Moms tell how they feel about their child's diagnosis in 3 words

I felt many emotions the day we found out about Joey's brain tumor. My mind, heart, and gut would continue to cycle through so many emotions over the nearly 14 months before his death.

The day the doctor said to me, "Bad news, it's a tumor," I felt like everything dropped out from under me. I felt confusion and disbelief, anger and sadness.

And denial. I definitely felt denial. I kept hoping the scans were wrong. I kept hoping that there really WAS something the doctors and surgeons could do to save his life.

And after his death, I felt devastation, heartbreak, and relief.

It may seem unbelievable to say that I was relieved that my son died, but his life could not go on the way it was. His suffering was truly over.

When Joey's brother Slim was diagnosed with autism two years ago, I felt relief once more. Not that my son was going to have a lifetime of social challenges and difficulties, but relief that he could finally get the services and treatments that we knew could help him achieve and put his wonderful mind to work.

When we hear the words "diagnosis" or "diagnosed" they often put a sick feeling into our stomachs - even as moms of "typical healthy" kids (are any of them without challenge though?) - because we can imagine how we would feel if that were our child. What would we do? How would we feel? In what ways we would deal with the changing hand we'd been dealt?

People say that attitude is everything. Some people, myself included, are naturally more negative thinkers, assuming the worst right away. Some are sunny sunshiners from the get know and just know everything will be just fine.

Both people's kids get cancer. Both have children born with Down syndrome or autism. A person's attitude doesn't change the circumstances, but it can color how you deal with the hand you've been dealt.

I was curious how other moms reacted to a diagnosis their children received. Not asking what it was, I took to Facebook to ask them to describe their reactions and emotions in three words or less.

Overwhelmingly, there was almost a 50/50 split between the top two responses: worried/terrified/scared and relieved. 

I think that says a lot. I think it says that a mother's sixth sense is there, and it's strong. We know our children, and we know when something is not right.

I knew something wasn't right with Joey in the months leading up to his cancer diagnosis. He was tired and not as energetic as usual. He had grown apathetic about many of the things he loved. I suppose in some ways, I was relieved to know; though I was hoping it was allergies or migraines, not a huge tumor.

Here are some of the other emotions that moms had when they found out about their child's diagnosis:

• freaked

• nervous, anxious

• protective and mama bear

"I hate this."

• glad 

• stunned, blind-sided, shocked, sucker-punched

• frustrated, overwhelmed

"My heart dropped."

• pissed, angry

• confused

• helpless

"Scared, but blessed."

• motivated, determined, resolute, focused

• validated

• devastated, sad

"Shit, now what?"

• hopeless, powerless

• acceptance

• hopeful

"Let it be me."

• prayerful

• lonely, alone

• love

I can guarantee you that anything you're feeling once you've heard your child's diagnosis is completely normal and within the range of emotions you're "supposed to" have.

And also? They will change day by day, hour by hour, and yes, even minute by minute.

There is nothing fair or right about your child not being anything other than how you dreamed him to be. It's okay to feel angry and sad and hopeless and helpless about it.

But it's also okay to feel relief and gratitude and the resolve that makes you want to kick ass like a mama bear for your child.

My favorite response I kept for last, and it's my three-word pep talk for you:

"We got this!"

#thisischildhoodcancer

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Do you know someone whose child was just diagnosed with cancer? Here are nine things you can do to help.

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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