Minstrels of Mischief

Courtney and I had a really meaningful weekend. My parents picked up our three older children early Saturday morning and kept them for a two day sleepover. From what I've heard so far, they are having a wonderful time with grandparents, aunts, uncles, and cousins. This allowed us some time to be together and let things sink in. It was a very emotional weekend, and I think we both feel a little more at peace after it. Courtney's energy is actually up, which I attribute to her amazing attitude. She the type who, when you outline for her the obstacles in front of her, will dig in and press forward. She doesn't shy way from anything. Saturday night, after a long discussion, she decided she wanted to try and venture out and attend the concert of a choral group she was part of but had to leave due to her surgery. It was an amazing Christmas concert and she was so happy to be there. Of course she had mixed feelings, as she wished she could be an active part in it, but I think it was really good, and therapeutic, for her to be out and be a part of something that she loves. She was so enthused by the concert that she felt like doing something else on the way home, so we stopped and did a little Christmas shopping. She help onto my arm through most of it, but did surprisingly well. On Sunday, our church choir surprised us by coming by and singing a few Christmas hymns in our entryway. It was a really wonderful experience for us to witness the love of the good people around us and their willingness to go out of their way to simply brighten our lives. We spent the day cleaning and re-organizing our home and then a couple of Courtney's siblings and families joined us for a dinner they brought to us. In the middle of that we were again greeted by carolers, this time a very large group from our neighborhood and what I assume is their family.

I've been struggling for the last few hours trying to figure out how to present our latest news. Courtney tells me I have a tendency to be to "diplomatic" and I sugar coat difficult news. She's asked me to try to present this in a more straightforward and clinical approach, so here goes.

Sorry it's been a while since we posted anything. Lots of people have been asking how things are going and we appreciate their concern. We've been really busy getting used to our new circumstances, but things are settling down and I expect we'll get updates here more regularly.

First, Courtney has been meeting with medical doctors and a counselor with a background in brain injury recovery this week. From the medical side, Courtney is doing very well. Her eyes don't hurt much anymore, her vertigo is pretty minimal if she's careful with her movements, her head doesn't hurt much, and aside from a low energy level she's feeling relatively good. From an emotional/cognitive perspective, we're learning a lot about what her limitations are and how we can best help her. Following is an email her counselor invited me to share with anyone helping in her care.

"After a surgery to the brain we all need to acknowledge that the patient is not herself. This can be difficult as she looks like herself and seems to be the same old Courtney that she always was. The problem with this is that her brain is still healing both in a physical and cognitive way. It is easier to see what someone’s deficits’ are when they are wearing a cast like in the case of broken arm, and if we saw someone with a cast on we would not through them a bottle of water or a ball. ( that would just be mean). However ,when someone’s brain is injured we don’t see the cast and we just expect that they will catch the ball like they always did. It is not to say that Courtney cannot do what she needs to in most situations but it is extremely difficult to function on the same level as she did before. This will get better. For now she needs to reserve her energy to regaining what function she can and devote all of her energies to that so the following are not allowed (for now).

Processing of emotionally charged stuff

Asking her to problem solve

Allowing her to take care of things that others are assigned to

Making assignments

Asking her about her status

Asking about the surgery or its complication

Expecting her to initiate activities or conversations

"There are others but for now this is the way we need to have her devote what cognitive energy she has to rebuilding her brains function. You may be asking how do I know when I have gone too far, Courtney will give you a “Stop” sign and that means whatever you are doing or saying stop"

I think all of us around her, myself included, have been asking her to do too much because she looks like she can manage it just fine. The fact is that it's going to be a long time before she should be tackling normal daily activities. Pushing her too hard, or allowing her to push herself, can result in her being dangerously overwhelmed and can be a setback in her recovery.

Courtney's sister, Skye, prepared a posting for this page, I'm going to borrow from it since she has done a masterful job drawing on her family's experience with cancer and relating it to Courtney's situation. Her comments follow.

"As Courtney's sister, I wanted to make her life easier by offering everyone some tips for ways to make personal interactions easier on her. This advice is based on my observations of her and my previous experience dealing with my husband's cancer. Not everyone will manage to follow everything, but for each person that adjusts each little thing, it can reduce so much burden (yes, close family members, this applies to you too!)

