I know where you are

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One day about a week ago, we were driving in the car when I yelled, "Oh shoot!"

Hubby pressed his imaginary passenger side brake and looked frantically from side to side expecting an oncoming disaster. "What is it?!"

"We forgot to go to the cemetery on Memorial Day," I said forlornly.

"Oh," he said, with a mixture of relief and sadness.

It's been seven years since we lost our sweet Joey to the cancer beast. Seven years of missing him and wishing he were here. Seven years that his brother has made his way through the halls of school without his twin. Seven years that his brothers have had one less big brother to look up to.

For seven years we have ceremoniously honored and marked each important day in his short life - his diagnosis day, his birthday, and his crapiversary. Masses in his name, visits to the cemetery, meals of his favorite foods, and the wearing of his favorite color.

For seven years I have been writing and posting on Facebook, each year trying to find more eloquent words to honor and grieve this amazing child.

Until this year.

This year, I realized a little too late that I didn't have masses set up on his days. I found out that those days weren't available, so I had to take different days.

This year, we were swimming at our new pool with our cousins on Memorial Day instead of visiting his grave.

This year, no one went to his crapiversary mass except me. And Grandma and Papa, but somehow we didn't even see each other there.

And this year, on June 10th, we spent the entire day on the couch because three out of the six of us were sick with a tummy bug, instead of eating Cheetos and hot dogs and pink lemonade.

And we still didn't go to the cemetery.

What is the expiration date on grief? Is it somewhere between 7 years and 70 years? What is the time limit on thinking about someone 24/7/365?

And when did we stop thinking about him constantly?

One of the crappy things about grief is the guilt that comes with it. The guilt that you're not missing your loved one enough. You're not doing enough to honor him. You're not missing him ENOUGH.

But one of the things that you learn from grieving is that life must go on. Your life is going on. And you have to let it.

You have to allow your life to continue. Without being mired by grief, without being slowed by sadness, without being delayed by guilt.

I make no secret about the fact that I don't enjoy going to the cemetery. To me, the cemetery epitomizes what cancer left us - a fat, rotting shell that had no resemblance to the charming boy it encased.

When I feel that guilt about not visiting Joey's grave creep up on me and close its cold, bony fingers around my throat and slip a hot knife into my heart, Joey reminds me of something: he's not there.

Our sweet boy does not lie in the cemetery - he walks with us every day.

He's in the smooth, flat, shiny Joey rocks that Edgie and I find. Like diamonds in the rough, they catch our eye, and we have to pick them up.

He's at the baseball field - where we find many of our Joey rocks - cheering his brothers on in a sport he loved.

He's in his brother, Slim, who has become an amazing helper and babysitter.

He's in the pennies and the dozens of other interesting things his grandma finds on her walks with his Papa.

He's in the rainbows we see, the Stripey Kittens we spot so often, and the gorgeous sunsets we watch over the fire pit in our backyard.

I know where he is. He's in all of our moments, never far from our hearts and our minds.

He's right where he's supposed to be.

Over time, we've started thinking less and living more; and I'm pretty sure that that is how grief is supposed to go.

We don't need symbols or ceremony or obligatory visits.

We just need to live our lives and know that he is in each sad, lonely, wonderful, happy moment right there with us.

Dear Grieving Parent: It's your story to tell

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At the boys' tennis lesson the other morning, I met a lovely couple: a grandma and grandpa who were staying with their grandsons and helping babysit for the summer. We talked throughout the lesson, and I really enjoyed the conversation with them.

At one point they remarked on the size difference between Slim, my twelve-year-old, and Knox, my ten-year-old. Knox is a big boy for sure and Slim smaller than average, but I couldn't help mentioning that Slim is also a twin.

And then it begun - how his brother got cancer and died (it was a brain tumor), how we discovered one morning that he was having a seizure, that he lived for a year after that (but he still went to kindergarten until he was too sick), how I was forty years old and was done with babies but had another one (who reminds me of Joey, by the way), and how the kids at Slim's school are nice to him because they know his brother died.

And on and on and on.

I've always been a good listener. Or maybe just too polite to tell people to bug off. As a result, I often get cornered into listening to total strangers tell me their life story.

Now I am that total stranger telling someone my life story. 

Joey's story.

It's been six years since Joey died. We've been without him almost as long as we were with him, and not a day goes by that I don't think about him or say his name aloud.

Still.

Always.

