Sunday, August 24, 2014

What Brain Cancer Looks Like

This is my mother. This is the face of brain cancer.

Beautiful, isn't she? 60 years old and secretary of a school she loved dearly with all her heart. 

With the ALS challenge, I've been watching a lot of videos. A lot of heartbreaking videos about what the disease does to people; does to families (and I encourage you to donate whatever you can at http://www.alsa.org/ - they have done a phenomenal job raising awarness and funds). 

My mom didn't have ALS - she had brain cancer. So before this post gets confusing, let me explain: watching these past few weeks what people go through with ALS made me think about the injustice that so many awful diseases present the world with today. Robbing good people of the opportunity to live long, healthy lives. And thus, reminded me of my mom's journey. I want to share with you the face of brain cancer, and how it changes over time. The picture above is what my mom looked like right before her brain cancer diagnosis in 2004.

This is her three months after.

 

Still smiling even when the rest of us couldn't. Lying in a hospital bed in our living room. Diagnosed in mid-April 2004; told on July 3, 2004 that she had days, maybe a couple weeks, left to live.

I remember when the next photo was taken; right after Mom had been given those three days or so to live. I was sitting there and every second that ticked by, all I could think was "That's one less second with her now." Brain cancer isn't the only disease, sadly, where families go through moments - or months - like this; wondering what tomorrow will be like or how much time is left.


The cancer robbed her of her hair; the steroids added on weight. Her physical appearance changed so much. What didn't change was that infectious smile. Even in the hardest moments, she smiled and pushed on and crushed any of the survival numbers the doctors uttered. Three days turned to three weeks turned to three months turned to 13 months. Friends and family visited and she began sitting up again, battling back.



She was surrounded by love. All of us were surrounded by love. The pictures below show how she changed over the months. Her skin became fragile from the medications and she bruised so easily. Her hair grew back in tufts - curly tufts. She lost use of her right side. She stopped saying more than a word or so at a time, and most of the time, it didn't make sense. 

But she pushed on, and that's why I share these pictures. I don't want the year she fought to be hidden. I don't want her bravery and her gusto to be forgotten. I don't want to erase the days where family and friends reminded us how good people can be and how loved someone can feel. She didn't fight for herself; she fought for all of us. And hopefully, someday, someone will find a cure and the timeline photos of brain cancer warriors will all look like their "before" photos.







I even took a picture towards the end where mom was smiling - the last time she smiled at us. (I'm not posting that though; I want that photo to stay something special.) She was beginning to really sleep more and had stopped talking, and this particular day she started smiling again. I wanted to capture that smile once more because I wanted to remember that even in the worst of times, mom was a fighter.

Love and miss you, Mom. Sending a hug to all the warriors and caregivers of all diseases, and those who are missing their loved ones.

Wednesday, August 20, 2014

Favorite scenes of parenting...

Each night as I walk around and sneak in the kids' rooms for one last kiss goodnight and to drop off toys that littered the floor moments before, I try and take a peek at what they did in their rooms in that half hour before bed.

What I find are usually some of my favorite sights (well, minus when there is food or juice snuck in there). I love to see how their minds work and what they've created with the oodles of toys they are lucky to have.

So instead of being angry at the messes next time, I challenge you to take a look around and see not the dolls littering the floor, but the creativity that brought them to life earlier that day, or what is most important to them in the vast array of toys. I promise you, the smile will be worth it.

I love that she tucks barbie in with whatever she can find to make a blanket - in this case, a leg warmer. She loves playing "mom" and taking care of all her dolls.

This doll was actually my mom's. I adore how she puts all the jewelry on and really dresses them up! 

This is how I know which Lego's are his favorite - they earn a space on an out-of-reach shelf.

And of course, he washes and rearranges his trophies often. 

He collected these vinylmations on our trip to Disney. He adores them.


He learned this from me. Dart stick to televisions. And it makes a fun game to try and launch them at people on the screen... 

An army of Skylanders, arranged in order from smallest to biggest. 

Impromptu summer math equations, done on a sticky note stuck to the headboard. The kid loves school. He's soooo my child.

It's a party of Squinkies and Playmobil and Little Pet Shop randomness! 

And, the one thing my daughter cannot live without - paper and crayons. This is a picture she's making for her first day of school, for her new teacher.

Tuesday, August 19, 2014

One Perfect Little Personality

I’d been in labor for thirteen hours already, the steady drip of Pitocin pushing my body to its limits. Induced at 6 p.m., I’d arrived at the hospital 42 weeks pregnant only to find that early labor had already started.

