Christmas Break

I am really enjoying having the boys home during break. Yes, the house is a bit messier and things are a bit louder and more chaotic, but this is the first break in a long time where Jake hasn't had a ton of appointments. We did a five day PT session over fall break (in addition to all of his normal appointments) and last summer was simply nuts with everything we crammed in. He's only had a couple things scheduled this week and it's given us time for movies, driving around to see the lights, lots of board games and good quality family time. It has been great to see Jake having fun and laughing. We really haven't done anything all that extraordinary, but his favorite thing is to play games as a family and we've done a lot of that. We are lucky that both sides of our family live pretty close, so we've been able to spend time with everyone over Christmas.

Jake's anxiety seems to be a little bit better too. He still mentions various aches and pains, but it's less often and he is getting to sleep a little bit faster. With as much as things have been worrying him, we decided it was finally time to take him to a psychologist. We were really pleased to find out that the one he saw in the hospital is now seeing kids on an out-patient basis as well. When we saw her last week she was amazed at how well he is doing and that he did such a good job articulating what has been going on. She also mentioned it's very common for anxiety to kick in about a year and a half out and especially because of his age. We don't think he is going to have to see her for very long, but I'm just glad he remembered her and was comfortable enough to open up. With all he has been through, it's probably long overdo getting him some emotional/mental help too.

Wishing everyone a Very Happy New Year and wonderful 2015! We are very excited to see what it brings for our family.

My Experiences With A Brain Aneurysm by Jake Morgan

Todd and I have spent a lot of time over the past year and a half wondering what's really going on inside Jake's head. We have talked to him about things of course but still didn't really know how this whole experience has affected him and how he feels about it. That all changed this week with a school assignment of all things.

In Science over the past month the students had to do research on a disease, the final piece was a project that could help someone who has the disease. Jake chose to study aneurysms. For his project he decided to do sort of a public service announcement/advice about what it's like to recover from a burst aneurysm. It was the first time I felt like I was truly able to get inside his head and see what he was thinking. It hit me pretty hard emotionally, I didn't expect to read some of what I did. I asked Jake if I could share some of his paper and he said yes. Here are a few excerpts:

Try not to worry about things, but it’s hard not to. Just don’t think about it. Everything is hard. Everything. Some of the advice I can give is to not be scared. I was. Some things will be hard, like trying to be normal and do normal things.

I was scared, worried, and all I wanted to do was go home. 

It’ll be extremely hard to move your hands, fingers, legs, and feet again, but, if you do therapy, that will help. I know how all of my therapies have helped me with just about everything I do.

I know that there are advantages of having an aneurysm, like getting to know a lot of new and nice people. There are definitely more disadvantages, like not being able to be “normal” like other kids. Try not to think negatively of yourself, think of the bright side, but that might be really hard to do.

The people that might come into your life are occupational therapists, physical therapists, acupuncturists, psychologists, and doctors. Life will be very hard for about a year. After that year, you will have learned how life will be for awhile.

Don’t try to “fit in” with your friends, I mean you should try to be normal, but don’t do everything that your friends do. If all of your friends go out to play football, for example, you should stay in and do what you want.

I know that everything will be hard for anyone who has had a brain aneurysm burst, but just don’t think about that stuff, I did, it doesn't help at all.

Try to do as much as you can to heal, like O.T., P.T., acupuncture, and neurofeedback. These are just some examples of therapies I have to do. Some advice I can give you is to just give it your everything. Use tools that your therapists give you. No matter how much you hate therapy just do it. I know it will help you down the road. I was always told “The road to go home is through therapy”. That was true. I stuck with therapy and I went home. (Side note: that quote was from my dad and on a poster he made Jake in the hospital to help count down the days until he got to come home.)

Don’t think about all of the things that you can’t do, think of the things you can. Never give up on your dreams. Always keep going.

I think focusing on things I liked helped me heal. Family-related things would also make me feel a lot better. My family also helped me feel better about myself, they told me how much I’d improved from the beginning to the end.

