How do you explain Baltimore to a child?

It was one of the those snippets of history that my 9 year old caught sight of on the news.  The images of burning cars, a CVS on fire, people gathering in rowdy crowds so the fire trucks couldn’t do their jobs and watching people throw bricks and rocks at the police officers really impacted all of us.  My son, a cop’s child, curled up in my lap and watched the mayhem.

Ike:  Why are they acting so mean?

Me: Honey, this is just an example of groups of people acting foolishly.

Ike: What does that say on the screen?

Me: Rocks and bricks are thrown at cops in protest.  

Ike: What is a protest?

Me:  Let me see if I can explain…. the law says you can gather together in a peaceful way and protest when you don’t agree with something.  For instance, if your school said NO MORE RECESS for any kid that wears braces, glasses or has special needs, you would be mad right?  (We went through why he would hate that idea) If all the students and parents banned together and surrounded the playground chanting “We want recess for all.”  That is an example of a peaceful demonstration. The news might cover it and the school would have to consider changing their minds the longer parents and kids stood out there.  It gets attention.

Ike: Was this (pointing to the tv) because of something important?

Me:  Yes, a man was killed when he was arrested.  We don’t know exactly what happened but it sounds like the officers made a big mistake in the way they handled his arrest.  The young man had a criminal record but he didn’t deserve to die like that.

Ike: I don’t get it. Is this a protest?

Me: No this is a riot.  People try to mix those words up but it is different.  Remember I gave you the recess example?  Well what if they didn’t just assemble peacefully? What if someone chose to throw bricks at your principal’s car window or through the library windows, beat up one of your teachers because she asked them to stop and then broke in and stole all the books from your library?  Or maybe someone really stupid threw a fire bomb into the cafeteria? Would that help the principals or teachers decide to give back recess?  No, they would call the police, fire department, etc.  The people that did those things only made it worse and would need to go to jail.

Ike: My principal wouldn’t put up with that mess. They would all get ISS or even worse, AEP!  (It struck me as funny that he knew what those consequences meant:)

Me: Sometimes leaders of the community don’t really know what to do or can’t control the people in the crowds.  That is why the police are called in and if it doesn’t settle down, they call the National Guard in too.

Ike: But aren’t these people mad at the police?  This is confusing.  Martin Luther King Jr. protested and didn’t throw bricks.  (I was impressed he knew about this!)

Me:  No. He did it correctly.  He knew violence only made all the sides mad.  

Ike:  I don’t want them to hurt police officers.  There are some good people there right?

Me:  Lots of protestors are good.  They are doing it to make a change. But many times criminals pretend to be mad about something and just use it as an excuse to break stuff and make a mess.

Ike:  There will be more riots?

Me:  Sadly, until Jesus comes there will be lots of hatred going around.  Love always wins.  Remember that.  If you love, you will win in the end. 

Ike looked very sad.  He just curled up in my lap and watched more chaos. I finally turned off the news.  It was a terrible lesson for him.  I wish we all saw the world through a nine year old’s eyes. Maybe we would see a lot more peace and a lot less hate.  

Let the Bridges Burn

I have been on the other side of the table-ARDS, special ed meetings, etc as a teacher.  I didn't realize how hard it was as a parent on "that side of the table".  So let me start by apologizing as a teacher if ever did anything to complicate the VERY hard process of getting the best education for a special needs child.  This is new territory for me, meaning not being the teacher and being the parent of a student with lots of needs. I am caught on a fence about the teacher vs. parent thing.  On one side, I KNOW there are not enough hours in the day to give the kind of education Ikester needs in a traditional classroom setting. However, he needs individualized instruction. And he is MY kid.  So I will bulldoze my way through the systems as his advocate, even if it ticks off my closest teacher friends. He is worth it.  This might mean friendships, bridges that I don't want to burn and being on the "list" (you know the one-that "difficult parent list") but if he can read at the end of it, then so be it.  Let the bridges burn.  I will strike the match.

My youngest can put anything together, has a mind for science, puzzles and is quite musical but he has many learning issues. Ikester has learning disabilities in language arts, reading, and math.  Homework is a nightmare.  School is a struggle. Period.  Although he can read and is very bright, he spends so much time decoding that he doesn't have much comprehension and this bleeds into math and writing.  STAAR test is not even on his radar.  And to set the record straight, it is NOT on mine.  (As I have told many a student, testing is a TINY part of a fraction of your life.  There are so many more important things to worry about.)

 He needs a special kind of instructor every year. (Mrs. M.W...ohhhh God broke the mold with her!  I don't know if he will ever encounter such a match!!! But wow-so thankful for her!) We can't afford tutors or private school.  Because of my cancer, I can't homeschool him. Public school will probably fail him in many ways.

