It's Time for a Change in Direction

 

We were sitting in the pharmacy drive-thru. My head was half hanging out the window of the van, my eyes closed. I could hear the soft bing bongs and bleep bloops of the boys' video games.

 

I was tired. I felt myself drifting off, and then, "Can I help you?"

 

----------

 

Driving off with prescription in hand my fog continued. We were stopped at a red light when it dawned on me: I can't remember what clothes Joey was buried in.

 

I know they must have been green - his favorite color was green - but I can't remember exactly which ones. I know we didn't put shoes on him. The only shoes that fit his swollen feet were his tennis shoes, and I didn't think it was appropriate to bury him in tennis shoes. Besides, no one would see his feet anyway.

 

I searched my brain for the visual of Joey, but all I could remember was touching him in his coffin and feeling his cold, waxy face. I couldn't see what the shirt looked like, but I remember hearing crinkling when I touched it, like Joey had been wrapped in Press 'n Seal before he was dressed.

 

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I'm so tired I can't remember what I buried my son in.

 

I'm so tired I can't complete a task without getting distracted.

 

I'm so tired that my brain is having trouble thinking of the words my mouth wants to say.

 

I'm so tired I can't even be patient with my children.

 

I'm so tired I don't want to spend time with my husband.

 

I'm snapping and negative and yelling. And then I wonder why they talk to each other that way. I'm not too tired to realize they are learning it from me.

 

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I'm tired because my house is a mess. Papers are everywhere. Toys and clothes and junk we don't use anymore have piled up and a house that once seemed big is shrinking from too much stuff.

 

I had a baby a year ago. A year's worth of no time to organize, clean out, start fresh.

 

Now, I have made lists and planned my time and I know what I want to accomplish.

 

But it's not happening and I feel like I am chasing my tail.

 

Chasing it into the wee hours of the night.

 

Falling asleep in a chair.

 

School lunches unmade.

 

Dishes in the sink.

 

The pile of photographs from summer 2011 still sitting unlabeled on the dining room table.

 

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I'm heavier than I have ever been in my life. There is a least fifteen pounds of extra weight around my middle that has no business being there.

 

But I'm too tired to do anything about it.

 

And my treadmill broke and my gym membership expired.

 

My husband asked me if we were still married.

 

I need a girls' night out.

 

He wants a date.

 

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It's all swirling in my head along with the fact that I am doing nothing that I should be doing.

 

Sleeping.

 

Cardio.

 

Yoga.

 

Nourishing my body with healthy food.

 

Starting my novel.

 

Seeking out paid opportunities to write.

 

Spending time with my family before they are all grown up and gone.

 

What I am doing is getting lost. I'm getting lost along a path that I thought I knew. A path I didn't need a map for. A path that came out in a clearing.

 

But somewhere along the way I got distracted by the scenery, led off course to somewhere I thought I should be going.

 

I'm stumbling. I'm drained. I'm flailing. I'm failing.

 

I'm losing myself.

 

And now I need to find my way back.

 

 

 

 

 



"Busted"

Ahh, the sweet innocence of youth. The cute things they say, the way they sweetly tell you they love you.

The way they give away all of your secrets like it's their job.

Look, up in the sky! It's a bird, it's a plane! No, it's the Secret Spillers!

 

 

It's just what kids do. They have no self-control, no filter.

 

Hubby was out of town last weekend, and I accidentally put a piece of wheat bread in his special gluten free toaster. I quickly removed it, but not before one of the boys saw me.

 

And as soon as Daddy walked in the door from the weekend:

 

"Daddy, Mommy put a piece of our bread in your toaster!" He might as well have said, "Mommy is trying to slowly kill you by giving you gluten contamination."

 

I was going to tell him and offer to buy him a new toaster. Geez, give me a chance, Boy.

 

It's not the first time this has happened.

 

"Daddy, Mommy hit a decorative rock by the bank with the van."

 

"Daddy, Mommy has Oatmeal Creme Pies in the glove compartment of the van." (This was when we were trying to eliminate all gluten from the house. What? A girl's got needs.)

 

"We watched t.v. all day. Mommy was on her computer a lot."

 

Honestly, they get their loose lips from me. I can't keep a secret to save my life. I can't complain, either, because it actually goes both ways.

 

"Mommy, Daddy fed the baby bacon."

 

"We ate chips and snacks for every meal while you were gone, Mom. Dad didn't make us eat a single vegetable."

 

"Mommy, we did not get your Christmas present at the jewelry store."