"DON'T: ask lots of questions about her condition. Don't ask her to explain details about what's going on, medical or otherwise: I understand that it feels awkward and even impolite to talk to someone after such a major life ordeal without at least asking her about things, but honestly, it's really very taxing for Courtney to have to talk about what's going on over and over. (This problem tends to make people feel like they don't want to see anyone, even friends, because the social burden of the big "hello's," "how are you's," and "catching up" is just too much to do all the time. This is especially true for Courtney, whose brain and social/emotional regulation is not functioning normally yet). DO: Read this Blog to stay updated!: The best thing you can do for her is to stay updated on the things she feels like sharing by reading it here. And then when you see her, refrain from asking more questions. Just talk like things are normal. Even talk about yourself! She will probably feel like talking and explaining some things anyway, but it would be a great relief to her to see someone, and NOT have to go through all the expected pleasantries and explanations - even (and especially) if she hasn't talked to you since before this all started.
DON'T: Ask "how are you?": This is really hard because it's a standard greeting that comes out of our mouths without thinking. She understands this, but still, it puts her in a position of thinking about it and deciding how to answer (ie: either tell the heavy truth or lie). Of course we'll all forget and say it anyway, but for those who remember it will be appreciated. By the way, especially don't ask this question in a meaningful, concerned, and sincere way (I know, that sounds crazy, but, again, it puts her in a position of thinking and talking about her condition, which is just not helpful to her). She knows you're concerned. (Jason interjecting here. Her counselor tells us that asking her how she's doing causes her to make a complete self assessment including her fears and prognosis. This is more than she can handle right now) She knows you want to help. She feels your love. You don't need to prove it by asking her all about it - your presence alone is testament enough.
DO: Greet her by saying something else: If you can remember, try to use another greeting, like, "Hi Courtney, it's great to see you!" Or "Hi Courtney, you look great." Or just, "Hey Courtney." (We loved this when Jared had cancer. Only a couple people did it, but they were the easiest and most pleasant to greet).
DON'T: Ask her to make lots of little decisions: People want to be very courteous and let Courtney have as much control and comfort as possible, but little brain functions like decisions about what her kids should wear, what dishes to use, etc, are really difficult for her. DO: Offer to take care of details that you can: Most of the time she'd rather whoever was helping just took care of detail things. If you're not sure, just ask: "Can I take care of getting your kids dressed?"

Jason again here. We have an appointment with an oncologist this week. There will be additional treatment needs, but we don't yet know what they will be. Things will most likely get worse before they get better, but though Courtney is still feeling up and down, we're optimistic about the long term. Thanks again for all the concern and prayers.

I didn't feel great when I left the hospital this last time but I figured I was just recovering from the infection, or whatever it was that I had. When I woke at home the next day I felt even worse. It felt WAY too much like right before I went into the ER this last time. I was really scared! I did NOT want to go back to the hospital and go through all of that again! I also didn't understand why I felt so horrible. It really worried me. I wondered if I was ever going to get better or if was just going to stay suspended in this awful state. We did finally figure it out though. I have been trying to continue breast feeding Jocelyn through all of this, which is a whole other story in and of itself! Anyway, we discovered that I had a breast infection on the right side and was prescribed antibiotics. So now, after 2 days of antibiotics, I am finally feeling a bit back to normal (or my new normal that is). I am hoping that this is the beginning of a straight and smooth stretch of the crazy roller coaster ride we've been on. Is that too much to hope for? I sure could use it. Every day has been so unpredictable. I've been afraid to go to sleep each day, not knowing what my mental/emotional state will be when I wake up. It is not a fun way to live! I am grateful for the 2 fairly normal days in a row. It gives me sooo much hope!

Thankyou SO much to all of you who have been so wonderful and helpful in jumping in and lending a hand with rides for kids, childcare, babycare, meals and so much more! I am overwhelmed with all that has been given! Thankyou! Thankyou! Thankyou! We would not have been able to survive this with out you! We are so grateful and touched by the outpouring of service, love, and kindness.

I'm sorry I have not been able to see you or personally thank all of you. I have pretty much been in a 1/2 conscious, deluded state. Brain surgery is SO different from other surgeries! My energy has been minimal to none and my eye sight has made some pretty basic things impossible. But I feel good today and so am trying to take advantage of my "moment" of clarity. I love you all!

Ok, things are back to (relatively) normal. We still don't know what caused the fever and pain earlier this week, but we're very happy that she's feeling better. Courtney's back to her standard of headaches, fatigue, and general achiness. However, she's smiling more than she has been and has been enjoying having the kids climb into bed with her to read a book with her or just cuddle. While she was in the hospital they removed her staples and she's loving that. She can now sleep much more comfortably on her right side. It's amazing to me that she had such a major surgery and looking at her you can't tell at all; her hair completely covers it.

too tired for a complete post...Courtney's feeling a lot better, but pretty drained. She came home from the hospital again today. We're optimistic about the next little bit. More details to follow...