I know where you are

Image from Morguefile

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.

A Cancer Patient's Legacy of Laughter

Muscles!

It’s difficult to wrap your head around the fact that your five-year-old child has an inoperable brain tumor when just one month earlier he was giving you a minute-by-minute summary of his Kindergarten Round-Up.

It’s impossible to describe the feeling of sitting across from a pediatric doctor who tells you that your son is going to die when just two months earlier he was given a completely clean bill of health by another doctor.

It’s inconceivable to think about signing a “Do Not Resuscitate” order for your oldest and most dearly wished for son because you want to believe that he can somehow be cured – will be cured – of the beast that has inhabited his brain.

But the horrifying and sad fact is that more families than just mine have experienced these same difficult and impossibly inconceivable realities. I falsely believed when Joey was diagnosed that we were the only people who had ever had this happen to us; that somehow, through some fault of our own, we had caused this to happen to our child.

I was the mom who longed for a houseful of children; yet when they were finally all here, I was overwhelmed and unappreciative. I had healthy, vibrant, fun-loving sons; yet I couldn’t see the forest for the trees. I didn’t understand that life need not be perfect for it to be wonderful.

Then Joey got sick, and that all changed. Some of our best and most wonderful memories were made while Joey was battling cancer. 

Joey was a hilarious kid. He had a constant grin on his face, he loved to laugh, and silliness was the name of the ever-changing game for him. He loved to pretend and make up games and everyone was included. He was a horrible hide-and-seek player, though. Since he loved attention, he would yell out the seeker’s name so he could be found first.

After the initial grand mal seizure that took us to the hospital and led to his diagnosis, he changed though. To strangers and to the doctors and nurses who would care for him, he was still a sweet and funny child. But we knew his energy was gone. The constant motion, the ideas, and the giggles were more infrequent. I think that’s what broke our hearts the most about this horrible disease: he was a shell of his former self.

Every once and a while, we would see glimpses of the old Joey. The day he came home from kindergarten and asked us if we wanted to see what he learned that day, we were thrilled. He had been sleeping in the nurse’s office for the good majority of each school day. When he very carefully placed his beloved stuffed cat, Stripey Kitten, on top of his head and balanced her perfectly there with his tongue sticking out of his mouth and said, “Ta da!” we had to laugh. No, he wouldn’t be learning anything beyond kindergarten, but he was still thinking of silly ideas to get attention.

The Christmas holiday came, and we were so concerned about making a lasting memory for all of us. But Joey was the one who gave us the most precious one. He performed and sang “Jingle Bells” using a harmonica and a set of sleigh bells that his little brother had gotten for a gift. He delighted both sides of the family with an identical performance and soaked up the attention. Just when we thought his personality was gone forever - that the brain tumor had stolen it all - he would say or do something or show one of his trademark huge grins. Even his last request, strawberry ice cream, was so Joey.

Like every mother who has lost a child, I wonder. I wonder what Joey would have been like. I wonder who his friends would have been or what kind of grades he would have gotten in school or what activities he would have enjoyed. I mostly think that because of the kind of person he was in his six short years of life, he would have grown up to be someone amazing. Surely he would have changed the world.

I realize Joey probably wouldn’t have changed the world. Maybe he would have been some ordinary, average guy. But one thing I know is that he would have always made people laugh with his silliness and his willingness to try something goofy or put himself out there. Cancer may have stolen Joey's life, took him away from ours; but cancer can never steal the memories of that giggle and smile and sparkling eyes and his goofy Stripey Kitten voice and silly tricks. 

Cancer can never steal the lesson a five-year-old child left to his family: the lesson that you only get one go-around, so make it fun and do the things you want to do. 

I think maybe that is how I am going to help this cause. I’m going to tell Joey’s story with love, laughter, and honesty. I am going to make other cancer parents feel understood and comforted; and make them realize that they are not the only ones going through something hard, and that it is not their fault. 

I am going to show people what it’s like to experience the unthinkable happening. And I’m going to share Joey stories – good, bad, and funny - because I think he would have loved that. I think he would have loved being the center of attention – making people smile, laugh, or even cry. He would love that to be his legacy, knowing that his mom is knocking cancer back down by showing people that cancer doesn't take it all away. 

