Monday, September 24, 2012

Living Our Brain Injury.



We just returned from sunny San Diego! If you remember last year, we had gone to the Summer Sports Clinic for a week and Cale was able to try out a whole week worth of activities. It was awesome. A lot, but awesome. Last year we got a ton of smiles out of Cale and through the week he tried hard at everything and really enjoyed it all, but it took a lot out of him. He was exhausted the whole trip!
I’ve been excited to see what this year was going to bring. When you think about the recovery journey with brain injury, or any injury for that matter, a year is a long time and a whole lot of healing can take place. I was ready to see Cale do more and better. In the back of my mind and even talking with a few people before we left, I guessed that we were either going to have a really good week or an extremely difficult week. I of course hoped for the first rather than the latter. We’ve gone through some rough patches lately and have seen his anger develop into being more aggressive. Since I’ve been home from my trip to Ecuador (I STILL need to get some pictures on here!) Cale has been overall really great. He’s been back to laughing a lot and being silly and being willing to do/try things.
It may seem like I’m going to jump around in thoughts but I promise it’ll all come together…well, this is all coming out of my head…so I can’t really promise anything!
Many of you have noticed I haven’t been blogging nearly as much as I used to. Part of that is just the business of life. Part of it is the challenge of not knowing how to put into words our daily life. I titled this post “Living Our Brain Injury” because although Cale is the one with the actual brain injury, both of our lives our fully impacted. As much as he lives every day with his brain injury, I do as well.
I’ve been told since the time I was in ICU next to his bed that all brain injuries are different. I’ve been told the journey is a marathon not a sprint. I’ve been told the medical world doesn’t actually know that much about the brain.
Although I loved the honesty and I needed it, these aren’t quite things that were easy to hear. What do we do so often in this life? We compare. We compare whatever it is that we’re going through, the way we look, the different way we handle situations, the choices we make;  the very lives we live. We compare.
While in the hospital, you think this is it. We can survive this. We can make it through this. This is the hard stuff.
There’s no way to prepare for what comes after you leave the hospital. For some, that is when the good stuff comes. Life starts. The goal has been made. For some, there’s a physical goal that always feels like it’s around the corner. There’s something to work towards and focus on. And for some, like Cale, every single day is a new battle ground. There is no rhyme or reason for how things unfold. There’s no way to measure and make sure things level out. There are so many ups and downs within even just a few hours, you just kind of have to roll with it.
I decided the best way to give the best picture of how the week went, would be to go through each day as it unfolded. Obviously I won’t be able to give every single detail, but I’m hoping to paint a little of our life for ya…
Saturday
We had to wake up at o' dark thirty. Our flight was out at 6am and Friday night when we tried to get to bed early, we both were wide awake with no hope for sleep! It took a while but eventually our eyes closed and then suddenly my alarm was going off. Yikes! Cale was excited all morning. Tired, but excited! We had some good laughs and made silly faces at people. I made sure to continually bring up our excitment for the Sports Clinic and Cale was always in agreement. We celebrated his birthday by spending our first day in San Diego at Sea World! Neither of us have ever gone and his friend TJ lives just a couple hours away so he drove down to meet up with us.
We're still asleep in this picture...

That would be TJ carrying Cale on his back going down to get splashed!
 
They didn't make it quick enough to get splashed at the Shamu Show but they did get soaked by the dolphins!
 
It was such a fun day! We were running on nothin' but laughter and good company!
Once back at the hotel, Cale was tired and done. We still had an orientation that night, but Cale had switched gears. He had his fun and was ready for the trip to end.
 Sunday
The very first thing Cale said to me after waking up was, "I want to go home." I decided to let things play out with the thought that when things actually started he would be ok. Well...not so much. The stinker started things off with a BAM!

I could not get him off the bed and dressed for the day. We had the opening ceremony to attend along with getting registered and a brunch. Within just a few hours he tried to bolt from the hotel 4 times and locked me on the patio. He was not happy. I used to be able to redirect his attention to something else or get him to calm down, but now he's bigger and stronger and can move me and keep going. I'm sure our neighbors in the hotel were quite curious of all the commotion. We tried having a guy from the other team come talk to him and see if he wanted to go out or stay and play cards. Cale wouldn't have anything to do with it. Our coach tried talking to him...nothing. Finally a group of 5 or 6 piled into our hotel room ready to talk him into staying but also prepared to buy a ticket out the next morning for us if needed. At that point I honestly thought we were done.

