The Secret, Special Powers of the Curious Charlie Shanks

24 Oct

(Prologue: Charlie was the MVP player in his class, and I was supposed to write him a letter or poem or something. I chose something and wrote a story with Charlie as the main character. I thought it would be cool and different. It wasn’t. The story made him cry. Bad mom. )

Charlie Shanks was born Oct. 29, 2004 in Austin, Texas under a full moon, two days before Halloween. Maybe it was because the moon was full or maybe it was because the spirits were restless, but when Charlie Shanks was born something special was born with him.

At first, Charlie’s parents didn’t notice anything different about their son. They, of course, thought he was special because he was their first child. But they didn’t know how special he really was.

When Charlie was only 10 months old, he started speaking in almost complete sentences. He loved to talk. He went to bed talking, and he woke up in the morning talking. All that talking eventually led Charlie to questions.


Charlie had questions. A lot of questions. In fact, by the time he was six years old, most of his conversations started with, “Mom, I have a question.” To which his mother would reply, “Of course you do, Charlie. What’s your question?”

 “Why is the grass green? Who made wax? Why do I have five toes instead of four? What makes the engine of the car start? Who made the first baseball?” The questions were varied, and the questions were many. And the questions came day after day after day. So many questions. So many, that his mom thought she might go crazy.

Then, one day when his mother thought she couldn’t answer one more question, something curious happened. Every time Charlie asked a question, a Halloween costume would appear near him. Sometimes it was a superhero costume. Sometimes it was a scary monster costume. Sometimes it was a child costume, sometimes an adult costume, but with each question came a costume.

Soon Charlie’s house was filled almost top to bottom with strange and unique Halloween costumes. Costumes poured out of Charlie’s closet every time he opened it. Pirate costumes peeked out from under his bed. Ninjas costumes filled bathtub from front to back. Furry animal costumes lined the walls of the hallway. The costumes were everywhere.

Charlie’s mom was sure they couldn’t fit one more costume in the house. She begged Charlie to stop asking questions. She promised him toys. She promised him video games. She promised him anything if he could just go one day without asking a question.

“Why?” Charlie asked. And as quickly as he asked the question, a princess costume appeared on the couch.

“Because,” his mother said very firmly, “we can not fit another costume in our house. Not one more. We have costumes pouring out of every room in our house. Look in our cabinets. There is no room for dishes, just costumes. Look in the bathroom. The tub is so full that I don’t know how we will shower tonight. Look in your bedroom. Can you even find your bed anymore? This is crazy. Even the dog bed is now just a bunch of costumes. Please, please, please Charlie, don’t ask another question.”

But Charlie was a curious boy, and he just couldn’t help himself.

“Why don’t …,” he started.

But his mom cut him off and screeched, “NO! Don’t do it. DO NOT ASK ONE MORE QUESTION. NOT ONE MORE.”

Charlie fell silent for a few minutes. He watched as his mother pulled at her hair and stomped her feet. He sat as she stomped down the hall kicking costumes out of her way. He waited as she calmed down and searched for a pan to cook the family dinner.

And then, when everything seemed normal again, he finished his question, “Why don’t we give the costumes to boys and girls who can’t afford them?”

His mother stopped cooking and peered over at Charlie. He covered his ears with his hands and waited for more ranting and raving. But there was no sound from his mom. No yelling. No screeching. No stomping. Instead, a tear came to his mother’s eye. A wide smile spread across her face. She was proud. So proud that she didn’t even make a sound when one more costume popped onto the kitchen table.

The next day, Charlie and his mother rented a huge red truck and loaded all of the costumes into it. They drove all across town, stopping at every church and shelter they could find. Since it was October, the people were thrilled to receive the costumes. One pastor thanked Charlie and asked him where he got all of the costumes to donate. The corners of Charlie’s mouth curled up and he said, “I was born under a full moon.”

By 8 p.m. that night, the truck was empty, and Charlie’s house was normal again. As Charlie’s mom pulled into the driveway, Charlie glanced over at his mother. She was grinning from ear to ear. Confused, Charlie had to know, “Mom, why …”

And before he finished his question, another costume appeared on the seat next to him.

Epilogue (sent for Charlie’s class)

While this story may not be 100 percent true. (Okay, it’s only about 30 percent true.) It is very true that Charlie is very special and that Charlie loves to ask questions. And while it’s not always easy to answer the multitude of questions that Charlie throws at us daily, it is easy to love this wonderfully, talented, big-hearted curious boy. 


The Challenge

13 Aug

After our toe polishing party last night, and I do mean toe polishing, JoJo asked if he could leave. I said, “Sure,” thinking he was going to the playroom to let his toes dry. He was thinking he would walk out the front door.
Within a few minutes, I realized the house was a little too quiet. I didn’t know where my little guy was. I started to panic. Charlie and I searched the entire house, assuming JoJo was playing one of his hiding games. He was nowhere. Charlie checked the garage. I checked the backyard. Charlie went to the neighbors. I went screaming through the house.