Things most kids take for granted, he has to work at three times harder to master or even slide by.  Reading math word problems, for instance, are horrible. By the time he has decoded the mini-paragraph, he has long since forgotten why or what it is asking him to do.  Thus, math scores plummet.  Writing is another whirlwind of confusion. He has great ideas but can not transfer them onto paper.  A simple sentence halts him in his tracks.  As a reading and writing teacher, this frustrates me to no end.  The three kids before him read with such ease and at such early ages.  On the other hand, he gets Biblical truths deeper than most.  I guess when you look at what affects your eternity, I would rather him understand the Bible than the blasted STAAR test.

It breaks my heart to see him realize that he is different. That is probably the hardest part of all of this.  When he asks if he is a "special needs student", I tell him no.  I say, "Some of the most brilliant minds in history had to take a different route to learning.  That is you.  Just taking a different route."  Since he understands maps, this makes sense to him.  Thank goodness because maps don't make sense to me.

While I loved teaching, there are HUGE flaws in the special ed system as well as the state when it comes to learning.  TEKS (objectives written by the state) are ridiculous and out of touch with the average student, common sense has been tossed out of the window in regards to developmental appropriateness, PE time and recess time stripped away, technical classes are deleted and the ones that suffer are this generation of learners. It is time to get fired up about all children's education, not just the elite learners.

                                            I say let the bridges burn.

Where is my blog?

I have a lot of people who ask me, "Why don't you blog anymore?"  Well, the answer to that is I used to get a lot of feedback on my articles/entries but then the format changed on this blog site.  It made it harder for people to comment.  I also got some private messages both written and verbal that maybe I should not be so serious.  I have to admit, this last one shut me down for several months. Basically, after a blog entry, if I heard anything, it was a "Can you please not talk about......" or "focus on all the good things in your life."  

So here is my response.  I am going to write about whatever I want.  I hope you read it.  I hope you comment.  A lot. I hope you make my thoughts go viral.  (Tweet it, share it, quack it....I love that!)That is a scary thought.

But if you do not want to...there are thousands of fluffy blogs with no real meaning or purpose out there.  Pick one. It will make you feel better.  I write real topics and I try to tell the real truth behind issues I know something about.  Some of my entries are funny or sarcastic. But some are angry.  Because let's face it, life may throw you roses but with roses come thorns.

No more censoring.  No more tiptoeing around hyper-sensitive people. No more dancing around what I believe.  No more keeping Jesus out of the conversation because it might offend someone.  If you ask me a question, I will try to answer it.

Love,

CeCe

Ike’s Field Trip-Coolest Place on the Planet.  

A world according to an 8 year old:) (Creative wording by mom but snippets of quotes from Ike himself!)

My mom took me on a field trip to Sweet Rides. Sweet Rides takes old cars and makes them look new. (Restores them) It is better than the zoo. 

One mechanic did just body work and he was working on several cars. I liked the way he sanded the pieces by hand. He showed me a maroon 1970 Chevy Pickup (I think it was a C10 Stepside) and a  Trans Am  and a Camaro.  But they were just fixing and priming those.  We didn’t see the color of the two last cars. My Mom said she had a 73 Stepside Chevy that she wishes she still had for me. She admitted that she loved to drive her high school friend’s Trans Am. My mom might be cool after all.

Some of the cars that were waiting to be painted had loose parts all over the inside of the car. it looked a lot like my computer. Wires, pieces of metal… so awesome.

The coolest part was the 57 Chevy Bel Air that they had in pieces. The bottom part was in the paint room and they were painting it black.  All parts have to be primed with gray paint before it is painted with color. The body was painted bright blue and was in pieces.  They are putting it together on Monday for the Thanksgiving car show. 

My favorite time of the field trip was the car being painted in the paint room and meeting all the mechanics.  They encouraged me to use my skills to become a mechanic after I finish school.  One of them even invited me to see the Bel Air at the Houston George R. Brown Convention Center Thanksgiving weekend. I am going to start working on my Dad now to get him to take me.  Who cares about turkey when you can look at a Camaro or a Bel Air?  

20+ Things A Cancer Kid Knows By Heart-spin off Huffington Post

20 + Things a Cancer Kid Knows By Heart

by CeCe Benningfield

If my kids could write about my cancer, this is most likely what they would say or things I have heard them say. This is in response to the Huffington Post’s 20 Things A Mom Knows about Cancer. I figured I would flip it. 

•     It is the most earth shattering thing to be told that your Mom has cancer.
• Moms of any age can get cancer.  Even young ones.
• Moms can have a total meltdown in the kitchen and still make birthday cupcakes for your soccer team while having cancer.
• She will puke in a toilet, swallow a mountain of anti-nausea meds and still go to baseball practice with cancer.
• Moms can schedule your dentist appointment, write a novel and make a two page to-do list, all while toting an IV pole with chemo.
• Treatment straight up sucks. Even Moms feel like this.
• You can tell her side effects are bad when she can’t climb the stairs to do five kids worth of laundry.
•     We learn to do our own laundry. 
•     You hate it when you are sick because you know you are putting your Mom at risk. But who can control the flu?  And who can tell your Mom to not sit by your bed with Sprite and crackers and kiss your fevered head?  I’d like to see someone try. 
• Moms can do chemo and then sit through a double hitter in the Texas heat at the baseball fields.
• We don’t go in Mom’s bathroom. She says it is danger zone. Just don’t.
• Sleeping upstairs with your sick parent downstairs teaches you interesting life skills, like waking up on your own to catch the 6 a.m bus, make your own lunch and email your own teacher if need be.
•   It super annoying when people call your mom a hero.  She was my hero before she got cancer.  Cancer doesn’t make you a hero.  It makes you sick. 
•   Some Moms can have the opposite reactions to medications... like for instance, something that makes an adult sleepy might make them get up and clean the house at 2 a.m. Sometimes the meds make them sleep even when they are trying to hear about your day.

