Saturday, June 4, 2011

bad day to ball game!

I heard Cale stirring in bed and it was only minutes before I was supposed to be waking him up. I turned the corner to take a peak! He looked right at me, so I ran and jumped on him. “Good morning!” I said with a little too much enthusiasm…

“Good morning, without the good” he replied.

Uh oh…

Yes, it was the start to another hard day. I’m afraid that therapy’s today were a little rocky and so was the rest of the day! Cale had his moments of willingness and smiles, but he’s back to being frustrated…really frustrated.

It’s still pretty neat though, because this time, it’s really causing him to push himself. He is now very much in the mindset that he can do it, not so much that it’s too hard. I’m trying to be encouraging and gentle, without smothering the fire burning within him that causes him to press on!

In OT we went to Pacific Place and tackled the escalators! I will be totally honest; my heart stopped beating a few times. I managed to busy myself getting a picture at first, but afterwards when I watched and was right there, oh the panic! Who knew they were so challenging?!


By the end of the time, Cale was able to get off them fairly well with his cane and just his OT right there with him, but getting on is still a little too tricky. We’re not quite at a point that just the two of us can do it. Part way through I saw “the look” I could tell Cale was going to blow. After stepping off one of the escalators, I pulled Cale over to the side a little and talked with him. He was upset. He ended up telling us that he wanted the OT to shut up, but that I could be the one talking. So, that’s kind of how the rest of the session went. I tried to come up with things for him to talk to her about and that seemed to help. He just kept saying, “I can do it!”

The awesome part during that session was that, more than once, we gave him the easy way out. It was so much work and took so much energy going up and down the escalators, but he did it and all the walking. Every time we asked if he wanted to take the elevators instead, he kept saying, “No, this is easy!”

Then, during speech, he had another blow up. This time it wasn’t in the middle of the mall, rather our little hotel room, but it was still so sad. After giving him a few minutes, Alita was able to get him to watch a Red Wing’s video on youtube and then ask questions about it. That helped a little, but he wasn’t too happy for the rest of the time. She was also trying to get him to do some word finding. He was having trouble getting the word escalator out, but he was able to show her the motions. She gave him a pen and asked him to draw it…


As soon as she was gone, we had to hurry out the door for radiation…again, not exactly what Cale was looking forward to. He kept saying over and over how he hates this place and he wants to go home. I was trying my hardest, like, pulling out every ounce of compassion in me, and trying to be a comfort, but also, make sure that he knew this is where we need to be right now.

The day just wasn’t getting any better for him, so less than 2 hours before leaving our hotel, we gifted ourselves tickets to the Mariners game! His OT had suggested we go, and at first I was thinking that it wasn’t really enough notice, it would be just me with him and so many people all around, and he’d be tired and grumpy. Well, I finally decided to just check online and see what we could do. Cale seemed interested in going, so we did!


I’m SO thankful that we just went, because it was exactly the good ending we needed to a not-so-good day! We had a blast and he was very active with the crowd! He was dancing and cheering, he sang along to the songs, and yelled out with other guys. He also stood with everyone without me being the one to stand first or ask him to stand! We laughed and cheered together…so much fun! He even tolerated it all! This in itself is HUGE! This is the first game that he’s made it to the end without being over tired or stimulated!!!

I’m not totally sure we needed to actually go to the game because we had quite the adventure getting there! Amelia (gps) was quite lost and confused…so that meant so were we! We were even laughing about that. Cale gets a kick out of all the conversations I manage to have with this little voice in a box. He now acknowledges her presence in our car and makes sure to say hi! ;) Haha!

Once at the game, we had even more adventures! Cale always likes to eat food at the games, so we did it again tonight. I had gotten our hot dogs (perfect baseball food!) and a soda for us to share. As I’m walking back to our seats with everything, I notice that I’m also leaving a soda track and now have soda on my foot. Yuck. The bottom of the cup was leaking in an amount that wasn’t going to do. I took it back and with no issues was able to get a new soda.


Cale likes mustard. I think it’s gross. Our time of eating and watching the beginning of the game consisted of mustard and ketchup all over…both of us. Did I say yuck yet? Cale chocked on his hotdog which, like earlier managed to bring my beating heart to a halt. He’s done this once before when he had taken a large bite of pineapple when we were still in Palo Alto, but since then he’s done fine. After making sure my husband (and I) was going to continue on breathing, I was ready to launch the killer hotdog, but he insisted that he had to eat every bite. Breathe Kathleen, just relax and breathe…yeah right. I watched every bite and reminded him (maybe a little too often) to chew really good.

