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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We Remember Them All

I have written previously about my three miscarriages. Each were unique and different and bring separate memories and feelings for me.

I was talking to my brother-in-law and sister-in-law the other night. She has experienced over half a dozen miscarriages. In talking about their experiences, she mentioned that she feels like the woman connects with these children because she had them physically with her; therefore, they will always be with her.

For men, it's different. They need a way to deal with their loss - because it most definitely is their loss, too. My brother-in-law shared that he named each little baby, and says their names daily in prayer.

This is interesting to me because I never thought of doing something like that. To me, names are for babies who were born, no matter how early, whether alive or still.

I know a miscarriage is still a baby - I have seen the heartbeat at just 5 weeks gestation - but I never thought about naming one.

My first miscarriage occurred at six weeks along in my first pregnancy; and this is the one that still affects me the most. I think about that baby all the time. I just know in my heart that was my daughter, and I wonder all the time how different my life would be if I had had her.

We never got to use our girl name; so I've decided that from now on, I will think of that baby as my girl. And I'm saying her name here: Natalie Kathleen.

I'll always wonder about her. I'll wonder if she would have had beautiful, long, brown, thick hair like I had as a child. Or would she follow suit with her brothers and be a blondie? Would she have my deep blue eyes or Hubby's bluish-green ones? Would she want to dance or play soccer? Or be a kick-ass girl and do both? Would she have my love of words and be an amazing big sis to the brood of brothers that history tells me would have surely come after her?

I'll never know; but I'll always wonder.

Today is Pregnancy and Infant Loss Remembrance Day. We are saying their names and telling their stories and giving ourselves permission to wonder and dream and grieve together.

Join me over at Her View From Home where I'm sharing what I wonder about the ones I have lost. Click here to read.

As you read, know that you are not alone.

xo

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When Will the Light Turn Green?

Joey was always kind of an impatient kid. Everything had to be NOW - "look at me now" "feed me now" "notice me now". It was just as cute as it was annoying.

Shortly after he got sick, he developed this habit of demanding that stoplights turn green. We'd be on the way to preschool or to the hospital for an appointment when a red light would stop us.

"When will the light turn green?" He'd ask.

"I don't know," I'd answer, "we just have to wait for it."

True to his impatient nature, he'd keep asking, "When will the light turn green? When will the light turn green? When will the light turn green?"

One time, on the second request, the light actually turned green.

After that, it became sort of a game to see how many times he would have to say it until the light would turn green.

As Joey grew sicker and weaker, the game became more agonizing to me. I could hear his little weak voice in the back seat of the car asking when the light would turn green and we could move the car ahead. I would be in the front seat wondering when our personal nightmare would be over and we could move ahead with our lives.

And I hated that. I hated that impatience with my own son's illness and impending death. I wanted to drink in every moment, slow time so that I would have him for as long as I could. But the end outcome was a reality that I could not simply drive away from.

So instead of stopping to look around, enjoying the delay, I just wanted to get moving. I was miserably stuck in my own grief and agony, and I just wanted to be able to move ahead.

There are so many times in the life that grief stops us in our tracks. Some are known to us: birthdays, holidays, special days, crapiversaries. Others blindside us in the most cruel ways: the message from someone with the story just like ours, the babies that we learned died after birth, the post on Facebook that punched us in the gut, a random story line on our favorite television show.

They turn the light red again, and we have to wait and wonder when the light will turn green again and we can continue on our forward path to healing.

"Grief is a road with many twists and turns. It has stops and starts and detours that we can't anticipate. There is no endpoint, no final destination. Over the next hill there is another; and around the next curve is another sharp turn. The best we can do is to keep moving ahead, keep traveling the road. Take in the scenery, even when the light is red. Have confidence in the fact that the light will turn green again and you can continue moving ahead."

Joey knew that no light ever stays red. He was also one not to wallow too long in any sort of misery. He wanted all the lights to be green.

And they are, even when we're grieving. We just need to accept the fact that it's okay to GO. You don't have to wait. It's okay to move ahead. 

I move ahead every day, even when it's hard, even when moving ahead feels just like marching in place.

I can always hear him, though. I hear Joey in my head saying, "When will the light turn green?"

And I know it's okay to go.

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How Dreams are Shattered

*Originally published in 2011, this post tells the story of how my family's life was changed forever.


When Hubby and I were first married and would attend mass on Sundays, we would always find ourselves behind a couple who had five sons. I would nudge Hubby every time and say, "FIVE boys...that's my nightmare...five boys."

I eventually learned that the mother of these - actually very well behaved - five boys, had suffered through cancer and had lost a leg. My new thought became, "Cancer...that's my nightmare."

Two years ago Friday, my nightmare became a reality when my five-year-old son was diagnosed with an inoperable brain tumor.