Because missing someone never goes away. It never gets better or easier. It never becomes routine. You never forget to do it. You never have to remind yourself to do it.

It's just always there.

The ache in your heart is ever present. It tells you that a part of you is missing, that you will never again be complete. Sometimes you can hush it like a baby; but like a baby, it will just start crying for attention once again.

Your grief is a part of you now. It becomes a story from your life. It's certainly not the only story you have, but it is your story to tell.

Or not to tell.

There are times when people remark to me about my four sons: "You have four boys?! You must have your hands full." And I choose not to tell the story.

But it hurts my heart.

It hurts my heart because I want to scream, "I HAVE FIVE BOYS. FIVE." But only because I so desperately want that fifth boy to be tagging along behind us, helping his brother at the soda fountain at Costco, or offering to push the cart and unload the groceries for me.

I want to see that smile that radiates from his eyes and hear that laugh that's contagious and feel that hug that warms every part of my body.

But I can't.

So I talk about him. I tell his story.

I talk about who he was and what happened to him, not because I want to make you sad or feel your pity; but because it is my way of letting that grief have a voice. It is my way of never forgetting how I felt and still feel.

It is my way of honoring his short life.

I will always talk about him, because his is my story to tell.

I'm sorry if it makes you uncomfortable,

or sad,

or angry,

or scared,

or annoyed.

I get it, I do. It makes me all of those things, too.


But I feel grateful when you indulge me, when you listen to my story, when I can see in your eyes and your heart that you are really listening.

Even if it's the 75th time you've heard my story.

If you are a grieving parent reading this, I want you to know that I will always listen to your story. The first time or the 101st time. It's your story to tell.

Or not tell.

If it's safe in your heart and it feels right there, that's okay, too.

But if you need to let it out, there are those of us who are listening.

Now, and 839 times from now.



Because it's our story to tell. 

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You might also want to read some of my other stories about loving and missing Joey:

When Party Games Go Horribly Wrong

Not Broken, Just Bent

Remembering Joey: What I Loved About My Son

My Dear Sweet Joey

Unhappy Crapiversary

Before the After (A Portrait of a Child Before Pediatric Cancer)

One of the MANY things that bothers me so much about Joey's cancer is that hardly anyone knew him before. Before the dreaded after.

Our family knew him, his preschool teachers knew him, and a few of my friends knew him.

But his life was just getting started before it came to the tragic end it did. Now people just know him as "Joey, the kindergartner with cancer." The bloated-from-steroids, goofy-hair-from chemo little boy who always carried Stripey Kitten and slept a lot in the nurse's office at school. Sweet but weak, with a sense of humor that would repeat itself frequently.

"Kathy's son who died." "Our brother who died." "That little kindergarten boy who died."

The thing about Joey was that he was so special. He was going to be so great in his life. I know every mom thinks that about her child, but there was something about Joey that just radiated uniqueness and joy. I'm going to try hard to explain it to you by telling you a few stories and introducing you to the Joey Before the After.

The Baby Joey

He was Baby A in my twin pregnancy, and he took this position seriously. He occupied more than his fair share of space in my already crowded uterus. So much so that we could never get a clear picture of Baby B, Slim. Once he vacated the premises, Slim finally found all the room he needed, stretched out, and waited three hours before he was forced to vacate as well.

As a baby, Joey was busy and active and always smiling. He was roly-poly and fat and played with toys like it was a paying job, a job at which he over-achieved. One of his brothers' favorite stories about his baby days is a story of when I was changing his diaper. I had his little legs up in the air to wipe his bottom, and out came some more poop, shooting across the room. Telling this story in a houseful of boys never gets old.

Another favorite story of Hubby's and mine is about the time Joey escaped from his crib. He had these huge block feet that were great for climbing. Hubby and I were watching t.v. one night in the living room when we heard a thump, then the distinct sound of feet running. Down the hall came Joey, a huge mischievous grin on his face. The smile said it all: I knew I wasn't supposed to do that, but I did and I just wanted you to see that I did. He didn't escape from bed again. He didn't have to, he'd already accomplished that goal.

The Toddler Joey

As soon as Joey was about three, he loved to be outside. He was always willing to help Hubby with gardening or carrying something to another spot in the yard. He loved watering plants and riding his bike and digging in rocks and jumping in leaves. He thought of games to play outside and got his two younger brothers to join in. If he had to be inside, he was playing a board game or doing a puzzle. He would be playing with our train set or dancing to silly music.

