Category Archives: Parenting

How I Handle the C Word, Plan to Handle the B Word, and Will Never Handle the S Word

I know the title is long, but I tried to shorten it.  Well, I didn’t try at all, but I thought about it for a quick second.  However, this blog post will be short and to the point.

How I handle the C word
No mother wants to be told that her child has cancer.  Two weeks before my son’s 11th birthday back in June, I learned that what was thought to be a bruise on his leg from falling while running was actually a mass.  A tumor.  Osteosarcoma.  So just how in the hell am I supposed to handle the fact (according to biopsy report) that my child has bone cancer?  That my child has to undergo intense chemotherapy-surgery-chemotherapy treatment over the next few months?  Each chemo admission ranges 2-5 days in the hospital.  On top of all that, my son is already special needs.  He has a rare condition called Tuberous Sclerosis Complex (TSC) and a multitude of other health issues.

My son and I don’t like saying the word cancer, so we say C word instead.  He also says tumor while I say osteo.  Sometimes we don’t say anything at all.  So how am I handling it?  Let’s just say that I’m handling it, that I’ve come a long way since being told the heartbreaking news.

My son standing next to a locomotive at Greenfield Village in Dearborn, Michigan last month. He is train obsessed.

How I plan to handle the B Word
I should have typed word in plural form because this section actually consists of two B words.

The first word is book.  I wrote my first book, Leaving the Hidden Path:  Guidance for Women with Young Kids Considering Divorce.  My original plan was to launch it on August 15th which will be 1 year since my divorce.  All hell broke loose when I learned of my son’s life threatening illness, so I had to put my writing aside for a minute.  I am now making plans to release the book in September.

Now for the second B word.  Let’s see if you can guess the word by looking at the gorgeous lady in the picture below.

Okay, so the gorgeous lady is me.  I am very self-confident so I will always call myself beautiful, gorgeous, pretty, and sexy.  I was having a bad day last year so I called one of my best friends and burst out crying as soon as he answered the phone.  After telling him what was going on, he suggested I get a Bad Bitch shirt  made.  Bad bitch?  I rarely say bad words but it sound like a good idea, so I went to the mall and had the shirt made.  Some people like to mistake a person’s kindness for weakness.  Sometimes you overlook it, but when you don’t, well that’s when you become a bitch.  So I had to learn how to become a bad bitch.  Don’t worry, I’m only one when necessary, lol.

My book’s target audience is women with minor children considering divorce, and it contains examples from my personal life.  That’s where the bitch part comes to play.  I am already anticipating being called that and plenty of other things when I release the book.  But hey, I helped myself out of a situation, and now I want to help other women who may be in the same boat.  Getting called a bitch, or bad bitch, is okay.  It is not the first time I’ve been called one, and I guarantee you it won’t be the last.

How I will never handle the S word
Maintaining my sanity is a bit tricky.  A special needs child newly diagnosed with osteosarcoma (bone cancer) in addition to a long list of other health concerns.  A book about divorce that I plan to launch in September.  Oh yeah, I forgot to mention that a fundraiser is being planned by my ex-husband’s co-workers for our son for next month.  I am still releasing my book next month.  Chaos, chaos, chaos.

The average mom wouldn’t even be able to handle half of what I have been through, and still going through.  But will I ever handle the S word, or my sanity though?  I have no idea.  Some might call me crazy, others will call me supermom or superwoman.  Only time will tell.  But right now, time is telling me to be that bad bitch!

Oops!  I said this blog post would be short didn’t I?  Anyway, I hope you enjoyed this random post as much as I enjoyed typing it.  I just wanted to blow off some steam.

 

Brandon Carr Cares

Brandon Carr reads to students at Dye Elementary School.
Brandon Carr reads to students at Dye Elementary School in Flint, Michigan.

I recall my son rushing home from school last October to tell me that he met Brandon Carr, Dallas Cowboys cornerback and 2015 Walter Payton Man of the Year nominee.