Two years ago, I was four-fifths of the way to my perceived nightmare. I had four little boys under the age of six...and I was going out of my mind! Not that I would have ever admitted that to anyone because, after all, it was my choice to keep having babies. But their energy, their "busy"ness, their movement, everything was becoming overwhelming to me in a way I had never imagined. In the weeks leading up to the diagnosis, my nightly prayers would include, 'God please, help me, let something change so I can be a better mom.'

And things did change, in the worst possible way.  The beautiful family of four that I had always wanted was shattered forever.

The morning of Wednesday, April 22, 2009 was like any typical morning. My oldest two didn't have preschool until the afternoon, so breakfast was a lazy feast of waffles and Playhouse Disney. That week everyone in my house had been sick with a tummy bug, so my nerves were already frazzled.  My oldest was still in bed; 'his turn to be sick,' I was thinking to myself, as I let him sleep.  While my 15-month-old was busy destroying the house, I escaped to Facebook.

It became later in the morning, Playhouse Disney still on, every kitchen cabinet emptied, and Lil' C was throwing tantrums. As I took him upstairs to his bed for his morning nap, I realized that one of my five-year-old twins, Joey, was still in bed. He had been up and been to the bathroom, but had returned to bed.  At some point, he had even thrown up on the floor next to his bed.

'Great,' I thought, 'more shit to deal with.'

I attempted to wake him and ask him if he knew he had thrown up on the floor. His answers were slurred and groggy.  He couldn't seem to look at me; instead, looking off to the left of me. And his body was jerking in a way I had never seen before.

It slowly dawned on me that something was seriously wrong, so I called Hubby at work. Choking back tears, I said to the receptionist, "Can you get him?  I think there's something really wrong with our son."

He came to the phone right away; and as I described what was going on with Joey, Hubby slowly suggested maybe I should call the pediatrician.  I kept talking and kept watching Joey's vacant stare and jerking body and realized, 'I have to call 911.'

I hung up with Hubby and dialed.

The minutes that I waited to hear the sirens approach my house were agonizing. But thankfully, Lil' C was asleep and Slim and Knox were zoned out on the t.v., so I could concentrate on Joey and manage somehow to call my dad to come and watch the other boys.

The paramedics arrived and swarmed in - four from the fire truck and two from the paramedic truck- and began to work. First was a barrage of questions for me: did he have any pre-existing medical conditions?  Could he have ingested anything?  Had he recently hit his head?  Had he recently been ill? The answer to all of their questions was no, except for the last one. They concluded that it was probably a febrile seizure. That brought me temporary relief; but then again, I knew he hadn't had a fever. 

My dad arrived while they were putting Joey on the stretcher, and I was relieved I could ride in the ambulance with him. I remember thinking I wished I had my camera because Joey would get a kick out of his ambulance ride once he was better.

En route to the local Children's Hospital, the EMT and I chatted about our kids and preschools until Joey's - what I later learned were grand mal - seizures became worse, and the sirens were turned on.

Once at the hospital more questions. Had he hit his head? Yes, I decided to tell them about his hard fall three months earlier at hockey skating lessons. That had to be it, right?

He was taken to get a CT scan and then, in deadpan, the ER doctor said to me, "Well, bad news, it's a tumor."

My mind immediately started racing. I could still hear the doctor talking; but it was as if he was at the end of a very long tunnel, and I couldn't make out anything he was saying. Instead I was thinking, 'We're supposed to be on a picnic for Earth Day right now, a picnic Joey planned. We were going to clean up the park. How does a little boy who can plan that have a tumor?'

"How does a five-year-old get a brain tumor?" I blurted out, interrupting the doctor. I couldn't wrap my mind around it. The doctor didn't respond. He just turned his attention on Joey once again.

I called Hubby at work and blurted the news to him. There was a millisecond pause, as if he was trying to wrap his mind around it before he said, "I'm coming."

People tend to say that rapid fire, stressful events "were a blur," but I remember every agonizing moment after this. I remember meeting the neurosurgeon, waiting for the biopsy, the details of Joey's ICU room, the parade of nurses and residents, the exact way my stomach felt and how my knees buckled under me when we learned his cancer was inoperable, terminal.

This is something no parent sees coming. Three weeks before his seizure, he was a happy, energetic, creative child with a clean bill of health from the pediatrician who had performed his kindergarten check-up. But yet, there were the excruciating headaches he had gotten at least three times, so severe that he had vomited each time. I wrote them off as migraines or allergies and was just getting ready to call the pediatrician about them, but obviously it wouldn't have mattered. The surgeon surmised that the tumor had probably been growing shortly after birth.