•     Scan days are always stressful.  Waiting for the doctor to read them makes your Mom cry no matter what the news. Going to school while you know your Mom is getting results is even harder.
• You realize nothing is as important anymore as getting your Mom well.  How will Dad ever do what she does?
• You'll never forget the first time you see your Mom lose her pretty long hair or when she throws all of her hairbrushes away. 
• We get cancer jokes. Mom yells at the shampoo commercials. No one else would think that was funny but we do.  If she doesn’t get her ice cream at night, she will threaten…”Don’t make me throw the cancer card down.”  We all laugh and give her the ice cream.
• You learn creative terms to try to explain chemo to younger siblings. “Ninja meds” make mom really tired. No, she can’t read to you at night. Oh wait…here she comes. 
• Kids get a crash course in oncology. You learn the stages of cancer and what they mean. Life really sucks when you hear the number four.
•     You brace yourself for the biology assignments when they go into depth about how cancer works.  I just want to throw something at the teacher. Writing essays or journal entries equally suck-“Express your biggest fear” or “tell about a time when you overcame adversity” . No, thanks.  Rather not.
•   Chemo looks different.  Kids know that. It can change forms. Mom has done four different kinds.  We have nicknames for all of them. The Red Devil, the Bad Crap, the Light Stuff, Ninja meds, and the pills. No chemo is the same. No cancer is the same.
•   You learn to look for the “look” between your parents.  It is the look that tells you if something has changed.  A bad scan, a different med, more surgery.  No one else notices.
•   Cancer makes you grow up really fast. People don’t realize you are juggling school, sports, church, friends and social pressures and a sick Mom.  They forget. You don’t.
•   Statistics don't mean a dang thing when it comes to your Mom. God has the last say. Tomorrow is never promised. Your Mom is your steady hand but Jesus is the Rock.

Happy Birthday Sharkbait (Sherry)

Sometimes you have no idea that you NEED a blessing into it busts into your house like a whirlwind.  There are expected blessings and prayed for blessings, but then there are ones you have no idea you are getting. Sixteen years ago today, a blond haired baby girl was born far away from me. I don’t know if she wailed in her first breaths. Maybe she yawned, opened those big blues and looked around only to fall back asleep.  

On her first day of life, I was probably getting my oldest off to school and getting ready for teaching 7th grade.  I wasn’t aware that God was preparing me for a blessing.  It took almost twelve years for me to meet her. She walked into my classroom, head ducked down and barely whispered her name. I recognized the platinum blond hair from her older brother, a former student. She walked in and out of my class for months. I never knew who she would be. 

I never knew God ushered my daughter into my classroom.  Less than two years later, circumstances like a slow moving hurricane washed over us and God whispered to me that she was going to be our daughter even above our storm.  Talk about the dark horse surprise of the decade.  Sometimes adoption works like that. Adoption doesn’t work with a plan-most of the time there is no explanation of how you lose your heart to a stranger.

I was so surprised when not only did she melt into our family without much effort but then stole our hearts just as easily as the four children before her.  

I love the spontaneous bursts of laughter, your Wolverine costume, plots to cream people with cupcakes, letting a rabbit loose in a brother’s bedroom, luring sharks at the beach, skimming over waves and busting your rear end in the sand, or my girl coming out of the kitchen wearing soccer shorts and cowboy boots. I love my camo-wearing, truck driving, goat dragging, patient little girl who makes us smile and shake our heads. 

Happy 16th Birthday Sharkbait. We love you.  You have blessed me.  You have blessed our family.  I love you so much!

School Is COMING!!

I am enjoying my long vacation on the surf and sand. But let’s talk about summer-honestly. Don’t slap your hands to your cheeks in horror over my down and dirty kind of entry. Those of you that know me well, know I practicing humor and not malice!

I love the pool, beach, vacation, less running, but I crave structure. I am secretly envious of my friends that create super structure to summer days. You know the organized souls that still have nap time, reading time, bath times and bedtimes. (I won’t mention any names. You know who you are and are probably smiling like the Mad Hatter right now.)  The most structured thing I do in the summer is take up electronics at 10 pm. and even then it isn’t straight up “10” every night. 

I would love to blame this laziness on cancer, but alas, I cannot. Long before cancer, I fell into the summertime doldrums. I would also love to blame Joe, since he is gone for the summer, but let’s face it I would be like this even if he was home.