 

I'm glad I'm not the only one who gets busted.

 

 

Do your kids have loose lips, too? Have they ever ratted you out to your spouse or anyone else? Do you have any other thoughts on this Thursday? If they are a secret, don't tell me 'cause I can't promise I won't tell.

 



The "Right" Way to Catch a Runaway Toddler

Today's Thursday thought comes from this guy:

Knox

He is such a great big brother. He maintains the perfect balance of concern, sweetness, bossiness, and annoyance that any older sibling has.

One day, we were all at Slim's speech therapy appointment. While Slim was in the interior room with his therapist, the rest of us were waiting in the outer room. Someone had opened the door to the hallway, and Baby E took off like a shot down the hall.

"I'll get him," Knox volunteered.

Pretty soon he came carrying Baby E back, holding him under the arms, Baby E flopping submissively.

Knox set him down in front of me and said in a very grown-up way, "I caught him left-handed!"

It took me a minute to figure out what he meant was that he had caught him red-handed.

Something Always Brings Me Back

I was awake at 4:00 a.m. the other morning. This is not unusual as Baby E has never been a great sleeper. I don't mind, though. I know soon enough he will wake in the night and not need me to soothe him back to sleep.

 

I know that all too soon those sweet, middle-of-the-night moments will be over, and he won't be my baby anymore. He'll be my little guy, dreaming little guy dreams that don't require Mommy's cuddles to get them started.

 

So, the other morning, when his cries woke me, I went to him right away. And we rocked and we cuddled. And we both drifted back to sleep.

 

Then, somewhere in that hazy place between wakefulness and sleep, I felt a memory of a simpler time. A time when Joey, Slim and Knox were all under three, and we had just moved back to Nebraska after being in New York for two years. A time when the double stroller was my fourth constant companion and trips to the park were a daily outing.

 

I must have smiled in my sleep remembering how we would take walks on the trail next to the park (for Mommy) as two rode in the stroller and the third would be perched on top of the cup holder (held in place by Mommy, of course).

 

You're laughing. Kathy, how was that simpler than cuddling with one little baby?

 

Because it just was. There was time for daily trips to the park. There were daily walks because everyone was portable. It was a time of Playhouse Disney and Curious George and everyone agreeing with everything Mommy suggested.

 

I don't remember it being difficult or complex at all.

 

It was before Sponge Bob and I Carly introduced sarcasm and insults. It was before homework and soccer and Cub Scouts kept us too busy to go to the park. It was before phone calls from the teacher and behavior charts and trips to the behavioral psychologist.

 

It was before cancer and medication and negativity changed us.

 

I thought about it all day, that time in our lives, and it kept me smiling.

 

And then, when I was swapping out a broken picture frame, I found this picture hidden behind a more current one:

Knox (23 months), Slim and Joey (age 3)

 

And it brought tears glistening to my eyes. It was not for Joey's presence in the picture. I actually never liked that picture of him. I remember being upset that he wouldn't put his hands down. It was mostly just seeing the three of them, in the midst of that simple time.

 

But it was Knox, too, and that cherubic face and those huge, innocent eyes. They brought me back to a time when he was happy to tag along like a puppy after his brothers. He was happy simply being "one of the triplets" (as everyone thought they were).

 

Now he's older. Complex. Negativity brewing. Nothing will ever be as simple as walks to the park and brothers playing together. There will be school struggles and girl crushes and self esteem issues and peer pressure and grown-up decisions thrust unfairly at adolescents possibly ill-equipped to handle them.

 

I've read several columns lately, new moms asking if they will survive this time with a newborn. It pains me to know what they have not yet discovered: that this is the easy part. The fatigue, the spit-up, the sore nipples, it will all wan and be a distant memory. What will remain are the cuddles, the smells, the coos, the tiny fingers wrapped around your hand, the fuzziness of baby hair, and the feel of a little head asleep on your shoulder.

 

Memories of watching Sesame Street together for the first time and being delighted when he claps in time with Elmo singing his theme song.

 

Remembering how you felt the first time you saw him dance to Thomas the Tank Engine's theme song or the first time he wrapped those tiny arms around you in a hug.

 

Remembering how you used to cuddle with him until you were both asleep pressed together in his tiny twin-sized bed, sweating from so much heat emanating from such a tiny little body.

 

Remembering how you laughed over his pride of "reading" for the first time, even though the word was totally wrong, but he was just so sure that's what it was.