Then the crazies set in. I imagined every possible horrible scenario. I saw Joey losing a battle with a rattlesnake (a legitimate fear in my neighborhood). I saw him hunched down in some stranger’s car crying for me. I saw him floating in a friend’s pool. I saw everything but hope.

My heart lurched into my throat, and the tears started to pour. When Charlie saw my tears, he began to wail. So I had a quick internal talk with my “crazies” and got it together. I assured Charlie that we would find Joey even though I didn’t believe it completely myself. It had been 10 minutes, and even Joey wasn’t that great of a hider. Something was wrong.

As my husband pulled into the driveway, I charged the car and told him I had lost Joey. John, usually quite calm during my hysterics, jumped out of car and started assessing where we had looked. We split up to cover more ground. I ran through the backyard again praying my baby wouldn’t be huddled in some corner dying from a snakebite. John took the house, and Charlie tried a friend’s house a few doors down.

John and I came up empty, and I could see the panic in John’s eyes. I cried more. Then, I heard Charlie screaming down the street, “He’s here. He’s here.”

Joey was not far behind. As soon as he saw my face, he began crying, too.

“Mommy, I told you. I told you I was leaving,” he kept saying as I scooped his little body into my arms. “I told you.”

Joey was scared. My emotions overwhelmed him.

He started crying. And I began to stop.

I tried to explain to him that I thought he was only leaving the bathroom, not the house. Through his tears, he kept repeating, “But, I told you.”

My little guy was transforming into an emotional wreck. He didn’t want to go inside. He didn’t want me to hold him anymore. He just wanted to cry.

So I took it. I told him that I needed to listen to him better, and he needed to help me. He needed to make sure I was listening and understood where he was going to be.

He took that, and we snuggled for a long time on the couch. When he left my arms, the tears welled up again as I thought about how lucky I am. How incredibly lucky I am to have two healthy, loving boys.

This summer has been a challenging one for my patience. Charlie has turned into a teenager over night — rolling his eyes at any of my requests and questioning almost every decision I make. And Joey has been, well, Joey, and that always takes energy. I always tell people Joey has two moods — really happy and really not. It seems “really not” has reared its ugly head a little too often this summer. And in response, I have reared my ugly head – yelling too much and listening too little.

As I stand here writing this (yes, I am writing standing up), I think, “So what? Big deal.” Maybe they both can be little turds, but they are my turds. They are my little guys. And if I let the little stuff go — the eye rolls, the whining, the brotherly spats – if I just let it go and focus on us rather than on one action, we all win.

I can’t imagine losing one of my boys. It is a fear that haunts me daily. It is the sole reason I still have a therapist. Okay, maybe not the sole reason, but a really big one. When my boys are not with me, my creative imagination takes over, and often I am stunted. I am stopped. Then, I chant my therapist’s favorite line, “Everything is okay in this moment,” and I restart myself.

So today, in this moment, everything is okay. I am lucky. I am grateful. And I pray that my experience yesterday gives me strength to faces the little challenges and release them. That it helps me remember to savor every moment — even the ones where I am refereeing a fight between brothers or correcting a son for disrespecting his mother or ignoring a whiney boy who thinks he needs every piece of candy on earth. While the moments may not be easy, they are mine.

A Powerful, Inspiring Force

30 May

My neighbor, Tracy Gillies, passed away Jan. 31, 2013 after a very brief battle with brain cancer. In her memory, we have created a scholarship through Round Rock ISD Partners in Education. The link to the website is: Below is the story I wrote for the website.

It only took a moment for 10-year-old Lauren Gillies to find the words to describe her mother.

“Loving. Funny. Pretty. Wonderful,” the blue-eyed blonde beamed. “She was the coolest mom ever.”

And she was.

Tracy Gillies lived her life for her two girls – Lauren and four-year-old Payton. She made it fun, colorful and most of all inspiring.

Each year for the girls’ birthday parties, Tracy crafted creative themes and executed elaborate plans to make for an “over the top birthday party.”

Lauren’s favorite was her fifth birthday party. Tracy hosted a pool party for Lauren and created an “awesome” birthday cake with a blue jello pool right in the middle of it. Teddy grahams sporting tiny piped-on icing bikinis and little umbrellas topped off the cake.

The following year, super mom Tracy devised a Hollywood themed party for Lauren.

 “We watched a movie on the side of our house, and my mom decorate the whole upstairs like Hollywood,” she said. “We had a red carpet, disco ball, a strobe light. We made our own Hollywood stars. It was so cool.”

For Payton’s third birthday, Tracy picked a zoo theme and brought a petting zoo to their backyard.

“I thought… a bunny, a chicken and maybe a small goat… after the horses and a donkey were unloaded, I think I saw an alpaca in my back yard,” Jerry, her husband, said. “It wasn’t your average petting zoo.”

