Howdy friends, old and new! It's been a few months, which I hate. As someone who really gets a release from writing, not doing so for this long has not boded well for my psyche! Life has been HECTIC ya'll! In any case, I'm back, and hoping to be back a lot more in the coming months.
In case anyone missed the big (BIG) news- we are expecting another little monkey this summer! Yep- another little C to complete our brood. We are beyond excited (and at almost 7 months, I'm REALLY looking forward to the end of summer...what? it's only the end of May? I CAN'T HEAR YOUUUUU! LALALALALA). Ok, my temper tantrum is over. So back to the point at hand...three kids. THREE KIDS PEOPLE!! Of course it hasn't been the best of times for me to be pregnant. Ken has been in a clinical trial at MSKCC since the beginning of February, and the hectic schedule at the beginning of the trial pretty much forced him out on disability for a few months. He's back at work as of this last week, and while it's been nice to feel a little "normal"- being 26-27 weeks pregnant, home with two very busy little people for the first time since before I was showing, has been a real challenge. Of course, it's a challenge for any pregnant Mama with other kids at home, but me being slightly psycho off my meds doesn't really help the situation. Yep, I'm off the loft as I like to say. Our sweet little fellow on the way (oh...did I forget to mention? It's another crazy little BOY!), wasn't exactly a planned sweet little fellow, so dropping the zoloft cold turkey wasn't fun (and really still isn't...no wine? no loft? Yep, I'm off my rocker). I know what you're thinking- why??? WHY C family? Why get pregnant? The kids a miracle, and I'll tell you why...
I've wanted 3 kids forever. In all reality, I wanted 12, but I knew 3 was about as high a number as my hubby was willing to go. Of course, after Ken was diagnosed in 2012, I couldn't even let myself imagine we'd have any more kids. It was off the table. No mas bebe. It crushed me to even think about. We've had a lot of ups and downs over the last (almost) 3 years. Good scans, bad scans, ok scans. We endured the stress of selling and buying homes; which I genuinely did NOT know was THAT stressful until we did it. Maybe it was our life situation at the time that made it so much worse- Ken was working from home full time, couldn't drive, and in all truth was probably still, on some level, recovering from his surgery...and if he wasn't, I was. I lost 8 lbs in the two months it took to sell our house, and put myself in the hospital with a panic attack on the day we went under contract on both homes. Our parents got sick, our parents got better, we finally spent some down time with friends...of course, it was around that time we figured out I was pregnant. I was 3-4 glasses of wine deep on Christmas Eve when I realized I was supposed to get my period that day. Feeling pretty confident that I wasn't expecting, I took a test (I always keep the dollar store ones on hand out of paranoia...rightfully so, apparently). I walked away and enjoyed the company at my house...it was hours later, when I went in my bathroom to brush my teeth, that noticed TWO PINK LINES. I thought maybe I was drunker than I thought I was, and took another test to make sure I wasn't seeing things. Nope. TWO PINK FRICKEN LINES! Our first reaction was not "Yayyyy!" It was more..."OH SHIT." Something we both laugh at now. I'm pretty sure that might have been our reaction even minus the brain tumor growing in Ken's head, but that part certainly didn't help.
It took about a week for things to sink in, but by New Year's Eve, Ken was (drunkenly) excitedly texting his parents that if all went well, they'd be babysitting three kids the following year for count down (we are going to a wedding of some fantastic friends). Just a few weeks later, when we were told about this clinical trial that Ken is currently enrolled in, we also found out that on this particular medicine, baby making is not allowed (it could have, like, 7 heads or something...). And even if he discontinued the medication, isn't allowed for a year or two following...which would bring us over the mid-30's hump, with kids both in the middle of elementary school, and the likelihood of having any at that point was nonexistent. So if it weren't for *someone* up there/out there knowing better than us, the dream third baby would have been an impossibility. I catch myself tearing up at the notion that something I'd always wanted so badly, something I'd given up hope on having, something I thought not really possible; somehow wasn't just possible, he's there...kicking me in the ribs as we speak. Now I just have to get him here safely at the end of the summer (yeah, THAT isn't weighing on my mind, nut job that I am...).
So as you can see, on top of every day busy-ness, we've had a busy year so far. After an intense first round with the clinical trial, we took the opportunity of Ken being home to whisk the kids away to Disney World, we road tripped to see friends in other areas, and Ken fixed up our back yard to be a relaxing oasis. You'd think things would be winding down, but really, they're staying just as busy, which to me, is a Godsend. Idle hands and all...