That day two years ago changed our lives forever. Joey lost his battle to the cancer beast on June 10, 2010, so that "crapiversary" is upon us as well. He was just six years old. I feel like there is less laughter and exuberance in our house. I feel like Joey's three brothers don't know what to do without him. And sometimes I feel like his dad and I don't know how to be happy without him.

We go on with our lives because we have to. We find happiness in small places and moments because those are what really matter. I try to shake off the nightmare that became reality, while being paranoid about so many more aspects of my sons' lives that I never was before. I force myself to think positive thoughts about the future, while sometimes feeling as if the family that grew out of my dreams, the family that was once picture perfect to me, has been shattered beyond repair.

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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

10 Tips for Talking to Children About Death

As parents, we have a lot of tools in our parenting toolbox. We know how to stop tantrums and potty train and cook a square meal. But often, when it comes to grief, there is nothing in that box that provides a quick and easy playbook for handling such sneaky jerks as death and terminal illness.

When our son Joey was diagnosed with cancer his brothers were five, three, and one year old. We couldn't even begin to imagine how to explain any of it to them, especially when it turned out that the cancer was terminal. My husband had the foresight to seek professional help; but even so, I'm sure we made some mistakes along the way.

Admittedly, I'm no professional grief counselor. But, in honor of National Childhood Grief Awareness week, I want to share some of the things that we have learned going through the grief process. We still are going through the process. After all, grief is tenacious. It doesn't easily give up, and it rears its head when you least expect it. It comes and goes like waves throughout a person's life. It becomes a constant, a part of the scenery we can either fight against or live with if we have the proper tools.

1. It's okay to say "I don't know why." As parents, we think we need to have an answer for everything. But illness, death, war, and all that other terrible stuff has no good reason for being. It just is. When Joey was in the hospital shortly after his diagnosis, the pastor of our parish visited us. I was steeling myself for the Biblical explanation, the priest's way of explaining that "God has a plan" and all that other crap. Instead, he did the best thing ever: He said to me, "I don't know why this is happening." And then he hugged me and cried with me.

2. Don't avoid questions. Even if you don't have all the answers, it's still okay to talk. I was the mom who avoided all things death with her kids. Even a squashed squirrel in the street would get ignored. I couldn't even say the words dead or death to my kids. On the contrary, animals provide us the perfect opportunity to introduce the concept of death to kids. Yes, that squirrel ran in the street and got hit by a car. Now it is dead. Be simple and straightforward.

3. Do avoid euphemisms. According to Wikipedia, a euphemism is a generally innocuous word or expression used in place of one that may be found offensive or suggest something unpleasant. Many people use terms like "sleeping" or "passed away" or "went to sleep" or "was taken from us" to describe death. These terms can confuse children (If Daddy is sleeping, then he will wake up). Again, be straightforward and truthful: "The tumor in Joey's brain caused his body to stop working, and he died." Teach children that all living things eventually die; and once dead, they are dead forever. 

4. Expect many emotions and fears. The next natural assumption by the child is that he will die or his parent will die. Again, be truthful while calming the fears: "Eventually, we all die. But if we are careful and make healthy choices, we can expect to live a very long life." You may have to have this talk quite frequently. And you may see children exhibiting a variety of emotions from sadness to anger to depression to apathy. Even if your child seems apathetic, he may simply not understand how he is feeling. Or emotions may hit him when he least expects it. Children may be running and laughing on the day of the funeral, but wake up weeks later after a nightmare. 

5. Keep your routine consistent. This is a tough one, I know. Children are actually comforted by routine. At a time when things seem scary and out of control, daily routine can help to start the healing process. It shows children that even though someone we love is gone, our lives are going on and that's okay.

6. Provide opportunities for talk and play. Don't expect your child to talk to you about how he is feeling. He may not even know (some days I don't even know how I am feeling!). Talk about your own feelings and then listen when he talks about his. If he is playing and pretending the person who has died is there, let him play. This is the way kids process their loss. Often at night just before bedtime, our boys will talk about Joey or start to cry for seemingly no reason. That's when we hop in, snuggle up, and tell goofy Joey stories or talk about how our hearts hurt every day now that he is gone. Again, no answers, just empathy. Say the deceased person's name, tell stories, look at pictures. 
That is how we acknowledge our feelings and grieve our loss. And remember, everyone grieves differently. Even though we lost the same person, our grief manifests itself as individually as we are. 

7. Start a new tradition while keeping some of the old. It's good to remember the things we did with our loved ones, especially if they are still relevant in our lives after they have died. But it's okay to start something new, too, particularly if it is something that honors that person. June 10th was just another day before Joey died. Now, it is Joey Party Day. We look at pictures, tell funny stories, go to the zoo, and eat pineapple, Cheetos, and strawberry ice cream - all the things Joey loved. 