That sums up the personality of the daughter who would arrive just moments later. For 42 weeks I carried her, the last two filled with pleas for labor to begin so I could be done with pregnancy and move on to mommy-dom with my second born. Scheduling the induction was heaven for me; arriving to the hospital to find I had been in labor and not known it set the pace for a little girl who would continue doing what she wanted, when she wanted – and not when people told her to.

The doctor sat in the back of that birthing room filling out his paperwork as nurses darted around preparing. The contractions were awful (it is so true that you forget the pain until you go through it again), and knowing now from my first-born how labor felt, I recognized the urge to push.

“I feel like I need to push,” I said, my sleepy husband at my side and the doctor still calmly filling out papers in the corner of the room.

“Go ahead,” he said, looking up in his clean, blue scrubs. “Nothing will happen for a while.”

I hated his words because I was sure they were true. My previous labor had gone on forever. Three and a half hours of pushing alone to bring my baby boy into the world. I had resigned myself early to the notion that I would be going through the same process again, but the doctor’s reassurance made the already angry, sleep-deprived and sore pregnant woman slightly more hostile – and determined.

I buckled down and gave the strongest push I could with my husband holding one hand and a nurse the other.

“The head is crowing,” someone called, and the doctor jolted up from his busy work and darted towards the bed.

“Stop pushing!” he said as nurses tried to dress him for childbirth. They got the gown on him while they fumbled with the gloves. Two fingers in one space and none in another, he had to try again to get them on and get ready, all while continuing to tell me to not push.

Telling a pregnant, miserable, in labor woman to “not push” did not go over well.

“What do you mean don’t push?” I yelled back. (Yes, yelled.)

“Don’t push yet,” he replied, still getting ready.

“I can’t stop,” I screamed. “No way I’m going to stop! Nurses deliver babies all the time! Somebody better get a catcher’s mitt and get down there because this baby is coming!”

Half ready, the doctor managed to catch her on her way out with my third – and final – push. They immediately placed her on my chest and I relished in the sight of the dark, curly haired peanut crying out about her sudden eviction. I took in every centimeter of this daughter I’d dreamed about having since I was a little girl.

Her feet were huge just like mine, and she had my dad’s beak lips (they come to a little point in the middle and look like a beak from the side). The rest of her was all daddy. She had long fingers – much longer than I’d seen on other babies – and her long, monkey toes the same. Her dark curls rivaled daddy’s hair, and the fur covering her ears and back, well, let’s just say that wasn’t from me!


I kept thinking of the phrase my mom had uttered so many times while I was growing up, before she passed away three years before my daughter was born. “I hope you have a daughter someday who is just like you!”
How sweet, you say, right? That’s not how she intended it. She said it each time I mouthed off or threw a fit or refused to clean my room. (I heard it a lot.) She always smiled as she said it, though, but I knew what she meant.

It wasn’t long before I came to see that mom’s wish had come true. Now, I love my little girl with all of my heart. She is sweet, beautiful, funny, snuggly, and smarter than I give her credit for. Then there’s her stubbornness, sneakiness, whininess that drives me crazy – and which I still love. She is the daughter my mom wished me to have, and the master copy at that! She has a strong head on her shoulders and while her obstinacy drives me absolutely bonkers at times, I also admire it because I hope that she will be a leader instead of a follower in life.

Like the day she was born, she proves time and again that she will accomplish what she wants to – like when she comes into the world – when she’s good and ready.

She first walked at eight and a half months. Well, that’s not completely honest. She took her first steps at eight months and was full-out walking by eight and a half months. I didn’t want her to walk that early. I wanted her to stay a baby for a little while longer, since she would be our last. No such luck – she wanted to be on the go!

When she was about two, she wasn’t saying words at all. She’d said some in the past but became suddenly silent and we worried that something might be wrong. I called the doctors, talked about specialists, set up the appointments… and a few days before, she began to talk. A few single words followed quickly by words put together, because she was ready to and not because we wanted her to.

And now she never stops talking. Ever.  (Just ask her teachers. And her daycare provider. And her grandparents. And anyone passing by on the street.)

Potty training was an adventure. Her brother learned right after he turned three but everyone kept telling me that girls learn earlier and I should start trying. Oh, how she and I battled for the first six months after she turned two! It was a constant struggle with no success. She knew when she had to go and would stand there and make a smiling face like, yeah, I know what I’m doing and you can’t stop me. I gave up around two and a half years old, figuring I’d just wait it out.