He was always the leader, always in the middle of the three. As each new baby was born, he wanted in on the action. He knew that baby was getting the attention, so he jumped in to get some of the limelight for himself. He taught Knox how to crawl, and made Lil' C feel like the most important baby of all time. He helped feed and play with the babies and brought them toys when they were crying.

Our favorite Joey toddler story occurred when Knox was about a year and a half and Joey was about three. It was a hot July night, and we made the backyard slide into a water slide. Knox's diaper had become so heavy with water that he just stripped it off and was sliding down the slide naked. Joey thought that looked like fun, so he stripped off his bathing suit and was going "au naturel" as well. He always had to be part of the fun. He loved to laugh, and his laugh was infectious. He was simply FUN with a capital F to be around.

Always the same smile that showed all his teeth. 

Preschool Joey

Preschool Joey didn't cry or cling to me on the first day of school. He ran right in the building and never looked back. He loved to paint and read and sing. He loved that his wonderful preschool teacher did science with the kids by planting an herb garden. He loved cultivating his plants. And he loved the puzzles and dress up and games of preschool. He wanted to play every sport, try every daring thing he saw. He had courage to spare. He was a mama's boy, but he never clinged to me in fear.

At home, he loved dressing up in my shoes and make-up and hats. He always had a hat on. He loved old Halloween costumes and seeing how many of my bracelets and hair clips he could get on himself. And he drug his brothers into this dress-up as well. His imagination was limitless and his concentration fierce. He was always something unique for Halloween, whether it was The Man with the Yellow Hat from Curious George to a life-sized version of Stripey Kitten. He always thought of his own costume. Hubby and I have always wondered about the things he would have been able to do had he not "had a head full of tumor."

Do you see a pattern here? Joey LOVED LIFE. Every single thing about it. Many moms are bored at home with their children. I was never bored a day in my life when Joey was in it. He made me truly happy. I'm sure I had some frustrating mom moments, but I can't say he was ever a challenge to me.


Of course, that all changed shortly after his headaches started sometime after his fifth birthday.

After that, he was a different person with some hints of the old Joey.

Five years was all we got of this incredible human being. Five years' worth of memories and giggles and crazy ideas that we cling to in a desperate attempt not to lose them.

I will - and do - talk about Joey all the time. I will never stop talking about him. Even if it makes you uncomfortable, I will still talk about him. He is a part of me and will never not be a part of me. Gone are the days that we leave rooms untouched and don't speak our loved one's names. It hurts at times to remember what a vibrant life force he was; but most of the time it brings me comfort and cements the memories that I have of him firmly in my mind so that they don't get lost; which some of them have, sadly.

One of the best things you can do for a grieving family is to talk about their loved one. Before the after. Ask what their child was like. Listen to their birth story. Listen to silly toddler stories. Laugh and cry and hug and honor. Here is a beautiful post from another grieving mom that encourages you to talk about your own and others' children who have passed.

We know it's hard, but we love you for trying.

#thisischildhoodcancer
Stay with me all month long as I talk about ways you can help families of children who are battling this horribly unfair disease or who have lost their lives to it. Stay with me as I honor them alongside our precious Joey.

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Dear Mom, You Will Find Grace

Hail Mary, full of grace . . .


I say this prayer almost nightly, yet I never really thought about what grace actually is; that is, until people kept telling me I had it.

I’d never thought of myself as having grace. Yet when my son Joey was battling terminal cancer at the age of five, people’s favorite thing to tell me was that I was handling it all with grace.

I was taken aback at first. How does one handle the imminent death of her child with grace? Is that even possible?

If it meant not crying in public, I was handling it with grace.

If it meant crafting words that made other people feel better about a child’s death sentence, I was handling it with grace.

If it meant not curling up in a ball and rocking in the corner, I was handling it with grace.

I really had no other choice but to handle it with grace.

And you would, too.


Here's the kicker though: do you know what grace actually is? In Christian terms it is "the free and unmerited favor of God, as manifested in the salvation of sinners and the bestowal of blessings."

Being told that your child will die of cancer is the exact opposite of this. I was sure I was being punished for some past life sin, or a sin in this life. I definitely wasn't being blessed with anything.

So why did people say this thing about me? This thing about grace? What exactly did they mean?

I took it as a compliment anyway, a life jacket that buoyed me up above the dark water in which I was drowning. Would my son's death be so bad if I could just manage to handle it with grace?