My son, a third-grader at Dye Elementary School in Flint, Michigan, told me that Carr talked to students about the importance of reading, and was giving his school a reading center.  He also told me that students got a chance to meet and talk to Carr.  He even signed a football for my son’s best friend.

This tear-jerking moment was on the news. Brandon Carr became emotional during his talk to students.
This tear-jerking moment was shown on the news. Brandon Carr became emotional during his talk to students.

Carr Cares Foundation is a non-profit organization founded by Brandon Carr.  In an effort to help promote reading literacy in youth, Carr and United Way of Genesee County has teamed up to provide reading centers to three elementary schools in the county.

Reading centers will be provided to:

  • Doyle Ryder – Flint Community Schools District – city of Flint
  • Durant-Tuuri-Mott – Flint Community Schools District – city of Flint
  • Dye Elementary – Carman-Ainsworth School District – Flint Township

The reading centers will contain the following:

  • Nearly 1,000 books for grades PK-3
  • Book cases
  • Listening library
  • Reading themed carpet
  • Colorful bean bag chairs
  • Stereo listening center with 4 headphones

Carr wasn’t able to make it to WinterFest, an annual event in our school district in December, so he sent a video of himself addressing the importance of reading.

He also wanted every child to go home with a book that day, so a table was stacked high with books donated by the Carr Cares Foundation.

One of the books my kids received at Winterfest, donated by Carr Cares Foundation.
One of the books my kids received at Winterfest, donated by Carr Cares Foundation.

Brandon Carr grew up in Flint, Michigan and is a former Dye Elementary student.

To learn more about Carr Cares Foundation, go to http://www.carrcares.org

My Son’s Train Obsession Became His Best Christmas Gift Ever

Two weeks before Christmas my 9 year-old son told me that all he wanted for Christmas from me was for the two of us to ride the Amtrak.

I told him that we could ride the Amtrak for his Christmas present, but that I still wanted him to open something on Christmas morning.  He actually wanted to ride the train on Christmas Day but knowing that nearly everything would be closed, he said I could buy him three books to open.

A train ride and three books was all my son wanted for Christmas.

Tavares, 9, anxiously waits at the Flint, MI Amtrak station wearing a Jr. Conductor hat
Tavares, 9, anxiously waits at the Flint, MI Amtrak station wearing his Jr. Conductor hat

Tavares is the youngest of my two children.  He is a special needs child that was diagnosed with a rare disease called Tuberous Sclerosis Complex before he was two years of age. I came out of denial and blogged about it last year.

My son has a multitude of medical conditions including:

  • Tuberous Sclerosis Complex
  • Autism
  • Several brain tumors
  • Seizure history
  • Developmental delay
  • Renal (kidney) cysts
  • Hypertension (high blood pressure) requiring daily medication
  • Right leg swollen since Memorial Day of last year
  • Behavior challenges (can have aggressive meltdowns)
  • Peanut and tree nut allergy.  Severely allergic to peanuts, cashews, walnuts, and pistachios

With an early childhood education, and ongoing learning and support at school and home, my son has come a long way including:

  • All A’s and one B on current report card (3rd grade)
  • Excellent with numbers, dates, geography, meteorology
  • Vast knowledge of trains
  • Elected to student council last month.  He tied with another student so a tie-breaker vote was held.  Another tie so they both got in!

With all of the above mentioned, how could I not put my child on that train?

When I say that Tavares is obsessed with trains, I mean just that.  I am not talking about just watching trains, he knows the different types and how they operate.  He knows the parts of a train and terminology.  His interest in trains began around two years ago, and he is determined to attend college to study and become a train engineer.

After looking at routes to other cities in Michigan, we decided to leave the state and spend Christmas Eve in Chicago, IL.