But average wasn’t how anyone would describe Tracy.

She did nothing small. Nothing without inspiration. She was the planner. Huge, beautifully designed, spectacular plans.

Unfortunately, on Dec. 31, 2012, Tracy and her family were hit with an event she didn’t plan and one she never truly understood. Her family, including her parents and brother, is still struggling to understand today.

“For six months, she wasn’t feeling well,” Jerry said. “We knew something was wrong, but we didn’t know what.”

On New Year’s Eve, the Gillies family got their “what” — an inoperable mass in Tracy’s brain. A few days later, a biopsy showed a Grade 4 Glioblastoma, one of the most aggressive and deadliest brain tumors.

“After the biopsy, everything went downhill fast,” Jerry said. “There was nothing good the doctors could tell us.”

Within a week of the biopsy, Tracy was transferred to a hospice facility. The doctors said the swelling was too intense and the growth of the tumor was too fast. Nothing could be done.

“At that point, she wasn’t aware of everything,” Jerry said. “The tumor took over. She slipped in and out. The tumor devastated her short-term memory.”

Towards the end, Jerry chose a night and spent it with Tracy at the hospice facility. “I told her everything I wanted to,” he said, tears welling in eyes. “I think she heard me, but she couldn’t retain things.”

Tracy passed away quietly on Jan. 31, 2013 – one month after the initial diagnosis.

“She never accepted any of it,” Jerry said. “It was too fast. She lost too much too quickly.”

That is one of the hardest things for Jerry to live with.

“She didn’t get to leave anything for the kids,” he said. “She would have written letters for the girls. She would have planned for them. She would have put every last energy into the girls.”

But this horrible disease didn’t allow for any planning. It robbed Jerry of his young wife, the mother of his children and his best friend of 25 years.

Tracy and Jerry met in high school, but it wasn’t love at first sight.

“I don’t think she really liked me much,” he said. “She was a bowhead who wore Laura Ashley dresses, and I was a meathead who worked out all of time.”

But because of mutual friends, they were around each other quite a bit in high school. And eventually, they found their connection.

“We started talking, and we got closer,” Jerry said. “We would talk through most the night – just in her driveway, talking until the sun came up.”

The two became best friends – virtually inseparable in high school, and after Tracy’s first year in college, they started dating.

“Before love, we were best friends and our friendship bound us and carried us through our marriage,” Jerry said at Tracy’s memorial.

During their courtship, the two wrote hundreds of letters to each other closing each letter with same farewell, “All My Love… Forever.”

“We were an odd match in some ways, but in other ways it really made sense,” he said.

Jerry proposed to Tracy at a bed and breakfast in Wimberley, Texas. He found his inspiration to pop the question from a bench on the front porch that said, “No Decisions Made Here.”

“I knew I was going to ask her to marry me, but I just didn’t know how,” he said. “Then, I saw this bench, and I asked.”

The two were married in 1995 and had their first child, Lauren, in 2002.

In true Tracy fashion, Jerry discovered his wife’s pregnancy in a not-so-usual way.

“She took me to Main Street Grill in the vault room,” he said. “Tracy sat this bag on the table with a pregnancy test in it. I looked at this thing, and I couldn’t figure out why she gave me a pregnancy test.”

Eventually Jerry figured out the bag’s message but didn’t quite believe it.

“Tracy had already taken three tests — all positive,” he said. “But I made her take one more.”

Their first baby girl, Lauren, came home from the hospital to a perfectly decorated room thanks to Tracy’s planning and inspiration.

“Right when she found out she was pregnant, she decided she must go and create this room for Lauren. Professional painters. Matching fabrics. The best of everything. She was planning everything perfectly for this baby,” he said. “She even planned some of her own baby shower.”

As Lauren grew to a toddler, Jerry and Tracy tried to have another child, but after years of trying and even a visit to the fertility doctor, Jerry said he came to peace with the idea of having only one child.

“Tracy was devastated,” he said. “She always wanted two children. She used to pray every night, ‘Please, God, give me a child by the time I turn 40. She was 39 when she showed up pregnant with Payton.” AEI886

Payton was Tracy’s perfect surprise.

Along with raising the two girls, Tracy also ran a successful insurance business. She was good at it, but she lived for her children and husband.

“She set such a high standard in terms of being a mother and wife,” Jerry said. “She always knew what was important to each of us and made sure we had it.”

“Tracy was famous for turning a boring weekday into something special for me and the girls… either with a crazy activity or a special meal,” he said.

For Christmas 2011, Tracy created a date book with 12 months of dates for Jerry and her. “It even included a trip to the gun range for me,” he said.

Knowing her daughter’s love for dancing, last summer Tracy found an Irish dance camp for Lauren. It didn’t matter that the camp was in San Diego. That just meant more planning and more fun for the mother and daughter.

For Payton, Tracy would spend hours playing “dress up” with the four-year-old and talking to her “about love and life.”

