It feels like so much has happened since I lasted posted. It for sure feels longer than a week when I look back and remember how happy and exciting things were as I typed up my last post. What was my last comment? Something about VA appointments aren’t a big deal…?
Let me go back in time a little. I posted on Monday after we were finished with two appointments and were tucked comfortably back in our hotel room. Tuesday morning we had another appointment but it was a different kind, not at the VA. We went to a bike shop! Last year after getting to the Seattle VA, we filled out information for a tandem bike. I’m pretty sure I at some point wrote about how excited we were to get it. Well, it’s been well over a year and still nothing! Boo. This appointment was us doing the steps to get the bike again. It was actually great that we had to do it again because the bike that we have picked out is perfect! The man that owns the bike shop came up with a great plan for us so now we wait to see if the VA will agree :o)
The second appointment for the day was testing. So far during Cale’s recovery, he hasn’t been at a level that he was able to tolerate cognitive testing to find out where he’s at. I was told after it was all done that it was just basic testing, but it seemed pretty intense to me! I guess the more extensive testing will be coming in a few months. I was impressed with how well he did with the testing and how well he handled it! During one point she had him draw a clock and gave a specific time. He struggled so much with it. I watched him as he fought with his hand and rubbed his eyes. He tried so hard and it should have been such a simple task to complete. My heart was breaking as I watched struggle after struggle. While my heart ached for him I also became overwhelmed with a deep since of pride for him. That man sitting in front of a lady he had never met was doing everything she asked even if it took all of his energy. It was even commented on twice while in Seattle about how he tries hard at whatever task is at hand. Such a blessing he is! After all the testing was completed, we spoke quickly about how he did. In all areas he did show impaired, which wasn’t a surprise, but I couldn’t be crushed after just witnessing him push through and do his very best.
We had dinner with friends that we had met in Colorado and again enjoyed a wonderful evening together. I was still excited for the last appointment and ready to come up with a new therapy plan for Cale. I felt like everything had been smooth sailing and Cale was still in a great mood. All was well.
At first everything was pleasant, much of the normal questions about Cale and his care. I sat in the corner holding my notebook, pen in hand ready to take notes on all the information that was about to be presented. I could see the look in Cale’s eyes and watched him began to fidget from boredom as I answered every question the best that I could. The questions started to become more involved forcing me to rapidly think of our goals and the specific changes I’ve seen in Cale. I didn’t think a thing differently and waited for us to see the main doctor. When she came I listened to every word that was spoken and even joined on the walk in the hall as the two doctors observed Cale’s gate as he walked. In my little clueless mind things were looking up and every minute was closer to us leaving with a plan in motion. All tires screeched to a stop when the doctor sat back in the room and let me know that my husband has had a lot of therapy and it’s been two years. He has stabilized across the board and has hit a bump that he may not get over and that they were not going to support continued treatment.
The room became very small very quickly. She switched gears talking about something else and I was fighting back the tears. I put on a smile and left the room. I realize that some may have taken a stand in that moment and had many words to share with the doctor, but I always need time to pray and process. There was a lot said in the short time we were in that room and what stuck needed to be surrendered. We walked out of the VA fairly quickly and got to the car. I was still holding back not wanting to completely let everything out because I still had to think of Cale. I still had to get us home. Most of the way a word was hardly spoken. Our ipod was playing song after song as I let my mind find a way to put all of what was happening together. Our source of treatment was just denied. What does this mean? Whenever a slower song came on over the speakers, Cale would have me change it until there was a fast song again. At one point I surrender by Kim Walker came on and there was no changing it. I sang. I belted out the words in a desperate longing sense of freedom from carrying the burden that lay before me.
That led me to a domino effect of thoughts about how people that know Jesus or don’t know Jesus walk through trials in life. There are people that have someone they love living with a brain injury that maybe have never given the name Jesus a second thought. Does the loved one heal? Make progress? Yes. Sometimes they do. Sometimes they don’t. Is Cale as far as He is because of the Lord healing him? I believe yes, but do other people that don’t know Jesus progress farther than the doctors predict? Sometimes. The brain injury journey of recovery may not look so different from person to person, but what becomes so real and “different” is in those moments when reality just doesn’t look so pretty and the urge to flee from it all surfaces, when the “it isn’t fair!” cries out, and the amount of what has been taken and will never be is measured, I don’t have to take the next breath alone. The next step is not done with the weight of it all.
It’s so much bigger than just knowing and saying God carries me and is with us. It’s way more than believing and trusting He has plans for us. It goes a lot farther than the pain that I feel missing my man. The foundation of who Jesus is and what He has done is the truth that sets us free from the bondage of doing it all alone. He was a real man and He did walk this earth. He was beaten and whipped into a bloody mess. He did die on a cross, BUT He rose again! When I take it back to the cross, I’m reminded in a tangible way about eternity. This life is not what it’s all about.
With all of these thoughts running through my head the last week, singing Christ is Risen by Matt Maher at church was perfect! Oh death where is your sting?
The amount of therapy I can fight to get Cale, the different treatments I can search out for him, the days spent on my knees praying for his healing…they are not what this life is about. They’re good things, but not the main point.
It’s just earth.
It’s not our home.
And no matter how far Cale does come, I’m his wife and he’s my husband and I love him so.
The gift that topped it all this last week was yesterday while I was on the phone, I walked to our bedroom and completely stopped talking. I lost all focus of the conversation and my eyes focused on our bed. Cale had already been in the living room with me for a while, but before he had joined me, he made our bed.
Does he normally have the initiation let alone the desire to make our bed? No. Never. I try to have him help me fairly often as part of our morning, but him do it on his own? Not a chance.
Twice on Wednesday Cale would say to me, “You’re random but I love you anyways.” What?! Haha! It was funny that it kind of came out of nowhere and that he said it two different times. That night at neuropsych I was telling Dr. L about it and we laughed and the he asked why he thought I was random because I always have a notebook taking notes, remember what other people say, and always have all the correct documents. Cale without hesitation says, “You don’t see her other times!” I was laughing so hard! Dr. L then questions, “is she random like weird?” “Yep. She’s weird” says my oh so sweet husband! I couldn’t stop laughing thinking about Cale saying, “other times!” Oh man.
This morning Cale says to me, “You’re lucky you have an H” Huh? When I asked what he meant he said, “or else you would be Katleen.” And then cracked himself up.
I would be lying if I said that with all of us together again; I’m not feeling the pain of missing Cale
and being reminded yet again how his disability has changed so many details in our life. I also can’t help but smile and think about where we are in life and how blessed we really are. It’s amazing to see him laugh and joke with our friends when not too long ago we were praising the Lord and rejoicing over him lifting his arm or moving his fingers.
The bike that Cale is on is part of the whole bike that we're trying to get. There's a device to connect two of those bikes together and will allow for us to still go on bike trails. We'll see how it goes!
My gift. He is the sweetest!
Cale went shooting with all the guys yesterday. Turns out the gun beat him up a bit! I told him it looked like a lightning bolt so i should call him Lightning Mcqueen and his response was, "Lightning McKing! Girls are queens!"
p.s. I had a video to share but blogger is all switched around and crazy...so I haven't figured out how to post one yet!