Now? Now we're gearing up for summer! My sweet baby girl is graduating Pre-K in a couple of weeks (which, being all hormonal, means I tear up a lot...I mean it, A LOT), she's going to camp for the first time the following week, and in a short three months will start Kindergarten. When I say I'm going to be a mess the day the bus rides away with her in it, I mean it ain't gonna be pretty. With a newborn in a carrier, I fully plan to throw the boys ( BOY(S) !!!!!!! I can't even...) in the car and stalk my child to school. Go ahead and laugh, people, someday, it'll be YOU!
I hope everyone out there is doing well! I will give an update with anything Ken related as it comes. For now things have been stable (which even saying out loud gives me the shakes), but we'll give updates as they come. For now, we've signed up to walk in the NYC Brain Tumor Walk at the end of June. I'll give more info on that as I get back into the groove this week ;) Thanks to ALL for the positive vibes we've gotten over the last few months, we are so lucky to know so many great people! XOXO!
It's a living thing...
Saturday, May 30, 2015
Sunday, February 8, 2015
IDH what?? IDK!
Alright friends, here's the lowdown...back in October, we found out that Kenny's glioma was once again growing. With the hope that it was growing more slowly, they moved his scans up from every six months to every three. Unfortunately, at the scan in January, they discovered that the growth is happening quickly enough to see after only 3 months. BOO!!!
They let us know that his options, for now, are radiation therapy, or clinical trial drugs. Both sounded pretty scary. However, after lots of research, and information thrown our way, the clinical trial sounded pretty promising. At the very least, attempting it would save him radiation for the time being. The reason his neuro oncologist would really like to push off radiation is because it's a one shot deal...and even then, he said, the results were unpredictable (as in, it may only stop growth for a matter of months or a few years). So here we found ourselves, 2 years after we thought we'd be done talking about it (albeit foolishly), and making more big decisions.
So this past Friday, after multiple trips to Sloan, a few scans and lots of talking about it, Kenny signed on the dotted line. He is now on the fast track to beginning the clinical trial...fast as in he begins on TUESDAY. Yes...as in two days from now. Friday became a whirlwind of meeting doctors, researchers, trial RN's, Oncology pharmacists, and a ton of pre-trial testing (blood, 2 ekg's, echo cardio gram, the works...). By the time we got home Friday night, we were wiped, yesterday we were slightly more awake, and today we're feeling human and ready to prepare. It's going to be an intense 3 month regimen of appointments at Sloan to monitor his body's response, and constant testing to make sure his body is handling it all well. And if any of you know Ken, you know how much he LOVES needles (HA!). It will be a lot of work for Ken, our little family, and the amazing family we have surrounding us that are helping us in every way possible (from kid sitting to massive amounts of moral support). But in the end we're hoping for a big payoff. Nothing ventured, nothing gained, right?
Now for the science-y part of the tale. The hope of this medication is that it stops tumor growth (and maybe even shrink it a little). How?? Well, 70% of Gliomas have recently (recently as in the last 5-7 years) been found to contain a genetic mutation called IDH1. Not only is it in Gliomas, but in a lot of cancers...liver cancer, sarcoma, and a close relative of IDH1 (named IDH2) exists in leukemia. Now, to anyone with a very non science background (myself HUGELY included in this), this is all very confusing, but I'll try my best to keep it in"non science genius" words.
This mutation is a very curious thing. I thought about explaining how the WHOLE thing works, but it would extend beyond my scientific reach to explain it correctly. But the bottom line is that this mutation preys on cells, in essence, that are suffering an identity crisis. These are "primitive" cells that never quite develop, and the mutation helps it develop into cancer/tumors (this is simplifying the concept in a big way, but it's the gist).
Now, the medicine they're testing is promising in some very key ways. Unlike typical chemotherapy, this drug is considered a biologic. As in, it's purpose and intention is not to kill a single cell, but to heal the cells (or in this instance, force them to mature into healthy cells). That's right...the premise and hope for this medication is to treat cancer without killing it. Pretty crazy, right??? Not only that, but it's considered a targeted therapy. Whereas typical chemo would be administered and effect the body systemically (as a whole), this targets only the mutation. We have high hopes for this medication to work, but trying to keep level heads since it's still a very new concept. However, in leukemia patients last year, the clinical trial was found to put almost 50% of patients tested in full remission, without damaging their bone marrow.
