I keep getting emails from these travel companies that are all titled "Need a break?" "Want a vacation?" "Want to get away from it all?" Why yes, yes I do. Of course, we all know that's not in the cards at the moment...not only because of what's going on, but because I also have a 6 week old (typically, travel isn't generally recommended for such youngin's). Last year I wrote about how sad I was that summer was ending, and I remember how irrationally bummed I was about it straight through winter. Obviously, we have bigger fish to fry this year, but I'm still pretty irrationally bummed that summer is over; and even more so that we didn't really get to enjoy the end of it. I know in the grand scheme, that's a preeeeetty dumb thing to be upset about (especially now), but I can't help it. The worst part is, the last two weeks I prayed for it to be over...I think I had it in my head that summer over = problems over, which, (SURPRISE), isn't the case.
It's been a tough week so far. Last week was Kenny's birthday, and we managed to get a few celebrations in with family and friends (and even a nice dinner out alone). I think we were all finally starting to let our guards down a little- it'd been almost four weeks since his last focal seizure, and I think we were starting to peek our heads out of our respective mental cubby holes a bit. But on Tuesday, while eating dinner, Kenny gave me "the signal"- he tapped me on the arm and shook his head up and down- he felt a focal seizure coming on. DAMN IT!! I was mad, I was sad, I was exhausted. I spend a lot of most nights trying to make sure neither child wakes him up (since his doctors have all stressed, time and again, that he needs rest), and in between, I check on him; every little noise coming from the other room has me hopping up to make sure he's still sleeping peacefully. I generally end up on the couch, since Ben gets up at some point a few times every night- his family always tell me to wake them if I need help; but seeing as they do so much to help all day, I prefer to handle nights on my own (although sometimes Kenny's mom nabs Ben from his swing if she's up before me, and then I get an extra hour or two).
At first, I just wanted to make sure he was feeling okay, and when he returned to the dinner table, I went to the other room to cry (I really hate people seeing me cry, and I especially didn't want to alarm Cam who already kept asking "What happened to Kenny?"- yes, on occasion she calls him Kenny instead of Daddy- a wee bit of comic relief for us). I really just felt spent at that moment- tired of being scared all the time and just plain tired, I sobbed for a couple of minutes. If ever I'd had doubt before about this surgery (which I have had, out of sheer fear), it became apparent to me at that moment that it had to happen. I'm still really effing terrified of the surgery, but realizing we'd been holding our breath all this time (figuratively), made me realize that unless this happens, we'll all be just waiting for the other shoe to drop...another focal seizure, another grand mal seizure, more symptoms that they warned us about if he opted to not have surgery (impaired speech and loss of movement on his right side)... I already feel like I've aged 5 years in 5 weeks, and I'm sure it's not going to get easier any time soon, but in terms of quality of life in the long term, I guess this is what has to happen. It's getting harder to hold it together all the time, but for now, we're managing to (for the most part).
While I know I've said it before, I don't think it really sank in until recently that things aren't going to be the same. I mean I knew it, but I didn't KNOW it. I'll explain...when we first went to all these doctors, they all said they felt he could make a full recovery. His oncologist even said he felt he could return to life as though it never happened. I had a clear vision in my head of life literally going back to normal...me at home with the kids, walking the dog, Kenny hopping the bus to the city and me having dinner ready when he got home-- our boring, normal life. It didn't dawn on me until a few weeks later (after talking to many doctors), that their definition of "normal" and "as though it never happened"are vastly different than mine. I think because they see people with such dire prognoses all the time, when they say things like that, they mean he could and likely will have a normal life expectancy. However, it's really not going to be what it was. Maybe 5 or 10 years down the line it could be, but not any time soon. Legally, he won't be able to drive for a year from his last seizure. Mentally, I don't think he'll be comfortable driving a lot longer, especially with our kids in tow. While we all assumed he'd be on the seizure meds for a little while after surgery (and no one told us otherwise at first), we found out (after I asked specifically- the key to getting real answers I've learned), that he'll be on them at least 2-3 years to start, and that was a minimum. He'll have to have lots of follow ups and MRI's and monitoring...and with the continued seizure risk (they said the scar left on the brain from removing the tumor can cause seizures), we realize our house, with 3 floors and lots of stairs, is likely no longer the best place for us. So, while I knew on some level things would be different, it's looking more like things will be really different. It's okay, because I know we'll adapt, and honestly I could give a shit less if we lived in a shack as long as the surgery goes well and he is here with me and our family; but it's still sad. It's ironic, because for so long we talked about moving...we felt unattached to the house itself and I've talked numerous times about the circumstances of us purchasing it (we were supposed to flip it within 2 years, but we're onto 5 years now), and faced with leaving it now, I'm pretty broken up about it. We decided 18 months ago we were going to make a "go" of making it a home- we've painted every wall, replaced every floor, gutted the kitchen and master bathroom, and turned two unoccupied spare bedrooms into our children's sanctuaries. We put so much thought and energy into how we wanted each room to feel, and although we were far from finished, it began to be our home. The only thing I'm glad about (in terms of leaving the house) is that because of that experience, I know we can make any house, apartment, condo (or shack) our home.
Today, he's up at Sloan Kettering having a PET scan and an fMRI. We'd decided about a week ago that he would go up there with his Mom and I would stay here with the kids, since I'd been feeling so bad about leaving them; but this morning I knew we'd made a mistake in that decision; I knew when he was getting ready to go that I should be going with him. I don't doubt his Mom's ability to ask questions or be supportive (she's his Mom, after all, if it weren't me there, I'm glad it's her), but I just know I should be there. My anxiety is through the roof (and I know his is, too). When we first decided this, I don't think either of us anticipated being so nervous about the tests- he was actually the person who told me maybe I should stay here, because he wouldn't be seeing the surgeon today, just having the tests. But late last night that uneasy feeling set in (especially since he had the focal seizure earlier this week), and this morning I think it went viral for both of us. I know he's in good hands with his Mom and the doctors up there, I just wish I was in the waiting room for him when he came out of the tests. This is one of those really shitty moments where I feel like I'm failing because I can't split myself in two. I can't be with him without leaving the kids, and I can't stay with the kids without him going without me. It just sucks. No better way to say it.
On the bright side of things, we have some normal life stuff going on this week, too. Tonight, post- anxiety-inducing tests, we have back to school night at Cam's preschool, and tomorrow morning (prior to a final consult/interview with the local surgeon), we have a meet and greet for Cam to get to know her new classmates. We've filled some of our time planning for her school year- I ran home and grabbed some of her school clothes and shoes, went shopping for some new ones, and Kenny and I went out the other day to get a new lunchbox to surprise her with from Pottery Barn (it's the little things that excite 2.5 year olds); and on Monday, my little nuggette starts her first full year of preschool. I'm excited for her to have something normal and stable going on (and, I admit, a few hours a week where she's otherwise detained). I think the schedule (and small break) will be really good for all of us, and she's really missed her teachers and friends all summer.
On that note, I'm going to try to spend the rest of the day enjoying my babies. Interesting fun fact: it's the first time I'm actually alone with them both all day! Thanks again to everyone for the continued thoughts, prayers and positive thoughts- keep them coming! We SO appreciate it!!!!!
XOXO
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