A few weeks later, at a friend’s party, she looked at me and said, “Mommy, I need to go potty. I’m going to use the big potty.”

And she did. She never had a potty accident, even at night, from that first potty success on, because she had decided it was time.

She’s five now and will start kindergarten next week and I’m worried about her numbers and letters and reading. Her brother loved learning, loved reading, loved writing. She loves coloring as long as she doesn’t have to learn anything while doing it. (Isn’t it amazing how two kids can be so completely different?)

Recently, she started asking us how to spell things because she is not quite ready to sound things out, but she memorizes the words we spell out for her. I watched her write I watched her write “I love Mom” the other day on a piece of paper and reminded myself, silently of course, that she will accomplish everything she wants to accomplish in life when she’s ready, and not a second before. Including reading and writing.

And that’s what I love most about her. Keep doing what you’re doing, baby girl, and I will try my hardest to remember that you will when the time is right, because I always know you can.

Love,
Your #1 Fan

Monday, August 18, 2014

The Silver Lining

Written for WriteOn (Writing Group) in February 2014

Everything happens for a reason, or so I’ve continually been told by movies, books, family, and friends. I find it hard to believe that we have finally arrived at this moment in time. Three months ago life continued on without so much as a speed bump in sight; it seems as though the road blocks, however, are now being built faster than we can finagle our way through them.
For twenty-five years you’ve watched me grow and stumble through life lessons, mistakes and their timely consequences, and romantic triumphs and heartache. You’ve listened intently to the depths of my heart, guiding me just enough to help me while forcing me to formulate a path I can pave with my own decisions. You’ve observed me playing dress up in an oversized gown with a garage-sale tiara on my head as I walked down a makeshift blanket aisle towards my favorite stuffed bear, and struggling through life lessons that I thought to be the lowest of the lows.
Right now, I want to smile. We’ve been dreaming of this day, Mom.
I’ve looked to you my entire life for guidance on avoiding apocalyptic romances and now I have found someone that both of us trust will treat me as you’d expect a man to treat your little girl. He may need a little time to really get used to the idea painted across the pages I hold within my hands, but he’s given me the go-ahead to peruse these magazines with you.
I flip the page of the first wedding publication and we laugh at the hideousness of the pink bridal garb crowding the page. Hideous couldn’t begin to explain the layers of ruffled, cotton candy pink taffeta. Knowing we have the same tastes thickens the bond tying us together. Years ago, I would have revolted at the thought of sharing my mother’s ideals and visions; now, I find that time is passing by far too quickly and I worry that I’ll never discover all of the idiosyncrasies we have in common.
Your fingers slowly move across a simple white gown, very similar to the one I wore to my senior prom. Do you remember that dress, I wonder? The beaded gloriousness of that wedding dress – yes, wedding dress – the clerk brought out from the back proved too much for us to send away. In vain we made excuses for why I couldn’t wear it and why we couldn’t spend that much. Though we tried to convince ourselves any of the plethora of other gowns would suffice, our eyes drifted back again to that first dress. This was only prom after all, we reasoned. Not to mention the bold, black numerals that reminded us just of the expensive elegance of such a gown.
Dad’s wallet may not have agreed with us but you bought it for me anyway. You couldn’t help yourself, you’d said, because I’d always worn the discount dresses for every other event. I felt every bit the center of a fairytale as I stepped out of the limo on prom night.
I’ve dated a range of men in the last decade, Mom. You’ve only been fans of two, the only two worth mentioning. The first – that teenage boy whisking me off my feet to prom – and the last, the man who will carry me across the threshold in the dress we pick out from these fresh, well-designed pages.
Neither of us says the thought aloud, yet I know we’re both thinking the same thing as I dog-ear page twenty-nine. A few years ago, neither of us would have picked out a dress for such an important occasion from a magazine. We would have made the rounds, feverishly trying on every type of fabric and style for the season.
We carefully study each sheet of the magazine, pointing and choosing as I make notes in the margins. I find that we are both at a loss for words. This moment is too big; too epic to belittle with imageries like beautiful and classic. We’ve practiced picking out this dress my entire life during annual trips to out-of-state malls with our closest girlfriends, scouring shelves and racks for the best in bargains and splendor. We were made for this shopping excursion and yet we’ve decided upon the comfort of home for such a major decision.
I remember your face that morning seven years prior as I stepped out of my room in that prom gown. Happiness lit up your face, dwarfing the smile on your lips. Your hand reached up to my face and you gave me a kiss, choking back tears as they fought to escape your radiating blue eyes. I imagine you’d look the same at my wedding and I’m making a futile effort to fight back my own tears as I recollect.
Do you understand how much that dress for prom meant to me? Will you understand how much the dress we are choosing for my wedding will mean to me in the not-so-distant future? Do you know how important your input is and how much I want to absorb every suggestion you make so that in time, I can make these vital choices on my own?
Your hand covers mine because I’m sure you can sense my anxiety. One look at you confirms my suspicions and I lose control of my emotion, letting the tears break through the barrier I’ve been building for the last three months.
You don’t utter a word, and haven’t in some time. This isn’t because you don’t care enough to speak; it’s because you can’t. The brain cancer has robbed you of that ability, along with the opportunity to plan my wedding together.
We both know the turning of these pages won’t make time stand still. Finding a gown won’t bring my wedding any closer. We also both know that the day will come – in a few days or perhaps weeks at most, we’ve been told – when the only part of you I’ll have for wedding planning is a few dog-eared magazine pages and some notes in blue pen dotting the margins along with the savored memories we are now making.
You won’t be here for my wedding or for the birth of your grandson, which neither of us know yet will happen a little more than a year later. You won’t help me get dressed in that amazing, poofy wedding gown with the corset back and the gathers all over the bottom like Belle’s dress in Beauty and the Beast – the dress that has always been my ideal of dress perfection. You won’t be there to close the clasp on the white gold locket you bought me two Christmases ago, and which I already know I will wear on my big day. And you will not be there to entertain the cutest little ring bearer; the one who will share a middle name with his grandma though he will never experience her love firsthand.
While we both shed our tears, we lean back in that cold, mechanical hospital bed situated in the middle of a living room you’d painstakingly remodeled such a short time before. A room once exploding with joyous family parties now sits captive to a more sullen audience as guests filter in and out daily to whisper their goodbyes in between our brief moments of respite. As you rest next to me with your bald head and bruised skin, I feel you wrap your arms around me.
You’re the one dying and you’re comforting me.
As the sound of tears and sighs fill the otherwise empty room, I hope that your mind has drifted to the same place mine has: that peaceful morning spent getting ready for prom. I hope you’re remembering our trip to pick out that dress. I hope you’re reminiscing on a morning spent with hair, makeup and nails as we prepared for the day ahead.
I hope you’re also starting to believe that things happen for a reason, because I am. Otherwise I have to wonder why, after years of selecting formal dresses from a clearance rack, we found and purchased a $400 wedding dress for my prom, almost as though it was simply meant to be.
We had a practice wedding day together, Mom. Maybe not the way we want it, but the way it had to happen in our fairytale. Seven years, a full head of your hair, and about four dress sizes earlier.

