4/17 - Sam's Journey - Day 127

It's been a very busy week for all of us, although I'd be hard-pressed to think of one that hasn't been since December 12th. The normal stuff of life keeps rearing its ugly head, and it showed up in force this week. Sarah had what we think was food poisoning. She's starting to feel better, but it's been a rough few days for her. Jim is super busy with extra music festivals and performances for a few weeks. Things should calm down shortly, but it's just one of those special times of year that he's running around so much that sometimes he sees his own butt running around the next corner. His head cold isn't helping much either. 

I am busy with school and wrapping up the next to last grading period. I'm also dealing with the ever so exciting medical bills, insurance issues, and recently, problems with some of his feeding supplies. Part of his feeding tube completely came apart yesterday afternoon, and we ended up at Children's in Plano to try to find a solution. (Thank you, Carrie, for getting us there and back, and sitting through an interminably long--yet often humorous--trip!) That visit could have been avoided if we had been sent the appropriate supplies in the first place. Although we still don't have the right "parts", we have a manageable compromise, so Sam can still eat and get his meds. 

There are only 33 days left of the school year, and that is a relief. As that part of the year closes, I freely admit that this is not my finest teaching year. Before you start scolding me because I had the mother of all reasons for that to happen, let me explain. I do not feel guilty about it. I just feel bad. I love my job, and I pride myself in doing it well. I know that my students did not get the very best of me this year, and they deserve better. For that I feel bad. It's interesting that throughout all of this, we've experienced every emotion possible. For me, it's as if each one is in its own separate little box, and they open and close at will. It's odd to be able to differentiate between feeling bad and feeling guilt, because prior to this, I wouldn't have thought there was much of a difference. There have been so many new learning curves since the accident, and the emotional realm has not been exempt from that. 

Now on to the the Sam stuff! He has been busy as well with all of his therapies and some medical evaluations. You will be happy to hear that there continues to be good news in his progress. He is such a hard worker, and is moving forward in a lot of areas. He continues to have small bits of mushy food, and the big news about that is that he actually fed himself this week. In OT, he's working on un/dressing himself, and he's still doing "walking" practice in PT. This week he has a swallow test scheduled which will determine how we will move forward with feeding. While he has been improving a lot, we have no idea how this will turn out. Prayers for a successful study so that we can work toward the removal of the feeding tube would be appreciated! We're also weaning, and/or getting rid of several medications. This makes life easier for us, and less chemical-based for Sam. Both of those are good.

Our wonderful next-door neighbor came and gave Sam a desperately-needed haircut. Not many things breed hairdos as strange as those after multiple brain surgeries, and he looks so much better now! He also had a good visit with two of his humanities teachers. He was so excited about them coming to see him. He's still a part of the humanities chat groups and had already asked me to download the book they are reading right now. A few weeks ago, he asked me to get him a notebook so he could take humanities notes. Only this child would make such requests. 

One other note for the school community...Sarah was nominated for a student achievement award, and Sam will be attending the ceremony on the 25th in a show of sibling solidarity. So, friends and teachers of Sam, if you are there, I know you'll be excited to see him. He's anxious to see you all, too. At the same time, we don't want him to get too overwhelmed. Please do come say hi to him, but if it looks like he's had too much, I might give you the 'not now' sign. Please don't take it personally.

When I find myself in a new, life-altering situations, my tendency is to read about them. I seek out resources, particularly first-hand stories of people who have found themselves in the same position. I did this with the surprise (ambush?) of a twin pregnancy, and I'm doing it now. I do not look at a lot of medical advice this time, because there are just too many variables with brain injuries to make it worthwhile. People can also lose their minds when they rely on WebMD as their primary healthcare resource, thinking they have a terminal disease when it's probably just gas. I just don't have that much mind left to lose. I have recently read two different books of personal accounts of brain injury. There are ample similarities and gaping differences between their stories and Sam's. In reading them, I find myself torn between being bitterly jealous and consummately grateful. I'm envious of the advances those survivors have made that Sam has not. More often that not though, I find myself in a position of gratitude for the things that Sam has recovered that those in the books have not. One of the reasons for that is Sam's demeanor. He is certainly not exactly like pre-accident Sam. (We sometimes call him Sam 2.0) He is much more verbal with his emotions, and frequently tells us he loves us, and thanks us (unprompted) for doing things for him, and that rarely happened before.

I have read on several occasions about how TBIs breed aggressive bursts of anger or violence. In Sam's case, this has not happened at all. Ever. If anything, he is sweeter, kinder, and more appreciative than he was before. There's been a lot of talk in the media and locally after a TBI survivor acted on that aggression with tragic results. My heart hurts for the family and friends of the victims, but I also find myself troubled by some of the assumptions being made. Yes, it is true that brain injury causes aggression and violence in many survivors. However, since brains are so bizarre, this does not happen to everyone. Assuming that this will happen to Sam because he, too, is a TBI survivor, while understandable, is also faulty. No two brain injury survivors are exactly alike. It's like they're each some kind of broken, oddly-shaped snowflake swirling around in their own personal storm, trying to find their way to solid ground to join the rest of us oddball snowflakes. Some make it. Some do not. All I know is that every story is different, and right now, Sam's doing the majority of the writing. So, friends, until he writes the last page of his book, I'm just going to sit back and see what he comes up with. 

I only have one more thing to add before closing. If you ordered a #TeamSam shirt, they are on the way! Thanks so much, Sue, for all of your hard work on this!

Have a great week, everyone, and thanks for your prayers for continued progress and a successful swallow study!

Still happy to be home!

**Addendum: When you get your #TeamSam shirts, I'd love to have you send me pics of you in them, both for posterity, and for posting in the blog! (with your permission, of course!)