Summer habits that start to grate on my ever-loving nerve….

1. the longer and L-O-N-G-E-R nights where kids saunter downstairs or appear in my room like pop goes the weasel at midnight sometimes. Goodness…if you turn on the t.v. or open your computer-they march in. It is what I call the magnet. Too bad that doesn’t happen when I open the dishwasher.
2. the way their heads are bowed over the electronics. I would like to take up the iPhone, iPod, and cell phone and replace it with a book. Wait, that is a great idea!  
3. the way they kind of shrug when I say “bedtime now”. Shrug away-those 6 am buses are going to be a rude awakening next week!  Yes, I make my kids ride the bus and I am still a good parent. 

Be alert, O’ Young Ones. School is exactly 6 days away. I don’t get emotional when my kids start school. (I am anxious for teachers and smooth schedules but them GOING…I have NO problem with!)  I do this really awesome-Tom Cruise-Risky Business-type of dance across the hard wood floors when the last bus pulls away. Doing this dance is completely appropriate when you have five kids and your husband is out of state ALL SUMMER. Even when he is not gone all summer-still OK. Not feeling guilty about finding joy in a quiet house. I find joy in a busy house too. Just a different kind of joy. 

It is really a healthy thing to dance because they are flying on their own. Start your music…let the dancing begin!  WHOOOHOOOO. School is almost here!

Chasing Life and Baseball

The new show Chasing Life has become a favorite in our family.  There are some threads of story lines that I am not crazy about but I love the cancer story line.  VERY real without being in your face.  There is a scene that I love where the best friend of April (the cancer patient) asks her, "Doesn't it feel good for your news to be out there-now your whole family knows.  No more secrets."  April replies something like, "Yeah, now not only do I get to process my cancer but I get to process everyone else's feelings about it too."  That made me laugh OUT LOUD.

Tonight the mother of April had a meltdown and screamed she was angry.  (Angry at April.  Angry at cancer.  etc. )  My son asked me, "Mom do you ever get like that? Angry?"

I told him, "I have secret fantasies about using your bat to break mirrors, lights, and making things shatter."  I think I shocked him.

After he recovered at the mental image of his mother going postal using his baseball bat, he quipped, "Well you wouldn't use my GOOD bat, right?"
No, never the good bat.  We laughed. (Baseball players are pretty particular about their bats.)

I told him I actually get angry a lot.  But I go behind that closed door (pointed to my room) and get mad.  He said he never saw me angry or show emotion.  I assured him that was my job.  I must make it right for him and the kids. I try not to bring my emotions into their lives as much as I can avoid it.

Still...I dream of the bat and breaking things sometimes. Is that normal?

How He Loves

I don't know whether animals go to heaven or not.  Ike asked.  I told him I didn't know.  However, I did point out that God created animals first (before man) and must love them very much.  He lovingly put every stripe on a zebra, pattern on butterfly wings and thought of every color and shape when he created them.  I listed examples.  Ike just blinked back tears.  I also told him I wasn't sure what the Bible said about animals and heaven but I am sure of one thing-He loves his creations.

Today was a rough day.  A beautiful black lab, Rocket, (our neighbor's dog) has been ill.  He chased "duck dummies".  Rocket placed them at a child's feet or let Ike take it out of his mouth easily.  He was a lumbering giant, but so gentle. My son, who has a hard time making connections with people (although he is growing in this area!), fell in love with Rocket.  We have a pet sitting business so over time our friends used our services.  I made sure those "jobs" went to Ike.  He would do the basic duties but played with Rocket for long periods of time too.  Rocket died on Saturday. I just found out today and told Ike, who crumbled before I even finished the sentence.

His reaction kind of surprised me.  For years, my husband and I worried that he felt too little emotion about people or animals.  But Rocket changed him.  (We have 2 dogs-he doesn't really pay much attention to them.) Ike showed love and compassion for this animal.

People make some unfair judgments about Ike.  It may come from stories that I share about him. It might color perceptions about my child. There have been some very hurtful comments through the years about him or his behavior.  Some true and some just spiteful words against a child they don't have a relationship with and don't know at all. I wish they knew the part about him loving Rocket. He also shows the same adoration to the three year old owner of the dog.  Another growing blessing:)

God bless Ike with love for animals.  Let his love for Science and nature grow.  I care less about how well he adds and subtracts and more about how he loves Jesus and all of his creations.  From the least to the greatest-let him love with no limits.

Before You Speak

I stopped by our favorite breakfast diner for breakfast with my youngest daughter.  The waiter asked about my health (he knows me from my dates with Joe-has seen me go from wearing scarves to hair again.).  Cass was sitting right there so I gave him the two-cent, politically correct version. He told me about his friend “Katy” and how she was dying from stage four cancer.  He started to go into detail about how it was in her brain, bones…  I watched my daughter physically recoil. I immediately interrupted him and changed the subject.  We recovered and ate our breakfast chit-chatting about her up and coming new laptop and ordering a book for her on Amazon. 