Friday, August 15, 2014

Football=No. Because Mom Says So.

For a laugh -- my son keeps asking to play football. I like football (in particular, the New Orleans Saints). I even have fun playing in the backyard. But the mama in me fears my little guy who is on the tiny side going out to play "real" football (not the flag kind, he insists) and getting smushed! I keep saying no, and he keeps coming back. Last night when he asked, I said no because football is dangerous. Then, he replied "Not any more than eating your cooking." Touché kid, touché. Here is tonight's reasoning as to why he should get to play football:


An Angel in the Clouds

My daughter looked up at the sky the other day and noticed a cloud that stood out among the others.

"Mommy, see that cloud? It's an angel. It's Grandma Bailey."

These moments bring a smile followed quickly by my holding back tears. I love that she talks about her grandmother - my mother -  but my heart aches that she will never truly know this beautiful woman. I regale both kids with stories about her. There was the time I pledged the hardwood floor and she slid along it. There were all the nights she told me her made-up bedtime stories that I cherished. There were the days and nights spent bundled up and watching whatever athletic activity I had going on.

She was my heart and soul. Ten years ago, I suffered a break up no boy or relationship could rival. I lost her to brain cancer. 

I remember the days of crying over first loves and bad dates as she comforted me during what I thought were the worst times that could ever find their way into my life. (Those were the days, right? When break-ups were the worst part of daily living!) Then when that moment - truly, the worst moment of my life - found its way into the depths of my heart, the one person I needed comfort from was gone. 