8. Keep Heaven out of it. Okay, all the professionals say this, but I'm not sure I agree. I think it is up to you and your belief system. Admittedly, it can get tricky. 'It was in God's plan.' 'God thought it was time.' 'We'll be reunited in Heaven.' Unless you're ultra religious and have the backing of some carefully chosen Bible verses, I would avoid this, too. Our boys all talked about how if Jesus had risen from the dead, why couldn't Joey, too? Our ten-year-old, who self-studies all cultures and religions, honestly doesn't know if he even believes in God. Admittedly the Heaven is for Real book pisses me off as I wonder how these people can make the claims they do. However, I did find myself bringing Heaven into talks as we stood over Joey's grave one day. The boys asked what happened to Joey's body. I answered that it was buried underground, but as Catholics we believe that his soul is with God in Heaven. That invited all sorts of other questions that I just couldn't answer. This is obviously a personal call and a slippery slope. 

9. Let them keep a personal object from their loved one. This one comes from me. Obviously, it's emotionally unhealthy to leave things untouched. But allowing your son to wear his dad's favorite ball cap or my boys to keep some of Joey's stuffed animals is comforting. I will admit that I often sleep with Joey's beloved Stripey Kitten. 

10. Utilize professional help. There are many family therapists, community programs, church groups, and resources available to help a family through their grief (click here for a list of helpful books and websites). Believe me when I say, seek these out. We didn't; and in researching these posts, I wish we would have. 

*          *          *

It's difficult enough to deal with our own grief; but we must remember that when someone we love has died, our children are grieving, too. There is no pretty way to say that grief sucks, but the amazing writer Anne Lamott has put a spin on it that makes it seem like living with grief doesn't have to be all bad. 

What tips have you found helpful for talking with your own children about death? Share below. And if you know someone this post could help, please use the share buttons below. xo

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I Found My Inner Strength with Chicken Soup . . .For the Soul

Longtime readers of Kissing the Frog know that I have been through my fair share of hard things. Icky stuff like cancer and autism and infertility and miscarriage and bed rest and birth defects.

Each of these things has sucked in it's own way; but I can't say any have broken me. No, not even losing my sweet Joey to cancer has broken me. It can't. None of it can. Some days I feel like I don't have a choice but to go on and forge ahead. For my spouse, for my children, for me. 

As someone who grew up living a simple life with an extremely loving and supportive family, I've had it pretty good compared to some other people. Many people have faced challenges that I'll never begin to understand. Since Joey's cancer battle and death, I've begun to say to people that just because I've experienced something worse than you have, it doesn't make your hard thing any less difficult for you. It's all in what we know. It's all in what we know as our personal experience.

I am so honored to be sharing my personal experience in the newest Chicken Soup for the Soul book, Find Your Inner Strength, which is officially on sale today. In my essay, "Bit by Bit," I share how I, along with my family, am healing a bit every day since Joey's loss.

Rawr!

Find Your Inner Strength includes 101 stories of resilience, positive thinking, and overcoming challenges. Included are sections on overcoming self-destructive behavior, fighting health challenges, powering through loss (in which my story is included), moving past disabilities, accepting the new normal, accepting what makes you different, learning to reach out, rising to the challenge, pursuing your dreams, and taking back your life. I cannot wait to read the other stories in this anthology!

Chicken Soup for the Soul has been around for over 20 years. It's tag line - "Changing lives one story at a time" - alludes to their powerful purpose. They allow writers to share their stories in the hopes that they just might change someone's life. You can follow Chicken Soup for the Soul on Facebook and Twitter. You can get your copy of

Chicken Soup for the Soul: Find Your Inner Strength: 101 Empowering Stories of Resilience, Positive Thinking, and Overcoming Challenges from Amazon (this is an affiliate link), from the Chicken Soup for the Soul website , or anywhere books are sold.

OR you can get one from me. I have a copy to give away to a reader who can tell me:

What is the greatest challenge you have overcome and how did you do it? 

The rules are simple:
1. Go to my Facebook page and find the pinned post at the top.
2. Answer the question honestly. Speak from your heart.
3. You will get an automatic "like" from me.
4. The post with the most likes by 10:00 p.m. Central Time Wednesday night 10/29 will win the book. In the event of a tie, I will ask my fellow BlogU planning team bloggers to help decide the winner.
5. I'm only sending the book to residents of the US. Sorry, if I were a famous author I could afford to ship anywhere. Maybe someday. :)

That's it. Good luck finding your inner strength!

*This giveaway has ended. 

Places to Check Before Donating to a Children's Cancer Charity

Shortly after Joey was diagnosed with cancer, we found out that the mom of one of Slim's preschool classmates was planning a surprise fundraiser for us. I didn't know this woman other than the conversations I had with her in the drop-off and pick-up line. She seemed nice, and I accepted her friend request on Facebook.

