Jake 2.0

I had a chat over the weekend with another mom from a group I belong to for parents of children with brain injuries. She was having a really tough time the past few days mourning the loss of her daughter...the daughter she had before her traumatic brain injury. Her daughter survived a horrible car crash, but the child that survived is not the same child she was before.

It's not something that most people who haven't experienced it really think about, but it's very real. People on the outside looking in see how blessed we are that Jake survived...and trust me, we feel extremely lucky he is still with us and are thankful every day. They see how far he has come and that he is still progressing, again all very true. But, along with all the physical struggles that are visible to everyone, there are parts of Jake's personality that are gone and others that are just different. We are luckier than a lot of people I talk to who's children now exhibit horrible aggression or insane mood swings. Most of Jake is still "there," but for those of us closest to him, we see the differences. My mom has mentioned to me, usually in tears, that she misses how easily she and Jake used to carry on a conversation. His answers tend to be shorter and he doesn't often initiate sharing things like he did before. I also really miss Jake's wit, at times some of the things that would come of out his mouth would floor me. I'm sure some his close friends notice the nuances in his personality too. He can tend to fixate on things or be repetitive and he doesn't always get sarcasm. Todd and I have a hard time processing the entire situation at times, I can't imagine how an 11 year old friend handles it.

We have seen improvements over the past year in many of these areas, but we've accepted that he is now Jake 2.0 and won't ever be the same as he was before. Part of it is because of the experience itself and what he's had to overcome, and the other part is simply due to damage to the brain that can't be fully repaired. There is nothing "wrong" with Jake or his personality, it's just different.

When your child survives a life threatening brain injury, you aren't given the time to mourn the loss of the child that was. All of your energy goes into their recovery. We choose to spend the majority of our time in "we are very blessed" instead of mourning the loss, but it creeps up every now and then and it usually followed by a fair amount of tears. 

He is still a very sweet and loving child that I wouldn't trade for anything, but I'd by lying if I said I didn't at times miss the "before all this happened" Jake too.

More Botox

Jake got another round of botox on Tuesday, this time for his foot. His last treatment was back in January and all of his hard work in therapy combined with acupuncture has kept him from having to get it again until now. He has been getting some really good movement back in his left ankle, but he still has so much muscle tightness pulling his foot inward, it's been slowing his progress and he needed the botox to help relax those muscles. We're doing it now so he can make the most of his five days of intensive PT he'll be doing over fall break at the end of the month.

Initially he was pretty bummed he had to get it again and felt like there was something he did (didn't do) that caused it. I explained to him that it was just the way his body was recovering and the fact that he still didn't need it in his arm or his hamstring was really good progress. He's been walking a little more at home without his brace and I think he is noticing an improvement. I'm anxious to see how he's doing after the PT sessions in a few weeks.

Jump Street

We took Luke and a few friends to Jump Street yesterday for his belated party with his friends. For those of you who don't know about it, it's an indoor trampoline park with wall to wall trampolines. I was a little worried how Jake would do and didn't know if they would let him jump with his leg brace but didn't want to exclude him from going. The boys have always been part of each others birthday parties. They told us when we got there that they were fine with it if we were.

In retrospect, he has been jumping on our trampoline all summer, so I don't know what I was worried about. As soon as we got there, they all took off jumping on the long runway type trampolines and Jake did fine. Next thing I know, they are playing dodgeball which to be honest, made me a little nervous. Jumping is one thing, but avoiding being hit by a ball (or other kids) while jumping and then throwing a ball back at the other team is a different story. As usual, I should have given him more credit, he did great. Todd was also playing with the boys off and on, but really let Jake do his own thing and didn't hover like I probably would have. I kept trying to get Jake to come out and rest, but would get a head shake saying "no." It was actually pretty cool to watch him hold his own and see how much fun he was having. He even did a pretty good job avoiding being hit with the ball with the exception of one early on to the face. Luckily the balls were pretty soft. :-)

He was super exhausted when we got home and ended up sleeping twelve hours last night. All in all a good day.

Luke's Birthday

We had the joy of celebrating Luke's 10th birthday today. It's hard to believe that both our boys are now in double digits, time is going by way too fast! I really love seeing the bond those two share. While their relationship has changed, in some ways they are closer than they were before. When Jake first got home from the hospital, their roles shifted. Due to everything going on with Jake, Luke stepped into the role of big brother, it's just the way things were. He wasn't always happy about it, but he dealt with it the best he could. I've been seeing a shift happening again. Luke is starting to treat Jake like he did before - being competitive, "messing" with him, and truly wanting to hang out with his brother.

Today was a perfect example. Todd had been offered two tickets to the Bronco game today, so he took Luke for his birthday and some good quality one-on-one time. Jake is often bummed when Luke isn't around and genuinely misses him which happened again today. Todd mentioned Luke seemed a little down at the game and when he finally got Luke to tell him what was wrong, he was missing Jake. The last time we went to a game, it was all four of us and I think he was wishing Jake could be there too. Don't get me wrong, they have their moments, but overall, they are both each others first choice of someone to hang out with.

Tonight after dinner, Jake asked if we could play charades. It was so fun to watch the two of them together. Whether laughing at my poor acting skills or acting things out together, they were both having such a good time. It made me want to freeze time, they are growing up much too fast.