I think about this a lot now, mostly because of my babies and the one year anniversary of my friend Katie's passing. The kids know Katie was my age. They're starting to ask questions. What did Grandma die from? How did Katie die? Could mommy get that? Could mommy die before she's old?

Me (left) and Katie (right) back in 1997.

The woman I'd usually run to for answers to such difficult questions is no longer here to answer them and I'm forced to be a grownup (even though at 34, in these moments I don't want to be). The answers to all those questions are yes; but I would never want to put that idea into their head. I would rather they worry about what's for dinner or whether soccer practice is still on. I assure them that this is why we eat healthy and exercise and go to the doctor when we're supposed to; so that mommy can be here a very long time with them.

It's funny how quickly life changes. At twenty, we feel invincible, like nothing can happen to us. I know I did. I know I wasn't always as kind to people as I should have been and I broke rules I shouldn't have broken. I put myself in situations that I cringe thinking my children would put themselves in someday. (Now I totally understand why Mom always waited up for me. She probably did the same stupid things and hoped I would be better. Oops.) And I learned a great many lessons about life that I wish I'd learned in much different ways because those lessons have a lasting impact.

We don't know what life will bring. I certainly didn't wake up that August day last year expecting a call that my 33-year-old friend had passed away. A friend who had, just months before, designed the beautiful cover of the book I put together with other brain cancer caregivers about our journeys (you can see the cover here). A friend with whom I'd been meaning to make dinner plans to catch up with, but we always had to reschedule because of life. A friend who I'd lost touch with for many years, after being best friends through college, and had just begun to reconnect with.

As I sunk down the wall in my kitchen after hearing her sister's broken-hearted voice tremble on the other line to say the unthinkable, I again felt that heartbreak that comes with such a loss - as did those who knew her. I reconnected with old high school friends and reminisced about the good old days in the weeks after Katie's passing, and then went on with life. Just like with mom, I found myself not talking about Katie much because it can be uncomfortable to bring the topic up with those who knew her. And talking about it to people who didn't (like my husband, even though he is so kind-hearted) just isn't the same. I wanted someone who could remember our silly stories, crazy movie marathons, love of cheese popcorn and Ace Ventura, and driving in her convertible with the top down. But at the same time I didn't want to talk about it, because it was a reminder of just how fragile life is.

I write this because this is the time of year when life changes in our household. We get caught up in school and work and activities and running everyone around from this practice to that one. We rush through dinners and fall asleep in front of the television and go through the days instead of actually live them. We chat with friends when we find a spare second. We - well, at least me - only stop to think about how we can live life differently when, sadly, a phone call comes that shatters the invisible peace surrounding us. And after awhile, when the memory has been pushed aside for brighter things, we go back to going through the motions and forgetting to live in the moment.

Moments like those where you're rushing from picking up kid 1 and rushing kid 2 to something, and your daughter notices a cloud that looks like an angel.

An angel that reminds you just how fleeting life can be, and to take advantage of every moment and opportunity to show people how important they are to you.

Tuesday, August 5, 2014

Most. Fun. Photoshoot. Ever.

In our house, we don't take normal family photos. Ever. Most people dress up. I tell the kids to pick out their favorite outfit and accessories. This usually results in jeans or athletic shorts for my son and a Minecraft or video game related t-shirt. For my daughter, it's usually a skirt, leggings, mismatched shirt, five necklaces, four bracelets, three hairbows and a purse. For my husband, well, he dresses nice all the time so he is usually putting us to shame ;)  But that's the joy of our family photos - I have these images that capture who we are at that particular point in time. We aren't the family that is color-coordinated and put together all the time. We are discombobulated and goofy and lucky if we have matching shoes - so that's what our photos should reflect!

So this year, we did a superguy theme, as that is our current living room decor. My plan is to print out two of the photos and put them in 8x10 frames, and then if scroll all the way down, we are going to make several movie posters for the living room! My plan is to print them out poster size, modpodge to a piece of wood and sand the edges for a vintage look. I will post that when I actually set aside the time to do it! 

Couple notes: I took the photos myself (with the help of a tripod and a son who can run really fast), and added a grainy look to them so they look older. The clouds are natural - that's why I rushed home from work one night and forced everyone to pull out their favorite superhero gear and head a half hour out into the cornfields! And finally, on the posters, I blurred all the names (including my very clever piece on the bottom where I used friends and family as the producers, directors, etc.). But you get the point.










POSTERS





 



 



 




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