 

I think that's why older parents always say to "enjoy it now because it goes by too fast." I think we always look back and remember a simpler time than the one we're in now. That's the beauty of parenting. It's the ability to have memories that sustain our todays. To know that however hard today is, there will be something about it that will make us smile someday, even if we can't quite see what it is today.

 

As I sat down to write this, I couldn't find the t.v. remote. Surely my fifth little toddler had hidden it under the couch. When I bent down to look, I found a stash of Knox's toys. After a brief initial annoyance, I smiled as I pulled one treasure after another from under the couch.

 

I remember that Joey used to do that, too. As I sifted through the pile, I smiled as I remembered the first time I pulled a stash like that from under the couch. It's always something.

 

It's always something that brings me back.

 

 

 

What are some of your favorite memories of raising your kids? Are there any you thought were hard at the time that have become fond memories?

Helping Those in Need*

I've been writing a lot lately about Pediatric Cancer Awareness Month. I wish just talking about it and spreading awareness would mean that no more children would have to die. But, sadly, it doesn't.

About 12,060 children will get diagnosed with cancer in 2012. You might know one of them. Facing something as scary as cancer can leave you feeling helpless.

In my Her View From Home post this week, I share ways you can help a family facing this medical crisis with their child:

According to the American Cancer Society, cancer is the second leading cause of death in children younger than 15 years old (after accidents). About 12,060 children in the United States under the age of 15 will be diagnosed with cancer in 2012, and of those, about 1,340 children are expected to die from it.

Despite the fact that childhood cancer rates have been rising slightly for the past few decades, pediatric cancers make up less than 1% of cancers diagnosed each year. Because of major treatment advances in recent decades, about 80% of children with cancer now survive 5 years or more, depending on the type of cancer.

The statistics sound promising, except when you think about the fact that 1,340 families will have to bury a child this year.

And that is 1,340 too many.

In 2010, my family was one of 90 families in Nebraska who lost a loved one to brain cancer. That loved one was our son, Joey, who was just six years old (which happens to be the average age most children are diagnosed with cancer). If you are not familiar with our story, you can read it here or here.

Most of us, thankfully, have never had to face the cancer beast personally. But most of us have heard of other families receiving the dreaded cancer diagnosis. Beyond “thoughts and prayers,” we feel there is little we can do.

Sometimes, though, a little goes a long way.

Here are some things you can do to show your love and support for a family facing a cancer battle with their child:

·        Send a gift card for food, gas or groceries. These families are often running back and forth from doctors’ appointments and treatments. After a long day at the hospital, it’s helpful to pick up food and not have to worry about cooking. And if treatment means travel to a larger city, the gas card comes in handy, as well as access to a quick meal.

·        Organize meals to be brought into the home. Sites like Meal Train and Take Them a Meal make keeping track of meals a snap. Each participant can see exactly what others brought and when, and there are no phone calls to make. The family can also keep track of what is coming and when.

·        Volunteer to run errands. All the little things in life become so unimportant when your child is battling cancer. You run out of milk and toilet paper, your shirts sit at the dry cleaners for weeks, and your pet just doesn’t get groomed. If it’s something little that still needs to be done, offer to do it.

·        If you know the family well enough, show up. Show up at the hospital during treatments to keep the family company or grab them some coffee or lunch. Show up to their house and do some laundry or vacuuming. Take their other children to the park or out for ice cream (they need lots of love and attention during this time, too). Offer to sit with their sick child so they can take a breather. Show up after dinner and clean up the kitchen. Most families hesitate to ask for this kind of help. Just do it for them.

·        Send cards and e-mails and write on their Caring Bridge page. Some days, the last thing a family battling cancer wants to do is talk on the phone. You can still let them know you care. During some of our darkest days with Joey, we would read a comment on Caring Bridge or get a card in the mail at just the right time to give us some hope or something to smile about. And be okay with not getting a response.

·        Help organize and attend fund raisers. According to GiveForward.org, the average out-of-pocket cost for a family with a child battling cancer is over $9,700. Even in cases where health insurance is available, expenses can add up quickly.

·        Participate in walks and races for a cure. The Cure Search Walk is held the first weekend in June in Omaha every year, and Race Against the Odds is a 5K benefiting pediatric brain cancer research.

·        Spread awareness. September is National Childhood Cancer Awareness Month, and September 13^th is National Childhood Cancer Awareness Day. Wear a gold ribbon in support of a family battling cancer with their child.

