I've dabbled in photography for years, and as a result, Sade is likely the most well-documented child in the world, but recently I've begun to take it more seriously. So I setup a Facebook page for inquiries and to show off all the pretty babies in my family. You can check it out at the link below.
at 2:28 AM
Today, you are two. You've known you were about to turn two for awhile; every time I asked how old you were, you'd say one. Then I asked how you were going to be, and you said two! And you tried to hold up two fingers, but really, you just made the gun sign with your fingers. Sometimes the Star Trek sign.
I'll make sure you get it right before your party, although I know if anyone asks, you're not going to do it. You'll get really shy and overwhelmed by all the kids, and you'll clam up. You take a few minutes to warm up. Even when you're at library class, you sit in your little chair between Kerry and Molly and search for me, right behind you, for the first couple minutes. You never get restless anymore while the teacher reads. At the end of the class, I prod you to say "thank you" but you're so shy! You usually wave, though.
Two. You are a big girl now. in many ways, you are the same Sadie you were at one. Goofy and happy and an avid fan of books and my iPad, which you only get once you've completely exhausted me for the day. Right now you're obsessed with the videos on my phone. "Vid-yo. Vid-yo." God, kid, you must say it twenty times a day. You love watching yourself laugh and run and your favorite one is you on the swings. "Wings!" you say.
You've always found me very funny. But now you laugh at me ALL THE TIME. If I run into something, you laugh! You laugh at me now, and it kills me. "Sadie!" i exclaim, as if I'm really hurt. And you only laugh harder. You are much nicer to Pop-Pop.
A couple weeks ago, we took you to Chuck E. Cheese. Mama went out to the car for something, and I let you run wild. I'm a little more free-range this way. For a terrifying second, I couldn't see you. And then I looked down and you were trying to figure out how the video games were plugged in. You are a lot like your dad. You're always trying to figure out how everything works, how everything fits. You are a lot like your mom. You love to mother your babies. You love books. You are so sweet, when you aren't trying to make me laugh with your sneaky, witty ways. You love big and you spread your affection wide, just like my sister does.
You love cars and trucks and trains and Minnie Mouse. You love your babies and the teepee I bought you at Target. You love to go in there with your books and baby dolls.
I still take naps with you, even though it's probably a bad idea. Lately you have gotten very clingy. Last week, I turned to sleep on my side and you scooted over until you were the big spoon to my little. I love watching you wake up. It's the only 30 seconds of the day when you're not at 200%.
You love the beach. You love the ocean. You got over your fear of pools. You are an outdoorsy kid. You love "outduuuur." Your favorite thing to do is take "outduuur" showers. You could stay in there all day, filling up buckets, washing the sides of the shower, hiding from me behind the curtain. It's getting cold now, and I'm preparing for the fits you're going to throw when we can't go outside every second.
You are only two, and so you are easier to understand than grown-ups. I know you better than I know anyone else. I know exactly what you want when you want it. And God, you are such a good kid. My love for your eclipses all the frustration of toddlerhood.
You are sticky, sweet joy. I hope I never forget your first two years. (That's sort of the point of documenting you.) You are so goddamn lucky. You're a star, and I think you need a sibling soon or else your ego may become Auntie Kelly sized.
Sadie, I love you more than anything else on this planet. Thanks for being my reason to keep going. Thanks for being born. And thank your parents for letting me be such a huge part of your life. I take this role very seriously.
I always will. No matter how much you laugh when I stub my toe. Stinker.
at 4:36 AM
Hey, check this out! This is a great way to support the JDRF. Just print this flyer and bring it to a Walgreens or Duane Reade to get your flu shot and a portion of the proceeds goes to the JDRF, which goes toward research and care for type one diabetics.
(A quick serious note: right now my body is immunocompromised. I have to wear masks on airplanes, that's how susceptible I am to infection. So if we hang out, PLEASE get a flu shot. There's different strands of the flu and even a seemingly minor infection will land me right back in the hospital, even though I'm already vaccinated against flu and pneumonia.)
This is a perfect way to support kids & grown-ups with Type 1 while protecting yourself against the long winter ahead! Thanks for all the continued love and support!
at 10:16 AM
I've officially spent 8 days here: Wednesday. Thursday, Friday, Saturday, Sunday, Monday, Tuesday, Wednesday. Today is Thursday and I'm for another night.
If you remind me of how beautiful those days are, I will cut you, and you'll be reluctant to free me from anyplace, anytime.
This morning was interesting! I was going to get to go home, despite the nonstop PukeFest2014, but then my blood sugar tested at 545.
In layman's turns, my pancreas is Jack at the end of Titanic. Occasionally spurting out some signs of life, but mostly just frozen, half-dead and weighing me (here, I am Kate Winslet. Duh.) down.