Not if we don't let it. 

Struggling with what to say to someone who has lost a loved one to cancer? Here's my advice. 

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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

Tending the grieving mama heart

There were a gazillion plants and flowers at Joey's funeral. Well maybe not a gazillion, but it seemed like it. There were so many that we let people take home what they wanted. For years, I heard from my dear friend Meagan about her "Joey plant" and how it was doing really well.

Last fall, my mother-in-law gave me a plant. It was, for all intents and purposes, pretty much dead. Hubby gave the "in the garbage" motion to me behind her back until she said, "This is a plant from Joey's funeral. I thought you would like to have it."

Of course I would. 

After she left Hubby said, "That thing is dead. You're throwing it away, aren't you?"

I am the grieving mother who still has her dead son's bicycle in the garage. No, I had no intention of throwing it away. "It's a Joey plant. I can't throw it away. I'll see if I can bring it back to life."

Hubby rolled his eyes at me and walked away.

I got some new, rich soil and repotted it in a cute Pottery Barn pot with a frog on it that someone once gave to me. Every week I gave it a good soak and misted the leaves. I carefully pulled off the dead leaves so the new fresh green leaves could thrive.

And slowly but surely it came back to life.

Most of the dead, brown leaves have been stripped away, and new perky green leaves are taking their place. Some brown, droopy leaves remain; but you know what? I'm okay with that.

The plant is like my heart. Once I ignored it. Once, I was letting it die. That summer that we lost Joey I wanted to stay in a cocoon. If everyone would have let me, I would have lain in bed that whole summer. But, despite all the brown and dead that was destroying my mama heart, there was still some green and life in there: my other boys, my husband, our families and friends. They cared. And I cared enough about all of them to plod on.

Then there was a new baby who brought a burst of color to my dead, brown heart. And slowly as I tended it, it came back to life.

It didn't always hurt when I talked about Joey.

I could tell his stories and eventually my sad smile turned into tears of laughter.

I could talk of missing him with his brothers and help them heal, too.

Our hearts have greened back up again, just like the Joey plant. But the brown, dead matter still remains in part.

Hubby bought me a beautiful floral bouquet for Mother's Day. As he was arranging it in a vase, he noticed one droopy, less-than-perfect flower. He picked it out and discarded it. It made me sad.

Sadness, death, imperfection - no one wants them, but they are a part of life. Without them happiness, life, and joy wouldn't be as sharp, as bright or beautiful. The contrast, while ugly at times, is striking and necessary. I want to be reminded of my sadness. I want to look at pictures of Joey's kindergarten year and feel such an ache in my heart that I think I might die all over again just like I did that day I held him in my arms for the last time.

When my four-year-old son tells me he wishes I could have another baby and that it would be Joey so he could meet him, I want to feel torn in two with both sadness over losing one son and joy over gaining another.

I want to watch my ten-year-old helping his brother get dressed and imagine that's what Joey would be doing.

I want to cradle my eight-year-old when he is tired and crying over Joey and cry with him.

I want to watch my twelve-year-old with ASD sob over his twin brother's grave because that's the only time I know for sure that he cares, that his heart is not all brown and dead.

I'm holding onto the brown and dead parts of my heart because they make the other parts more vibrantly green and alive.

I want all grieving moms to know this: sadness can co-exist with happiness, healing can happen alongside hurt, and hope will thrive amidst despair. It's hard, so hard sometimes; but it can happen. You just need to tend to it - tend to your heart. Care for yourself, soak yourself in what makes you feel good, carefully pull away the pain and bitterness, and be okay with leaving some of the sad, dead parts as a reminder of what makes you alive.

Your heart is still alive because it loved and was loved by someone very special. That is something that will never die.

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When a Sibling is Sick: Helping Children Understand Cancer

People often ask us if Joey's brothers knew he was sick. Yes, they did. They also ask if they knew he was dying. Yes, and no. We never specifically told them he would die from his cancer. We did say that some people get better and some people don't and we hoped that Joey would get better.

Which was the truth.

They knew he was changing and getting sicker and not getting any better. Children are intuitive and observant. They know more than we think they know, but there are definitely ways to guide them and answer their questions when a sibling is diagnosed with cancer.