Getting ready to board the train at Chicago's Union Station to return home
Getting ready to board the train at Chicago’s Union Station to return home

By the way, did I mention that my son downloaded the Amtrak app on his iPhone last summer?  And that he knows Amtrak can travel up to 150 mph, but that it wouldn’t travel that fast on our trip?  He also knew that our train would start traveling 110 mph once we got to Kalamazoo, MI.  Don’t ask me how he knew that because I have no clue.

The five-hour and some minutes train ride from Flint, MI to Chicago, IL was wonderful.  Tavares wanted to go to the museum in Chicago so we took a taxi to the Field Museum.  The dinosaur exhibit was awesome, and I had a great time at the Ancient Egypt exhibit.  The tomb and mummies were amazing.

Tavares enjoying himself at the Field Museum in Chicago, IL on Christmas Eve
Tavares enjoying himself at the Field Museum in Chicago, IL on Christmas Eve

We Ubered back to Union Station a few minutes earlier than I originally planned because Tavares knew there was an Amtrak merchandise store located inside of Union Station.  In case you’re wondering, yes he bought something.

While I was driving home that night, my son said, “Mom this was the best Christmas present ever.  And do you know what the best part is?  I got to spend time with you.”

Tears rolled down my face just as they are now.

My son is aware of his health issues and he lets nothing stand in his way while pursuing his goals in life.

I am not going to let anything stand in his way either.

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After we played a couple rounds of Uno, Tavares fell asleep shortly after departing Chicago’s Union Station on our return trip home

Your Father is not the Reason for Your Shortcomings

  1. To be such a small dot on the map, the city of Flint, Michigan has a very high crime rate.  Most of the crimes are committed by males.
  2. I have recently read several social media posts from guys talking about their current or past bad behaviors.
  3. There are a lot of men with poor father-son relationships.

What does the above three sentences have in common?

Most of the males blame their fathers for their flaws, or shortcomings.  This blog post will focus on the latter of the three.

As a father, you are a role model for your son.  You are to take over once he leaves infancy and enter the toddler stage.  Your son’s personal growth, emotional development, and masculinity depends on you.  You are supposed to teach him how to be a man.  The more involved you are with your child, the more of a man he will become.

I am sick and tired of always hearing and reading I grew up without a father, my dad wasn’t there for me, my dad wasn’t around, and all the other my dad this and my dad that bullshit.

Last year a male family member told me the reason he does not play with his sons (especially outdoors) is because his father didn’t play with him, and did not show him how to throw a football (when asked why he won’t play ball with them).  Again, BULLSHIT.

Men need to be physically active with their sons.  Play games, hold a race, throw a frisbee.  Don’t just watch them play, get out there and PLAY WITH THEM.  Boys are more active and aggressive than girls, so it’s important that dads get involved in their lives as early as possible in order to foster a healthy father-son relationship.

Encourage and support your son’s choice of play and activities, and participate.  So what if his likes are different from yours.  Remember that he is your son.  He is NOT YOU.

Fellas, if you are on that blame your dad bandwagon then jump off, stop your bullshitting and listen up.  It is never too late to have a meaningful relationship with your son.  Just because your father may not have been there for you does not mean that you have to hinder your own child’s personal and emotional growth.

You are getting a fresh start when you become a father.  Talk to other men about how they spend quality time with their sons.  Attend father-son activities (the YMCA Camp Copneconic in my area hosts weekend overnight family camps including father/son).

My two older brothers were constantly in and out of jail back in the day.  The oldest is 15 years older than me so I don’t know much about him.  But I do recall that he would stay in jail for a long time.  I am talking years.  My other brother is 4 years older than me.  My earliest memory of him getting into trouble was while he was in junior high school.

Our parents separated when I was a child, and to this day neither of my brothers has played the blame the father card.  They were just being boys.

The younger brother always played and roughhoused with his sons.  He also loved model cars and electronics.  Whenever I visited him and his family, they would either be working on model car kits, fixing radios, or wrestling in the center of the floor.  My brother now lives in a nursing home, paralyzed from MS (Multiple Sclerosis).  He spent quality time with his two sons all the way up until he was physically unable to do so.

