back he had to use the bathroom. i walked with him to the correct door and found a seat outside the door waiting. as soon as he came out he was saying, "crazy. um. um. the thing in there. crazy." with hand motions and sound effects i knew that he was talking about the hand dryer. he was so excited about it that he found an empty wire thing next to the vending machine to show me what it did.
he also gets excited every single time we ride the elevator to push the button. he becomes very disappointed if someone does it first. he also likes to time the beeps it makes on each floor and make the beep sound with it. highlight of his days.
it's beautiful to me to watch this man that i love cheer and enjoy all the little things in life. he doesn't just walk past something and carry on with his day lost in thoughts and lists. he doesn't have too many thoughts past what is happening in that moment.
he lives in the moment.
he lives and discovers and finds joy in the most hidden places.
his simplicity is so refreshing and i am so thankful.
we also went to a christmas party they had for all the patients here on sunday night but there were waaaay too many people and it was waaaaay too loud. the ipad was the only reason we could stay for as long as we did, but that wasn't even very long. he just couldn't do it. he did find a treasure to keep that has been on his head off and on since that night. a hat. a funny hat. he's my sweet crazy hat man.
you know why he loves wearing crazy hats? it makes people smile. he has always always loved making people smile and laugh.
i like happy people too cale. :o)
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i was supposed to have a meeting with the doc yesterday to go over a game plan, but it didn't happen. there were thoughts i had and questions and i knew talking with him was going to help...the waiting can be not so enjoyable though.
this was my first time getting to actually sit down with his main doc. he was amazing. he answered all of my questions before i even asked and sat with me and cale's ct scans and broke them down so clearly. i knew cale's injury was severe and i've been told he has a significant amount of dead brain tissue, but had never had things so clearly broken down. i had known of the large hemorrhage on his left frontal lobe but wasn't aware that he had over 7 just on his left side, one in the very center area of his brain that is not normally damaged because its so protected and multiple on his right.
it was all fascinating to look at and discuss. i think that may have to do with me not being able to focus on what was being said in the early days...
the doc talked about how cale is an unusual case and what his needs are. on my last post i wrote about how we'll be going home next week and actually up until the meeting that was the plan and what i was saying but after the meeting we've decided to keep us here until after the first of the year. this will give a chance to work out and set up some things for cale. even though he's having outbursts here, they come far less often than at home. basically all boils down to cale having behavior issues and a lot of structure and retraining will be involved.
as disappointing as not being home for christmas is, we've done holidays in the hospital before and we know it's not the worst thing to happen.
i'm also willing to stay as long as needed for what my man needs!
cale would disagree. in fact, will you be praying about that? praying for a supernatural understanding and peace to pour over cale. he is not going to be happy about this in the slightest. one of the things the doc talked about which i already knew was how cale lives in the moment and time means nothing to him because he can't process it. a week, a couple days, a month. nothing. he doesn't process anything happening over about a 30 minute span...if even that.
and he doesn't understand his injury still or why we're here...
which is a recipe for a very difficult time for him and anyone in his path.
but we're all crazy about him anyhow!
:o)
i'm going to bed with a peaceful heart and a lightness that just feels right.
one last thing...
no joke. and way too often!
sorry about no caps tonight. i was feeling on the lazy side and that was my way to still feel lazy but still post tonight! ha.
Thank you for sharing the update. I really enjoy hearing about Cale's love for simple things and hearing about where he's at, some of the specifics of his case that don't violate any big confidential issues, and where you are at with it all. You are still so positive, but seem to either be more accepting of where things are or tired. Or both. I will pray for further healing and peace for Cale.
ReplyDelete--Anonymous--
I totally get laughing at something that happened yesterday. It's nice to know I am not the only one. :) I am blessed beyond measure you are able to hear and do what Father puts before you with rejoicing. He has His hand on you in a special way. I am asking and TRUSTING Father to give you a SPECIAL Christmas gift. I know your mom is glad for Cale, But sad not to have you home. You are my treasure and I am grateful to get to e a part of your life. Thank you. I love you, Marion
ReplyDelete((())) Love you girly, blessed just to read this and see God is still moving on your behalf ! Blessings to you - I will be praying for Caleb for understanding and peace !!! Prayers for sustaining grace and strength for you !!! lifting you up ! Reenie
ReplyDeleteHey girlie, I LOVE the way you wrote about Cale loving the simple things. That really blessed my heart and made me take a look inside myself to make a note not to forget those things:)
ReplyDeleteWe love you guys and are praying for you.
Greg & Julie
I'm sad you wont be coming home, but I'm happy you got the chance to have things broken down for you so clearly and that you were able to gain more understanding so that you and the team can work out a game plan to make things as happy and safe for you and Cale at home as can be. I know that God is going to do great things through this time at the hospital and that all the time spent away from home is going to have been more than worth it. We love you guys so much and can't wait to have you back in Washington!
ReplyDeleteSissy
Heeheeee...I was just reading on and looking at the photos one by one, scrolling down. For some reason when I got to the hot dog photo I just busted out laughing and couldn't stop. (First time I've laughed today...you bless my life.) For some reason that hot dog looking so pitiful just makes me LAUGH~!!! (Still laughing.) I was hoping you would be home for Christmas but this is also in God's plan. God has all these circumstances in His control...isn't it wonderful we can trust in all things? Faith and trust can be such a hard journey...you know so much more of that than I do. I am learning from you. We will most certainly be praying for Cale's peace and surrender in this situation and that God has some wonderful blessings in store for you for Christmas. I LOVED hearing about your date...how fun! Now, back to that hot dog........LOL!!! :o}
ReplyDeleteLove,
Emily J.