Tell the other children about their sibling's diagnosis as soon as possible.  I want to reiterate that children are clever and observant. They will know something is wrong. They might overhear a conversation or ask why you are taking their sibling to the doctor so much. You can talk as a family, or you can separate older siblings and younger in order to have age-appropriate conversations.

Know and share the facts. Speak honestly to your other children about what cancer is and what it is not. Use the word cancer. Explain that our bodies are made up of cells, and sometimes something happens to these cells to make them sick. Some of the sick cells get together and cause harm to the body, making a person sick. Assure them that every illness is not cancer; but be honest that some cancers are more serious than others. Make sure they know it is not contagious.

Be prepared for all the feelings. Children will likely have many conflicting emotions: fear, anxiety, anger, resentment, guilt, loneliness, and even jealousy. Reassure them that every one of those feelings is normal. If they are feeling guilty that they made their sibling sick by being mean or teasing them, tell them that it is not their fault. Doctors know what causes some cancer, but not others. Relieve some of their fear and anxiety by letting them know that it is okay to ask questions. And then be sure to give honest answers. Even "I don't know" is an honest answer and okay to give.

Let them know that it is okay to cry, but it is also okay to laugh and be happy and have fun. While something very sad and hard is happening to someone they love, good things are happening, too. Friends and pets make us laugh, we scored a goal at our soccer game, we aced a really hard test, or we got invited to a really fun party. Life goes on even though someone is sick. Our happiness can help make our sibling who is sick feel a little better sometimes, too.

Be realistic about what will happen next. The hair loss, the vomiting, weight loss or weight gain, and all of the time that their parent is spending with their sick sibling can be upsetting. Some anxiety and anger can be quelled by letting kids know what is coming.

Stick to a routine as much as possible. With so many things changing, children find routine comforting. Sticking to schedules, bedtimes, and family traditions as much as possible will help bring some normalcy during a time of upheaval. Do prepare children for changes to routines, though; especially if someone else will be picking them up from school or taking them to practices and lessons.

Let siblings help, but don't give them more responsibility than they are ready for or can handle. Provide simple opportunities like helping with chores or keeping a younger sibling occupied. Teenagers can run errands or cook basic meals. Siblings can also step in when Mom and Dad are tired and overwhelmed. Brothers and sisters often have bonds that are very unique. Perhaps they can get a smile out of the patient or be there during scary procedures to offer comfort. Siblings can do something nice like make a craft, pick flowers, or just talk about normal kid things for a break from all the cancer talk.

Be prepared to discuss death with your children. The sad fact is that one out of eight children with cancer will not survive their illness. Here are tips for talking to your child about death.

Get outside help. Sometimes, it's just too much and completely overwhelming, so it's okay to leave these conversations to the experts. Your child's hospital will have social workers trained in these types of discussions and can recommend grief counselors and services. Some helpful websites are CureSearch.org and Cancer.net

When a sibling is sick, you might see the other siblings misbehaving more frequently, clinging, regressing, being demanding, complaining of being sick, or having nightmares and trouble sleeping. This is all within the normal range of behavior.

When Joey was sick and right after he died, Knox had night terrors. He would sit up in his bed and cry uncontrollably. He wasn't awake, so nothing I said or did could calm him. I just had to sit by his bed until it was over and make sure he didn't hurt himself.

Children are going to have questions, fears, and concerns when a sibling is diagnosed with cancer. Arm yourself with straightforward and age-appropriate answers. Be patient. Try to spend a little extra time with the child who is not sick. Give lots of hugs and reassurance. Remember, they are going through this hard time, too. While adults have the ability to understand all facets of the cancer diagnosis, children experience a great deal of misunderstanding of how the disease will affect their sibling. Following these steps will help bring a little healing in the midst of sickness.

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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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The One Thing Grieving Moms Fear

Our summer has been a series of hot days spent poolside, outings with the sole purpose of knocking items off our summer bucket list, and lazy days spent at home punctuated by too much screen time, overzealous brotherly "love," and a cycle of mess, clean, repeat.

Bedtimes have been loosely observed, ignored in favor of another chapter of Harry Potter or popcorn and a classic movie like The Sandlot. Despite the late nights, the boys still get up with the sun. At least now they've learned to keep the volume on the t.v. low so Mom can sleep a little longer. They put in their own toaster waffles, and big brothers help little with glasses of cold morning milk.