Before they all came in, it had honestly been another one of the most challenging days. Cale was so angry and there was nothing I could do. With him being more aggressive, I was limited into how much control I had in the situation. I even sent Mama a text at one point letting her know I had no idea what I was doing and that we may be on our way home.

It was awful. I don't quite know how to put into words the measure of just how terrible it was. I couldn't leave the room to get food or anything to drink for us so it was good that I had snacks from the plane!

When the group did come and talk with him, at first it didn't seem like anything they could say was going to help but finally I saw something in Cale shift and decided it was a good time to step up and try something again. We were able to get him to agree that if we all went out for dinner and got him a massive tasty steak that he would try to make it through our first day which was surfing.

We walked around and spent time together that evening outside of the hotel room and totally enjoyed each other which was the first for the whole day. I knew my eyes were puffy and I looked like a wreck, but it didn't matter...I just wanted to enjoy him.

 
Monday 

He loved surfing last year. Although he hated being out of the water and being cold while waiting his turn, he loved loved loved the actual surfing part. I remember being so nervous because ever since the accident, he's been so afraid of water and hates when water touches his face. Yet, even when he fell off the board into the water and went under for a second, he got right back up.

This year, 10 minutes in the water and he was out. I got exactly one picture of him on the board. He was mad when I saw them walking him out of the water. The look on the instructors face told me enough but as soon as I made it into the water and reached Cale, he said over and over, "I'm mad!" "This is dumb." "I'm done." He needed my help to walk to the chair parked on the sand, but within minutes he wanted to bolt. He wouldn't let me help him walk so he slid off the chair onto the sand and crawled all the way until reaching the cement wall. I'm sure you can just imagine what we looked like. Cale crawling and me walking alongside him piled high with all of our stuff...yep.

He took off wanting to walk to the airport. During these new episodes, I just let him walk. When he's filled with anger and the adrenaline is pumping...it makes for some good exercise for him! Thankfully we were able to get him calm before he reached the street! We found a shady spot and a bench and went to town playing Crazy 8's.

Disappointment. I played cards and smiled but inside I was filled with so much disappointment. It was like I could actually feel myself wearing it. This year during the second half I was going to surf with him. I had been so excited for weeks about it. I also, again thought he was going to do even better this year...except he didn't even give it a chance.

After we ate lunch a car brought us back to the hotel while everyone else continued surfing. Right before leaving one of the other guys on the team came up to us with his wife and when I told them Cale had made it 10 minutes, she got a really big smile and said, "Good job Caleb! 10 minutes is better than nothing! We're proud of you for giving it a shot!"

Ouch. The whole ride back to the hotel I thought about how easily I get so caught up in the healing process and my expectations (that word always seems to get me!) that I totally forget about the very fact that Cale has a disability. He was in a coma for almost 6 months, in a hospital not talking or walking for much longer, and has surpassed almost all reports against him...and yet once again I focus on what is not. He was in the ocean on a surf board for 10 minutes.

That's a pretty huge deal.

After getting back to the hotel we went to a room they have set up as a decompression room. It ended up not being what Cale needed, but we ended up talking with some of the SSC staff for almost two hours. During that time we did borrow a wheelchair for the rest of the week. Last year we didn't go out to eat outside of the hotel or do much extra because its so much walking and Cale was wiped out exhausted after every day that he didn't want to do anything else. Having the wheelchair helped a ton! Especially for lifting the mood a little...


Tuesday

Cycling! I was so super pumped for this day. Cale had made it another night and although he still said about every 20 minutes or so that "home is better." I had no worries about us getting on a bike! We've been trying since February 2011 to get a bike for us from the VA. It has been a long and frustrating process but the knowledge that one day we'll maybe get one keeps me excited!

When Cale is on the bike, he can keep going and going. Because of all the factors that play into his specific injury, there's not much physically or mentally that he can do for a long period of time and actually enjoy. His Xbox has become a whole other story for another time...

