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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September: We're in it

Professional baseball player Willie Stargell once said, " I love September, especially when we're in it." I'm sure that's in reference to the World Series; but still, I love September, too. The beginning of school and football and fall. Cooler weather, changing leaves, bonfires, and pumpkins. There's not much I don't love about it.

Though now I know that September is also Childhood Cancer Awareness Month. I made a pact with myself that I would talk about it all month to help raise awareness. Now I'm even tired of it. It just makes me sad and wears me out emotionally.

In case you missed some of the places I've written and things I've said, here's a recap:

As my son struggled with cancer, I longed for what other mothers had on Good Housekeeping

Handling My Son's Cancer Like a Mom on Mamalode

When Childhood Cancer Lasts Longer Than One Day on Her View From Home
What to Say to a Friend Whose Child has Cancer on Her View From Home

And just for something fun and fallish and yummy:
Fall Harvest Cake (plus 11 other recipes with Apples) on Her View From Home

If anything strikes you as something you think others would love to hear, please share. I would appreciate it.

Happy fall!!

Found on Pinterest

Thank you to those who fight childhood cancer every month

It's mid-September, and we've already been bombarded with posts, pictures, and videos about childhood cancer. It can be overwhelming, both to soft-hearted people who hate to see children suffer, and to parents of children who are battling or who have battled cancer.

I have to admit, even though I lived with it for nearly 14 months, it's still difficult for me to read certain stories and look at certain pictures.

I am sharing a thank you on Her View From Home this month to all of the people who dedicate time and energy to helping with the cause: for strapping on running shoes or organizing a lemonade stand or even donating money - I thank you.

I'm also sharing some tips on how you can help, places you can donate, and things to consider before donating money. Please share if you feel the information would be helpful to someone. You can see the post here on Her View From Home.

Thanks!! xoxo

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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Here's the deal about childhood cancer and autism

The first words out of my mouth after the doctor told me Joey had a tumor were, "How does a five year old get a brain tumor?"

But sadly, it happens. It happens to children younger than five. It happens to babies. Some babies are born with cancer and other terrible diseases. 

But why? And how? Most people never even see it coming. One day you're at prenatal water aerobics class, and the next day you're on your couch bawling your eyes out to your mom over the phone because you've just been told something is wrong with your baby.

And all the doctor can say is, "Sometimes it happens."

Sometimes it happens. And most of the time, we don't know why. Or how. But dammit, we do know that things happen for a reason, so we must find out why. It's human nature to believe there's always a reason. Whether that reason involves science or divine intervention, we all seem to be in one camp or the other.

So we pray and read the Bible. Or research and read medical reports. We talk to people who are like-minded in order to add fuel to our theories. Then we make our conclusions. And we stand by them NO MATTER WHAT because, after all, there has to be a reason. 

We put ourselves into two opposing camps, opposite sides. The Sharks and the Jets. East vs. West. Vaxxers vs. Anti-Vaxxers. SAHM moms vs. Working Moms. Men vs. Women. Blacks vs. Whites.

Someone has to be right. It's not right if no one is right. 

There's a third camp, the rebel camp. They refuse to believe either theory. They will not take sides. Their explanations are simple:

"This is just the way things are." 
"He was born with this."
"I love her for who she is."
"We are all doing our best." 
"There is no right answer."

The message is beautiful, embraced, shared, shouted from the rooftops - YES, YES, acceptance is King! It's the only answer!

And then we go right back to blaming each other.

For the measles. And peanut allergy reactions. And racism. And dog poop and cat fur and stealing someone else's place in the parking lot at pick-up time.

I'm sure it's always been this way - parents judging parents, people hating and resenting other people for their beliefs and actions.

But it just gets to be so much, don't you think?

We live in the information age. Because we know so much, we think we should have ALL the answers. But we are actually afraid of answering the biggest most important question: What if there is no answer? 

What if no one is right, and we're all just speculating?

Sure, a lot of our lives have been tested and quantified and hypothesized and we can definitively say what the right answer is. Last night, Knox was studying times tables and there was doubt in his voice every time he gave an answer.

"Are you asking me or are you telling me?" I would say.

Slim chimed in more often than I would have liked him to and blurted out the answers. "The theory is that Knox needs to figure these out himself, " I said, trying to sound smart and authoritative.

"Math facts aren't a theory, Mom," Slim stated. "They're facts." He punctuated the word "facts" with a "DUH" just like tweens are so good at doing.

He had a point. Some things we just know because they are proven and no one would ever bother to argue over whether seven times eight is really fifty-six or not.

Because it doesn't matter. It's not sexy and controversial and proving it wrong isn't going to win you any accolades or fame or make your blog post go viral.

image by Vlado

Here's what I think I know about childhood cancer and autism:

We've experienced both in our house, and they both totally suck fat disgusting maggots. Both, while seemingly empathy driving, are lonely as hell to go through because no one understands them like you do. Unless you seek out a group; but even then, no one has your exact same experience. And after all, it's exhausting enough just focusing on your own experience.

They are complex and often misunderstood. I still don't really understand either of them. While I can't speak with certainty about what caused Joey's cancer, I do know what caused Slim's cleft lip and palate and his ADHD and his autism. A gene deletion. Because of his birth defect, he has been poked and prodded and tested and studied and YAY, we get to know why our kid is different. We get an answer. 

But you know what? That answer only leads to more questions. Why does he have a gene deletion? How did he get it? Did Joey have one, too, that was known to cause cancer? Was this because they were fertility babies? Was it because I fed him too much non-organic milk and carbs or red dye #40? Or was it really caused by vaccines and I was just too stupid to do research before giving them to my children? 

Believe me, I don't need any other person to make me feel guilty about anything. I can do that just fine on my own.

We survived childhood cancer and the death of someone we loved. It was hard, so incredibly difficult; and it will be for the rest of our lives. Most days it feels like no one understands, but we are making it through to the other side.

We are living with autism in our house; and it is hard, so incredibly difficult and lonely, but we are managing it because we love our son. I don't think any GOOD parent, any truly loving person can say they love their child any less because of a disease or disability. And no matter what their stance - pro or anti vaccine or stay home/work away/free range/helicoptering/breast or bottle fed would ever seriously wish a terrible disease or affliction on a CHILD just because we don't happen to agree with how their parents are raising them.

So here's the deal about cancer and autism and the measles and birth defects and lice and the freaking stomach flu that just won't go away: sometimes we know how kids get them and sometimes we don't. We can take our knowledge and do the best we can to make decisions that jive with our faith and beliefs and morals and conscious, and we can love our children as best we know how. We can share our facts and information with others because that is our right in this society.

But it is also our responsibility to speak and act in the best interest of others as well. None of us is an island entire of ourselves. We live here with everyone. We must be kind and considerate and think of how our actions and words are affecting other human beings before we put them out there. We are seeing less and less of that in our world, and that makes me sad for my children's future.

The real deal about childhood cancer and autism is that they have made me less willing to fight with people over whether they feed their kid organic food or eat at McDonald's, whether they vaccinate or not, or co-sleep or take their kid's puffy coat off every time they put him in the car. Childhood cancer and autism have taught me that no matter what you do, what decision you make for your child, there is always a greater force at work that seems to say, "But anything can happen at anytime when you least expect that it will."

Childhood cancer and autism have taught me to simply forge ahead and do the best that I possibly can for my children because at the end of the day, that's the only deal that matters.

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