When we arrived here in Baltimore on Sunday, I didn't truly know what to expect, but have had high hopes everything will be great. I mean, we got a room when we didn't think we would and Kaydence had been eerily good all the way here except for the one meltdown.
Monday morning, I put my dad in an Uber to the airport with a printed plane ticket because there was no way I was going to trust him working any new app on his phone at such late notice. Even Dad was like, "Nooooo. Don't trust me with an app." It makes me chuckle just thinking about it. We got ready for the day. I was pleased to find that all of Kaydence's breakfast essentials were available in the house already. I just needed to get her some whole milk and make sure we don't run out of Carnation. That was another super blessing. We made our way to the Kennedy Krieger Institute on foot. Yes, we walked. That may be my favorite part of where we are staying. We stayed in an office and met all of our therapists and team members and they asked us a lot of questions about Super K. A few took her away and evaluated her, but I just answered questions.
Tuesday rolled around and we went back to KKI. Kaydence was taken back by therapists and probably 30 minutes into this she was screaming. Not just any screaming, but her new horror movie scream. It is truly ear piercing. I have no idea where she was, but I could hear her. A dad asked his son if that was his little brother and I just looked at him and told him no worries for him because the screamer was mine. Therapy ended on a good note and we walked back to the house. I let her rest a few minutes before I fixed her lunch because I figured she needed the rest. Well that was a mistake. By the time I got her to the kitchen the onslaught of screams had begun. If anyone around the area was taking a nap, it was over. She was horrible. No matter what I did, she continued to be horrible. She was horrible until bedtime. Now before you say, "Awwww, she was tired and deserved to feel that way," let me inform you that she has been this way ALL. SUMMER. LONG. It has been the most nerve-wracking, emotionally and mentally exhausting summer ever. Poor Wade will even tell you that she has screamed 14 out of 24 hours and the rest of the hours she was asleep. I don't know how she is getting so worked up, but she is. And it isn't fun. I guess she had saved up all of her normal car ride screaming.
Yesterday - same song and dance except that I went up to the third floor of KKI and did some work. I could hear her screaming all the way up on the third floor as her banshee rivaling scream rushed up the stairwell. I was able to feed her lunch a little sooner and then she took a nap. In my mind, I knew what a nap meant. It meant that she would be up laaaaate. She was. I was. My mom was. Morning came too soon. Today I dropped her off and mom and I went grocery shopping for a few things. It was nice to go somewhere. After I picked her up? Same. I may call her the banshee from now on.
There have been a couple of highlights. First of all, we have discovered Kaydence really just wants me to sleep with her. She likes snuggling with her momma. The first night though, ohhhhh, there was a serious God wink. If you really know me, you know that two summers ago one of my students who had just graduated died in a car crash. You would also remember I was pretty close to her. So I went down to the computer room to print out that plane ticket for my dad and this girl was in there on the other computer. I knew she was here because she has cancer. It's pretty obvious. She told me she had finished her treatments but had to stick around a little while longer. She is 15, she grew up a little while in Texas and her name is Marianna. Whoaaaaa. It just nearly took my breath away. How could it be that the very first resident, and my next door neighbor, is Marianna? I just felt like God was saying, "See? I got you. And I've got Marianna too." When she told me her name I told her that there was no way I'd ever forget her because she shared the name of one of my most favorite students (though I did not share the rest of that story). She is seriously sweet and her mom is too. I ask that you say a little extra prayer for her as often as you can because yesterday she got news that she will have to take another year of treatments. It hit her and her mom hard.
So pray for Kaydence to settle down and stop the screaming, for therapy to go well, and to rebuke cancer in Marianna.
Monday morning, I put my dad in an Uber to the airport with a printed plane ticket because there was no way I was going to trust him working any new app on his phone at such late notice. Even Dad was like, "Nooooo. Don't trust me with an app." It makes me chuckle just thinking about it. We got ready for the day. I was pleased to find that all of Kaydence's breakfast essentials were available in the house already. I just needed to get her some whole milk and make sure we don't run out of Carnation. That was another super blessing. We made our way to the Kennedy Krieger Institute on foot. Yes, we walked. That may be my favorite part of where we are staying. We stayed in an office and met all of our therapists and team members and they asked us a lot of questions about Super K. A few took her away and evaluated her, but I just answered questions.
Tuesday rolled around and we went back to KKI. Kaydence was taken back by therapists and probably 30 minutes into this she was screaming. Not just any screaming, but her new horror movie scream. It is truly ear piercing. I have no idea where she was, but I could hear her. A dad asked his son if that was his little brother and I just looked at him and told him no worries for him because the screamer was mine. Therapy ended on a good note and we walked back to the house. I let her rest a few minutes before I fixed her lunch because I figured she needed the rest. Well that was a mistake. By the time I got her to the kitchen the onslaught of screams had begun. If anyone around the area was taking a nap, it was over. She was horrible. No matter what I did, she continued to be horrible. She was horrible until bedtime. Now before you say, "Awwww, she was tired and deserved to feel that way," let me inform you that she has been this way ALL. SUMMER. LONG. It has been the most nerve-wracking, emotionally and mentally exhausting summer ever. Poor Wade will even tell you that she has screamed 14 out of 24 hours and the rest of the hours she was asleep. I don't know how she is getting so worked up, but she is. And it isn't fun. I guess she had saved up all of her normal car ride screaming.
Yesterday - same song and dance except that I went up to the third floor of KKI and did some work. I could hear her screaming all the way up on the third floor as her banshee rivaling scream rushed up the stairwell. I was able to feed her lunch a little sooner and then she took a nap. In my mind, I knew what a nap meant. It meant that she would be up laaaaate. She was. I was. My mom was. Morning came too soon. Today I dropped her off and mom and I went grocery shopping for a few things. It was nice to go somewhere. After I picked her up? Same. I may call her the banshee from now on.
There have been a couple of highlights. First of all, we have discovered Kaydence really just wants me to sleep with her. She likes snuggling with her momma. The first night though, ohhhhh, there was a serious God wink. If you really know me, you know that two summers ago one of my students who had just graduated died in a car crash. You would also remember I was pretty close to her. So I went down to the computer room to print out that plane ticket for my dad and this girl was in there on the other computer. I knew she was here because she has cancer. It's pretty obvious. She told me she had finished her treatments but had to stick around a little while longer. She is 15, she grew up a little while in Texas and her name is Marianna. Whoaaaaa. It just nearly took my breath away. How could it be that the very first resident, and my next door neighbor, is Marianna? I just felt like God was saying, "See? I got you. And I've got Marianna too." When she told me her name I told her that there was no way I'd ever forget her because she shared the name of one of my most favorite students (though I did not share the rest of that story). She is seriously sweet and her mom is too. I ask that you say a little extra prayer for her as often as you can because yesterday she got news that she will have to take another year of treatments. It hit her and her mom hard.
So pray for Kaydence to settle down and stop the screaming, for therapy to go well, and to rebuke cancer in Marianna.
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