One of the greatest things for me about this week is watching how awesome all of the SSC staff and volunteers were with us. They really went above and beyond for us working with Cale's needs. He was a very difficult challenge...for everyone...but from the rec therapist from the Seattle VA all the way up through to the guy who runs the clinic, they helped so much!

One of the many things they did was created a tandem bike! They didn't have one last year and it was a bit scary with Cale on his own recumbent bike. This year and all of his mood swings...well, let's just say him being solo was not a goooood idea. Monday night one of the volunteers took two bikes that weren't meant to be together and created a way. It was totally perfect! It made the first part of the day so wonderful for us! Cale was once again riding and riding not wanting to take a break! I had to tell him we needed to stop and eat lunch with everyone!

After lunch it was time for the long ride. Last year he did so good with this part except until he had to go to the bathroom real bad and we turned around. We started out great this year. He was ready to ride and may I just add that he kept yelling "faster! faster!" and my little legs were trying so hard!

And then his foot slipped off the pedal. Strike 1
And then he needed to go to the bathroom. Strike 2
And then his helmet was loose. Strike 3

You may think these are three small things but when you have a brain injury like Cale's and you're already hot and got a whole lot of stimulation going on, then when your foot slips off the pedal when you're cruising and having a good time, it's a big deal. And once you're going again, feeling good, and you have to pee, well, this is just about enough to make you fall off a cliff! Now, when things are looking up again and you're feeling like a new empty man and your helmet is loose and uncomfortable...what?!

You're done.

You're so done that you get yourself right off that bike and start walking. You bolt. Oh dear! Thankfully there were some of the volunteers around and after unsuccessful try after unsuccessful try to get you back on the bike to at least ride the several miles back to the tents, a truck comes to get you and your wife.

I totally forgot to write about his bolt before the cycling had even started which had us headed straight for the highway...on foot. Redirect! Redirect! Redirect! When that doesn't work...hop on a motorcycle and head for Mexico...just kidding.

The other part about the whole day was that it was Cale's birthday! It did make him happy everytime everyone sang to him and we did go out for steak and ice cream that night. Along with a really super great visit with some of our friends on our team, the night was perfect!


 
Wednesday

Yes! Wednesday came and we were still in San Diego and Cale was still giving everything a try! Wednesday was sailing day which meant after two days of waking up earrrly, we finally were able to sleep in a bit! I had actually woken up early enough to get a nice run in before the day started. Cale woke up in a good mood but when I told him it was sailing day, he was no longer thrilled. Last year sailing was a bummer because its slow and he wanted to go fast. I wasn't sure I was even going to get him out of the room, but he eventually agreed.

A little time waiting down by the boats and he was ready to bolt again. This time he was in his wheelchair. It's really sad, but also...really funny watching him try to bolt in the wheelchair. His arms still don't work together great and so his left arm gets going trying to make it go and the right arm starts out great and then has a mind of its own.

I know. I know. I shouldn't be laughing, but it really is kind of funny.

Because he wasn't able to bolt, I pushed him away from the group and walked a little. He then got mad at me and started to stand up to leave. I knew I wouldn't be able to chase him and take care of the chair and with some coaxing I was able to get him calm again.

Once again the SSC crew stepped up and let me go on the Stars and Stripes with him. Only veterans are supposed to go, but everyone knew he wasn't going without me. This was actually a blast for him! It gets a bit faster than the little one he rode in last year and the waves and dipping added some excitement. I think if it wasn't so long, he would have had a great time the entire ride, but about half way through he was bored and ready to get off...nowhere to bolt to though!

They were letting all the veterans take turns steering the boat and Cale did not want to do it! He was scared! With his balance being so off and then being on water...it would have been scary for me too! I let him know that I thought he should give it a try and right after one of the other guys asked if he was going to do it...so he did! He did and he did great! He was all smiles the whole time and even got it up to 10 knots! As soon as he sat back down he said it was scary and fun!

You go man!