Regardless of how I was going to handle it or not - head held high, writing words to make cancer sound graceful, or leaving rooms to cry and shake my fists at God - it was going to happen anyway.

I didn't cry at his funeral. Not during the service and not when mourners cried in front of me.

Grace.

Maybe God did do me a favor by giving me some sort of courage I could summon. After all, according to Ernest Hemingway, maybe I always had grace; and once pushed to the limit, it became courage.

Honestly, I'm still not sure what grace really is. I think it looks different to every person who sees it. You see, I've come to realize that grace isn't something that is strived for and perfected. Rather, it is something that comes to you when it’s needed the most.

As women and moms, there are definitely times when grace eludes us.

The day of major screw-ups on our job when all we could manage to do was hide in the bathroom and have a good cry before attempting to fix anything.

The times in the grocery store when we are hauling our entire brood of kids on an epic trip to buy a week’s worth of food and toiletries; and after an hour of whining and begging and continuously searching for our lost toddler in the aisle we just left, WE have a meltdown. Grace definitely eludes us.

And you know what? That’s okay.

Because grace even comes in the form of knowing when we've blown it, blown up, and blown our tops. Knowing that we've been human and made a poor choice is a form of grace, too. Don't kid yourself about that.

Its easy for us to look at someone else and how they are managing a situation that seems hard and say, “Wow, she’s rocking it. She’s handling it with such grace.”

But what grace looks like to you is not always what grace looks like to me.

And how you handle a tough situation is only known when you are facing it. Right in the thick of the crappiest thing you have ever had to face, you will find grace. 

Even if you have to pull it from the depths of someplace you never knew existed, even if you have to do things you never thought you'd have to do, and ask people for things you promised yourself you never would, you will find grace. 

You will find grace when you need it the most.

Not necessarily when you are at the store with a spit-up stain on your shirt and a Hello Kitty sticker on your butt and your toddler is pulling every can off the shelf in aisle 3 and you think EVERYONE is looking at you (newsflash: they're really not).

But during the super important times.

The first time out with your new baby.

The first day of kindergarten.

The last day of high school.

The first broken heart.

The family crisis they can't know about just yet.

The diagnosis that you didn't see coming.

Grace will find you and buoy you up in it's soft embrace. 

And they'll say of you, You are handling this with such grace. I never could. 

And you will smile knowingly and say, Yes you could. 

I promise you, if I could find grace, so can you.

Just when you need it the most.

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Things we'll never know because our brother is gone

"I love this green blanket, Mommy," Lil' C says as he snuggles deeper under his covers and into my side.

"That was Joey's blanket," I say and see his eyes widen, a smile curling on his lips. "He would be happy that you are enjoying it."

Wait a minute. No, he wouldn't. He would want it back. If he were here, he would demand that blanket be back on HIS bed.

If he were here.

But he's not, so we'll never know.

I say things all the time about what Joey would be doing or thinking, but the thing is - I can't say with certainty what he would be doing or thinking.

I think this is every grieving parent's cross to bear. The what-ifs. What would life be like if he were here? Who would her friends be? What kind of grades would he be getting in school? What kinds of activities would she like?

How would our family be different? 

Of course there is absolutely no point in mulling it over because we'll never know. We weren't meant to know.

All we have are assumptions and guesses and conjecture based on what life WAS like. On what he WAS like when he was here.

So when I see Knox holding Edgie's hand and running through the water park with him, I smile and think how the three of them would be such pals.

Then I stop and think, maybe Joey and Knox would go off by themselves and ignore their other brothers.

When my chest swells with happiness during Slim's birthday party when all of the friends from school he invited show up and are so nice to him, I think about the parties that he and Joey could have had together.

Then I stop and think about how, even at a year old, they were so different with such different interests.

When I tell Lil' C that Joey would be the best big brother ever and would be so proud of him for learning to ride his bike and for having lost his first tooth, I stop short.

Maybe Joey would have glossed over these accomplishments just like the other brothers did.

When Hubby and I talk about how much happier and more active Knox would be if Joey were here, I don't know if that would necessarily be true.

I don't know these things. I can't say for sure.

Joey was always smiling and happy and busy and wanted to try everything. But, he had only just turned five. I know a lot of five-year-olds that fit that description. What made Joey special? How do I know what he would have become?

The thing is - I don't. I won't ever know.

But undoubtedly the best thing about the things we'll never know is that we can make them whatever we want.

We can make Joey a generous blanket sharer.

He can be the most attentive and supportive brother.