Even the week of the biopsy, Tracy was still planning for her girls. She had bought tickets to take Lauren to see Justin Beiber in San Antonio.

“She insisted Lauren go without her,” Jerry said. “She always wanted her girls to be happy and excited.”

But it wasn’t just her family that she took care of.

“She was always going out of her way to help those kids who needed the most,” Jerry said. “She believed whole heartedly that every kid was precious and deserved a chance.”

“Tracy was very much about people,” he said. “She wanted to make sure people were okay. She would drop everything to help someone in need.”

Tracy donated much of her time to school fundraisers, charities like the Sacred Heart Gala and people in need.

“If someone was in need, she was there,” Jerry said. “She used to always say: ‘You never know when you might need help, so be generous.’”

After the memorial service, Jerry said people he had never met spoke to him about Tracy’s kindness.

“They had met her, and she had made them feel warm and welcomed,” he said. “God knows, she could talk to anyone about anything.”

He said she used to go grocery shopping, and then come home an hour later with only three things.

“When I would ask what happened, she would say she ran into someone,” he said. “She would rather spend time visiting with people than doing mundane tasks. She lived life at her own pace.”

It’s been a tough couple of months for Jerry and his girls. In April, the couple would have celebrated their 18th wedding anniversary. On that day, Jerry and girls watched videos of the family.

As he described what he missed most about Tracy, he broke down.

“Her smile. Her touch. Her laugh,” he said. “That laugh. That wonderful laugh. I close my eyes, and I think she’s still there.”

Lauren also struggles with the void left by Tracy’s death.

“I miss having her to talk to,” she said. ‘We used to have long talks at night. She would curl up in my bed and we would talk for hours.”

Payton also feels the loss. While she matter-of-factly talks about her mother’s death – explaining that her mom is now an angel in Heaven, in the middle of the night she often crawls into Jerry’s bed crying for her mother.

Jerry said he tries to live one day at a time, concentrating on the girls and their happiness.

“I can’t look further right now,” he said. “There isn’t a day that goes by that I don’t think of her and cry. I miss her deeply. I worry about the girls growing up without a mother. There is no way I can replace that.”

Instead, Jerry and the girls are discovering ways to remember Tracy, ways to honor her and keep her life story alive. This scholarship will do just that.

“This is something she would have been passionate about,” Jerry said. “She believed in kids so much – whether they were her own or others. She was always a defender of children.

“This scholarship is something that will bring people together for a larger purpose.”

Lauren knows her mother would be proud.

“One night, we were talking in bed and my mom said, ‘If I die, I would want something in memory of me, even it was something little,” Lauren said. “This scholarship is something big.”

Just like Tracy.




Messing Up

30 May

It hasn’t been the best month for me.

A month ago, I started a blog entry that admitted right from the start that “I did it.”

It sounds rather saucy or racy. But it’s not.

It’s really more embarrassing and sad.

Before I could finish the entry, I had another sad moment. Read on …

I did it.

A mother’s worst nightmare.

Okay, maybe not worst, but it’s definitely up there on the nightmare list. Granted, my nightmare list is a little long and dramatic– rattlesnakes, car accidents, lice, kidnapping, murder, mayhem, etc. But this one is on my list. I swear.

I forgot my kid at school.

Actually, I forgot my kid at chess club, which is probably worse because those chess parents are pretty high achievers. High enough to remember their kids.

In my defense, I was really busy at work. It’s not like I was out shopping, getting my nails done or even taking a nap. I was preparing for a high school journalism convention. In the weeds so to speak.

Usually on Tuesdays, I leave work early to get Charlie from chess club, but on this particular Tuesday, I forgot to leave work early. I hopped in my car at my regular time headed to pick up both boys from their after school Kung Fu class.

As soon as I hit the highway, my phone rang.

“Ginger” showed up on called I.D.

“Shit,” I cried.

I knew why Ginger was calling. Ginger is the really sweet volunteer parent who waits with the chess kids until all parents pick up their kids. This particular Tuesday she was waiting for me.

Immediately, Ginger asked if I was okay. She was envisioning a car wreck or horrific traffic.

“I am okay. Just a crappy parent,” I admited. I was at least 20 minutes from the school.

Lucky for me, Ginger is not a lousy parent and she agreed to take Charlie home with her. When I pulled up to her house almost 30 minutes later, I rushed to the door to embrace Charlie and apologize profusely.

Looking back, it might have been a little over the top.

Charlie, who is starting to realize it’s not cool to kiss and hug your mom in front of friends, was not thrilled with my affection, nor with my apologies.

When he got in the car, he asked why I had forgotten him.

Not having a great answer, I mumbled that I was feeling a bit overwhelmed and work was crazy. But that answer was a bit too abstract and ambiguous for my rule-following, structured little guy.

“But why were you late?” he asked again.

“I just messed up,” I said. “I really am sorry. Sometimes moms mess up.”