Wednesday night was also the block party for everyone! This year we were aboard the USS Midway! There was great food AND great music thanks to the John Corbett band! His wife Bo Derek was also there and both have a heart for veterans! The concert was a blast and Cale had a good ol' time dancing! He danced with two other ladies besides me! Haha! One of them had asked him earlier in the day and he agreed. Of course he had no memory of it when she asked him about it at the block party. I leaned over and told him he had said yes so a couple minutes later he went out with her for a dance and then he also very sweetly asked the rec therapist from Seattle to dance. The two of us got a couple in as well before all the noise and long day caught up with him.





Thursday
The day the week changed.

Last year the worse day for Cale was Track and Field. I remember the morning last year when he got really mad and had to sit on a bench a little off from the group (Uh, yeah...no just sitting along anymore!) for a bit and then he was fine, but bored the entire day it seemed like. We started out walking around the track and last year he had given me his cane and wanted to walk the whole way without it. He used my hand of course, but as long as he didn't have any other help. This year when we did the track he was much the same. He walked around using my hand while all the others ran ahead of us, but towards the end he said, "I'm done." we made it around the next corner and I gave him the option to cut across so we could go sit, but he had to make it to the finish line before he would sit! It was so cool! He then even stretched a little with the other guys before sitting.

The field part was actually first and once again he did some throwing of the shot put, discus and javelin. He did good with the shot put and javelin, but wasn't a fan at all with the discus. While there we met a few from the paralympics and one helped him out with the discus.

Next was rowing and well, that didn't go over well. Last year he did great with the machines that prep ya for it, but this year he just wasn't into it. He also said the rowing part was so boring. He came back after 30 minutes and was done and the group went back out.

Track and Field day is hosted at the Olympic Training Center in Chula Vista. After eating lunch there, we all had the opportunity to visit the little shop before heading to the next event of the day. Through lunch and even the shop Cale was in a great mood and doing just fine, but the next part was archery. I was so nervous about it!

When he did archery while we were in Palo Alto, he had a lot of help and it was still frustrating even though he liked it. Since the week was already full of a lot of anger and frustration, I didn't know about adding more on top! The coach had Cale sit right down and shoot an arrow with a normal bow. After his first shot she told him to hang on and when she came back she had an adaptive bow and a hand thing to help. Once Cale shot his first arrow with that, he didn't stop! Arrow after arrow after arrow! And guess what? There is no way to set up archery for success.

It didn't matter. He would miss and grab another arrow.

Over and over again.

No breaks.

They all had 12 arrows and then after all arrows were shot the volunteers would go collect and another round would start. A lot of the guys would switch out or take a break for a round, but not Cale. Nope. Not one break.

He absolutely loved it.

No joke.

His last few arrows he shot, all of his upper muscles were shaking and he still kept going.

He made two in the yellow.

He smiled a ton.

He found something that he loves.

He found something he could do.

He found something he wants to keep doing.

He found something he's talking to people about!

He. loved. it.

Ahhhhhhhh!!!!!!!!!!!!!!!!!!!!!!!!!

Thank you Jesus.

Archery changed everything. He was walking on sunshine the rest of the day.

We've already started looking into the next step for continuing this at home. Ya know...after all of our trips coming up!


 
 (I have a video to share...but blogger is being dumb.)

Friday

A kayaking we went! This was another event that was so great last year and this year it just didn't go over as well. He actually started off great and believe it or not we did have a bathroom run before jumping into the little thing but almost to the bridge (a couple miles from land) Cale sees a little area of land right where the bridge ends and says, "pull over!" He had to tinkle.

Uh...

We turned around and headed back. After that he was done with the whole kayaking thing. Although after lunch he did go back at for a few games. At first I sat and watched all the fun but soon the idea of trying out a paddle board came up. Sure! I did that until Cale decided he was done done done.

Even though he was "hot and tired" as he said, he did so well that day! He had worn a whicker hat and had taken his shirt off...and even danced around a little bit...

ha!


Friday night was the closing ceremony. Cale was chosen to be the one to take the team flag to the front for the team. Another guy from the team went along with him to help out with his balance. I didn't get a picture or video of it (huge bummer) because I completely froze. I had my phone on the table ready to take several pictures but as i watched them walk to the front of the room, tears filled my eyes.

We made it.

It had been a really long challenging great week.

And instead of being at home early, we were still there and he was carrying the flag.