Hubby and I found out from our friends and family that she had contacted people from my Facebook friends list about helping her put together this fundraiser. She planned a meeting, and thankfully, my brother and sister-in-law went along with a woman from Hubby's office who was also friends with my brother and SIL. They were very suspicious about this woman's motives and told her so. In the end, Hubby called her and said thanks but no thanks, and please stop contacting our family and friends. She promptly unfriended me and I never heard from her again.

Now, I want to believe that she only had good intentions in her heart. After all, why would someone take advantage of a family whose child was sick? While I'll never know her true intentions, sadly there are so many people who will do anything to scam money from people, even if it means taking advantage of people while they are at their most vulnerable.

I think most of us are cautious enough to care for our money, but I also think people are getting sneakier and smarter these days. The Internet provides multiple opportunities for scammers. Look at the prominence of websites such as Go Fund Me and GiveFoward. These sites carefully research each request that comes through and I have personally donated to some causes, but only ones where I knew the people or knew someone who knew them well. I'm sure many rip-off sites have been started based off their premise.

So how do you protect your money when your heartstrings are being tugged, especially during pediatric cancer awareness month? You have to know a little bit about how reputable charities work and choose to give only to them.

Tax exempt status:

Charitable organizations need to have a tax exempt status of 501(c)(3) which means:

"The exempt purposes set forth in section 501(c)(3) are charitable, religious, educational, scientific, literary, testing for public safety, fostering national or international amateur sports competition, and preventing cruelty to children or animals.  The term charitable is used in its generally accepted legal sense and includes relief of the poor, the distressed, or the underprivileged; advancement of religion; advancement of education or science; erecting or maintaining public buildings, monuments, or works; lessening the burdens of government; lessening neighborhood tensions; eliminating prejudice and discrimination; defending human and civil rights secured by law; and combating community deterioration and juvenile delinquency."

According to the IRS, "To be tax-exempt under section 501(c)(3) of the Internal Revenue Code, an organization must be organized and operated exclusively for exempt purposes set forth in section 501(c)(3), and none of its earnings may inure to any private shareholder or individual. In addition, it may not be an action organization, i.e., it may not attempt to influence legislation as a substantial part of its activities and it may not participate in any campaign activity for or against political candidates."

There are very strict laws and requirements and a lot of hoops an organization has to jump through in order to gain this tax-exempt status. The charitable organization needs a governing board, and that governing board needs to meet a required amount of times per year. Operating expenses and budget reports must be submitted and any money coming in and going out is highly scrutinized and tracked.

A scammer is not going to go through all that trouble to apply for 501(c)(3) status. We hope.


Better Business Bureau Accredited Charities:

According to the Better Business Bureau, "an accredited charity is an organization that meets all 20 of the BBB Standards for Charity Accountability based on a review of information and materials provided by the organization. There is no charge to the charity for the evaluation completed by the BBB. Charities are not legally required to submit information and materials to the BBB for evaluation." The 20 standards include the ways they govern their organization, the ways they spend their money, the truthfulness of their representations, and their willingness to disclose basic information to the public. 

Again, to me, any organization that is on the up-and-up will have no problem disclosing their records to the Better Business Bureau. From there, you can decide what is important to you. For example, many of my friends have worked for Alex's Lemonade Stand and love what they are doing for cancer research, funding, and assistance. However, according to the BBB, they are not an accredited organization because they do not meet ONE of the 20 requirements - compensated board members. I have personally been contacted by ALSF in the past, and I would have no problem holding a lemonade stand or donating to their organization. They do meet all 19 other requirements and at least they are being honest and disclosing their reports. 

Check here to determine if a charity you are considering donating to is BBB accredited. 


Federal Trade Commission's Charity Checklist:

The FTC is an independent agency of the United States government whose mission "is the promotion of consumer protection and the elimination and prevention of anticompetitive business practices, such as coercive monopoly." (Wikipedia) In short, they want to help us protect and spend our money wisely. They have studied the practices of charities and know when consumers are being scammed. For example if an organization's name sounds closely like a well-known charity's name, it's probably fake. If a charity refuses to give you detailed information about how it's money is spent, they are probably hiding something. If the charity needs the money in cash or right away, DON'T GIVE!

This page gives detailed information on what to watch out for, signs of charity scams, and what to ask before letting go of your hard-earned money. You can also report a charity scam there.

Other Charity Checker Sites:

Charity Navigator - Evaluates the "financial health, accountability, and transparency" of over 7,000 of America's largest charities (though I was sad to see that no pediatric cancer charities were currently "trending" on their site).