The answer seemed to satisfy Charlie, but it didn’t satisfy me. I don’t like messing up.
Growing up I was that over-achiever kid who never got a B, never skipped a class, never got in trouble at school. As I grew older and somewhat wiser, I came to accept the fact that I am not perfect and I will screw up from time to time. And usually, I am okay with that.

When I get it wrong at work, I admit it, try to learn from my mistake and move on. But’s it’s not that easy to do when I make a mistake with my kids. I don’t move on well.
And perhaps that’s because it keeps repeating itself.

This week, my little guy, JoJo, finally got a Blue Jay Pride award at school. It was his first and something a parent should witness.

I didn’t.

I forgot.

It wasn’t until I was at work, looking at my calendar, that I realized I did it again. I messed up.

To make up for my mistake, I jumped into my car and sped off to the bakery to buy JoJo a cupcake and some flowers. I took the bribes to his school at lunchtime.

JoJo was quick to forgive as he shoved his sugary treat into his mouth.

I, on the other hand, was not. Am not.

You see, I don’t want to be THAT parent. I had THAT parent. I don’t want to repeat it. I remember what it’s like to be the last kid at school waiting for a parent to arrive. I remember what it’s like to be at an award’s ceremony without anyone in the audience. I remember what it’s like to have a parent who never remembered. And I don’t want my kids to have those memories.

Now, my therapist would tell me messing up makes me human. I know. I know. But I want to be superhuman with my kids. I don’t want them to ever feel left out, left alone or without love.

And maybe that’s not healthy.

When I realized I missed JoJo’s award assembly today, I wanted to punish myself. I wanted to ground me or put me in timeout or something. Something that would help me remember not to do it again.

But the truth of the matter is, I will probably mess up again. I will probably forget again. I am not super human and that stinks.

Maybe the best thing I can do is to teach my kids that I am human, and I will make mistakes. But despite any missed ride, any missed event, I do and always will love them. My mistakes can’t take that away.

Maybe my mistakes will make them more independent and problem solvers.

Maybe that’s the best thing. Maybe.

Our Christmas Elf

9 Dec

Around the holidays two years ago, a good friend of mine introduced me to Elf on Shelf. She said it did wonders for her kids’ behavior during the pre-holiday madness, and everyone had fun, too.

I went to my local bookstore and checked it out.

I was a bit shocked. It was $29.99 for the book and a little, stuffed elf. And, I was expected to move the dang thing every night. That’s one high maintenance elf.

Now, I don’t know about you, but my memory is starting to go. I have very little left by 9 p.m. at night. I almost always forget to be the tooth fairy. Last year, I almost forgot to put out the Christmas stockings. And on a regular basis, I forget to sign my child’s homework sheet.

Remembering to move the damn elf every night would be a monstrous feat for my little brain.

So I got creative and perhaps a little cheap and a lot lazy.

I didn’t buy Elf on a Shelf. At my house, we just have an elf. An imaginary elf I simply made up. His name is Dobie (after Harry Potter, of course), and I NEVER have to move. We never have to find him. I never have to read a book about him. And he was free.

Dobie enters our lives around early December and stays as long as he is needed. When my kids start acting up, I just start a conversation with Dobie.

It really doesn’t matter where we are. Last weekend, we were at Target when Charlie started whining about some toy he needed. I was about to go into my “Christmas is a time of giving, yada yada, yada” when I remembered Dobie. So instead of a lecture, I started a conversation with Dobie. Conversation may not be the best word.

It sounds a little more like this.

“Yes, Dobie. I do see that behavior”

Pause for Dobie’s answer.

“Dobie, that might be a little drastic.”

Pause again.

“Dobie, I really believe he can do better. Let me ask him before you go see Santa.”

The woman in front of me in line surely thought I was crazy. But I don’t care.

Having a few adults think I am crazy is well worth the better behavior from my children.

That is the beauty of Dobie. He’s wherever I need him to be. I don’t have to wait until we get home to have my talk with the Elf on the Shelf. And Lord knows, Dobie and I have had many conversations all around Austin.

Dobie is not all punitive. He sleeps with JoJo on nights that are a bit scary. He went to the church Christmas pageant, and he held Charlie’s hand when he had to have his blood drawn. He even eats dinner with us from time to time.

I know many of you good mothers have the Elf on the Shelf. Every night, you move the little guy, and your kids spend a wonderfully, happy morning looking for the little guy. I applaud you and even envy you a bit.

But for this tired, forgetful momma, imaginary is the only way to go.


Really, Charlie?

4 Dec

While I was at the grocery store this weekend, I almost had a full-blown breakdown on the Christmas candy isle. I can’t say it was my first time to cry about candy at the grocery store, but the tears arrived for a much different reason this time.

On Thursday, Charlie was diagnosed with pre-diabetes. It was not expected. At all. Sure, he eats candy from time to time, but with such a dictator mom, Charlie hasn’t even gotten one-fourth of the way through his Halloween candy.