Whatever the reasons are for your lack of involvement, get over it and teach your sons how to be men.  Teach them how to be a leader and take charge.

If you have social anxiety then seek counseling.  But you don’t have to give all of your money to a therapist when I’m giving you free advice right here and now.

Get your asses up from in front of that Xbox and Playstation and spend some quality time with your child.

As I step down from my soap box, I would like to leave you with this.  Guys, your father is NOT the reason for your shortcomings, especially your lack of involvement in the lives of your son(s).  YOU are the reason.  So grow a pair and use them.

 

Tuberous Sclerosis Global Awareness Day: Denial Ends Here

Today, May 15, is Tuberous Sclerosis Complex (TSC) Global Awareness Day.  And today I come out of complete denial of this rare disease that is affecting the life of my 8 year-old son.  I have always been a private person, but today I’m giving you a rare glimpse inside my personal life.

tscaware3trainthomas      tscaware2traintscaware4trainexpo    tscaware1ball

A few facts about Tuberous Sclerosis Complex (TSC):

  • Tuberous Sclerosis Complex is a rare, genetic disorder that causes tumors to form in vital organs, primarily the brain, heart, kidneys, liver, lung, and skin
  • About 30% of cases are inherited from an affected parent.  The remaining 70% is caused by a gene mutation
  • TSC affects everyone differently.  Some have mild symptoms, others are severe.  Therefore no two stories are alike
  • Around 1 in 6000 babies born are affected by TSC.  More than 50,000 people in the United States have it.  Worldwide, more than 1 million.
  • Behavioral difficulties in TSC can include anxiety, depression, overactivity, restlessness, aggression, temper tantrums (meltdowns), self-injury, social communication difficulties, and sleep problems
  • TSC is the leading cause of epilepsy and autism
  • At least half of individuals with TSC have normal intellectual ability, but may still have difficulties with specific brain skills that can affect daily life functioning
  • Individuals with TSC may have seizures, behavior challenges, developmental delay, and autism
  • Individuals should see a geneticist when first diagnosed.  Other specialties that follow TSC cases are neurology, ophthalmology, cardiology, and nephrology.
  • There is no cure for Tuberous Sclerosis Complex

My son performed age-appropriate activities at first.  He crawled, walked and babbled a few words.  Then my husband and I noticed he went completely nonverbal, and didn’t answer to his name when called.  There was no eye contact.  He also stood close to the tv, and started climbing to high places in the home.  There were other oddities as well.

He was admitted to the Pediatric Intensive Care Unit directly from the pediatrician’s office due to seizures in the waiting room and while being examined.  I didn’t take it well at all being told that my child’s EMG showed seizure activity, and that his head CT scan and MRI both showed brain tumors.  I became so dizzy while the neurologist was talking that I fell from standing back into my chair.

How is my son affected by Tuberous Sclerosis Complex?

  • brain tumors
  • autism (high functioning)
  • behavior challenges, aggressive meltdowns
  • no sense of fear or danger, can’t understand feelings, laughs most of the time when I fuss at or attempt to discipline him
  • renal (kidney) cyst
  • hydronephrosis (fluid on kidneys)
  • hypomelanotic macules – patches of skin lighter than the surrounding skin

My son has come a long way since being diagnosed with TSC at the age of 17 months.  He started attending a special needs school that fall, and was mainstreamed into public school after completing 4 years there.  He regained his speech and is reading at a 3rd grade level (he’s currently in 2nd grade).

My son is also obsessed with trains, geography, and numbers.  Speaking of numbers, I still don’t know how he knows my age and the year I was born, I never told him!

Although it’s a challenge, I wouldn’t trade my son for anything.

For more information on TSC, please visit Tuberous Sclerosis Alliance’s website.  The TSC community is a tight-knit family.  I network with families of TSC worldwide through social media, especially Facebook.  There may even be a state chapter in your area.