CharityWatch - Has rated over 600 charities. Charities on their "top rated list" generally spend 75% or more of their budgets on programs, spend $25 or less to raise $100 in public support, do not hold excessive assets in reserve, and receive "open-book" status for disclosure of basic financial information and documents to CharityWatch. Charities are given an A-F status according to criteria met (though please note that they ask for a donation to receive a more comprehensive guide to their ratings).

GuideStar - Here you can get up-to-date information, like IRS data, on thousands of non-profits for free. They provide as much information as they can about each charity's  mission, legitimacy, impact, reputation, finances, programs, transparency, and governance.

I also found some more helpful information on what to consider from this New York Times article.

After doing my research, here are some of the top charities related to children's cancer that I would (and have) given my money to that meet all 20 BBB standards, are all classified 501(c)(3), and received 3 or 4 stars out of 4 on Charity Navigator (in alphabetical order): 

Children's Brain Tumor Foundation
Children's Tumor Foundation
CureSearch
Give Kids the World
Locks of Love
Make-A-Wish
Pediatric Cancer Research Foundation
Ronald McDonald House Charities
St. Jude Children's Research Hospital

Here is a runner-up list of charities that are BBB accredited:

Candlelighters Childhood Cancer Family Alliance
St. Baldrick's Foundation

And here are two organizations that seek to do good things that are smaller and closer to my heart:

Donna's Good Things
Team Jack Foundation

and

Alex's Lemonade Stand (which IS 501(c)(3) and is rated 4 out of 4 stars on Charity Navigator).


*Please note, this is just MY opinion, my personal experience with some of these organizations, and MY research. If it is in your heart to donate time or money to a charity, please do it. Just be sure to fully research an organization first before spending your precious time or hard-earned money on their cause. 

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Reflections of 9/11: Life Goes On

*This post was originally published in 2011.

You'd have to be living under a rock - or a seriously cold-hearted person - not to realize or care that today was the 10th anniversary of the worst terrorist attack our country has ever experienced.  It is our generation's Pearl Harbor or Kennedy Assassination.  And just like those before us, we all remember exactly where we were when we heard the news.

I was driving to work listening to our local NBC station on my car radio. I can picture in my mind the precise location of the street I was on when I heard Katie Couric say something about a plane hitting one of the Twin Towers.  What a horrible freak accident, I thought to myself as I turned into my elementary school's parking lot, and prepared to go about my day teaching fifth graders.

I didn't give it another thought until my colleagues began pouring into the school building, and the emerging story came out.  The teacher next door to me kept her t.v. on all day. While my class was at P.E., I sat in her room, grading papers and watching the coverage. A sick feeling came over me as the fact that it was no accident was sinking in.

During lunch, I sought solace in my classroom and desperately tried to page my husband over and over.  We had only been married three months, and he had been doing part of his new residency at a military base near us.  I felt certain that he was in imminent danger.  When I finally heard from him, he reassured me, "Kathy, I am probably at the safest place I could be right now."  The calm in his voice did little to put me at ease.  I proceeded to call my sister who lived three hours away in a neighboring state to tell her I loved her . . . just in case.

Every night that week after work, it was all I could do to curl up in a ball on the couch in our apartment watching in horror all the news coverage, thinking 'We could be there right now...'  During our engagement, Hubby traveled around the country interviewing for residency programs - New York City being one of the possibilities.  In the end, we settled on the program in our city over moving anywhere right after we were married.

One of the many stories that struck a chord with me was that of Howard Lutnick, the CEO of Cantor Fitzgerald, whose firm occupied the 101st - 105th floors of one of the Towers.  He had taken the morning off in order to take his son to the first day of school.  He approached the Tower at the height of all the mayhem.  As people were fleeing the building, he kept asking them, "What floor are you from?"  He broke down as he told the interviewer, "I didn't find anyone higher than the [86th] floor."  He lost 657 of his employees and friends, including his brother - more than any other company and the police and fire departments combined.  However he was villainized in the weeks after 9/11, I will always remember the absolute and total grief in his voice.

By Friday of that week, I was at my breaking point. Hubby came home to find me, on the couch, bawling watching the news coverage.  "How can we possibly begin to raise a family in this world?"  I asked him.

And in his always unwavering logic, he said to me, "Kathy, our parents did it, and so did their parents.  Every generation has a conflict, even a war. And babies are born. And life goes on." Then he hugged me.

And life went on.

We did fly again. And we did get pregnant.  And here we are ten years and five children later.  We even found ourselves living on Long Island for two years.  In 2004, we moved ourselves and our 7-month-old twins so Hubby could do a residency there after all.  I admit I was concerned at first, nervously looking around every time we were in Penn Station or someplace like the Statue of Liberty or the Empire State Building.

But the tragedy didn't keep us from these places.  It didn't keep us from flying, from having children, from living our lives.  And ten years later I found myself riveted to the news coverage once again, reliving all of the tragic stories, crying the same tears.