But there it was – a 5.8 A1C level.

When I first found out, I kept it together much better than when JoJo was diagnosed with his peanut/nut allergy. I didn’t cry. I didn’t freak out. I went straight to the internet and starting researching.

So that is why my almost breakdown took me by surprise Friday night. I thought I had it together. My research showed me that with a better diet and more exercise we could reverse this diagnosis. So I found recipes. I downloaded a food-grading app, and I set out to change our behavior.

Earlier that afternoon, Charlie and I talked about the diagnosis. He understood that if we didn’t get this in check, it could mean shots for him. He embraced his new journey with bravery and determination. He assured me that he could do this new diet.

I was doing okay.

Until I got to the candy aisle.

That’s when the tears welled up in my eyes, and my heart dropped a bit.

I began to question myself. I let Charlie eat too much processed food. Too many carbohydrates. Not enough fresh vegetables. Too much sugar. Too little fiber. I could have prevented this.

It was my fault.

A bit dramatic. I know. When I am in my rational state-of-mind (which isn’t that often), I know that I haven’t been a horrible parent. We hardly ever eat fast food or drink sodas. My child is not fat, and for the most part, we eat pretty healthy.

So what happened?

I wanted someone to blame. Someone that wasn’t me.

John talked with mom about it, and she said she believed that John’s uncle had diabetes. But he weighed more than 400 pounds.

I talked with my sister. We have a cousin with diabetes, but it’s Type 1.

I don’t think I can’t really blame either one of them.

When I go out of town, sometimes John treats (I use that verb very loosely) the boys to Bush’s Chicken. Maybe I could blame that.

Or maybe I shouldn’t blame anyone. I should suck it up and deal with it. My little active guy with his tiny waist and juicy hiney is pre-diabetic.

As I’ve told my friends and family that Charlie is pre-diabetic, they all have had the same reaction: “Really? Charlie?”

He’s not a chubby. He eats most vegetables. And he would rather run outside than play with video games. Go figure.

Maybe he’s not the typical face of pre-diabetes, but it doesn’t change his diagnosis. Expected or not, life will change for us.

This helicopter mom has already succeeded with one new recipe for granola bars. Charlie loves them, and I didn’t put one teaspoon of sugar in them.

So a new journey begins for our family. A journey that will take us on a healthier path and hopefully a happier one too, provided I stay off the candy aisle.


Dinora’s Journey

5 Aug

A few months ago, I wrote about one of the baseball mom who has Stage 4 cancer. Below is her story. We are organizing a 5K fun run for her Oct. 7 in Austin. If you can’t make the run, you can still donate to Dinora and her family. Go to

Six large black words sit atop of the entry way to Dinora and Jason Niedzwiedz’s two-story home in North Austin.

“With God All Things Are Possible.”

A simple statement. A powerful message.

A message Dinora and Jason believe. Completely.

They believe despite the past five years. Despite the pain. Despite the loss. They believe.

And that belief, that conviction, has given them their strength as they fight the cancer that is invading Dinora’s body.

Dinora’s journey with breast cancer is not a short one. And unfortunately, her story doesn’t start with her.

In 1990 at the young age of 42, Dinora’s mother was diagnosed with breast cancer. “It was really shocking,” said Dinora, who was 16 years old at the time of her mother’s diagnosis. “We had no cancer in the family.”

After three long years of treatment, including chemotherapy at MD Anderson that almost killed her, Dinora’s mother was deemed cancer free.

For 10 years, her mother lived a happy cancer-free life. Those 10 years were happy for Dinora, too. In 1992, she left Brownsville and went off to college at Southwestern University in Georgetown on an academic scholarship. Her high school sweetheart, Jason, attended St. Edward’s University on a tennis scholarship, just a 30-minute drive from Dinora. In 1998, the two married and began their life together, welcoming their first child Ethan in 2001.

Then right before Ethan’s first birthday, the 10-years of good health vanished. Dinora’s mother was diagnosed with ovarian cancer and a new fight began.
With her mother having two reproductive-oriented cancers, Dinora’s OBGYN suggested genetic testing for the family.

Dinora’s mother tested first. She had the gene — BRCA 1. Dinora and her brother were next.

They also were positive.

“My mom burst into tears,” she said. “She felt fully responsible. It wasn’t her fault. There was no fault here. She didn’t do anything wrong. There was nothing anyone could have done to prevent it, but she was devastated with the news.”
But Dinora found the silver lining in the brutal news.

“At least we had the benefit of knowing,” she said. “Of course, being a woman, the diagnosis was far more serious for me. Statistically, it meant I would probably develop cancer in my lifetime.

“The hitch at this point in time was that I had a baby (her second son Asher was born in 2005),” she said. “I was still nursing. Jason and I made a decision that by 35 we would have another child or be done with children.”

Then, the couple would do what needed to be done.