I have plenty more I could explain, but Kenny has informed me that what I've said already has probably bored people to tears, so I'll keep the science stuff to a minimum for the time being. However, if you're at all interested, please feel free to read some of the below articles on the topic (he is participating in the trial by Agios).
http://investor.agios.com/phoenix.zhtml?c=251862&p=irol-newsArticle&ID=1829945
http://www.agios.com/pipeline-idh.php
As for every day life, we just keep on, keeping on. If anything the last couple of years, we've learned to live life in between appointments. What else can we do? I'll check in with, well, lots of stuff coming up. It's not exactly how I wanted to get back into writing, but as those brilliant Rolling Stones say, "You can't always get what you want, but if you try sometimes, you find you get what you need." We need some good vibes friends, so send 'em if you got 'em!
They let us know that his options, for now, are radiation therapy, or clinical trial drugs. Both sounded pretty scary. However, after lots of research, and information thrown our way, the clinical trial sounded pretty promising. At the very least, attempting it would save him radiation for the time being. The reason his neuro oncologist would really like to push off radiation is because it's a one shot deal...and even then, he said, the results were unpredictable (as in, it may only stop growth for a matter of months or a few years). So here we found ourselves, 2 years after we thought we'd be done talking about it (albeit foolishly), and making more big decisions.
So this past Friday, after multiple trips to Sloan, a few scans and lots of talking about it, Kenny signed on the dotted line. He is now on the fast track to beginning the clinical trial...fast as in he begins on TUESDAY. Yes...as in two days from now. Friday became a whirlwind of meeting doctors, researchers, trial RN's, Oncology pharmacists, and a ton of pre-trial testing (blood, 2 ekg's, echo cardio gram, the works...). By the time we got home Friday night, we were wiped, yesterday we were slightly more awake, and today we're feeling human and ready to prepare. It's going to be an intense 3 month regimen of appointments at Sloan to monitor his body's response, and constant testing to make sure his body is handling it all well. And if any of you know Ken, you know how much he LOVES needles (HA!). It will be a lot of work for Ken, our little family, and the amazing family we have surrounding us that are helping us in every way possible (from kid sitting to massive amounts of moral support). But in the end we're hoping for a big payoff. Nothing ventured, nothing gained, right?
Now for the science-y part of the tale. The hope of this medication is that it stops tumor growth (and maybe even shrink it a little). How?? Well, 70% of Gliomas have recently (recently as in the last 5-7 years) been found to contain a genetic mutation called IDH1. Not only is it in Gliomas, but in a lot of cancers...liver cancer, sarcoma, and a close relative of IDH1 (named IDH2) exists in leukemia. Now, to anyone with a very non science background (myself HUGELY included in this), this is all very confusing, but I'll try my best to keep it in"non science genius" words.
This mutation is a very curious thing. I thought about explaining how the WHOLE thing works, but it would extend beyond my scientific reach to explain it correctly. But the bottom line is that this mutation preys on cells, in essence, that are suffering an identity crisis. These are "primitive" cells that never quite develop, and the mutation helps it develop into cancer/tumors (this is simplifying the concept in a big way, but it's the gist).
Now, the medicine they're testing is promising in some very key ways. Unlike typical chemotherapy, this drug is considered a biologic. As in, it's purpose and intention is not to kill a single cell, but to heal the cells (or in this instance, force them to mature into healthy cells). That's right...the premise and hope for this medication is to treat cancer without killing it. Pretty crazy, right??? Not only that, but it's considered a targeted therapy. Whereas typical chemo would be administered and effect the body systemically (as a whole), this targets only the mutation. We have high hopes for this medication to work, but trying to keep level heads since it's still a very new concept. However, in leukemia patients last year, the clinical trial was found to put almost 50% of patients tested in full remission, without damaging their bone marrow.
I have plenty more I could explain, but Kenny has informed me that what I've said already has probably bored people to tears, so I'll keep the science stuff to a minimum for the time being. However, if you're at all interested, please feel free to read some of the below articles on the topic (he is participating in the trial by Agios).
http://investor.agios.com/phoenix.zhtml?c=251862&p=irol-newsArticle&ID=1829945
http://www.agios.com/pipeline-idh.php
As for every day life, we just keep on, keeping on. If anything the last couple of years, we've learned to live life in between appointments. What else can we do? I'll check in with, well, lots of stuff coming up. It's not exactly how I wanted to get back into writing, but as those brilliant Rolling Stones say, "You can't always get what you want, but if you try sometimes, you find you get what you need." We need some good vibes friends, so send 'em if you got 'em!