But ten years later, there are new stories.  There are stories of hope, of new relationships, and of lives going on. This time, some of my tears were those of joy.  Matt Lauer interviewed five young adults, all of whom lost a parent on that tragic day.  He noted that this anniversary must be particularly hard for them.  One of them remarked that this was just like any other day, that she missed her dad every day.  More than this day alone, she thought of him every day.

Wow, I thought, I can totally relate to that.  In the past ten years, we had a beautiful child, and lost that child to cancer.  And I think about him every day.  The day he was diagnosed with cancer and the day he died...yes, those days sting quite a bit, but so does every other day he is not here.

In spite of that tragedy, our lives have gone on.  Most strikingly, in the addition of another child to our family.  Even though I have fears that something will happen to him, that he or one of the other boys will get sick or fall victim to some freak accident, I know I cannot be afraid of that happening.  I can't keep us all in a bubble. 

In the past ten years, people's lives have gone on . . . really, what choice do we all have?  We still all fly for business, but we take vacations, too.  We still work in federal buildings, but we visit historic places as well.  The fact is, we cannot be paralyzed by the fear that something bad is going to happen to us or our loved ones.  Yes, planes crash, diseases are incurable, people go psycho. Bad things happen to people every day, but those are the exceptions rather than the rule.  We should embrace every day not as if it could be our last, but as it is - a gift.  Every morning the sun comes up, and we all are faced with another new beautiful day full of endless possibility. 

As a sheer coincidence, Baby E was baptized today, September 11, 2011.  It was a day of joy and new beginnings.  As my sister-in-law put it to me in so many words, we shouldn't let a person or a disease steal any more moments of joy and happiness from our lives.  Because, in spite of everything bad that happens, life will go on and the good stuff will keep happening, too.
                                                                                                                                                                                   

Full Hearts, Empty Hands on Mother's Day

When people see me with four boys trailing along behind me, they say to me, "You must have your hands full."

Every time.

It has always kind of irritated me. As a new mom with twins, it made me feel like people thought I wasn't handling it well when I knew I was rocking the mom-with-twins gig.

And when I had three little boys under the age of two and was making my way all over a tiny Long Island town with one baby strapped to my chest and two toddlers in a stroller, I wondered what about what I was doing looked like I wasn't handling it.

Now I think it's just what people say because they don't know what else to say. People say a lot of things when they don't know what else to say. Or they don't say anything at all. We can take offense, or we can try to understand that they might not know what to say.

It's the same thing when you're a mother grieving the loss of a child. People get nervous and they just say things - or say nothing at all. When you're the grieving person it can be hurtful sometimes. You don't want to have to tell other people what to say. Like, don't say "everything happens for a reason" or "he's in a better place." Don't even say the hands full thing. Our hearts may be full, but our hands will never be because someone is missing.

We're working hard to handle our grief, and frankly handling your feelings about our grief is not high on our priority list. So, I'm going out on a limb and helping out a little with that. At Seleni.org, I'm talking about what to do and say to a grieving mother on Mother's Day. Click here to read more.

Even though I'm usually the one giving advice, sometimes I need a little reminder, too. That's just what I get quite often from Joey's twin brother anytime I am missing Joey. Slim lets me know that Joey is always with us. He's pretty smart, and you can read his words here on Mamalode.*

For something lighter that every parent can relate to, read Sleeping with the Frenemies  also on Mamalode.

Happy weekend, everyone!

*Seriously, though, I don't know who this Erin Britt person is or why her name is on my writing. 

Unspeakable Joy: A Review of "A Story Unfinished" by Matt Mooney

I just finished reading A Story Unfinished: 99 Days with Eliot by Matt Mooney. I don't think I came across this book by accident.

This is the true story of a young couple, in love and loving life, who find themselves pregnant with their first baby. Around 30 weeks, they receive the devastating news that their baby has a genetic disease that will make birth unlikely and living impossible.

My heart broke dozens of times while reading this book - mostly because I have felt what the Mooneys felt - the excitement of life with a child clouded by the knowledge that life will be short and the excitement will be replaced by sadness. The devastating diagnosis that comes out of the clear blue and the joy that you cling to as you know that every day with your child may be your last.

Matt spoke of crying in the shower, making bargains with God, "Take me and leave him here with his mother." Thoughts of a desperate parent, an already grieving parent.

Matt shares a lot of his faith in this book, and I admire him for that. After Joey was diagnosed, I got angry with God, and I still curse him regularly in my moments of despair. But Matt and his wife, Ginny, made a point of finding the "unspeakable joy" in each of the 99 days they had with their son, Eliot (who was completely adorable in his pictures).

