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.
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| Newborn photo session, 2 hours before the seizure on 8/2 |
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.
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| August 2/3- middle of the night- took this to show Kenny at the hospital |
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).
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| August 3, reunited with the babies |
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.
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| Night before surgery, post pre-op MRI |
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.
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| Cam's Thanksgiving celebration at school, 7-8 weeks post op |
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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| Ben's 1st birthday, 7/24/13 |
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. 