He can be the best player of games and thinker of ideas.

He could even grow up to be the animal rescuer that the four-year-old Joey thought he would be.

There will always be a hole in our hearts left by his death, and the what-ifs will always be bitter.

But because he is gone, the things we'll never know will also never hurt us. I can make sure the things we'll never know will do nothing but comfort the brothers he left behind.

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Closing Time: One Last Call for Memories

We finally had a closing date. It was to be the day after Christmas. I panicked and scrambled to complete all the packing I had been putting off until we had a firm date. Hubby would have had me just throw things in boxes, but my organized brain had to pick through and categorize every item. My sentimental heart had to pause, remember, and reminisce.

Since most everything was packed up, we did something different and ate dinner out on Christmas Eve. We chose an Italian restaurant, and I was surprised by how many patrons were there. It was just the six of us at our table, and I wanted to make it special even if we weren't technically in our own house for our last Christmas Eve. I smiled and tried to engage the boys in games of Tic Tac Toe while we waited for our food, and I ignored their continued whines that it was taking too long.

"Let's talk about our favorite memories of our house," I suggested.

"When Baby E came home from the hospital," began Knox. That surprised me, but made me puff my chest in pride. Joey was always so happy when the new babies came home, too.

Edgie (formerly Baby E) added, "Snow sledding in the front yard!" That was a memory that involved Knox as well. He would pull Edgie down the small slope in our front yard and end up in our neighbor's driveway.

Slim offered this funny nugget: "When I used to run in circles around the house!" Our stairway was in the center of the house, and every morning Slim would run down the stairs and make several laps down the hallway, through the kitchen, through the dining room, and through the living room. Honestly, that was kind of my first indication that something about him was a little different. But, since I can't remember the last time he did that, it's really a marker for how far he's come developmentally.

Lil' C's memory surprised me and made me giggle: "I liked when Joey and Knox went down the waterslide in the backyard!" When Joey and Slim were three and Knox was a little over a year old, we made the slide into a water slide with the hose. Knox had decided to strip off his diaper and go down nakey. Joey, always wanting to be part of the fun, stripped off his clothes, too. Slim was operating the hose, and Hubby and I were sitting in lawn chairs crying from laughing so hard. It was just one of those moments you can't plan. And Lil' C? He was a seven-month-old fetus in my tummy. He has heard us tell that story so many times, I'm sure he feels like he was "there."


Dinner was nice, and once home I retrieved all the Santa presents out of their in-plain-sight hiding places (the moving boxes). Christmas day was a blur of wrapping paper and plastic ware on which we ate our traditional Christmas morning cinnamon rolls. Toys and last-minute "must be packed items" littered the house. Hubby's sister has people over every Christmas night, and I told Hubby to take the boys while I continued packing.

"Just come over," he implored. "Take a break. This will still be here in two hours (that's what I was afraid of). C'mon. It would mean so much to all your boys."

Usually, he doesn't care what I do; but I knew it meant something for me to be there. So I took a break and went. I'm lucky to have wonderful in-laws whom I truly enjoy. And a lot of them! We recruited lots of help for our move.

That night, into the wee hours of the morning, I was packing. My problem was the basement, and all of the things stored down there that no one really knew about but me. All of the boys' things I wanted to save. Pictures, cards, memories. Joey stuff. All last year I thought I would get it organized, but that never happened. I didn't want the movers to touch it. I sat in the basement amid the mountainous stacks of boxes and cried. Partly from exhaustion, partly from regret over my own disorganization, and partly because I was thinking of MY favorite memory of the house.

We used to have dance parties in the basement when all the boys were little. We would crank up some kiddie music - usually Raffi - and just dance and giggle until we all dropped exhausted on the floor. I could almost hear the music playing "Knees Up Mother Brown," which was Joey's favorite. I swore I could hear his giggles.

I always knew, even though Joey died in that house, there he did not remain. I spent the last year, though, scared that somehow we would be leaving him behind. The next day, as I walked through the empty house ready to follow the moving truck to our new one, I spoke aloud, "Joey, we're going now. You come with us, okay? You come with us. Don't stay here. We're going."

In a flurry, I was telling people where to put things, what boxes to unpack, which ones to leave for later. I fell, exhausted, night after night into my bed in my new smaller, cozier bedroom. As I organized this and cleaned that and made those things fit into this space, I managed to check e-mail on my phone.

What was happening was incredible.