·       Contact law makers. Let them know that it is not okay that there has only been one new pediatric cancer drug created in the last 20 years.

·        Donate. There are so many great organizations, too many to list. Just Google and find the one that speaks to you.

This is obviously a cause that is near and dear to my heart, so I’m doing my part to help spread awareness and encourage action. Go to Kids V Cancer, Go Gold, and Alex’s Lemonade Stand for more ideas on what you can do to help save a child’s life.

Our family before our 2009 Make-A-Wish trip.

 

Ribbon source

Are there any helpful tips that you would add?

*Edited by the blogger.

We Will Never Forget

This morning on Today, Matt Lauer posed this question to the panel of Today's Professionals (which included Paula Abdul standing in for Dr. Nancy), "Is the attention over 911 waning? Have people moved on?"

Umm, wow. How do you move on from the most horrific act of terrorism on U.S. soil in which over 3,000 people died?

I can see the point. It's been eleven years. College freshmen were only in first grade when this happened, and most of them had probably never seen the Twin Towers anyway.

But does that mean that we have forgotten? That we should just move on?

I was not alive when Pearl Harbor happened or when JFK was shot. But I do remember when the space shuttle Challenger exploded, and I definitely remember when 911 happened. As Donny  Deutsch said, "It is up to parents and educators to keep the spirit of 911 alive." (That may not be the exact quote, but the idea.)

And Starr Jones was right on when she said, "The families have moved through, but they will never move on."

For those of us who have had something horrible happen to someone we love, we spend so much time trying to move through the tragedy, but we will never forget having lived it. We live it over and over and over.

Every anniversary (or as I like to say, crapiversary), every time something similar happens to someone else, every time we hear a story like our own, we remember.

And we do a pretty good job of making sure that no one else will forget either.

Today, at the site of the Twin Towers, only family members will be allowed to speak.

This month, Pediatric Cancer Awareness month, people like me tell our children's stories over and over.

Even someone like Anna, who lost her son Jack in a tragic drowning, tells her story, fresh and still painful, just a year after his accident.

But what we try to do is not drag people down with our words, but rather lift people up. We try to inspire hope that this crazy, sometimes awful world in which we live is not all bad all the time.

In our attempts to remember, that's something we never want to forget.

image source


Will you watch any of the 911 coverage today or attend any services?

Pediatric Cancer SUCKS!

Just to be clear, any cancer sucks. NO ONE wants to hear the dreaded "C" word - not for yourself, for your friend, for anyone in your family, and certainly not for your child.

I know because Hubby and I have heard that word twice. Hubby lost his father to the same type of brain tumor that claimed our sweet Joey's life in 2010 when he was just six years old.

September is Childhood Cancer Awareness Month. I didn't know this three years ago. Three years ago I didn't know anyone whose child had had cancer. I had only heard strangers' stories. I felt a passing sadness for them before I moved on with my day, glad that it was not my child.

But then, in April of 2009, it was my child, and it was the worst kind of cancer possible. The kind that was incurable no matter what we decided to do. The kind that made the doctor insist we draft a DNR (Do Not Resuscitate) for our five year old child because he was not expected to live through the summer.

I felt a constant sickness in my stomach. The sickness that comes from the "this-can't-be-happening" place.

Only it was happening. And Hubby and I had to make some decisions.

We had to decide whether to fight the impossible fight, or to let our child go. How is that a choice? I couldn't fathom not doing everything we could possibly do for our precious Joey. He underwent six weeks of radiation that, along with the placement of the inoperable tumor, made him shake uncontrollably.

Joey at the beginning of his journey.

He began taking steroids to quell the pressure from the fluid around his brain. Fluid that, if it built up, caused him to vomit several times a day. But the steroids also caused extreme weight gain that made it hard for him to move or be comfortable.

Joey, four days before he died.

He also took chemotherapy in pill form and intravenously, as well as other treatments that would help stave off infections and raise blood counts.

Some people call this cruel. If we knew he would die anyway, why would we put him through that? Was it all for our own benefit?

Perhaps. But we also had other children to consider. How could we explain to them that we were just going to let their brother die?

And, there was all that talk of miracles. So many people praying for a miracle for Joey. So many stories of other miracles. So many people with stage 4 cancer that were miraculously cured. Why shouldn't we be able to hope for a miracle for Joey?

We battled for fourteen months. For fourteen months that signed DNR sat on my desk, taunting me into guessing when we would have to use it. Fourteen months of wondering if all the things we had read about children with brain cancer - that they go blind and are unable to walk, talk, eat, or function - would happen to Joey.