I can't begin to describe how reading some of these words hit me. I hated seeing in print that he was so scared and worried. I think I knew it all along, but to have it verified was tough. I also had no idea he realized how important and impactful all his therapy has been. He has this amazing positive attitude with a bit of realism thrown in.

All of this makes me so much prouder of him, his strength and determination. I really don't think it would be possible to love him anymore.

Band Concert

It's been another crazy week in the Morgan household. No matter how hard I try to not let things get so hectic this time of the year, I end up failing. I guess it's just par for the course when life is already busy and you throw a huge holiday and all that goes with it into the mix. :-)

Jake had his first band concert on Wednesday. He had quite a bit of nerves stemming from wanting to do well and had been a little stressed about it the past week or so. It was so cool to see him and a few of his percussion friends from elementary school up there part of the band. He did such a great job and more importantly, looked like he was really enjoying himself. From what we could see (he was way in the back being a drummer) he was smiling the whole time.

We were really hoping that once the concert was over, some of the recent anxiety might let up and he might start sleeping better. No such luck. He is still struggling with anxiety and worry over getting sick or now the latest....going blind. Anytime anything gets remotely close to his eye or if he accidentally brushes his eye when his hands aren't freshly washed, he gets worried it's going to affect his vision. Logically, I get why he is so worried about these two specific issues. As I mentioned last week, he equates being sick to having a really hard time walking. And having already lost 1/2 the vision in both eyes due to where his bleed was, he doesn't want to do anything that might cause him to lose more of his vision. The other part of me doesn't know how to reassure him that a speck of dust or the brush of a hand can't hurt his vision. I did tell him the other day that at some point, he's going to catch a cold. It just can't be avoided. He is doing a great job at keeping his hands washed, eating well and taking vitamins, but as we all know, colds can't be avoided 100% of the time. I also told him that his walking may or may not be affected, we just don't know. He's healed more and walking better than he was the last time he got sick, so it might not be as bad this time. I just want to see him worry less and be a little more carefree, not an easy task.

Jake's 12th Birthday

Jake celebrated his 12th birthday this week! He had a few friends over on Friday night for a sleepover and it was interesting comparing this year's celebration with last year's. He has really come so far in the past 12 months.

Last year was really tough on Todd and I seeing what a hard time Jake had trying to keep up with his friends...physically, socially and his stamina in general. While he's still not 100%, this year was so much better. He was part of the conversation, kept up when they were goofing around and stayed up much later than we thought he could. In fact, after midnight, we had to finally tell them it was time to wind it down. It took the rest of the weekend to recoup, but that's not all that abnormal after a sleepover, even for Luke. Todd and I were talking Saturday morning about how the differences between Jake and his friends have lessened over the past year...he really has made a lot of progress. We're also really pleased that he's got good friends that have stuck with him.

On a completely different note, one of the things we've noticed with Jake is he tends to go through phases/cycles. Right now he seems more anxious about things. Looking back, it started around the time he had his CT scan a few weeks ago.  He has become acutely aware of every ache and pain and is focusing on those feelings to the point he's constantly worried that "something else bad is going to happen." It's so hard to see him genuinely worried that his eyes being irritated might mean he's going blind or a stomach ache means he is going to get sick and it will affect his walking. (He got a cold a couple times last winter and his walking really regressed while his body was fighting off the cold.) It's started affecting him being able to go to sleep at night because he lays there thinking about and focusing on every thing that feels slightly off in his body.

Todd and I are constantly telling him that the stomach aches, head aches, etc. are normal and it doesn't mean anything is "wrong." I've also told him that when I stop and think about and focus on what's going on in my body, my back is a little sore, my stomach a little irritated and my eyes are dry. We are encouraging him not to focus too much on the little aches and pains and reassure him that he really is ok. It's hard knowing how much of this is due to what happened to him and how much could be very normal for a 12 year old. We're just hoping it doesn't last too long and will continue to reassure him the best we can.