On the way back from the bathroom, I ran into a former teacher.   (Also a believer.) We caught up for a few minutes and then he said, “I heard through the grapevine you were sick.”  I briefly explained.  BRIEFLY.  (My little girl was at our table across the room.) He was shocked to hear that I had cancer and then asked, “Can I ask you a question?”  I should know when someone prefaces a question with permission to ask it that it is going to be a whopper or serious.  Sure….why not?  Just standing at Denny’s.  

“Are you scared of dying?”

Yes, that is the question I was asked in the middle of Denny’s.  You would think I would be used to that line of questioning but I am not.  My answer has changed in the last two years.  No, I am not afraid of dying.  I know where I am going.  I am afraid of suffering in front of my children and having them watch.  He wasn’t being malicious-I know as a believer he just wanted to know. Since he asked-I answered. 

I made my way back to the table when the waiter stopped me and said, “CeCe, you have to come meet my friend, Katy.  She is here!  I can’t believe it!  I will introduce you! It will make her feel so much better to talk to you.”  By all means, let’s make Katy feel better! I should have protested.  I kind of tried.  (I love this waiter though-didn’t want to make him feel bad.)  But really….just because I have cancer, doesn’t really mean I can handle meeting someone who is dying. It isn’t a sorority I want to be in.  

He propels me to Katy who is sitting three tables from my daughter.  I put myself between the two of them, trying to shield Cass from hearing or reading lips. I shook the frail woman’s hand.  Frankly, she looked like hell. She asked me what kind of cancer was I fighting and then launched into her battle.  I have to confess, I was shell shocked at that point but very aware of the fact that my daughter was walking up behind me.  I was in the process of retreating (Did I mention I wanted to run out of there?) when I realized my little girl was politely standing beside me.  

Cass is probably the classiest kid-she would rather walk on glass than be rude. Since I knew she had caught the cancer connection, I introduced Katy as a “survivor” and a friend of our waiter’s.  To quell the discussion, I added, “She is undergoing treatment too.”  (Hoping this would be a clue for Katy to censor the details.) 

She replied, “Well, the doctors at MDA have ran out of treatments for me.  There is nothing left.”  

I wanted to yell, WHAT THE HELL IS WRONG WITH YOU? SHE IS STANDING RIGHT HERE!!!!!! Manners were gone at that point.  I excused myself as quickly as possible.  So fast, in fact, that I almost forgot to pay.  Cass had to remind me.  I threw the money at the clerk and bolted.

As I final blow I got to go to the dentist where I promptly burst into tears with my dental assistant.  (It was behind closed doors and my mouth was bleeding-side effect.  I lost it.).  She had to stop several times just to let me settle down.  Poor thing. I felt so sorry for her.

This is ironic coming from me-someone who talks so freely but the lesson here is just because I have cancer doesn’t make me bullet proof for random cancer related conversation.  I am very open with my story, but there are limits.

Limit #1)

If you are not a close friend, it is probably not cool to ask “Are you scared of dying?” 

Limit #2) I really don’t want to meet someone that is losing the battle just because we are in the same “club”.  I don’t want the membership. I already have friends that are losing the fight and it is hard enough. Don’t need random strangers added to the list.

Limit #3) Think of Travis drawing the old-Alamo-line in the sand…Do not think the “bare all conversation" is ok in front of my kids. They are polite, beyond words, and they seem like they are hanging in there like champs.  But they are my kids. MINE. They are not adults.  I am the one with cancer but they are the ones that truly deal with it-my little soldiers. 

When you speak ask yourself-

Is it kind?

Is it truthful?

Is it necessary?

Still Here

After 2 years of fighting this cancer, it is weird to say I am used to it.  Chemo has become a way of life to us.  The kids don't really even register that I have cancer anymore. That is a curse and a blessing all in one. There are rather high expectations where my energy is concerned.  The expectations are set upon me by me but my Joe and the kids are guilty of this too.  I won't stop until I literally drop.  I monitor my energy level. I nap before big events or long activities and then I usually plan one day in bed a week. (This does not mean I don't get really angry or depressed sometimes but it kind of like "Oh well...." around here)

Joe is gone until SEPT 3. Yes, I said 3 months.  It will benefit us in the end but right now I feel like I have Satan at all four sides and he is whipping my butt. I am pretty stubborn by nature.  I am trying not to add to my plate (which is full to the brim right now).  Don't worry, I am armed with various weapons-figuratively and literally.

My prayer request is an odd one.  The regular "heal me prayer" is always the first thing I ask for from my friends.  Pray that I am miraculously healed. COMPLETELY.
But my second prayer is that I publish my novel.  I want to leave that as a legacy and a provision for my family.  Some people have relayed to me that this should be the last thing I worry about. Well, I still have dreams cancer can not erase.  If you pray, I appreciate it!