This post from 2012 was making the rounds again. People were commenting in droves both online and in person, even more so than when it originally was posted. Hubby was even receiving calls at work telling him they had seen it. People from all over the country were reaching out to me.

I am convinced this was Joey's way of telling me that he knows where to find us. Considering that he would be tickled beyond all belief that something written about him is getting all this attention and considering that it came out of the blue two years later right at a time that I needed a sign was amazing. This good memory. This way of bringing Joey with us wherever we go. I choose to believe that he had a hand in it. I need to believe that.

So here we sit amid boxes and discarded bubble wrap with still so much to do and organize, yet we are home and cozy and familiar already. I go and check on the old house, still unsold. It seems cavernous to me and unfamiliar, like I am seeing it with different eyes. It feels lonely and desolate; and I don't like going there. It reminds me of how I feel about going to Joey's grave. I don't like going there either. He's not there, nor is he at the old house. I know that. I know that he - and our memories - are always with us. All right here in the new house where they are supposed to be.

For someone like me, who hates change, this is important to remember. 

My Favorite Christmas Memories

This is from last year, but it holds true always. I'm hoping that by moving in to our new home, we can make many more favorite Christmas memories. Happy holidays to all!!

*            *            *

I've not made it a huge secret that the month of December depresses me (and April, June, September, and October, but those are beside the point right now). I wish it didn't have to be that way because I really love Christmas; but when you're missing someone so much, it's inevitable.

So, in an attempt to put myself in more of a Christmas spirit, I've been thinking about some of my favorite Christmas memories, and I want to share them with you.

When I was growing up, we lived in a teeny, tiny house. My sister and I shared a room in the attic, and our only bathroom was in the basement. Every time I had to go to the bathroom, I would wake my sister up so she could go with me all the way downstairs because I was scared.

One Christmas Eve, long after my older sister had stopped believing in Santa Claus, I woke her up to take me to the bathroom. She knew that the presents were already under the tree, and she didn't want me seeing them. So, she walked with me down the stairs, through the living room, and back again with her hand over my eyes so I wouldn't see the gifts. She still talks about that. And it's one of my favorite "Big Sister" memories.

I also remember that we went to Midnight Mass almost every year in our Catholic school gym. It was hot and dark and I could barely keep my eyes open I was so tired, but I loved it. We were allowed to open one present before we went, and mine was almost always a small piece of jewelry from the Avon catalog. I will never forget one year, the man next to me farted during mass - an SBD (Silent But Deadly) - and it ruined mass for me. I can still picture that dude's corduroy pants in my mind.

My second married Christmas, Hubby and I were in our first home. It was a darling little 1950's brick home with wood floors and lots of character. I remember exactly where we set up our tree and the ornament he gave me. He had started a tradition of giving me a glass ornament the year before. I remember hanging another ornament on the tree, a streetcar we had picked up in San Francisco in the fall. We had the artist write "The Glows" on it in anticipation of our first baby. But sadly, I miscarried two weeks after our trip.

We started our traditions of going to Christmas Eve mass, eating crab legs, and watching "It's a Wonderful Life." Hubby had never seen that movie before he met me!

The Christmas right before I had the twins, I was HUGE! I was on bed rest, and I had a terbutaline pump strapped to my leg delivering meds 24/7 keeping me pregnant. Despite that and the two other medications I was taking to prevent my contractions, I was still having them constantly.

We were at my parents' house  and playing cards after dinner as we usually do. Of course, I had to get up to go to the bathroom, and when I came back and sat down, a very loud farting noise came from under my chair. Everyone said, "Kathy! Oh my god, I can't believe you did that!" I was mortified. I kept denying it, but I was laughing so hard at the same time.

The farting noises continued, and I felt my belly tightening up. I really thought I was going to go into labor. I think my mom thought so, too, because she finally outed my former brother-in-law who was remotely controlling a fart machine he had placed under my chair while I was in the bathroom. I didn't go into labor that night, but I did a week later - six and a half weeks before my due date.


Our first and only Christmas away from home, was the very next Christmas when Hubby, the twins, and I were living on Long Island. I can't remember exactly why we didn't fly back to the Midwest - whether Hubby was on call or we just didn't have the money - but I was really, really upset that we wouldn't be spending the holidays with our families.