I'm trying my best to explain how the week went and how it wasn't all bad, but not all good either. I'm trying to show the way our life is with Cale and our life with brain injury, but I know what I'm trying to get across isn't going to come out exactly the way I want it to and you're not going to get everything that I'm trying to say, but if there is one main thing, I hope you get this...

It is one thing to be proud when something is challenging and amazing and Cale is all for it and totally loving every minute. That was last year. I was so proud of him for all the hard work he was doing and how he was so tired but still working so hard. It's a whole other ball game when Cale is hating something and just wanting to go home, but still works hard and keeps going. He pushed through and made it. He wasn't all about lovin' it and being pumped but he didn't quit. He didn't give up. He didn't go home.

He stayed and continued on even though it wasn't his top pick to be there. He faced the challenge day after day and even though he didn't do every event for the whole time, he did every event. He tried every event. He stuck it out.

I am so very very very proud of him.

I've said it before and I'll say it again, the whole week at SSC and even our normal day to day life can be so difficult and may make me want to punch a wall, but when I get to see him smile and light up because he is having a moment that he can actually do something when life with a brain injury is constantly filled with can't, it makes it all worth it.

Multiple times through the week random people would come up to me letting me know how much we've impacted them just from them watching us.

"Kathleen, you will never know the amount of lives you affect with your love"
or
"My life is forever changed after watching how you are with him."

These were not all and they're not because of anything that I'm capable of on my own. It was a reminder that every time we step out and are willing to face a little bit more of a challenge, the Lord is using us. Shaping us. Growing us.

Since we've been home...

I have already seen changes in Cale. I love this. I love that during these times of pushing and stretching him, it produces fruit!
He was super excited to get home on Saturday and I wish I could say we were able to be lazy and not move the rest of the day, especially since the shuttle to the airport picked us up at 4:30am and that was after going to bed around 11pm...
But, I walked in the door, set stuff down, got myself showered and cleaned up and then I was off to Cale's sisters baby shower! Right after I came home and unpacked and then the two of us went to visit with friends for a really great evening of pizza and talking.
Yesterday we did stay home and relax. Actually I worked on stuff but at least I did it in my pj's! We also ran some errands and Mama and I got a movie night in!
Cale said yesterday morning, "Home is like a candy bar."

I put together a little video from our trip. I didn't get shots that I had wanted and planned, but I do believe it turned out quite nice. I chose the song because we've gone through some rough patches in the last few months that have just been plain ol' hard, but I think this last week while in San Diego, well, it took our marriage to another level.

Boy, I won't give up on us
even when the skies get rough...
God knows we're worth it.



We have a whole lot more life and love ahead of us and I'm so thankful I get all these adventures with you next to me! I love you Caleb!


ya'll we got some crazy happenin' up in here!

 

8 comments:

  1. Marc Nelson, I'm keeping you guys in prayer!!!! God Bless you both.

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  2. It's been so hard to get on and keep up with you these past months , BUT I am so glad I read this one ~ Girl so proud of YOU ~ to see it with the Jesus perspective ! We continue to pray for you and Caleb !!!! lovvvvvvvve you !!!(((()))) reenie

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  3. This post is very inspiring. Thanks for the share.

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  4. My Dear Kathleen, Father has given you a special grace, which you are wearing well. My eyes are holding the tears from my heart. I am so full of thankfulness that I get to see/be part of your life. Thank you for encouraging me to keep on keeping on NO MATTER what. I am proud of you and all you have done. Cale, I can't begin to imagine what Father is leading you through. I am proud of all the hard work you do, and that you keep on trying. Kathleen, I will trust Father to bless you as ONLY He can. You are in my heart, Marion

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  5. Kathleen,
    I have been following Cale's progress from Day 1. He is blessed to have you by his side. You show all of us young wives exactly how to love and be determined to have a happy marriage. Thank you. You are an inspiration.

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  6. Kathleen,
    Thank you for your honest vulnerability in letting us see life, if only for a moment, through your eyes. I am inspired and encouraged by your life and love!

    Prayers and blessings to you all.....Love, Kimberly

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  7. Dear Kathleen,
    Just wanted to say I still say a prayer for Cale and you every night. Cale would not have a chance WITHOUT YOU!
    All my LOVE,
    Lorri C.

    ReplyDelete

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