Caged Up Humor:)

Kids see things so different.  Today, during Ethan’s award ceremony, SJH showed a super cute video of the 8th graders.  Total goof balls…..loved it.  It was set to the Katy Perry song, Roar.  The kids danced, held up signs, and just generally acted like fun kids!  Wish I had the money on the spot to buy the dvd but I didn’t.  

Anyway, there was this one part where it showed where the band equipment goes-rows of like giant cages (lockers).  Bigger than my Labrador's huge kennel. In the middle of the video, the kids had gotten in them and were “rattling” the cages.  (Note:  I worked for this school.  ALL CONTROLLED….NO ONE WAS LOCKED IN THEM!!! I repeat no children were harmed in the making of this graduation video!)  

I was laughing so hard.  Ike did NOT find it amusing.  Here is the conversation that followed.

Ike:  Those JERKS…they are putting kids in cages!  (His face was priceless…total outrage.  I tried to keep a straight face.)

Me:  Shhhh….Ike!!  Oh no, honey…..that isn’t…

Ike:  Is that what they DO IN MIDDLE SCHOOL?

Me:  No, it is joke, they aren’t really…

Ike: That’s NOT funny.  Wait, is my brother, Ethan in there?

Me:  No. Honey, no one is in there. No one is in a…

Ike:  Is Zach? (friend of Ethan’s)

Me:  No

Ike: Is Colton? Is Andy? Is Allyn?

 (The list went on and on and by this time the parents behind me were giggling.  Ike’s grave expression was priceless.)

Me:  No (to all).  Ike, it was a joke.  It was just to make the video funny.  

Ike:  Well, it’s not funny and they better not put my brother in there.  You don’t put kids in cages. What is wrong with this school?   

Me:  (Trying to calm him down because he was getting louder and louder and more outraged) Hush.  No one is in a cage.  Oh my gosh. 

Ike mumbled for about five more minutes about the unfair life of middle school students.  

At the end of the ceremony, an administrator (awesome principal who I worked for in the past) spoke and made reference to the video.  I don’t remember his exact words but it was something like “I saw some great dance moves and some not so great dance moves.  I saw some cages.  We don’t have that in high school.”  

We all laughed.  The kids laughed. 

Ike said, “See, he didn't think it was funny either.”  

Classic.  I have laughed all day even though a particular 8 year old still doesn’t see the humor!!!

Ten things I am thankful for....

I am thankful for....

1) feet that are still walking or getting around

2) kids that swing into action when I am sick

3) husband that feeds me ice chips

4) Ambian

5) oncologist that always thinks of what is best for me-not exactly what I want to hear sometimes

6) praying friends

7) My friend traveling through D.C  who sends me emails checking in at random

8) old faithfuls...the friends who have not forgotten I am still in the trenches fighting, who keep reminding me they are praying, thinking of me, etc

9) rain, sweet rain

10) thunder

11) a Mother's Day card in PERFECT Ikester handwriting made all by himself at school.  Goes straight in my treasure box.

12) kids that love me

13) financial steady times (for now)

14) college boy moving back to this area

15) end of school coming up-end of crushing schedules

16) strength to let Joe go for 3 months for training.  

17) a bed and breakfast trip coming up

18) my Jesus being patient with me as I stamp my feet and say "THIS IS NOT FAIR!" 

19) Jesus holding me as I cry, "I am so done with this.  Let me out of this deal, please."  

20) Jesus that gives me rest and assurance that I am His.  

Tag Line Contest

I have very vocal and creative friends SO here is a challenge just for you.  (I am kind of scared to see what you come up with)  I am going to be a columnist for a new digital magazine coming out this summer but I need a "tag line".  2-4 word catchy line that sums up me or my personality. Trying to use alliteration but not sound cheesy. 

Some suggestions have been Boots and Bluebonnets, Gritty Girl, etc.  

I need suggestions because it will be on everything-column tag line, novels that I plan to publish, a website, title of my blogs, etc.  Whoever comes up with the best one I will either use your name in my next novel or put your name in my acknowledgment page when I get published.  Your choice.  

(Rules-nothing with cancer-I am more than that.)

Let the games and fun begin:) Contest on……GO!

Friends

Friendships change, shift, disappear, thrive, morph and reappear. Like most girls, I grew up with friends that I thought I would have forever.  Growing up, marrying and having kids changes your relationships with your friends.  That is natural.  Friends of your teens or early adult years mature at different rates and it is not reasonable to expect to keep EVERY friend you have ever made.

Your true friends show themselves when you are in the trenches.

I was not prepared for was the utter loss of certain friends when I was diagnosed the first time with cancer.  People I thought were my "2 a.m friends" (this is a term used for people you can call at 2 a.m with emergencies-it should be a short list) vanished.  Friends that I considered "good friends",(maybe I wouldn't call them at 2 a.m but they would be there for me in a good times and bad) dropped off the radar really quick.  I mean gone.....never to call or see you again.