Tuesday, September 16, 2014
A reintroduction!
It's been almost 4 months (!!!!) since I've had a chance to write, and over two years since I've gotten a chance to write about things I used to like to write about (you know, life BTM- before brain tumor). I've missed writing about fluff...silly parenting anecdotes, personal challenges, and "normal" daily life things. The last two years have been a trip, to say the least. It's been a "process." It's kind of felt like a lot of shoes dropping...every time we'd get back to standing, something would make our knees buckle or fall over altogether. In the mean time, I took a much necessary hiatus from writing. While writing is usually the thing that helps me most, rehashing the negative felt counterproductive. Instead of writing about the past, I needed to learn to live again in the present. I had to...for myself...for my kids...for any one of us to have happiness, I had to stop looking over my shoulder. It hasn't been an easy process-little set backs can send me spiraling, but for the most part, we're doing pretty great. And last week, out of nowhere, the urge to write resurfaced...except I didn't want to rehash any of the crappy stuff. I wanted to write about life again...parenting struggles, recipes, home decor, weight problems, clothes...you name it! I can't say I'll never write about the serious again...after all, I can't control life...but I think for a while, I'll stick to the daily living part ;)
The blog page will be under construction for a little while...I haven't updated my banner since before Ben was born, and since he started preschool last week, I think it needs a new look! See ya soon!!
The blog page will be under construction for a little while...I haven't updated my banner since before Ben was born, and since he started preschool last week, I think it needs a new look! See ya soon!!
Monday, May 5, 2014
Weird Dreams and Silver Linings
So I had this dream last night...my in-laws, Kenny and I took the kids to Disney World for a long weekend. The kids stayed with Kenny's parent's in their room, and he and I got up before the sun to go to the park early. We rode the monorail, and I remember looking at the empty pools, lake sides, and benches around the seemingly deserted resorts. When we arrived at the park, it was apparent it was going to start raining soon. I remember thinking we should have brought ponchos, because we were only getting to be there for a couple of days, so rain wasn't going to keep us from the magic of Disney World. Then, the sunrise got dark. The wind picked up. I overheard a park worker saying that since the sky was so dark they were going to have fireworks. Making lemonade out of lemons, I suppose. The fireworks began and I started taking pictures, thinking I would show the kids when they got to the park. Just then my in-laws arrived. The kids were still asleep with Aunt Alyssa, and I thought, oh good, they're getting some extra sleep so they can have energy to last the day at the park! It was around this time that I woke up.
Anyone who knows me, personally, knows we've had a crazy year so far. Almost two years after being diagnosed, it finally sank in that Kenny's brain tumor isn't something that's going to go away. Being so focused on surgery, recovery, and the aftermath, we never let ourselves get too far ahead. This last MRI, while still terrific, gave us a heavy dose of reality. The radiologist thought she might have seen ("thought" and "might" being the operative words), some subtle growth (the neurologist, however, says he compared MRI's as far back as December of 2012, and he sees no change...I believe the word he used of the radiologist's report was "dubious"). He said to us, as nonchalantly as though he were telling us it might rain today, that it's always a possibility, with there still being 10% of the tumor being left in, that it will continue to grow. It's not cancerous, and would need to grow a lot more for it to cause any more problems. That's why we do the MRI's. In his words "We might have to deal with again sometime in the future, but that time is not now." Those are all things they've told us all along...just things we never let ourselves think about. A few hours, a serious conversation, and a couple of drinks later, Kenny and I digested this information and realized we still got it good. He's still healthy. It's still not really growing. And this thing isn't going to be the thing that takes him when he's 95 and sipping ensure out of a whisky tumbler.
We had a lot of hopes pinned onto 2014. The smallest (and biggest) of all, would be for it to be a quiet one. Well we know how these things go...we don't get a choice if/when things happen. It's been a doozy so far. Aside from the above, it's been a whirlwind. It's no shock that, after years of resisting doing so, I finally caved and started taking anxiety meds. Best.Decision.Ever. While it would have been lovely to "power through" (yet again), it was seriously shaking my ability to function properly. Hand wringing, pacing, obsessively checking myself for lumps, bumps, and skin lesions, I knew it was time. I still have moments...our plate is a little full at the moment, but overall, I'm able to think much more clearly. I'm able to feel confident that the people we love are in good hands, and will be okay. I'm able to get up each day and keep my kids' lives intact. I can't say it will always be that way, but every day that I can do that feels like a big check mark in the "win" column for me.