Last week, after many late nights spent reading and laughing at movies and riding bikes as the sun set, miracle of miracles - the boys actually slept in past 7:00 am. Three of the four were up by 8:00 am, and we busied ourselves in the kitchen making eggs and pancakes and sharing responsibility for emptying the dishwasher of its clean dishes.

As the clock moved around the hour, breakfast was eaten and dirty dishes were filling the dishwasher again. I kept looking at the clock and looking at the stairs. Lil' C wasn't awake yet. There was no noise coming from upstairs: he wasn't simply watching television or playing a video game.

I contemplated checking on him, but I didn't want to wake him if he really needed the sleep.

A few minutes before 9:00 I heard footsteps upstairs, footsteps that made the path to the bathroom and back to the bedroom. That's when panic set in.

Six years ago, I had a similar morning - television on softly, toaster waffles toasting slowly. Three little boys awake and one not. One who slept late, who went to the bathroom and returned to bed.

And when I checked on him, he was having a grand mal seizure.

Then there was an ambulance.

And a doctor.

And a tumor.

I live in fear of this happening again. 

I think as moms we have certain fears ingrained in us: illness, freak accidents, kidnapping. Worry is just a part of the mom job.

But when you are a grieving mom, when you have been through something very tragic and perhaps held your own child in your arms as he died, you fear history repeating itself with one of your other children.

After all, if it could happen once, it could happen again . . . right?

I remember a time shortly after Joey died when Knox started complaining of headaches every day.

Oh God, no, please no, I thought each time he brought me his concern.

A trip to the radiologist revealed he just had congested sinuses.

This time.

But who's to say that something else won't sneak up on us when we least expect it?

Every headache, every stomachache, fever, illness, bump on the head, I wonder, Is it cancer? Or add here what other grieving moms fear - another miscarriage, another heart condition or genetic defect. Whatever it was that took their child away.

I guess it's a bit of PTSD (Post Traumatic Stress Disorder). I didn't realize that until I was at a blog conference, and someone fell to the floor having a seizure. I started hyperventilating and crying: the same reaction I experienced in the ER after the doctor told me about Joey's tumor.

And the same reason why I can't be around kids who are bloated from steroids and who have lost their hair from chemo. I think I can be strong, but I realize there are unresolved feelings there.

No matter how much we blog about our experiences, no matter how much we encourage other mamas to talk and share - and we embrace them for doing so - we are still scared. We still hold those memories so close to the surface, right over our hearts, and right in the forefront of our minds. Even if the same thing can never happen again, there is a fear of something big affecting our mama hearts and hitting us out of the blue.

I don't know how to make that feeling go away. Like I said, I think it's just part of motherhood - the beauty, the fullness, and the astounding happiness and joy mixed with the fear and uncertainty, anxiety and sadness that simply come inherent in the job.

*        *         *

At nine o'clock that morning last week when I didn't hear my fourth set of little feet coming down the stairs, I took a deep breath and went up to Lil' C's room. He was half lying on and half standing by his bed, face on his blanket, thumb in his mouth. When I came in the room, he yawned and smiled.

"Hey Buddy, good morning," I said as I wrapped him in a huge hug. "I have pancakes and bacon downstairs. Are you coming down?"

"Pancakes and bacon?! Yeah, I'm on my way! Just let me get dressed." He scurried off leaving his blanket on the bed.

As I turned to go back to the kitchen, I felt the tension leave my body with a sigh.

Not today, I thought. We're all safe today. 

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If you were here, I would tell you I'm sorry

If you were here, I'd tell you I'm sorry.

For a lot of things.

I'd tell you again how sorry I am that I slapped you in Target's parking lot.

I'd tell you I'm sorry I didn't sign you up for t-ball,

or invite your preschool friends to your fourth birthday party.

I'd tell you I'm sorry that the tooth fairy never visited you.

I'd tell you I'm so very sorry that I didn't believe you when you said you were having headaches. I'd tell you that yes, in fact, it is possible to have a headache every day.

I'd tell you I'm sorry that I never talked to you about death or Heaven. I'm sorry we never said prayers at night.