I've got no love for my pancreas. Float away, already!
So I'm here another night, having been tested, scanned, radiated and stuck more times than I can count. Oh wait yes I can it's SEVENTEEN. These baby hands may charm and freak you out, but they are shit when it comes to pushing IV drugs. DUMB BABY HANDS Y U SO SMALL?
My parents have been here regularly, cleaning me up when I puke, changing my lines and helping with everything because, you know..."I've been a nurse for 35 years!"
And she does help. And I'm grateful for her and Dad, who's constantly dropping in even though I am a cranky, drugged, sick, stinky millennial, tweeting my miseries into the great big Cloud of Embarassment. He's here, and so are Kristie and Greg, and many more friends and family have called, and wrote me and made me feel so much less alone. Sorry I won't let you visit, but I look rabid.
My team of specialists (basically a full football team) has figured out what's going on and though I don't care to specify at this time, I will admit to saying this. IT SUCKS. My body is an automated Berg-killing machine! Luckily, everything looks benign, but we must kick some gastric, pancreatic, neurological, psychological, rheumatologica ass before I attempt to strike out on my own again.
California will be there, unless it falls into the sea (sooorrrryyy) and I will be there soon. I am aiming for November.
But more than that, I hope to be managed and healed and alive to see Sadie turn 2 in two weeks and 21 nineteen years from now. Baby's first lemon drop shots! Her realization that Auntie Kels is a cougar and she should run to another bar! I can't wait!
Kids, I don't live a day without pain. But that's not gonna stop me living. It's a big world. I've only just begun.
Thank you for the support and gifts and love. I am humbled and emboldened by each of you.
Love and drugs,
PS: Many of you have asked how to help: fundraising for First Descents would be the ultimate gift. They are my cancer family and the best thing I have ever been a part of: Dotcom Fundraises for Important Cause
Thank you. I love you all madly.
wed/thur/fri/sat/sun/mon. 6 nights here and I don't think I am leaving yet. I'm so cranky and I won't let anyone in, to see me or otherwise.
six nights means I'm used to the smells, the noise, the unending clash of bells and whistles. the wake-ups, double now that my blood sugar needs to be checked. so midnight. two am. four am. and every two hours onward.
I am allowing the drugs to block this out but the haze has to lift (and it does, an hour after the IV push). the memories will resurface and bind themselves to me, scar tissue on my fingers and belly and arms. tiny scars. a broken summer.
on Friday I am supposed to move to Los Angeles. this is no longer. I have realized it would be foolish to go in the midst of what my doctor dubbed "a bad, bad time." I don't know if I have given up or accepted the reality that no doctor thinks it's a wise choice for me to travel right now, let alone deal with the stress of a cross country move.
I had been so looking forward to a restart but I have to tie my laces before I run.
soon I'll stop running fevers and throwing up. I'll stop with these allergic reactions. and soon they'll figure out why my diabetes isn't responding to insulin the right way. soon they'll diagnose me with something else and put me on a new regime.
until then, I am here.
I've been back in New Jersey since mid-June, and if you follow me on Instagram or Facebook, you know it's been a tough couple months.
In California, I felt a change start to occur. I was outside more, and I felt more alive. Each emotion was felt keenly and I wasn't burying my head in pillows and sleeping away the day when I felt the slightest twinge of anxiety. My depression was starting to melt. I had bad days but they were fewer, because I was in a place I truly love. I left energized, promising I'd continue to work on myself here.
But I didn't. I fell back into bad habits.
CA was about working to make me better, a step at a time. When I felt sick, I let myself be okay about feeling shitty, because I knew it was hard getting used to a "normal" schedule and life again, in a notso normal body. (Sadly to say, I don't JUST suffer from a disease called laziness.)
When I got home, my will to reenergize collapsed. I am still working on finding out why, but I've got a theory.
In NJ, I have my cushion. I have my parents and brother as caretakers, to help me and cook for me and do my laundry. I took advantage of this, thinking it would help me achieve my goal to return to CA refreshed and well.
But this backfired. Since I was taking no responsibility for my health, I let it fall apart again. All the work my body had done in CA was practically destroyed.
Here, I have Sadie three days a week and another nanny job 20 minutes away. When I wasn't focusing on the kids, I was sleeping and eating poorly. I let myself get rundown and because I was tired, I let myself become lazy. I kept thinking: "I'll be better in LA."
In CA, I was surrounded by two little girls nearly 24/7. It was exhausting, but it was awesome, because they are so fun and cute. Because I needed to be OK to care for them, I treated myself better.