Which brings me back to my dream. One of the side effects of the medicine is "weird" dreams. What I'm finding, however, is that my dreams are much more indicative of how I'm feeling. A few nights ago, I dreamt I had a "knock down, drag out" fight with an old friend who disappeared after my kids were born. Never even reached out when she knew everything was going on with Kenny, or when my mom was diagnosed with breast cancer. I've been mad about it for years. While the fight will never happen in real life, I did get some bizarre closure by having it out in my REM cycle. And last night...I think that my dreams were saying that even my subconscious can see a silver lining. That my kids are young enough to not totally understand what's going on, that Kenny and I are in this together, and that sometimes life gets dark and cloudy, but you can still see some beautiful fireworks.
Anyone who knows me, personally, knows we've had a crazy year so far. Almost two years after being diagnosed, it finally sank in that Kenny's brain tumor isn't something that's going to go away. Being so focused on surgery, recovery, and the aftermath, we never let ourselves get too far ahead. This last MRI, while still terrific, gave us a heavy dose of reality. The radiologist thought she might have seen ("thought" and "might" being the operative words), some subtle growth (the neurologist, however, says he compared MRI's as far back as December of 2012, and he sees no change...I believe the word he used of the radiologist's report was "dubious"). He said to us, as nonchalantly as though he were telling us it might rain today, that it's always a possibility, with there still being 10% of the tumor being left in, that it will continue to grow. It's not cancerous, and would need to grow a lot more for it to cause any more problems. That's why we do the MRI's. In his words "We might have to deal with again sometime in the future, but that time is not now." Those are all things they've told us all along...just things we never let ourselves think about. A few hours, a serious conversation, and a couple of drinks later, Kenny and I digested this information and realized we still got it good. He's still healthy. It's still not really growing. And this thing isn't going to be the thing that takes him when he's 95 and sipping ensure out of a whisky tumbler.
We had a lot of hopes pinned onto 2014. The smallest (and biggest) of all, would be for it to be a quiet one. Well we know how these things go...we don't get a choice if/when things happen. It's been a doozy so far. Aside from the above, it's been a whirlwind. It's no shock that, after years of resisting doing so, I finally caved and started taking anxiety meds. Best.Decision.Ever. While it would have been lovely to "power through" (yet again), it was seriously shaking my ability to function properly. Hand wringing, pacing, obsessively checking myself for lumps, bumps, and skin lesions, I knew it was time. I still have moments...our plate is a little full at the moment, but overall, I'm able to think much more clearly. I'm able to feel confident that the people we love are in good hands, and will be okay. I'm able to get up each day and keep my kids' lives intact. I can't say it will always be that way, but every day that I can do that feels like a big check mark in the "win" column for me.
Which brings me back to my dream. One of the side effects of the medicine is "weird" dreams. What I'm finding, however, is that my dreams are much more indicative of how I'm feeling. A few nights ago, I dreamt I had a "knock down, drag out" fight with an old friend who disappeared after my kids were born. Never even reached out when she knew everything was going on with Kenny, or when my mom was diagnosed with breast cancer. I've been mad about it for years. While the fight will never happen in real life, I did get some bizarre closure by having it out in my REM cycle. And last night...I think that my dreams were saying that even my subconscious can see a silver lining. That my kids are young enough to not totally understand what's going on, that Kenny and I are in this together, and that sometimes life gets dark and cloudy, but you can still see some beautiful fireworks.
Monday, January 13, 2014
Random Bummer of the Day
I know I've mentioned once or twice (or a MILLION times) that my favorite movie ever is Just One of the Guys. I love, and I mean LOVE LOVE LOVE that movie. I've always loved the fashion in the movie, even when it wasn't cool (so say, 1990 until last year). It dawned on me today that the clothes in the movie could certainly pass for cool outfits today (side note: am I totally dating myself by saying the words "cool outfit?"). There is this one scene where the main character (Terry) wears this amazing white leather outfit...I was nuts about from the first time I saw it. It was so girly, and when I was little, had this "wow" factor I couldn't explain. Of course, by the time I was actually old enough to wear such an outfit, I would have been laughed out of my baggy Jenko jean, Simple/Van sneaker wearing high school. Not to mention I was super overweight so I would probably have looked like a stuffed sausage, but that's neither here nor there. And now...now that its 2014 and pretty much ANYthing goes fashion wise...I'm too old and too flabby (post two pregnancies) to pull off this adorable getup. There you have it- my random bummer of the day. ::Sigh::
Thursday, January 9, 2014
Hello, 2014!