I'd tell you I'm sorry for a million other missed opportunities and first time parent flubs and for the fifty percent of the things that are inevitable in life that you had to learn about way too soon.


But you're not here, so I can't say I'm sorry for those things.

I can tell you that I'm sorry there was one monster that I couldn't protect you from.

I'm sorry that your grave on the hill is lonely because we hardly ever visit.

I'm sorry that your brothers are growing up without you.

I'm sorry that our house has turned angry and sad and mopey and sometimes joyless.

I'm sorry there is someone who lives with us now whom you never had the chance to know.

I'm sorry that your family is not running races in your honor or starting foundations or writing books about you.

I'm sorry I haven't learned to live as vibrantly as you did.

And I'm especially sorry that I still haven't grasped that sometimes it is too late to say you're sorry . . .

 . . . or 'I love you' . . .
 . . . or 'let's try again' . . .
 . . . or 'I'm listening' . . .
 . . . or 'I appreciate you' . . .
 . . . and 'I'm proud of you no matter what.'

If you were here, I'd ask you to help me remember those things. Remind me with your smile, your quickness to forgive, your willingness to accept.

If you were here, maybe I wouldn't even realize that I have anything to be sorry about. But that's the irony of losing you. Your absence makes me realize that I do have things to be sorry about.

And things I need to learn.

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A Boy and His Bestie

The noises and giggles coming from the far back reaches of my mini-van were hilarious. Nine-year-old little boy hilarious. "My fart noise is funnier than your fart noise" tear-inducing hilarious.

I couldn't help glancing in the rearview mirror every few minutes at my two little passengers. They couldn't be more different - one hulking and big looking quite older than his nine years, and one small and thin with missing teeth looking a little younger than his nine.

Seemingly unlikely friends, but actually the best. 

I remember Knox's first best friend quite well . . . because it was Joey. From the time he could even recognize faces, Knox absolutely adored Joey and vice versa. Wherever Baby Knox was Joey had to be - even if it was stuck under the couch. It was so cute to watch how Joey took care of him, taught him, and brought him along on all his crazy ideas and mischief.

And then one day, all of that just stopped.

After that seizure, after that ambulance ride, it was gone. Mommy came home from the hospital with a different person. Someone who had been changed so much that he was, in fact, just gone. 

Knox was just shy of four years old when Joey was diagnosed with cancer.  That's the age that Edgie is now. Edgie worships the ground Knox walks on, and Knox is so good to him. I would say that I can't imagine what would happen if something changed that, but unfortunately I can. It would be confusing and heartbreaking and life impacting.

I will never know the full scope of how Joey's cancer and death affected his brothers. I can hear it in their voices when they say they miss Joey. I can see it in the occasional tears they shed. I can sense it in their actions, like staying in the car when we are at the cemetery (Knox never gets out of the car).

It's even palpable in the shifting family roles. We lost our oldest son. The balance has now shifted. It couldn't shift to Slim. With his ADHD and autism, we are still working on responsibility and trust with him. So, the natural shift fell onto Knox. The kid who has always been physically bigger than his years. The kid who does what he is told. The kid we can trust to get something done.

The kid who was not built for that role and probably resents it. The kid who really has middle child tendencies and mostly just wants to fade into the background.

The kid who probably wishes sometimes that things could go back to the way they were before. 

Hanging out with his best friend from school affords him that opportunity. Recently, they were together for 36 glorious hours - a two-day camp at our zoo and an overnight at our house. I didn't make Knox do any of his chores during this time and I didn't ask him to watch his three-year-old brother.

But I did stand back and watch what happened.

He was happy and goofy and silly and thought of games and crazy activities to do and even let his little brother hang out with them.

He was heart happy down to his very middle child core. 

Even Hubby said he has never seen Knox like that. And it makes me alternately sad and happy at the same time.

Sad of course when I set five kid places at the table rather than the usual four. Sad to see five little boys all going 'round the buffet gathering their food because, after all, that's the way it should be every night.

But happy, so happy that Knox has found a friend with whom he can connect. They are not 100% exactly alike - not at all actually - but there's enough of a spark that keeps them together.

Knox went to his friend's birthday party a couple months ago, and I stole a glance at the thank you note he sent to Knox. The last line said, " Thank you for being my best friend."