But Dinora didn’t get to make that choice at 35. Instead, in March 2007, when she was only 32 years old, she found a “teensy tiny lump” on the side of her breast.
The results from the mammogram and subsequent sonogram were inconclusive. The needle biopsy gave the diagnosis. Cancer. Breast cancer. At the age of 32. Ten years before her mother’s diagnosis at 42.

“The worst part of it was having to tell my mom,” she said. “Part of me wishes I would have spared her that. But I was so grateful that she was there for the first chemotherapy.”

Dinora elected to have a double mastectomy, even though her doctor said she could have a less invasive lumpectomy.

“I told him, ‘Here’s what I need you to do. Take both of them completely. Save nothing. I want them both gone – completely,’” she said. “My boys were 2 and 5 at the time. I didn’t care about boobs. I was not emotionally attached to these things.”

On April 18, a month after the diagnosis and on her ninth wedding anniversary, Dinora had the surgery.

“The cancer had spread to a couple of lymph nodes,” she said. “That meant chemotherapy.”

Over that summer, she had eight chemo treatments of what doctors appropriately call the “Red Devil.” It was part of a three-part regimen known as ACT, which stands for Adriamycin (the Red Devil), Cytoxan and Taxol.

The chemo hit Dinora hard.

“My mom was there for my first chemotherapy at the beginning of May,” she said. “It was such a blessing to have her there. I was such a mess, just a wreck.”

Between the fourth and fifth chemo treatments, Dinora and Jason travelled to Brownsville to spend two weeks with her mother, who was losing her five-year battle with ovarian cancer.

“It was really an amazing time,” she said. “My mom loved Christ with her whole heart. She knew when she died she was going to heaven. We spent those two weeks praying and laughing with her.”

Although her grief was heavy, Dinora said she and her family rejoiced at her mother’s death.

“She wouldn’t be in pain anymore,” she said. “That wretched body that she had would be repaired in heaven. Cancer had eaten everything up. My mom’s spirit outlived her body.”

In August 2007, Dinora finished her chemotherapy. “It was great timing, right before Ethan started kindergarten,” she said.

That winter while undergoing her breast reconstruction, Dinora also decided to have her ovaries removed. “They were not worth risking my life for,” she said. “I wanted to be done with the scalpel before 2007 was over.”

And she was. For almost three years.

Dinora was cancer-free.

Then in 2010, during a routine check up, the doctor found microscopic cancer cells in her lymph nodes. So Dinora and Jason packed the boys up and headed to Disney World before facing chemotherapy again in November.

The cancer was different this time. The first time her cancer was driven by hormones (the reason for removing her ovaries), this time it wasn’t. Doctors called the cancer triple negative, still breast cancer, but different. More chemotherapy and now radiation as an added treatment.

In September 2011, Dinora got the good news– she was NED. No Evidence of Disease.
“That is what every woman with breast cancer wants to hear, ‘You are NED. You found the elusive NED,’” she said.

And for about seven months, Dinora was happy and free of cancer.

But in April 2012, Dinora fell down the stairs in her Avery Ranch home and broke her clavicle. But the break wasn’t the worst news.

When the doctors read the scan from the radiologist, they found Stage 4 metastasized breast cancer. The cancer had spread to her bones, her chest wall, her hip and her right arm.

“When I got the call, I just thought ‘You’ve got to be kidding me,’” she said. “This is not what we were expecting.”

Things are different this time, too.

Dinora is Stage 4. She will always be Stage 4. Even if she and her doctors are able to find the elusive NED, her diagnosis will never change.

“At some point, breast cancer will likely take my life,” she said. “That is what my future holds, and we understand that.”
“I did everything I possibly could have to prevent the cancer from returning. I have no regrets on treatment. But at the same time, we don’t understand. We love Christ, and He has a plan for us. I just wish that plan didn’t include cancer. I have to trust that whatever happens is what is supposed to happen, even if we don’t like it.”

Dinora’s oncologist is taking an aggressive stand against the new cancer. She started Halaven, a new drug that has shown to be very effective. It’s also very tough.

“I had two cycles of it, and it made me really sick,” she said. “I was sick for two solid weeks.”

The doctor didn’t like Dinora’s response to the drug. He stopped it so she could regain her strength. During this time, Dinora also was connecting with a cancer drug trial in San Antonio – a PARP inhibitor drug study. PARP is an acronym for poly (ADP-ribose) polymerase.

“Basically, that drug starves the cancer cells,” she said.

Dinora tried to get into the study when she stopped the Halaven, but the trial wasn’t ready immediately. She had to wait four weeks.

“During those four weeks off chemo, the cancer cells had a party in my body,” she said.

The drug trials couldn’t take Dinora at that point. Too much cancer.

So Dinora made a new plan with her doctor. They are going to try to stabilize the cancer and get Dinora into the study within the next few weeks.

She needs to enter the trial quickly, though. Waiting could mean another “cancer party” which would eliminate her from the study.

