Day 10

I can't believe today is already the 10th day since this all started.  The days seem to feel long but somehow time is going really fast.  I think there are just parts of the days that fly and hours of those days that time drags and the thoughts and worries plague us.   

It's been a really tough few days...we are so grateful for the continued "good" news from all the neurosurgeons we've been seeing, but the adjustment is starting to wear on us.  Cameron is acting out, at times begging to go home, refusing to sleep (even more so than usual), and genuinely confused.  I know kids are resilient, I know she'll be okay, it's just really difficult at the moment.  I'm about 2.5 weeks postpartum, and although I've got loads of help with the kiddies, I'm still up at night with the little guy and sometimes those middle of the night moments of anxiety set in making it tough to get back to sleep.  I'm also still healing and doing my best to continue BFing the little man which takes some energy and some focus on myself (which isn't the easiest right now).  It's important to me to keep trying and Kenny has told me time and again through this process that it's really important to him, too.  So far, it's going well, but having to make sure I pump and produce enough to leave with the sitters when we run out for all these appointments is taxing. 

Going home is really sad...every time we go in our house my heart hurts.  I keep hoping every time I go that it will hurt a little less, but seeing the house as it was the day we left stings.  Cam's toys still strewn about, just played with that morning, mail on the counter, laundry in the basement. The irony of all of this is that we spent so much time this year really making the house a home, making it our home, and now we're not living in it.  Every little thing is a reminder of "how things were."  Even going to the grocery store yesterday stung...with the exception of when I was super pregnant, I actually enjoyed going there every week.  Cam and I would chat while I strolled the aisles, I'd grab her something to munch on and sometimes I'd even be the weird Mom singing along with my toddler as she belted out the wheels on the bus or the ABC's.  Yesterday, much like when I go to my house, it felt different and like we didn't belong there.  

The neurosurgeon we saw yesterday implied that the tumor had been there a long time...he may have even been born with it.  Later in the day, I took Kenny to get his hair cut...since he can't drive and we're still a bit sketchy on leaving him out of sight, I sat and waited for him while he had his appointment.  It was a little uncomfortable...the barber shop has an urban vibe...the dress code is fancy sneakers, basketball shorts, a barber's cape and some form of metal chain necklace.  They were blasting old school Jay-Z and Biggie Smalls (I mean "can't hear yourself think" kind of blasting), and they were clearly wondering why this guy's wife was supervising his hair cut.  When Mo Money Mo Problems came on, I was instantly transported back to Mexico in the summer of 1997.  On vacation with my family, my brother and I and our new vacation friends drunkenly dancing in the "disco" at the resort (sorry, Mom!), thinking it was the best song ever.  I remember hanging outside the bar that night and my brother trying to speak spanish while he was slurring...I remember he wanted to say "pero" but kept rolling his r's like "perro" (for those who didn't take spanish, pero = but, perro = dog) and I kept correcting him.  Funny how you remember those weird little details just by hearing a song...and suddenly those questions creeped right back in...everything comes back to that...did he have the brain tumor then?  Was it already affecting our future a year before we even met?  

The question is redundant, but it's hard to recount 14.5 years with someone and not wonder if this thing was a part of our lives the whole time.  From what I can tell, this is all "normal" for when this kind of thing happens.  It's "normal" to be angry.  It's "normal" to question everything.  It's "normal" to feel overwhelmed.  I think my whole definition of "normal" has changed drastically in the last two weeks.  Things feel chaotic; we're kind of winging it and in total survival mode- but I'm hopeful that soon enough a new "normal" will emerge...maybe in 3-6 months things will even out...maybe we'll be moved back home and maybe daily life will resemble what it did 3 months ago...but it will never be the "normal" we used to know.  

The hardest part about all of this is that we still have to be parents.  We are endlessly researching neurosurgeons and neuro oncologists; running out to appointments, sourcing out pertinent questions, debating pro's and con's of biopsies versus immediate surgery... but have to make sure our kids are fed, well and happy.  We still have to clean the poopsplosions out of the newborn swing. We still have to kiss boo-boo's and sing songs and have one on one time with our children.  I lost my positive mojo this morning when a waitress made a seemingly harmless statement to me.  We mentioned we had a newborn at home, and she said she couldn't possibly have left her 2 week old at home already (we took just Cam, since it's been a really hard few weeks for her and felt she needed the face time).  I made it out the door okay, but started bawling when I got in the car.  In a perfect world, I wouldn't be leaving my 2 week old at home for any reason...maybe an hour here or there to go food shopping or run a quick errand with Cam.  But it's not a perfect world and our situation isn't currently ideal.  Starting at 9 days old I've had to leave my little guy more than any new mom would like...but it's necessary, and important.  I understand that right now, there are moments that my husband needs me more than my baby does.  I've been struggling to do what I can for my little family, but I can't be in 3 places at once.  I've had to run out of many important discussions and conversations to feed Ben, because I'm not at my own house and I can't just whip out the ladies at the kitchen table to do so.  I've had to leave all 3 of them at some points to run home and walk my poor dog who's been mostly living alone for the last week aside from a few days at the farm (and rush back from said errands when someone texts me that Ben is up and hungry).  I have had to leave while my 2.5 year old screams for me, I've had to juggle getting both of them to bed because they both need me to get to sleep at the moment (well, she needs me to get to bed, he just always seems to get hungry at her bed time).  I've had the guilt of my daughter begging to stay with me at night, only to be carried away after she falls asleep because we just can't risk Kenny getting a poor night's rest right now (his neuro oncologist said he can take all the seizure meds in the world but if he doesn't sleep, he risks having another grand mal seizure).  I'm juggling constantly with who needs me most that minute.  And it sucks. And it's hard. And today when that waitress made that comment to me, I felt like a failure.  

I know it's going to be hard for a while, even with all the amazing help we have, even with the "good" news, even with all the support we've been getting from all of the terrific people we know.  It's strange...only recently I was writing about how I had gone to surviving every day to living and enjoying every day as it came...and now it seems we're kind of doing both.  There's moments where we're rushing to get to the doctor and making small talk to try to keep our nerves at bay...and moments where we're just grateful for our family and our beautiful kids.  Just watching Ben sleep or listening to Cam sing, or enjoying 10 minutes where we get to snuggle on the couch.  

Now that it's the weekend, we're trying to just enjoy a little down time.  Once Monday hits, the doctor's visits, calls with the insurance company and debates can all begin again.  In the mean time, we're hoping things are well enough for a little family pool club time tomorrow- fingers crossed for a little slice of old "normal."