New Year's Eve was no different than any other night in our house. We didn't put on hats or blow horns. We didn't stay up late or watch the ball drop. But whether or not we acknowledged it, while we were off in dream land, 11:59 pm became 12:00 am, and 2013 handed her torch to a newborn 2014. We might sound like New Years scrooges to some people. I mean, isn't it always fun to stay up late, sip champagne (or apple cider) and dress up? Well, yeah, it is; and many other years I've done just that, but this year just felt different.
The end of 2012 was a cathartic and symbolic experience. Kenny was a couple of months post op from his neurosurgery, we'd just moved home from his parent's house a few weeks before, and exhausted from the year we'd had, we still had no clue what the year to come had in store. Those first months of 2013 were hard. Really hard. They are a blur of worry to me. By Spring we were coming out of the fog and packing our bags for Disney World. When I say that week was just what the doctor ordered, it's an understatement (in fact, Kenny's neurologist at Sloan told him to go ahead and get scared and sick on throw up rides!). As hokey as it sounds, that place really is magical. One week recharged us. It reminded us how to laugh, how to enjoy watching our kids play, and that life needed begin moving forward again. Not long after we got home, we made the HUGE (if not insanely impulsive) decision to put our house on the market.
Two and a half months of scrubbing, vacuuming, and running around like a loon, and the house we'd spent 6 years calling home officially belonged to someone else. We'd spent most of that time looking at homes up in Cranford- about 20 minutes away. We scoured high and low, and found nothing that felt like home to us. Giving our area one more chance, we found our house. We visited it two days in a row, and bid on day 3. While it's only been 3 months, it feels like a lifetime ago. Our new house still has a lot of work to be done, but it feels like it's ours even without it. It was vacant for a year before we bought it (it was damaged during Sandy, and was fixed by a "flipper"), and sometimes I like to think it was just waiting for us to stroll through it's doors. The neighborhood is better than we could have imagined. Little things we didn't appreciate when we bought the house- like that it's a decent sized development, but there's only one street that enters/exits (and we are all the way in the very quiet back end). We had no way of knowing that we'd be literally surrounded by homes filled with kids the same ages as our kids, or that there is an HOA that hosts all sorts of family parties throughout the year.
I'll be honest- I've had a lot of "I miss our old house" moments. We'd spent so much time, money and effort into updating that house and making it our own. I still miss the open kitchen, the fireplace, and little nuances that made it home- like the water stain on the kitchen island. I spent hours of my life trying to scrub out that damn circle, and when I finally accepted defeat, it became one of those little things that made our house our home. I realize it's going to take time for things like that to happen in a new space...places don't feel like home overnight, or sometimes even in a few months. But on a spring like winter day a few weeks ago, when my kids got to ride bikes around the neighborhood and got to play with the neighbors on their "playground" in the back yard, all without having to set foot in the car, I knew we'd made the right decision. With every ding in the wall my kids make with their scooter, or with every new memory we make, the house will feel like home. So on New Year's eve, after having "a year"- it seemed only fitting that we got one of the best nights of rest we'd probably had in all of 2013. Our kids were both asleep by 7:30. I'm pretty sure we were both out by 9:30, and I woke up at 11:53. I thought about turning on the TV to watch the world ring in 2014- but knowing my kids were snuggled up tight and the husband was resting well next to me was all the celebration I needed. So instead I rolled over and woke up in a new year.
I have no clue what the year will bring, but unlike previous years, I'm making no attempts at guessing. My only goals for the year are balance and acceptance. Acceptance of who I am, what my limits are, and what my relationships are. I'm never going to change anyone else, I can only change myself or who I surround myself with. To accept that, some days, I'm not going to be a perfect mom, or even a great one; but that some days I'm going to be tired, and Tangled will be on "replay," and some days I will throw a cheeseburger at them instead of making them an assortment of lean meat and vegetables. To accept that some people are just not going to like me, but that is no reason to not be who I am- pretending otherwise hasn't made them like me any more or less. I want my life to feel balanced. I have a tendency to throw myself full throttle into one direction; but this year I'd love to make sure I make time for everything...a little bit of work, a little bit of play, some time for the things I enjoy (like writing and exercising), to see friends that I miss terribly, and for the hubs and I to catch up. Not very exciting as far as resolutions go, but if you ask me, I've had plenty of excitement to go around. I'm ready for some zen. Happy New Year! I hope everyone achieves whatever their hearts desire in 2014.