I did manage to give myself a pat on the back for grabbing 100 napkins when I had grabbed the straw and his killer hotdog fixings. We used every one of them!

Bragging time…!

CALE USED HIS CANE THE ENTIRE TIME!!!!!!!!!

Yes, I was being brave and decided to try his cane. I knew it was going to be a lot of walking, I knew he was tired, and I also knew that there would most likely be stairs, BUT, I had to try. As much as I really wanted to go for it, I again gave Cale the easier option and offered his walker. Just taking the walker and not the wheelchair was already a big deal to an event like this that was going to last so late! I’m not sure if it was the excitement of the game, the discouraging moments throughout the day, or just the fact that he’s been doing so good with the cane, whatever it was, caused this girl to step out and yell “charge!” as if I was on a horse about to enter into war.

Except that it really was nothing like that-just a parking garage.

Along with all the walking, we found our section and were told that we were on row 40 and needed to walk down all the stairs to reach row 9.

Uh…Cale?

What to do…what to do? Hmm…what to do?!

HE DID IT!

He (with very little help) managed to get himself down all of those stairs, with all the noise and people walking by, and scoot right into his seat! That’s my man!!!

I was then sent off to hunt for food-into the wilderness I went!

I’m SO proud of him!! That was a LOT of hard work! After the game of course when it’s late and passed the time he’s normally lying in bed, he has to get himself right back up the stairs…

And guess what?!

HE DID IT!!! He did use my hand for a lot of support, but still...NO walker or chair! He even walked all the way back to the car with a great attitude. We played a couple games of Crazy 8’s while we waited for cars to clear away and then we had a super fun drive back to the hotel. Cale fell asleep within minutes of hitting the bed after brushing his teeth. He’s out and snoring steadily.

Did I happen to mention how it was such a good ending to a not-so-great day?! That was some real feel better therapy for both of us! I was able to encourage and tell Cale over and over how proud I was of how he did today.

Awesome.

Not to mention, we won!! :)

6 comments:

  1. Well, i must say that I recently fell down the escalators when getting on, lol... I also frequently choke on food, so Cale has me beat :) All those stairs and all that stimmulation, and it sounds like he had such a good time! I occasionally look back to the beginning, when I felt there was little hope for Cale beyond a wheelchair, a trach, and a peg tube... how Amazing G-d is!

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  2. Sorry you had such a rough beginning of the day. Glad it ended well. Sounds like you handled everything perfectly. Praying for you both.

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  3. Escalators still make me nervous. Every time I get off, I feel like I've really accomplished something. As to mustard, I like "Zesty Honey Mustard" by Gluden's. I only ever use the regular mustard for potato salad, and just a little bit at that. I will trust Father for Cale, for you, and I will trust Him for extra understanding, patience, and compassion for the therapists. I love you, Marion

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  4. Sorry to hear about all the struggles, but then without even a little notice... Cale did walking, stairs, and even more therapy than the therapists could ever do in a session. And he excelled!!! Way to go on those "adventures" in life! Praying for a great day today!
    Terri

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  5. The Bensons6/4/11, 6:27 PM

    WOW Cale so incredibly proud of you that you were able to do all that walking with just your cane..I don't know if I could have done that. And Leena your patience knows no boundary. I guess that is why I am always telling people that you are what love looks like ...I am so glad that you had such a good time at the game...Hey be careful with Amelia or you might end up at a hockey game in Vancouver...LOL...We love you and are praying for you...
    Jean and Charlie

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  6. Taking the escalator is a huge accomplishment! I can remember a couple of years ago being in JC Penneys and trying to go up the escalator with my three kids. I put my middle child (5)in front of me, the 2year old was in the stroller, and my oldest (7) was behind me. I had no idea until that time how afraid she was of an escalator! I got 1/3 of the way up and had my oldest standing terrified at the bottom of the stairs. I had to try and run down the stairs that were moving up (with a stroller no less!) and get her to go with me. By that time, my 5 year old was at the top of the stairs afraid to step off! We were a mess. lol We have since conquered the escalator, as you will too, but it still takes some coaxing.
    Sharon

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