“I am approved for the trial,” she said. “Now, it’s just a timing issue. If my cancer starts to flare up or the trial still hasn’t opened at the end of two weeks, it’s back to the grind of chemo, further delaying entry into the trial.”

Dinora and Jason have high hopes for the new drug. The couple has a friend, Renee, who is also Stage 4 Triple Negative and is PARP study participant.

“She is completely cancer free, and she looks great,” Dinora said. “We just pray that the drug works for me like it does for Renee.”

As far as the cost for the trial drugs, Dinora and Jason are unsure.

“Insurance won’t cover it,” she said. “We don’t really know what’s going to happen. We never got to that point when we spoke with researcher.”

This drug is the best plan for her and her family. “We just need it all to fall into place,” she said. “Whatever we have to do.”

While she’s waiting to enter the drug trial, Dinora has a few other things on her plate. In the front yard of her red brick home, stands a “For Sale” sign. The couple put their house on the market this month and is building a new house about seven minutes up the road.

The decision to build a new home was two-fold. In their current house, the master bedroom is upstairs and hiking the stairs several times a day has taken a toll on Dinora.

And, “we just needed something to look forward to,” she said. “We needed to get our minds off of this. I wanted a home that the boys will be happy in with or without me.”

This distraction, as Dinora and Jason call it, has been good for the boys, too. They know their mother’s condition.

“We told them immediately,” she said. “It’s been hard on them. It’s hard to raise children with faith and explain this. They can’t understand why God doesn’t just heal me.”

“We’ve explained to them that it’s not our choice, and remind them that there are so many people suffering in so many different ways. This is a big deal, but it’s not as bad as it could be. That is hard for them to process.”

To help the boys cope, Jason and Dinora keep them busy. The boys play baseball, basketball, attend camps. Usually Jason is coaching and always Dinora is in the stands cheering on her boys.

“I don’t understand her strength,” Jason said. “She hasn’t missed a single game. She won’t show her pain to you. She may have finished chemo on Thursday, but she will be at the game on Friday.”

Dinora explains that she can’t miss anything. “Time with the boys is too precious,” she said.

And while she can’t do everything a young mom can do, Dinora tries to remain an active part of the boys’ life.

The couple said friends and family have eased their burdens with dinners and restaurant gift cards.

“They have all been such a blessing,” Dinora, who is still working part time, said. “It’s been nice to be able to come home from work and not have to cook. I can take a nap and get up and be present. As much as I wish I had the energy, I just don’t.”
But Jason said her energy level is not the typical person fighting cancer. “Di has a regular person’s energy when she’s on chemotherapy,” he said. “She is all over the place.”

Dinora agrees but with a slight edit. “It just takes me a little longer now,” she said.

The cancer is bad. Dinora and Jason won’t argue that. But it hasn’t devastated their family.

“It puts stuff in perspective,” he said.

Dinora’s big brown eyes shine and her mouth curls into a broad smile as she explains that she finds the blessings in the battle.

“The cancer gives me endless patience with my boys,” she said. “I am grateful for every day I have with them. Sometimes Ethan wants to have a 30-minute conversation about Legos. I will listen intently and even ask a few questions. I just really try to enjoy each and every day with them.”

The cancer does get to her sometimes.

“Anytime you are faced with your own mortality, I think certain things go through your head,” she said. “I was watching the Olympics the other night and wondered if this is the last time I will ever see them.”

But Dinora doesn’t get those thoughts often. Instead she tries to focus on the present.

“If it’s in God’s plan, I certainly want to raise my boys, but that may not happen,” she said. “I am super grateful that I married Jason. He will do a great job without me.”

Facing her mortality has been doubly hard because Dinora says she is happy. “I have a very happy life,” she said. “I don’t want to leave my husband. I want to grow old with him. I don’t want to leave my family prematurely.”

“My prayer is that I get to stick around for a long time.”

Through email and phone calls, Dinora also serves as a mentor and sounding board for many women who are currently battling breast cancer.

“I am always happy to answer any questions,” she said. “I’ve never been embarrassed to talk about anything”
“If my story can help someone, then great, I’ll share,” she said.

Dinora has words of wisdom and advice for all women.

“Every woman needs to check herself and trust her intuition,” she said. “If you find something, get it checked out. Do not bury your head in the sand. The consequences are too hard.”
“This is really important. You have to be a bulldog with any diagnosis. We interviewed multiple oncologists, surgeons and plastic surgeons. The hardest thing was trying to coordinate the schedule for the surgeon and plastic surgeon. I called them all of the time. I wanted it done quickly. I pushed. I told them I would call them every day until I got on the schedule. One was so impressed with my tenacity that he offered me a job.”

At 38, Dinora is not done. Not yet. Not even close. Dinora and Jason are going to fight as hard as they can. And pray just as hard.

“Every day I wake up and thank the Lord for today,” she said. “And then, I ask to make it until tomorrow.”