I'll be honest- I've had a lot of "I miss our old house" moments. We'd spent so much time, money and effort into updating that house and making it our own. I still miss the open kitchen, the fireplace, and little nuances that made it home- like the water stain on the kitchen island. I spent hours of my life trying to scrub out that damn circle, and when I finally accepted defeat, it became one of those little things that made our house our home. I realize it's going to take time for things like that to happen in a new space...places don't feel like home overnight, or sometimes even in a few months. But on a spring like winter day a few weeks ago, when my kids got to ride bikes around the neighborhood and got to play with the neighbors on their "playground" in the back yard, all without having to set foot in the car, I knew we'd made the right decision. With every ding in the wall my kids make with their scooter, or with every new memory we make, the house will feel like home. So on New Year's eve, after having "a year"- it seemed only fitting that we got one of the best nights of rest we'd probably had in all of 2013. Our kids were both asleep by 7:30. I'm pretty sure we were both out by 9:30, and I woke up at 11:53. I thought about turning on the TV to watch the world ring in 2014- but knowing my kids were snuggled up tight and the husband was resting well next to me was all the celebration I needed. So instead I rolled over and woke up in a new year.
I have no clue what the year will bring, but unlike previous years, I'm making no attempts at guessing. My only goals for the year are balance and acceptance. Acceptance of who I am, what my limits are, and what my relationships are. I'm never going to change anyone else, I can only change myself or who I surround myself with. To accept that, some days, I'm not going to be a perfect mom, or even a great one; but that some days I'm going to be tired, and Tangled will be on "replay," and some days I will throw a cheeseburger at them instead of making them an assortment of lean meat and vegetables. To accept that some people are just not going to like me, but that is no reason to not be who I am- pretending otherwise hasn't made them like me any more or less. I want my life to feel balanced. I have a tendency to throw myself full throttle into one direction; but this year I'd love to make sure I make time for everything...a little bit of work, a little bit of play, some time for the things I enjoy (like writing and exercising), to see friends that I miss terribly, and for the hubs and I to catch up. Not very exciting as far as resolutions go, but if you ask me, I've had plenty of excitement to go around. I'm ready for some zen. Happy New Year! I hope everyone achieves whatever their hearts desire in 2014.
Saturday, August 3, 2013
Day 365
A day that used to feel so far off has arrived. Day 365. The Earth has orbited the sun one more time, and while a lot has changed, a lot has stayed the same.
A year ago yesterday, I woke up and had a blissful morning. I still look back at those first 8.5 days of Ben's life as the most blissful week I'd ever experienced. He was a terrific little monkey...eating and sleeping- no muss, no fuss. Cam was starting to warm up to her little brother, and basked in her new found title of "big sister." Of course, I don't need to rehash what happened later that day. There were so many unknowns that first night, so many terrifying "what ifs." Looking back on that day, and the subsequent months, it feels like I'm outside looking in- kind of like watching a Lifetime movie. Very surreal to say the least.
A year ago today, I woke up in the same house, but a different life. For the short term, that meant living with Kenny's family to help with the kids (10 days postpartum in this situation was just an added stressor), and learning a new vocabulary. In the long term, it meant learning to accept the fact that things weren't going to go back to the way they were. At first, I felt so desperate to go back in time; feeling that weighed down for the rest of my life felt like a prison sentence. For months post op, I would ask Kenny constantly if he felt okay, if he got enough sleep, if he remembered to take his medicine, etc. But somehow, over time, I grew more comfortable. I'm not sure if that is the right word, but these days the only thing I ask is if he's remembered his medicine in situations where he might forget (like if he goes out after work).
This morning I woke up in the same house I did a year ago. Ben isn't a little newbie anymore. He's a walking, talking little boy. He screams when I change his diaper (because it requires being still for 35 seconds), he plays peek-a-boo with himself and anyone else who'll join in, he says "uh oh" when he purposely drops his food on the floor for the dog, he says "bye bye" and blows kisses when you leave, and smiles with pride whenever he accomplishes something (even if its something you don't want, like climbing 2-3 stairs before you can get to him). I spend a lot of my day saying "no no!" and redirecting him...over and over and over again. Just like any of my other mom friends would be doing. Like the first 3 months of his life weren't a total blur of everything that starts with the word "neuro." In some respects, I feel great that things are mostly so normal. In others, I feel a lot of guilt that Ben's first year was spent trying to get there. It took me a long time to get back on track after we moved home. In hindsight, I wasn't ready to be on my own just yet; but feeling clouded by everything that had happened, I think I just didn't have the tools to communicate that. In the end, though- or in the "year after"- we count ourselves lucky. It could have been worse. A lot worse.
