Random Thoughts Part 2

Random Thoughts

Okay, here are some of my current random thoughts.  In case you don’t already know, they are in no particular order.  They are as random as this post.

  1. Can you spell niece, receive, necessary, ophthalmology, terrarium, and maintenance correctly without using spell check?  I can’t.
  2. As much Coca-Cola as I drink, my name (La Cracha) should be on some of those bottles.
  3. Did Killer ever make an appearance on the Flip Wilson Show?
  4. Can Perry the Platypus talk?
  5. Does the man with the yellow hat have a name?
  6. WWE needs to utilize Big E Langston in a more productive way other than dancing and frolicking around in the ring with New Day.  I can’t tell you much about their matches because that’s when I take my bathroom and snack breaks.
  7. After all these years, I still can’t name all four ninja turtles.  Not to mention that I currently watch the cartoon series nearly every night on Nick Toons.
  8. Register to VOTE.  And then VOTE.  Exercise your right and get those jokers out of office.  You know, the ones you always put in there by NOT VOTING.
  9. Donald Trump is running for President of the United States.  Did he ever stop hounding President Obama about his birth certificate?
  10. I might vote for Jeb Bush simply because he appears to be the smartest Bush.
  11. If Hillary Clinton becomes president, I hope she puts paddling back into Michigan schools, and lifts the ban on us parents whooping our bad ass kids.
  12. Some people have book sense.  Others have street sense.  But there are some that have no sense at all.
  13. One day I am going to sit in Walmart’s parking lot and count the number of people who enter through the exit doors, even though the entrance doors are propped wide open.
  14. Has anyone ever found their way to Sesame Street?
  15. I am voting for Kanye West in the 2020 United States Presidential Election.

You are more than welcome to add your own random thoughts.

I’m not Asking You About Your Balls

Random Silliness,

ballscakepop

My children and I rode the city bus downtown, just for the fun of it, a couple of days ago.  I was very excited because I hadn’t caught the bus in a little over 20 years.

While enjoying a leisurely stroll through the streets of downtown, we saw the above sign posted inside of a pastry shop.  Surprised, I stopped and read the sign out loud.  Of course my teenage son found it hilarious.  I found it to be a what the hell moment.

We didn’t go inside the shop because I was not about to ask anyone about their balls.  Well, at least not in front of my kids!

Never laugh at the misfortune of others.  You never know when you might be crying over your own.  – La Cracha

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.

Random Thoughts Part 1

Random Thoughts

As always, these random thoughts are in no particular order.  They are just as random as this silly blog post.

  1. Did you take the crust off your bread before eating your sandwich that your mother carefully and lovingly packed for your school lunch?
  2. Pronounce the word Ninjago and count the number of times you are corrected by a child.
  3. I don’t fault the lady that beat the mess out of her son for participating in the Baltimore riot.  I told my son that I would have done the same thing.
  4. Speaking of media attention, I’m sure Bruce Jenner doesn’t appreciate the timing of the Baltimore riots.  It’s taking the spotlight away from his little publicity stunt.
  5. And speaking of Jenner, he was one of my favorite athletes back in the day.  My other favorites include Nadia Comaneci, Jackie Joyner-Kersee, and Flo-Jo.  I was also in love with Carl Lewis and all the other fine-looking black male track athletes, especially the sprinters and hurdlers.
  6. If I was in a position of power, I would put paddling back into Michigan schools.
  7. Come to think of it, I would not want to be a politician.  I’m not corrupt enough.
  8. I would not want to be burglar.  I may break into a home that has the exact same thing as mine, NOTHING.  Such a waste of time.
  9. I would not want to be a racist.  I would get bored with beginning every sentence with, “I’m not racist but..”
  10. I would not want to be a prostitute, hoe, or whatever word you may call them.  I don’t like getting my annual exam, so there’s no way in hell I would be at the doctor’s office several times a year for STD checks.
  11. I would not want to be you.  I am having too much fun being me.

Feel free to comment below with your own random thoughts and babble.

Random Babble

Random Silliness, Random Thoughts

The following list is in no particular order.  It’s just as random as this post.

  1. I would continue to work if I was to win the lottery’s jackpot.  Money is disposable and I can waste it up in no time.
  2. What Neapolitan ice cream flavor do you leave for last?  None for me.  I eat all three flavors every time, and they’re evenly scooped.
  3. If I could be invisible for one day, I would beat the hell out of as many specific people as I can, dating back to kindergarten.
  4. I don’t like odd numbers, however 5 is okay.
  5. Did you believe in Santa Claus as a child?  I didn’t.  My mother never played that game with my siblings and me.  We took pictures with jolly Old St. Nick every year, and we made all the crafts at school.  We were excited about it too.  But we knew he wasn’t real.  My mother never said if he was real or not.  It actually never even came up.  We didn’t care, we just wanted gifts under the Christmas tree.
  6. I’m going to see Cinderella at the movie theater while the kids are at school.  That’s my favorite childhood tale, next to Alice in Wonderland, and The Lion, the Witch, and the Wardrobe.
  7. I would rather be dirt poor than to be a millionaire.
  8. Pronounce the word coupon.  I bet your pronunciation is different from mine.
  9. Would you rather be caught in a thunderstorm without an umbrella, or a snowstorm without boots?  I saw that question on a social media site.  My answer is NEITHER.  I don’t want frostbite and my feet amputated.  And there is no way in hell I would be caught in a thunderstorm without an umbrella.  I have hair of black texture.  Therefore the only time I allow my hair to get wet is when I’m at the shampoo bowl at the hair salon, every two weeks.
  10. If I could go back into time, I wouldn’t.  There are some events in my past that I do not want to revisit.
  11. I never stopped watching cartoons.
  12. Do you say hundred or hunerd?  What about refrigerator or refriderator?
  13. Is foots a real word?  What about fishes?
  14. Facebook IS NOT the news.  Get yourselves together people.  Watch your local news channel, then spend some time watching CNN.
  15. How many minutes and miles would you have to walk to burn off a medium big mac meal (fries, coke), a fun size Snickers candy bar, and two Hershey Kisses?  That question was a part of the wellness quiz at work.  Employees submitting the correct answer will have their names entered into a raffle for a gift card.  I have no idea what the answer is, but I know that I would have to walk MORE than the answer to that question because I eat FULL-SIZE Snickers and DOUBLE DIGIT Hershey’s Kisses, in addition to that big mac meal.
  16. Superpowers I wouldn’t mind having:  flight, shape shift, telepathy, teleportation, animal control,  healing factor, mind control, invisibility, superhuman speed, superhuman strength, x-ray vision, duplication, and sonic scream.
  17. If I had a magic wand, or found a genie in a bottle, I would wish for all of my debts to get paid.  I would not want the money, because I would NOT pay any creditors.
  18. Speaking of magic wand, my nephew was in grade school when Harry Potter and the Sorcerer’s Stone was released in movie theaters.  He told me he didn’t want to see the movie because Harry Potter looked as if he liked science, because he wore glasses.  So I told him that he didn’t like me then because I wore glasses, and had been wearing them since the fourth grade.  He didn’t really believe me because I didn’t wear my glasses often back then.  I also like science, but I didn’t dare tell him that.
  19. I counted the number of people I know that I can confide in on one hand.  That number is less than five.
  20. I still do not like Peter Parker.

I would type more but I’m about to eat more than a serving size of lemon Oreos and drink a glass of icy cold Coca-Cola.  Feel free to add your own random thoughts and babble.