Today Jackie didn’t seem quite right. I couldn’t put my finger on it. I’ve learned with TBI trying to figure things out is sometimes futile. Jackie seemed really tired all day. Could it be some of the meds that he is still on from his hospital stay are making him tired, could it be he is exhausted from going head on into therapy sessions after spending two weeks in an intensive care environment? Yes, it could be all or any of those things. As long as Jackie is staying at baseline or better from a neuro function, then we are ok. I feel so blessed that Jim and I have been able to go through this together. My heart goes out to single care givers who walk this road alone. Some days like today can be harder than others. You wish from the very depths of your heart that you could rewrite the day of the injury, or that this would be one of the good days not bad ones. Having someone else here allows constant level setting and daily hugs. Never underestimate the therapeutic value that a warm embrace can provide. I digress, back to the day.
Today was a day to regroup, rebound and just be. Jackie had no therapy sessions so he could rest as much as possible, within the constraints of his new daily wake goal. We did let him sleep in a little until 8:30. Then it was time to get up and start the daily routine. Breakfast is the one meal that Jackie has been approved to eat. I made him the instant oatmeal he had enjoyed prior to his surgeries. He ate about two bites and then was full. His nutritional feedings overnight fill his belly and he just does not feel hungry. In fact, we couldn’t get him to eat anything today. Every time we asked him if he wanted a particular approved snack, he gave us a thumbs down. We know he is getting enough food and water through his feeding tube, but would like him to add additional calories by mouth. I’m sure with time Jackie will get there.
Becca would be proud. Even though we did not have speech, we worked with Jackie on his speech homework. Based on a request to Becca, we all were able to do the exercises together, moving the lollipop from side to side in our mouths, moving our tongues in and out, opening our mouths wide and licking our lips. All things Jim and I did without thinking. All things that took Jackie a while just to complete at maybe 50%.
As we were contemplating what to do next, Lori the art therapist walked by Jackie’s room. Every couple of weeks, she has an open group art therapy session in the dining room next door. We thought it would be a great thing to do. We wheeled Jackie over and got him started with colored pencils. Jim and I also started our masterpieces, Jim a pencil sketch of the architecture outside the big bay window, and I an attempt at a water color grapevine. Not too long into our works of art, it was obvious Jackie was not engaging, in fact he was falling asleep in his chair. Lori helped by creating a project for him. She wrote the word Eagles on a piece of paper and wanted Jackie to color in the letters. At first he was way out of the lines, but then Jim stepped in and together they made progress within the lines. Ultimately, none of our projects were completed, but we kept them for a future session. We went back to Jackie’s room, and got him into bed for a lunchtime feeding, meds and a nap. Just as he was about to fall asleep, Jim’s fraternity brothers stopped by with a half marathon race medal for Jackie. They had their shirts on and wanted to let Jackie know that their thoughts of him kept them running, even when they wanted to stop. Jackie held onto the medal and fell asleep. I hope someday he will be able to realize that he has been a source of inspiration to many and that something positive can come out of very tragic things.
When Jackie woke up it was time to root the Eagles on to victory! Then the boys went to the gym with me while I did some laundry. We finished the day on the second floor terrace for some fresh air. Even with the busy street sounds it was a beautiful, relaxing night. We reclined Jackie and he rested with the setting sun on his face. PTL Before we went back upstairs we read some cards to him that hadn’t been opened. As you know from the past, reading cards has been an emotional experience. Knowing that we may be heading down that path, we still felt it would be good for him to read them. Tears did fall, but we were able to get through more than we ever were in the past. We hope he understands just how many people love him and are praying for healing.
It wasn’t long before he was back in bed for the night. We spoke with Lindsay and Florent using the speaker phone. Even though he was exhausted, he hung onto every word that was said. I know it is comforting for Jackie to hear their voices. He smiled at their stories and I could tell he understood what they were saying, possibly jogging some memories he hasn’t thought about since February. They are coming for a visit on Saturday, we all can’t wait!
Tomorrow begins another challenging week of therapies. I’m glad Jackie had a day to rebound and get some rest. Hopefully your weekend was peaceful or at least full of moments where you could stand back and realize the blessings of each day.