The Cold Finally Hit

So the cold Jake has been dreading and worrying about finally hit this week. I'm actually surprised he's held off getting sick this long, his last cold was in the Spring. His walking deteriorated again and really slowed him down. We were hoping he was further enough along in his recovery a cold might not be so impactful but he wasn't so lucky. His body just doesn't have enough resources to fight off an infection and work on healing, so his walking gets worse, his arm gets tighter and he fatigues a lot easier. Honestly, it's no real surprise. I know how drained I feel when I'm sick and I'm not recovering from a massive stroke. Luckily, it seems to be a pretty minor head cold and not one of the more serious ones going around.

What makes this a little bit harder than before is being in middle school. There is so much more distance to cover between classes which just adds to him getting tired. We kept him home on Thursday and Friday so he could rest but making up all that missed work is going to be taxing too. We'll do what we can and if it takes a little longer to get caught up, so be it. We talked with him today about going back to school tomorrow and he's worried about getting around and having the other kids see him struggle walking. He asked if he could bring his wheelchair to school. He hasn't had to use it much at all lately and I was proud of him for recognizing that it will help even though he doesn't want to have to have it at school. Now we just need to figure out who's going to assist him with it since he doesn't have dedicated help anymore. :-)

Lunch

I had one of those heart wrenching situations this week that all parents hate. I've mentioned in previous posts that Jake has been having some anxiety issues lately. Just before winter break, I started recognizing some patterns of when his anxiety was hitting while at school. He would text me about stomachaches, headaches, nausea, etc. during his rest time at 11:15 and then again at 12:05. I think his rest time was allowing him too much time to think about things and  he would start worrying. At 12:05, he's at lunch...that's what I witnessed on Friday.

I was volunteering in the cafeteria, and at 12:05 they open the doors so the kids who want to can go outside. The entire table of kids he eats with got up and went outside leaving him sitting there by himself. In talking with him these past few weeks, I knew it was happening, but seeing it first hand was a whole different situation and it was tough to see. It was so sad to see this mass exodus and then him sitting at the table all by himself. It took about all the self control I had not to lose it right there in the cafeteria. We've encouraged him to go outside but he doesn't want to. "There is nothing to do and I can't play football with everyone else." While I admire him for not just following along because that's what everyone else is doing, it's also really hard to see him left alone. We all want our kids to fit in and be part of things and it his current differences were so blatant in that moment.

Seeing the situation first hand, I can understand why sitting there by himself those last 15 minutes of lunch has been contributing to some of his anxiety. He'll develop a stomach ache and headache, real or imagined I'm not always 100% sure. I then start getting texts from him. I've found if I can distract him by chatting about something else it helps. I've asked if there is someone else he could go sit with but he says no. (One of the effects of his stroke is lack of initiation in social situations which doesn't help either, add to that, it wasn't really in his nature pre-stroke either.) As I mentioned, he doesn't want to go just sit outside either.

It's in these moments that the enormity of what he copes with every single day really hits home. He doesn't feel "normal," doesn't have as much interaction with his friends in or out of school, truly worries that something else bad is going to happen, and knows he has to work harder than everyone else but still can't quite keep up. While he's going though some changes in middle school, his are different from a lot of the other kids. He isn't ready to start being more independent or "typical pre-teen" and these things are making the gap between him and his peers greater. I honestly don't know how he keeps as good of attitude as he does, it truly amazes me.

I am hoping we have finally found a workable solution to the lunch issue that he can start next week. Instead of resting before lunch, he'll go to homeroom and we'll change his break time to the last half of lunch. That way, when everyone else gets up to go outside, he can leave the cafeteria to chill/rest before his next class. We'll see how it goes...

Aero and a Blog Update

We had a very sad start to the New Year with passing of Jake's guinea pig, Aero. Todd found her Thursday morning when he went in to check on them. Aero was the first unexpected pet death Jake has had to deal with and he took it pretty hard. It was extra sad because Luke's guniea pig, Peanut, shared a cage with her and she seemed almost as sad and out of sorts as Jake. Jake was sad for himself and for Peanut and was pretty emotional most of New Year's Day. He kept telling us he feels like he is bad luck since he had an aneurysm and now this, especially since guinea's have a life expectancy of eight years and she was only three. We tried to explain to him that unfortunately pets sometimes die and we don't know why, but it wasn't because he is bad luck. (This picture is from when Todd brought her to the hospital for a visit since Jake was really missing her.) I'm glad he had a few days to deal with it before going back to school tomorrow. He was doing a lot better today.

With the start of the new year, I've been giving a lot of thought to things I'd like to improve in my life as well as acknowledging some of things I'm doing well. Part of that has included thinking about this blog. It started off as the most efficient way I could keep people updated with Jake's progress when things were literally changing day by day. I've never been much of a writer, but trying to share Jake's story complete with all the emotions and feelings that come with successes and challenges has ended up being very therapeutic for me. I'm also very grateful to have this record of his recovery as it has happened, because if it weren't for the interest from family/friends/friends of friends, I would never have kept these good of notes for myself. I've referred back to posts from those early weeks in the hospital several times trying to remember something that happened.

As we are more in a "regular life" routine, there often isn't too much to share and I find myself trying to come up with things to write about because it's Sunday night and time to post. I will continue to post updates on Sunday night, but it will be as noteworthy things happen and not necessarily every week. We are very grateful for the amount of interest in Jake and his progress....I never expected to still be blogging a year and a half down the road. I find myself overwhelmed at times when I look at the number of people who have read a post or comments from someone when they thank me for sharing our journey and keeping them updated on Jake.

Thank you for caring about Jake and continuing to read the blog.