In the end, very little of that happened. Joey did lose bladder control, and it was very difficult for him to move. He could still see and eat and talk, although even those small tasks were getting difficult for him.

We never had to use that DNR. The doctor who encouraged us to create it told us that he was shocked that Joey had survived a year.

And the year wasn't all horrible. There are moments from that year that I will cherish until my dying day.

Watching Joey dance with Stripy Kitten to the African music at Disney world.

Seeing him enter kindergarten and work so hard despite feeling miserable.

Listening to him sing Jungle Bells for the family on Christmas day.

His deadpan jokes when we least expected them.

His whispers to me in the dark, "Mommy, I am so your boy."

And believe it or not, holding him as he took his last breath. Losing a child is a horrible, awful thing, but not being with them as they leave this earth must be something that haunts a parent eternally. My only comfort in this terrible situation was that I knew how and when my child would die. Some parents don't get that. They don't get to say good-bye.

According to the American Cancer Society, cancer is the second leading cause of death among children under 15, after accidents.

Cancer and freak accidents...every parent's nightmare.

I wonder, as celebrities gear up for their annual Stand Up to Cancer Benefit on t.v. tonight, why we aren't focusing more on pediatric cancer? Or maybe we are, but I am still hiding in a shell and I just don't know it.

It is still hard for me. It's not hard for me to talk about Joey or to share certain parts of his story. It's hard for me to go to pediatric cancer walks and see the children who are battling or read other people's stories of their current or former battles. It's hard for me to get behind a fundraising cause or promote an issue.

It's hard for me because it makes reliving it again too real and too fresh.

And I'm not fully healed. I don't think you ever fully heal after something like this.

But, I know there are things I can do right now.

I can encourage you to do something about this. I know there are some of you out there who are passionate go-getters, who want to be involved in something that matters. Google it. Google everything you can about pediatric cancer and how you can help. Check out Team Jack, an organization that has been working hard to improve treatments for pediatric cancer. 

Wear a gold ribbon on September 13th, which is known as “National Childhood Cancer Awareness Day" to show your support for a family battling cancer with their child or for a family who has lost their child or for a child you know who is battling right now.

And since it is hard for me right now, until I can fundraise and walk and all that, what I can do is talk about Joey and write about him and ask you to share his story. It's easy. Just pass the link to this blog on to someone else who you think could benefit from it or post it to your Facebook wall or tweet about it.

We "cancer moms" don't share our story because we want pity. We don't want to make anyone else feel guilty that their children are healthy. We don't want accolades for being strong and having grace.

We want our children back.

But we can't have that, so we want to make sure that another mama doesn't lose her child to cancer.

From the website Go Gold:

"Improvements have been made in childhood cancer survival rates over the last few decades. For example, the most common form of cancer in children, Acute Lymphoblastic Leukemia (ALL), went from a 10% survival rate in the 1960's to an 85% survival rate today. However, due to a lack of research funding for new treatments, children today are still being treated with drugs that were developed in the 1960's. Most of the progress has come from increasing the combinations and/or dosages of existing toxic drugs, not from the development of new therapies. Sadly, for the majority of these youngsters, the nightmare of childhood cancer doesn't stop after treatments are completed. Toxic drugs damage and alter healthy, growing cells in their developing bodies, and many survivors experience long-lasting side-effects as a result of the treatments for their cancer. Some side-effects include delayed or disrupted cognitive development, stunted growth, infertility, endocrine dysfunction, learning disabilities, damaged speech and/or hearing, physical handicaps due to nerve damage or amputation, prolonged emotional strain, and difficulty trusting others."

 

Don't just feel a passing sadness about this and move on with your day. Let's do something about this. Not just this month, but every day.

 

 

 

*Dedicated to all families and children battling this beast, but especially to Nate who recently finished treatment, to Andrew and Zach who are battling, and most of all to Donna, Brinkley, and Joey who are playing with the angels and still inspiring us every day.

Never Say Never

Okay, I admit it. I used to be one of those childless moms who judged you when your kids misbehaved, ate crappy food, and talked back to you.

Now that I am a mom? I so get it! And I'm no longer judging you.

I'm at Her View From Home talking about all the things I said I'd never let my kids do that they are totally doing right now as we speak. You can read it here.

If you haven't already done it, "like" both kissing the frog and Her View From Home on Facebook. I promise I won't judge you if you're just getting around to doing it!