Matt and Ginny went on to have more children (another thing I admire, as I was terrified when I found out I was pregnant with Edgie) and founded an organization called 99 Balloons, named after the 99 balloons that were released at Eliot's funeral.

This book is gripping and inspiring. It left me with the hope that life goes on and can be good even while grieving a great loss.

A Story Unfinished: 99 Days with Eliot is published by Beacon Hill Press and is available for $15.99.



"For the first time, I long for Heaven. I want to be there. I want it worse than any desire I have ever experienced. This world will no longer suffice. I am restless for that which lies beyond. Eliot has revealed the distance from earth to the afterward. He has taken my telescope and fashioned a magnifying glass-and the true distance from here to home has been exposed." ~Matt Mooney

Grief Stories~Kids Say the Darndest Things

Occasionally in this crazy business of blogging, you run across someone who, instead of being a billion computer screens away, is closer than you could ever imagine. Jamie, from the blog Halfway Between Hopes and Dreams, is a fellow Midwest Mama who unfortunately knows about pediatric cancer and losing her oldest child, too. She is striving to live, and encourage others to live, the way her beautiful daughter Addie lived for almost 10 years.

In 2012, my husband and I were well on our way to making our dreams come true. We had three kids, one dog, two cats, two frogs, a new house, and about a half-dozen home improvement projects to go along with it.

Like most people, we didn’t make room in our dreams for cancer. And when it barged into our lives we didn’t plan on it taking our 9 year old. At least not so soon.

But that’s exactly what it did.

On March 20, 2012, Addison (Addie to us) was diagnosed with Acute Myeloid Leukemia. She started running a fever on March 14, which was the same day I found out I was expecting (unplanned) baby #4.

I took her to the ER. The doctor told me it was viral, encouraged me to follow up with a doctor, and let it run its course. We followed doctor’s orders, followed up two days later, and a second doctor told us, “Yep, it’s viral.”

A third doctor ran a blood test.

Leukemia.

Six days later she was gone.

And yet, we’re still here – living, breathing, and trying to figure out how to put it all back together again.

***

If you're a mom, then you've certainly collected your fair share of kidisms through the years. Some make us laugh. Some make us cry. Some make us cringe. It's been my experience that those that make us cringe usually take place while waiting in the checkout line at Wal-Mart, but that's another post entirely.

One of my personal favorites took place in my very own bedroom about three or four years ago. Addie and I were snuggled under the covers watching the 10 o'clock news. It probably wasn't a school night. OK, so maybe it was. Don't judge. Anyway, Rob McCartney was reporting on the latest in a series of robberies. He referred to the suspect as a "serial robber" to which 7-year-old Addie looked at me puzzled and said, "Who'd want to steal cereal?"

It's not as if my steady stream of Facebook fodder ended with Addie's death.

If you've had the pleasure of experiencing the dynamic duo that is Isaac and Tripp, then you know they keep life, umm, entertaining.

"Mom," Isaac said after a particularly trying day. "I just keep forgetting to be good."

Well, they keep it interesting anyway.

 

                                                                              Exhibit A

Exhibit B

 Exhibit C

But the conversations that flow freely at our house might be a bit different than the ones that take place at yours.

The topic of death is a frequent guest at our dinner table. So is God. And Heaven.

You might think that's pretty heavy table talk and I'm sure it raises more than a few eyebrows when these things come up when we're out and about, but really it's not - especially when you have a 3 year and 5 year old involved. It's just...normal, I guess.

Well, normal for us.

There are those that make me laugh:

"Mom, are there TVs in Heaven?"

"Mom, does Addie have an iPad?"

To which I answer, yes.

Yeah, I know, I'm probably going to get in trouble for that, but it's not like I was given a guide book for this.

"How did Addie get up into the clouds?"

You've got to believe me when I tell you I actually explained this one in a way that would make my Sunday School teachers proud, but I'm not sure Isaac and Tripp are buying it just yet.

"I think she probably used a rope or something," Isaac said.

There are those that make me cry. 

Like this one I overheard the other day as the boys paused in a fight over who got to spit toothpaste in the sink first:

"Isaac, when is Addie coming back?" Tripp asked.

"She's not," Isaac answered matter-of-factly.

 "But when is she coming back?" Tripp pushed.

 "She's not."

 "But when..."

 "She's not coming back because she died!"

That's when I decided to step around the corner and into the bathroom.

And that's when Isaac, not wanting to believe what he had just told his little brother, asked me, "How many minutes until Addie comes back?"

And then there are those that, well, I don't know what they make me do:

 

"Mom, I wish we could all go to Heaven so we can be a family again."

 What do you say to that?

 Someday, buddy. Someday.

We are still a family and always will be.




You can connect with Jamie on her blog and on her livelikeaddie page.




*Photos used with permission.
*Feature image via detanan at freedigitalphotos.net