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

Parenting, Uncategorized, ,

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

Before you open up your mouth to complain, ask yourself if it’s truly worth it. – La Cracha

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.

I will not be engaging on social media sites on New Year’s Day.  I do not want to read everyone’s New Year’s resolutions that will get broken, as soon as the words leave your mouths.

My Solo Vacation Out in the Rockies

Uncategorized, , , , , ,

I had been threatening my family with a solo vacation for the past four years.  With mounds of stress laughing at me while weighing down my shoulders, not to mention I’m the only female in my household (husband and two sons), I decided to stop the threats and take action.

I had a few vacation spots in mind, but I decided on a mountain destination getaway.  It was my first choice from the beginning, and I am still in awe over the majestic views of the Rocky Mountains in Colorado.

Where did I stay?  See if you can guess by the picture.

ymcarockiesstatue

If you guessed YMCA, then you are absolutely correct!  I recently spent 5 days, 4 nights at the YMCA of the Rockies in Estes Park, Colorado.  At 8,010 ft. elevation, and 360-degree majestic mountain views, I was in no hurry to return home.

I wanted both adventure and tranquility on my vacation, and the Y offers both.

I spent a week at the YMCA of the Rockies several years ago, but it was for training for my job.  But not this time.  No learning team-building skills, de-escalation techniques, and participating in obstacle courses.  I vowed back then to return one day.  And I did.  August 22-26, 2014.

What did I do?

I spent time at the Design & Craft Center, two days in a row.  I made bracelets and earrings. That place is addicting.  Thousands of beads and charms to make jewelry.  T-shirt design.  Pottery.  Any and every craft for all ages, both male and female.  There were no popsicle sticks for birdhouses like the one I made when I went to a YMCA summer camp as a child.

ymcarockiescrafts

I didn’t get a chance to go hiking in Rocky Mountain National Park, but I did go horseback riding.  Jackson Stables is located on the property, and they even cater to beginning riders (like myself).  The trails are on the Y’s property, then you cross over into the amazingly beautiful RMNP.   By the way, the Y is bordered on three sides by RMNP.

ymcarockieshorseback

I also had a hot stone massage.

I didn’t get a chance to zip line, play kickball, shoot that bow and arrow, and a lot of other activities the Y offers, but I did get lots of rest.  I rested between each activity.  I did nothing but rest on my last full day.

I walked the labyrinth.  It took me 12 minutes to get to the center, walking at a slow pace.

ymcalabryinth2

I also got plenty of exercise.  At 8,010 ft. elevation, I huffed and puffed to each destination.  I was fine though, because I already knew what to expect at a high altitude.  I also knew to drink a lot of water.  All that walking paid off.  I stepped on the scale when I got home.  5.5 pounds lighter!

Estes Park offers a free shuttle service, so I caught the bus and went souvenir shopping down in the village.  There are so many stores, and they are not chain stores like JC Penney and Macy’s.  The streets were packed with tourists.  Luckily I found everything I needed at one store, just a few feet away from the shuttle bus stop.  I was not about to get lost in all that hustle and bustle.

barlowplaza

Whenever I go on a vacation, I like to eat something different.  Since I did my homework about Estes Park before my arrival, I knew that I would pay a visit to the Grubsteak Restaurant, known for its’ steaks and wild game.  And wild game is what I was after.

I caught the trolley to the restaurant for lunch, which stops right at their door.

estesparktrolley

grubsteak

grubsteakelk

I ate a swiss and bacon elk burger, and potato salad.  I drank a Maui’s cooler (Captain Morgan, Peach Schnapps, orange juice, and grenadine).  That was my first time eating elk, and I loved it.

I took lots of pictures, but I stopped after I realized the mountains did not want their pictures taken.  The pictures didn’t turn out how they should have.  They were taken on bright, sunny days.  Most of the pictures look dark and gloomy.  That’s probably because you have to see the Rocky Mountains in person in order to appreciate its’ beauty.

rockymountain2

rockymountain1

I took the picture below while I was at the Craft & Design Center making a silk scarf.  If you look up into the sky, you may be able to see a second rainbow.

ymcarockiesrainbow

I truly enjoyed myself out in the Rocky Mountains, and I would love to return to Colorado someday.  Permanently.  Maybe after retirement?  Hmmm it’s a possibility.