For a year or more, I was bitter about this.  Saddened deeply.  Grieved.  It still bothers me, especially if I see those select people.  But I let go of it last month.  At a Beth Moore Bible Study the group was asked to write down something that had scarred or marked them on a notecard (without your name of course) and lay it on the altar.  Symbolically-you are laying it at God's feet and letting go of it. Normally, this type of activity would have made me very uncomfortable.  I don't like touchy-feely kind of moments in public.  But a weight was on my heart that I could not deal with anymore.

You would think with the severity of this illness I would have something else to write on that card, but abandonment was the main word.  Not cancer, not chemo, not surgeries, not even the fear of dying.  It was being forgotten by a handful of people I trusted and loved that marked me the deepest.

In spite of that loss, God filled my life with new friends or stronger ones. Out of the darkest hours, a writing mentor, my Bible study group, church family, high school friends, neighbors down my street and an adoptive online Facebook group became pillars of strength for me.  God supplied them.  Hand picked. They filled in the gaps made by others.  I am so thankful.

Trials always teach humans something.  It teaches us to love or how to be indifferent...be resilient or weak....to be a friend or not. Trials have taught me to be a bit more careful with friends. Value the ones that God supplies.

Panic Attack

I decided to boycott Relay For Life. I also had a cold. So I really didn't feel well, physically.  Relay for Life is supposed to be this really beautiful thing.  But it brings back too many bad memories.  I don't like it.  My kids had to go for school reasons.  Then I realized it was affecting my middle son.  Badly.  So we both boycotted it .  The more I heard about Relay for Life or saw it on Facebook or thought about people being there, the worse it got for me.  It is not rational. I know this event has nothing to do with my cancer but it is linked mentally to me.  I want no part of it.

I moved into a horrible panic attack.  I guess that is what you call it.  It started in the shower where I wailed and beat my fists into the tile.  I was tired of being sick, tired of meds, and tired of not being "normal".  The episode grew into a full blown panic attack. I couldn't breathe, cried uncontrollably, hot face, clawed at my neck of my shirt.....I lost it.  Joe had to literally hold me and pray over me.  I felt the Holy Spirit calming me.  I calmed down somewhat but man, that was the worst I have been in over a year.  I took sleep meds and Adavan and it still didn't calm me down much.  Of course, I had fever too so this was probably adding to the feeling like crap part.

This week means many things to me and now to my kids.  Around Mother's Day/Relay for Life, the past 2 years on May 17, I have been diagnosed with cancer Stage 2 and then Stage 4.  So I guess I am getting more and more aware of what day is coming.  So is the middle son.  Relay for Life just kind of kicks off the week of terror for me.

Today I ran into Mary B. and she gave me two scriptures.  I can't remember them now.  Everything is kind of a blur.  Plus, I am still dealing with this cold/low grade fever.  I attempted to go to baseball today-I didn't last through 2 innings and left.

Right now if I could punch something with my red, burned hands, I would take it out on a punching bag.  If I could run to a beach house-I would disappear for about a week....let's say after May 17.
I am thankful for the pool and sunshine today-although I didn't feel good, I stuck my feet in the cold water and prayed.  (Felt good on my poor feet too).

Processing With A Seven Year Old

While I was tucking in Ike, he noticed the redness of the bottom of my feet.  It prompted a very off the cuff kind of question and answer session between us.

Ike: Mommy, why are you still taking Ninja medicine (chemo)?
Me: Because it is working to kill the cancer cells.
Ike: But I thought you got rid of the cancer.  It's still there? Why?  You lost your hair and everything.
Me: My cancer is a kind of sneaky, tricky kind and it didn't kill all of the bad cells last time.
Ike:  So you have it again? (His voice breaking up)  Mommy....I thought it was gone.
Me:  (I lost it-bawling) I did too honey.

(He crawled up in my lap and buried his head)
After rocking him for a few minutes, I told him this medicine was doing a good job.

Ike:  Are you going to die?  This time...are you gonna die?
Me: Everyone dies.
Ike:  Sometimes babies in Mommy's tummies, old people, like that?
Me: Yes-everyone. I am no different.  One day I will too.  But I'm going to heaven. I love Jesus. He will be so excited to see me. And you, one day.
Ike:  Will you look different?
Me:  I will look better.  My hair will probably be longer.
There was a long pause. I guess he was processing the information again.

Ike:  Will you know me when you get to heaven?  Can I find you there?

Folks, this is probably the hardest conversation I have had to have with someone with the exception of telling my middle son when I was re-diagnosed. Seriously, I could barely breathe as we were talking.

Ike ended it with saying, "Mommy I want Jesus to hold you with his whole heart."
Me too.

Joy

For the most part if I wasn't taking chemo you wouldn't know I had cancer.  I am very thankful for that.  VERY thankful. I have hair, I look normal (still working on the weight I put on with the meds for 2 years), I feel decent and life is moving along.  Fast. The kids have really forgotten that I am still in the trenches.  That is alright.  Let them have a life.  I don't want them to worry about me all the time.  I wish my husband didn't have to either.

People ask me all the time how I am doing.  I am ok.  I have lots of things to be thankful for.  I make lists mentally or write them down.