We got a tiny little fake tree and put it up in the corner of our rented apartment. We kept holding up eleven-month-olds Joey and Slim and showing them the twinkly lights. We tried our best to take a family selfie for a holiday card, but it kept coming out blurry and the boys' eyes looked like they were possessed. We finally settled on a darling picture of the two babies in cute holiday jammies playing with gifts, and we created a holiday "top ten" a la David Letterman to send back home to friends and family. We still talk about that list. It was epically funny (maybe only to us, but we loved it).

The best part about that Christmas was that we proved that we could do it on our own - the holiday and getting pregnant again. After undergoing fertility treatments for Joey and Slim, we found out on Christmas Eve that we were expecting Knox. And I said to Hubby, in no uncertain terms, that we would NOT be spending another holiday away from family.





Our last Christmas with Joey was so, so hard. Honestly, I don't know if it is worse when you know it will be your last or when you don't know. Someone on the other side will have to tell me. During Joey's illness every holiday, every special day, every marker on the calendar was met with breathless anticipation - would he make it or not? Would he be here to celebrate with us or would he be gone?

In the month leading up to Christmas, Joey was busily preparing a Christmas list. He was cutting pictures out of magazines and color coding the double-sided paper. When it was his turn to sit on Santa's lap, it took forever to go through that list, but everyone sat patiently and watched him.

At both Hubby's side of the family and mine, Joey sang "Jingle Bells" to the crowd, shaking a set of bells that Lil' C had received for a gift. We hung on every word, every shake of those bells. When the holiday was all said and done, his gifts sat untouched in his closet. For some unknown reason, he took his gifts upstairs after opening them and they sat there until after his death. That is one of the mysteries about what his disease did to him that will remain unsolved.

I feel so lucky that we got one last of every holiday and birthday with Joey. We have our one last memory of and with him, and that's so important. Since he's been gone, I've had such a hard time finding joy in the big moments. I can find joy in the smaller moments, the every day moments; but the "big deal" days are hard.

I just need to remember that Joy is one letter away from Joey, and that the memories he left us with will always be strong sources of joy for us (<----every time I type 'joy', I accidentally(?) type 'Joey').

I'm not sure I will send out holiday cards this year. I just don't really have the energy. There is no good reason at all - I just don't feel like it. Although, I did get my first two cards today and thought maybe I should. Nothing will beat our holiday card from last year, though.

My mother recently reminded me that I do have four other children for whom to make the holidays special. I know that, I do, and I will try. I want their memories to be filled with Joy, too.


Here's that Holiday "Top Ten" in case you wanted to read it:

This is Childhood Cancer

Hopefully you know by now that September is Childhood Cancer Awareness Month. Maybe you know, but don't want to think about it. Seeing pictures of kids without hair, with hollowed-out eyes, in wheelchairs, or bloated from daily doses of steroids is too much for you to handle. Thank God that's not MY child, or Please God, never let that be MY child, you think.

Well, for some of us it is our child. According to CureSearch.org, more than 40,000 children are in treatment for cancer each year. In fact, cancer is the number one cause of death in children ages 1-19, more than all other diseases combined.

It can strike any child at any time.

Even yours.

This is what cancer looked like for my family:

Joey was a vibrant, smart, fun, curious child who loved to hug and laugh and have fun.

But, shortly after he turned five, he began getting almost daily headaches accompanied by vomiting. He lost a lot of weight.

After a CT scan revealed a mass in his brain, he spent two weeks in the hospital with a drain running out of the side of his head. He had two surgeries that determined that the tumor in his brain was inoperable. A doctor told us our son would die. He asked us to sign a DNR for our five-year-old son. We did.

Joey with US astronaut (ret.) Clayton Anderson

Despite that diagnosis, we couldn't do nothing. He was our son. So he got fitted for a radiation mask and began a six-week course of radiation. After he rang that bell signaling the end of radiation, we celebrated with a party. What was the last party you had for your child?

He also began taking steroids to help with the swelling and vomiting. He was down from vomiting five times a day to once a day, but he was also gaining weight rapidly. A yellow puke bowl was his constant companion.

While some parents are busy worrying about whether Little Declan has the right Spiderman backpack for school, we were just relieved that Joey made it through the summer and was able to start kindergarten with his twin brother. The signed DNR still sat unused on my desk.

He spent a good portion of the kindergarten day sleeping in the nurse's office; and instead of learning how to read, he was learning other things. And we had to be okay with that.

This is how families of kids with cancer get to see Disney World. It's no fun getting the best seat on the parade route or getting to the front of the line just because your child has cancer. I'd wait an hour and stand on my tippy-toes to have my healthy child back.