Here, I wasn't up or active enough. I do a lot of things with Sadie and after babysitting, I get into bed. I stopped taking my nightly walks and instead wasted brain cells on reruns of ER.
I developed more pain and a lot more trouble with my blood sugar. And then, two weeks ago, I had scans and blood work done. The results scared me.
The ultrasound showed fatty deposits in my liver and inflammation and gallstones in my gallbladder. I told close friends this information without really bothering to research or explain it. It scared me and it scared the ones close to me.
My plan to move to CA was crashing, and fast.
Until this week, when I did some research, talked to friends who'd been through this and leaned on the support of my Type 1 Diabetes group. I also talked to my doctor. And this is what I learned:
The gallstones I have cause upset stomachs and can eventually cause blockage, which would lead to immediate surgery. But mine are quite small and won't need surgery if I don't want it. And I'm not going to have my gallbladder removed to resolve indigestion and nausea, my major symptoms; people have told me surgery made them worse. Most older people in their 50-60s have them, and they walk around with them for years. I can get surgery if I want, but I am going to treat it with diet and see how I do. Eventually I'll need surgery, but hopefully that's a long way off.
The same treatment goes for these fatty deposits in my liver. It's called Non-Alcholic Fatty Liver and it is a complication of my diabetes. HOLY SHIT, I thought. I freaked out for a week over this, thinking that my liver was failing and I'd need a transplant asap. But I had blood work done, and my liver function tests are completely normal. And I learned that fatty deposits in the liver are completely reversible with better controlled diabetes.
The news I got was still crappy. And I had a huge decision to make. I had two options: square away my health issues here with my cushion, or say screw it and go to LA*.
I am choosing the latter. But with a big f-ing asterisk.
*Before I go to LA, I will be put on a continuous glucose monitor. This device, called a CGM, checks your blood sugar every minute. It knows when you're in range or when you are too high or low. When I'm too high, my liver suffers. I get terrible headaches. I sleep constantly.
When I am low, I am wobbly and unsure. I also suffer headaches and dizziness. It is dangerous and can be life-threatening. And these lows were a major reason I was going to stay in NJ. Because I didn't think I could take care of myself if I were suffering from these lows.
But with the CGM, I won't ever have a scary low. I'll be alerted by alarm when I am too high or low. This will help put my diabetes back under control. It will reverse any liver damage. It will alleviate my anxiety. It will plug me back into life. It'll ensure that I can take care of myself and others.
When it comes down to it, I can't live here with my cushion forever. I love my family and niece and I love home but I want to have a life again. It's time for me to permanently move to California.
I can't do this without support, but I have my cousin and friends in LA.
And I can't do it without doctors, which is why I have an appointment with a nationally ranked diabetes doctor three days after I fly in. And that juicer I bought and have been using? It's coming. So is my bike. (And my helmet because c'mon.)
This is a big step for me. It's not going to be easy. Because of my health, nothing will ever be easy. But I've put bolts in this plan. This plan has insurance. This plan has a foundation stronger than any of my other plans have ever had before.
I am emboldened. I am fucking ready.
at 10:24 PM
When strangers ask me why I got this paper airplane tattoo on my forearm, I weakly reply that I've always wanted a tattoo in this spot. I don't tell them that this is where I typically have an intravenous line put in. I don't say that it's where the bruises first show up, the gashes from a blown line, the rash from a new allergy.
So much of recovery from an illness–especially ones that dramatically change your appearance, like cancer–is learning to accept your body as it is now, functioning and alive. It may continue to change with new treatments and surgeries, but the never-ending work toward body image redemption is an essential part of recovery.
I love having scars: they're proof of a battle fought and if you're looking at it, a battle won, if only temporarily. They are something to point to, something to indicate survival. The red slash across my throat says "this marks the spot where the cancer was removed," and I like being able to tilt my head up and say "here," when I'm asked where my cancer was located.
This week, I'm covered in bruises and marks, and my face is red and bloated from high doses of prednisone. My legs are a battlefield of tiny pink injection spots and the bruises that follow. I feel alien to myself, and frustrated that I can't control what's happening to me.
I can cut my hair, dye it black, and pick what I wear, but I can't fix the terror on the inside invading my skin, blurring the hard lines of my face. This is ugly, and no cool scar is going to change that.
This leads me to reclaim parts of my body that have been lost. This tattoo, as silly as I may find it now, is always commented on by nurses looking for a viable vein. It's mine; a drawing made by someone I paid to burn on me, on Haight Street in San Francisco, on a day when I felt wholly in control of my body and my self.
Tattoos are a choice, a strong lasting expression. I can't think of another way to better assert what little power I have over my own body. It is here, forever, a prettier parallel to the scars on my insides.
at 7:03 AM