One thing that has hit me sideways....is when I hear friends of mine are cured/in remission.  (And don't tiptoe around me and not tell me. It is something I have to deal with and get over.) On one hand, I am overjoyed because those words are so hard to get.  I know.  I rejoice over their news.  On the other hand, I try to hold back tears of "Why NOT me, God?" I look at my kids and husband and want so badly to say those words "I am cancer free" and mean it.  Why can't they do the victory dance around the kitchen with great news? Is that normal?  Shouldn't I just be happy for them and not think about my health?

For less than three months, I got to be treatment free. From March until June 2013.  It was a time of growing energy. I actually walked around the block, cleaned my house, weeded flower beds, soaked up sunshine at the baseball fields and felt normal. This doesn't sound glamorous. But it is a beautiful thing when you sleep without help from a pharmacy or when you have enough energy to go up and down the stairs without taking breaks.  It is a blessing when you can drink a glass of wine without worrying "How will this effect my chemo meds?".

In the meantime, what helps? My kids and husband's patience helps. My Bible study group helps. Counseling helps. Sunshine helps. Reading the Bible really helps.

Jesus will heal me.  I just have to wait. Victory dance is coming.

Spring Break

When Spring Break comes around we never travel.  Kind of lame.  But we do clean out closets, rooms, garage, etc  Just a good time to tackle it.  I try to use only 2 days to do this so the kids don't revolt.  But I have never been into clutter or hoarding of any type.  Lately it has gotten worse.

You won't wear it?-It goes
You won't use it? It goes
It doesn't fit? By the time you lose weight to fit into it, it will be out of fashion-toss it
Project unfinished? Finish it
If it is a closet....I am not scared to go in:)

Side Effects Bite

I write this entry to purely educate people.  If you know someone who is undergoing treatment for cancer they may mention a bizarre side effect called Hand and Foot Syndrome?  Much like no chemo is the same, the side effects are vastly different as well. One of the side effects that go with my kind of chemo is Hand and Foot Syndrome.  (Not Hand and Foot Disease-very different.  Kids commonly catch Hand and Foot disease.) 

Hand and Foot Syndrome causes red, peeling and a burned like appearance/feeling on the palms of hands and soles of your feet. The oncologist said all humans have layers of skin and the fibers that hold layers 1,2,3. This kind of chemo get erodes or loosens the fibers. I take Xeloda (7-8 pills a day).  Fatigue worsens with second week as well.  But tolerable. 

I am on a 3 week cycle of Xeloda. First week-not bad.  Second week-gets worse.  Third week, I am off Xeloda but the side effects peak at this point.  Right now I am mid-third week.  The drug accumulates in my system.  Even though I am considered “mild to moderate” with the side effects, this weekend is the worst I have encountered.

Currently, my palms and soles feel like I have second degree burns.  I am hobbling or tenderly limping.  Even though it feels so much better to do so, I can’t go barefooted.  Your skin sticks to things (like the bottom of the shower or tile grout) and can crack, peel off or blister.  I have trouble doing the following with my hands-washing dishes (anything hot), holding/gripping things, twisting ANYTHING, write with a pen (I can do it but it hurts) putting my shoes on or anything that causes me to challenge the dexterity.  Even holding a book in one position for very long makes my skin hurt.  Basically the skin is super tight, like skin that has healed from a burn. Almost a plastic look to it.  I can not stretch my fingers out all the way or make a closed fist.  

Walking around the block would immediately result in cracks (deep ones that bleed) or blisters.  By the way, NOTHING works.  I have tried at least 8 to 10 different balms, lotions, oils, etc.  The only thing that has improved is I am not peeling much.  I religiously use Vitamin E oil and am convinced this is the only thing that has lessened peeling. The pain, redness, burned feeling is still present.  Don’t pitch me a cure-heard it all, seen it or tried it.  Not helping.

I don’t tell you this to incite pity.  Quite the opposite.  I just want to explain why I look “normal” but I am not feeling normal.  Because I am not losing my hair with this type of treatment, it misleads friends and family.  Believe me when I tell you that I am still very much dealing with side effects-you just can’t see them.  Today I lost in it in the church bathroom (right in front of a dear friend and my daughter who happened to walk in….ugh!) because I was in a lot of pain.  

My husband and I joke that I am the great pretender.  I haul butt across Waller County about 50-60 miles or more a day, running kids to practices, goats, games, etc. but then I collapse into a wailing puddle behind closed doors. (And no, until they put my body in the ground I am not slowing down. It doesn’t help the side effects anyway.)  It isn’t every day but often.  Today was one of those days- the wailing puddle part. 

Part of dealing with cancer is physical limitation.  I am limited in many ways right now.  I shudder to use the word-handicapped. But I will be danged if I’m going to stay in bed all day or miss a baseball/soccer game with my kid.  I am not going to miss watching them make their show goats drag tires, or helping them with their homework or a project.  I am not going to stop making costumes or bake cupcakes.  When you stop-you stop living.  When my heart stops beating,I will stop.