As for Kenny, he's doing GREAT. It's been 10 months to the day since surgery, and you'd never know it other than the scar that remains. His last two MRI's came back clean (other than the little bit of tumor they had to leave in), and since it's now been a year since his first and only grand mal seizure (knock wood!), he can resume driving- a freedom he's missed very much. We have put our house on the market; AND are in attorney review on the home we hope to raise our kids in. A year ago I would have told you we were contemplating a ranch- since stairs + seizures usually don't go hand in hand. But with a year free, we kind of went full throttle in the opposite direction- the house we are buying not only has stairs...it's a split level...with 5 levels. As my therapist says, "Feel the fear, and do it anyway." It's not easy for me to do that, but when I repeat that to myself and take a deep breath, I can usually switch gears from fearful to hopeful.
It's been a crazy journey, this year. I have to say, one of the weirdest things about it, is that when I look at my kids, I realize that they have no clue what went on. I have the distinct memories of running to the phone to call 911, in what felt like slow motion. I remember the look on Kenny's face when he came out of the seizure. The look on his parents' faces when the doctor first uttered the word "tumor." The beaming smile on the neurosurgeon's face when she emerged from surgery. That horrible feeling in the pit of our stomachs when we realized he couldn't speak for days after the surgery. And the pride on Kenny's face when he was finally able to answer all of the one word questions they asked him for his neuro exams at Sloan. I'll never forget any of it. But my kids...they'll never really know. The irony of it all being that they were our motivation. When Kenny was in the hospital we constantly showed him pictures and videos of them. Ben, then only 2 months, started smiling like crazy all of a sudden; like a little ray of sunshine. Cam soaked in the city life and loved every second. Her infectious giggle keeping us all afloat.
Nowadays, my day looks like anyone else's. Kenny works from home a few days a week, but I generally wrangle the kids Monday through Friday. He works. I mother. I feed my kids. I dress my kids. I wrestle with the tantrums. I chase the walker who thinks the steps are his next conquest in life. I take my daughter to swim lessons, I rock my son to sleep. I clean my house, I run my errands, I take my kids on play dates. Nothing about anything I do day to day seems out of the norm anymore. At this time, fingers crossed God willing and knock on wood, you'd never know that a year ago was a horse of a different color.
Ken and I would both like to thank anyone and everyone who were there for us, reached out to us, said a prayer for us, or even just thought of us and wished us well every so often. Having the support of so many made such an impact, I really can't even express it. Thank you, thank you, thank you- from the bottom of our hearts, for lifting us up, and helping us get back to being that smiley little family you see below.
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| Newborn photo session, 2 hours before the seizure on 8/2 |
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| August 2/3- middle of the night- took this to show Kenny at the hospital |
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| August 3, reunited with the babies |
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| Night before surgery, post pre-op MRI |
It's been a crazy journey, this year. I have to say, one of the weirdest things about it, is that when I look at my kids, I realize that they have no clue what went on. I have the distinct memories of running to the phone to call 911, in what felt like slow motion. I remember the look on Kenny's face when he came out of the seizure. The look on his parents' faces when the doctor first uttered the word "tumor." The beaming smile on the neurosurgeon's face when she emerged from surgery. That horrible feeling in the pit of our stomachs when we realized he couldn't speak for days after the surgery. And the pride on Kenny's face when he was finally able to answer all of the one word questions they asked him for his neuro exams at Sloan. I'll never forget any of it. But my kids...they'll never really know. The irony of it all being that they were our motivation. When Kenny was in the hospital we constantly showed him pictures and videos of them. Ben, then only 2 months, started smiling like crazy all of a sudden; like a little ray of sunshine. Cam soaked in the city life and loved every second. Her infectious giggle keeping us all afloat.  |
| Cam's Thanksgiving celebration at school, 7-8 weeks post op |
Ken and I would both like to thank anyone and everyone who were there for us, reached out to us, said a prayer for us, or even just thought of us and wished us well every so often. Having the support of so many made such an impact, I really can't even express it. Thank you, thank you, thank you- from the bottom of our hearts, for lifting us up, and helping us get back to being that smiley little family you see below.
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| Ben's 1st birthday, 7/24/13 |
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