Yes, indeed, thank goodness for friendship. It makes me heart happy down to my grieving mama core.

When you suck at being a grieving parent

Joey is buried in a cemetery that just happens to be right down the street from where I take Slim for bimonthly speech therapy appointments. Last week, the weather was finally not bitterly cold and windy, and I thought for a minute that I should go down the street to the cemetery and visit Joey's grave.

But I didn't.

I didn't go. Because I hate to go there.

The last time I was there was Christmas time. My parents' neighbor had decorated Joey's grave for the Holidays.

As you can see, it still wasn't undecorated for fall. 

Last week I wondered if I should go to see if the neighbor had removed the Christmas items yet.

But I didn't.

I didn't go. Because I hate to go there.

In fact, I hate a lot about the whole "grieving process." I hate that it's called a process. What's to process? My son is dead, and I will never see him again.

And now I have something new in my parenting journey to feel guilty about.

It's not enough that I regularly forget to ask my fifth grader for his discipline card on the weekends so I can sign it for its return on Monday.

It's not enough that my third grader asks me to cuddle with him every night; but instead I am falling asleep in my toddler's bed, also leaving Hubby with no one to cuddle.

It's not enough that I don't make my academically struggling first grader practice reading and math facts more often.

It's not enough that my toddler gets way too much screen time while I am trying to "get things done;" and then I wonder, what in the hell did I even get done today? 

It's not enough that I make the same mediocre dinners night after night.

It's not enough that at least a couple times a week my boys have to dig dirty school clothes out of their hampers because mom hasn't done any laundry in days.

And it's certainly not enough that I am involved in, like, zero committees at the boys' school.

There are so many ways I can make myself feel guilty about not being a good enough regular parent, much less a grieving one.

I mean, I see these beautiful blogs and Facebook pages dedicated to someone's lost child. Foundations and organizations and movements and fundraisers and 5Ks and books and all of the wonderful things that other grieving parents manage to do to honor their children's memories.

And here I sit, unable to even finish what I have started and making excuses as to why I can't. Unable to even go to my son's grave and remove some damned decorations that are three months old.

Because they are still there. Hubby's mother told us they were on her last visit to the grave.

They are there, and I am not.

I would rather tuck my grief away in the privacy of my own mind. It's safer there. Instead of feeding it, I can ignore it. Or only face it sideways rather than sailing directly at it - second star to the right and straight on till morning.

But that only feeds my guilt as well. I have actual plans, just like those other grieving parents do, but they get lost in my complete failure to execute them. The status quo is safer. Acceptance lies in status quo. Good memories lie here under which the bad have long been buried.

To change anything now would be akin to digging up the body, and that would just be too hard.

But it might also take away some of the guilt.

As I stand at Joey's grave up on that god-awful lonely hill, down the hill to the southwest is a stone in the shape of a butterfly. It belongs to a baby girl who lived only a month. 30 days on the earth. I often wonder how many of those days were spent in her mother's arms.

Of the rare times I visit my own son's grave, I often turn toward that child's grave. It is always decorated with balloons and flowers and stuffed animals and holiday decorations.

And I feel guilty that I am not giving my own son those tributes.

But then I realize that child's mother only had 30 days with her, none of which was a holiday or a birthday or any other special day.

I had six birthdays with my son. Five Christmases and Halloweens. Six Easter egg hunts.

Three first days of school.

We had vacations and trips to the park and proud moments watching him go off the diving board for the first time and play soccer with his friends.

That little baby girl's mom didn't get any of that.  She is getting it now, but only in the suckiest way imaginable for any parent.

Grief isn't a competition. No one wins, and there is no judge awarding points for "Best Use of a Lawn Ornament to Spruce up a Headstone."

No one is grieving better than you; just differently. 

As if we don't have enough to feel guilty about as parents, we should not feel guilty about the way we manifest our sadness and grief. A very wise woman - who herself is a grieving daughter and grandmother - once said to me, "Just because you are not there at his grave every day doesn't mean you don't hold him here (she placed her hand over her heart) twenty-four/seven."

I remember taking this picture like it was just yesterday. 

And just like that, she took away some of my guilt, winning this grief round - for now.



This post was syndicated on BonBon Break. 

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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.

feature image: shutterstock.com

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.