Today is Tuberous Sclerosis Complex World Awareness Day.  And today is the day that I end my denial of being the parent of a special needs child.  Up until today, only a select few has known I have a special needs child.  Today, the world will know as I publish this blog post in hopes of helping to spread awareness.

Tuberous Sclerosis Complex.  WE’LL GIVE EVERYTHING.  BUT UP.  That’s the TSC community’s motto, and my family is sticking to it.

I Prefer Autism Over Normal Anytime

BEWARE:  I am in full rant mode right now, and my tongue is explosive.  No holds barred.  Anything goes.  Consider yourself warned.

Last week I worked as a substitute in an autistic classroom, at a school for special needs, of adult students ages 20-26.  Their speech levels ranged from nonverbal to hyperverbal.  Before I left the building for the day, I decided that I would prefer to associate myself with people in the special needs community, especially autism, over the so-called normal people anytime.

Special:  Unusual, unique, exceptional, better.  In other words, different from the usual. 

Normal:  Typical, standard, or what’s expected

So why would I prefer autism over normal?  Well, the entire time that I was inside the school, not just in the classroom, but as I walked through the building interacting with other staff and students:

  • I didn’t see or hear anyone poke fun at someone else
  • There was no gossiping
  • There were no cliques
  • I didn’t hear the ‘R’ word (retarded is not in my household’s vocabulary)
  • Everyone minded their own business
  • Intelligent conversations
  • Extremely smart
  • Problem solvers

So how does that compare to so-called normal people?  Come on now, do I really need to go there?  Since this is a ranting blog post, I’m definitely going there.

As I look back over my K-12 school years, college, and now the workplace, I can see why special needs is called just that, special.  Look at my bulleted list above.  Isn’t that amazing?

Now let’s take a look at my list of qualities of a normal person.

  • Gossip
  • Cliques
  • Ridicule
  • Belittle
  • Hatred
  • Envy
  • Prejudice
  • Discrimination
  • Greed
  • Arrogance
  • Corruption

This list is nowhere near finished, but I just got home from work and I’m tired.  Otherwise, I would type until my fingers get numb.

Can you see why I prefer to associate myself with autistic individuals?  There was a hyperverbal student with a superhero obsession.  For those of you who don’t know, I’m a lifelong comic book nerd, so I was excited to talk with him.  But what I didn’t know was that he was allowed to talk about superheroes at snack time only.  He knew it, but as one of the other teachers said, “They know the new people!”

The students made Valentine’s Day cards.  The handwriting of one of the students’ was perfect, as if she used a ruler and a stencil.  Everything on the inside and outside of that card was positioned perfectly.

I would go on with my bragging about the students at that school, but I don’t want to make us normal people jealous.

My 8 year-old son is a special needs child.  He has a rare condition called Tuberous Sclerosis Complex (TSC).  Those with the disease have a range of issues, including autism.

My son is also autistic.  At one point he lost his speech, but he regained it a few years later.  I met several students at that school, that reminded me of my son.  He is verbal, loud, make sounds, has behavior challenges, and other issues.  But, my son is intelligent.  His obsessions are trains, geography, and numbers (including dates and years).

My son also holds mature and highly intelligent conversations.  Last school year, I closely observed his interaction with one of his classmates at the bus stop every morning.  He eventually stopped talking to that child, because his responses weren’t good enough for my son.  He’s like that with adults too.  If you can’t hold a mature and intelligent conversation, then he will have nothing to do with you.

I kept to myself when I was in school.  I was on the honor roll, and I participated in sports and other activities.  I was quiet and shy.  I had specialty classes in math and science, and most of the students I associated with, when I did talk, were quiet in nature like myself.  No gossiping.  No poking fun at others.  No cliques.  No jealousy.  Intelligent conversations.  We minded our own business.

Hmmm, am I special?  I don’t know, but with the definitions I provided above, and all the smack I ranted about in this blog post, I would say that I am special.  And guess what?  I don’t care.