Joey missed Thanksgiving because he was in the hospital. He had the stomach flu; but in children taking chemotherapy, this is much more serious because of their already weakened immune systems.

Our last Christmas memory of Joey would be a wonderful glimpse into his real personality. He performed "Jingle Bells" for the whole family. Despite getting almost everything he asked for that Christmas, he played with none of it. The brain tumor made him lose interest in activities he once loved.

By Spring, his smiles were much more rare. And on a last ditch attempt at a family vacation, Joey sat most of the time on our trip to Florida, too bloated and tired and uninterested to do anything.

When the month of May came, I prayed every day that Joey would not die on Mother's Day or my birthday.

These pictures were taken just days before his death in June. It hurts me to look at them. Does it hurt you? Good.

Five days after our son died in our arms, this is how my husband and I spent our 9th wedding anniversary . . .

. . .and this is where I visit my child now.

This is what my family pictures will forever look like.

These are the brothers that will grow up without their twin and best friend.

And this is the child who will never know his oldest brother who died before he was born.

If this bothers you - as it should - look. Think. Research. Donate if you can. Spread the word. Share. 

I don't want any other parent to know first-hand what pediatric cancer looks like.

I dedicate this post to a fellow cancer mom, Mindy, who inspired it. I'm thinking of both you and Brinkley all month long.

Not Broken, Just Bent

I was cleaning out a drawer the other day and I found an old cell phone of mine. Old as in, from four years ago. I had been keeping it because there were pictures on it, and I didn't know how to get them off. I finally found a camera store that could do it for me, and I sat in front of the machine wondering what I would find. 

What I found was picture after picture of a younger set of Glow boys. And Joey when he was sick. There were only about ten pictures of Joey, but I cherished every one. 

Joey as a cat for Halloween with Stripey Kitten as a devil.

 . . . with one of his doctors being silly at chemo.

. . . painting pottery (and eating cookies apparently).

 . . . kicking ass at air hockey.

 . . .and still with a smile shortly before his death.

Today is the fourth crapiversary of the day we said good-bye to him. It's fitting that I am up all night writing this, as I was up all night with him that night to help guide him on his journey from this life to the next. I gave a piece of me to take with him, and some days - a lot of days - I feel broken inside.

I'm walking on the edge a lot. One bad day can push me over. One person telling me to "enjoy it while it lasts because it goes so fast" is enough to make me want to claw that person's face off. Some days I feel like I can't do it anymore, no one understands, and I want to hide away. Broken.

But as I looked at the rest of the pictures, I realized that I'm not really broken. I'm just bent.

After Joey left the picture, life went on with three little boys instead of four. There were still smiles on our faces, though I know how the mom in those pictures was feeling. How she forced herself for fourteen months to imagine life without one of her precious sons because when the time got there, that was the only thing that was going to help her survive.

To keep her from being broken.

It helped me on that day I took only one twin to first grade.

It helped me take pictures of three sons when I kept thinking there should be four.

And it helped me welcome a new son.

So many every day things could break me. 

Like dentist appointments . . .

 . . . and first lost teeth . . .

 . . . and brotherly love.

They bend me to the breaking point. And I never know when it will happen. 

I saw someone collapse over the weekend and heard the word "seizure", and even though it wasn't about me, I lost it crying in the bathroom.

Bent.

I hear a song at church that was played at Joey's funeral and I have to fight back tears.

Bent.

The boys are fighting and I think about how Joey would have made everyone laugh.

Bent.

I'm cleaning out the house for the move and I know I should get rid of something that was Joey's, but no one ever uses anymore.

Bent.

As hard as it is to walk around bent all the time, I know it's better than being broken. I think of the words of one of my favorite singers, and how they fit how I'm coping:

Just give me a reason

Just a little bit's enough

Just a second we're not broken just bent

And we can learn to love again

It's in the stars

It's been written in the scars of our hearts

We're not broken just bent

And we can learn to love again.

~Just Give Me a Reason

words by: Jeff Bhasker, Alecia Moore, and Nate Ruess

My reasons?

This . . .

 . . . and this

 . . . and this

 and especially these.

The times we're all sitting at the dinner table and someone says something so adorably cute, or the times when our eight year old says he will help the two year old. Or when all the boys are laughing together over something dumb. Or we're at a movie together or watching someone's baseball game.

So many reasons to go on and not completely break. It's hard. Every day it's so hard, and some days more than others I have to really look for the reasons. 

But they're there.

And the little bits are enough.