The Same Question

People, by their very nature, are curious. They try to figure things out. I know that's why people sometimes stare at Brielle - they are trying to figure her out -- especially children.

What people might assume is that Brielle does not notice or care if they stare. They are wrong.

Once in a while, a brave soul might ask a question. No respectful question is too personal. I'm an open book, literally. After all, I'm writing a book about our lives.

So, what questions are most often asked?

Code Name: Heinie

It's the winter of 1994. Brian and I meet behind the closed door of our bedroom at 10pm each night. He holds a black Sharpie in one hand. I hold my bulging belly.

"Well?" he asks. "Which one tonight?"

Memorable Crosses in My Life

It is difficult to go through the Easter season and not consider Jesus' experience on the cross. Although I've seen it portrayed in many movies and documentaries, it is still actually difficult to imagine.

The cross is the symbol for Christianity and the focus of Easter traditions. How many crosses have I seen in my life? Maybe thousands? A few are quite memorable.

What I Expected When I was Expecting

1994 - Pregnant with Ashley

It difficult to remember what I was thinking nearly 20 years ago when I was expecting our first child. However, visions of tiny toes, cute little onsies, and tights with lacy bottoms come to mind.

Sure, I expected sleepless nights of midnight feedings and worries over late night fevers. But, I also expected mornings with Cheerio-filled highchair trays, afternoons playing hide and seek in the park, and evenings snuggled up reading picture books carefully saved from own childhood. I expected  recitals, baseball games and gradautions. I expected pictures of first steps, first communion, prom, weddings and grandchildren.

Then I was told we might expect something very different...

Happy Anniversary "Brielle & Me"!

A year ago, I "went public" with this blog. Although I started it six weeks before, I put this blog out there for the others to read and

The "R-Word"....A Year Later

In honor of the National "R-Word" Awareness Day, I've copied the post I wrote last year.....

Retarded. It’s just a word. Right? Wrong. Words have power.

A well-known saying goes:

“Watch your thoughts, for they become words.
Watch your words, for they become actions.
Watch your actions, for they become habits.
Watch your habits, for they become character.
Watch your character, for it becomes your destiny.” by Unknown

There has been a national campaign to encourage people to stop using the “R” word. www.r-word.org/ There have been Public Service Announcements with famous actors. http://www.youtube.com/watch?v=T549VoLca_Q

I’d like to give you one more thing to think about. I’d like to share with you how the “R” word became more than just a word to our family.

I clearly remember getting the phone call at work when I was eight months pregnant with Brielle. The specialist called to give me the results from our amnio. I took notes as he told me about our unborn child. He told me she had CMV (cytomegalovirus – although I spelled it wrong the day I took notes from the specialist’s call).

The words “mental retardation” stung as he told me there was a 70% chance our baby would have it. “Still risk MR” jumps out from the notes I took. The words still sting as I read my notes 16 years later.

I clearly remember hearing the report when Brielle first received intelligence testing when she was entering school. “Mental retardation” was not on the report, but I could read between the lines of the report which told us her IQ scores were in the 70’s. My heart broke.

The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. Until President Obama signed Rosa’s Law into law in October 2010, IDEA used the term “mental retardation” instead of “intellectual disability.” Rosa’s Law changed the term to be used in future to “intellectual disability.” www.disabilityscoop.com/2010/10/11/white-house-rosa-marcellino/10610

Brielle has “mental retardation”. Rosa’s Law now terms it as “intellectual disability”, but Brielle is still the same.

If you hear someone use the “R” word or have used it yourself as a synonym for something stupid, meaningless and not useful, think again. Think about the parents who hear that word for the first time used to refer to their child. Think about me.

 

 

There is an “R” in Brielle’s name. Brielle has an intellectual disability. She is technically retarded. But, anyone who knows her knows that she is much more than that term. She is not stupid or meaningless or useless. She is a human being. She is beautiful. She is my daughter.

Monday's Making a Difference - A Good Chair

Brielle's Wheelchair

Today's Making a Difference isn't a "who", it's a "what"...

When Brielle was about a year old, her therapists advised us to start working with our insurance company to get Brielle fitted for a wheelchair because she would probably never walk. She defied the odds (or at least the predictions) and began walking with a walker before her third birthday and was walking on her own in just a few months.

However, as she grew, she could no longer fit in traditional infant/child strollers. When she was about five years old, we upgraded to a medical stroller/wheelchair. Although we only use it for times/events with lots of walking, it's been a lifesaver on many occasions.

And boy, has that chair traveled around!

Sea World in San Antonio, TX
2001

Little friends can ride a long!

We used to always take it to the mall.
When Brielle was little enough, my purse could sit beside her!

At a celebrity golf tournament in Austin, TX
Look at all we can hang off the back of the chair!

With a family friend at the Toledo Zoo in Ohio
2007

At the Atlanta Zoo in Georgia
Spring 2008

At the Atlanta Aquarium in Georgia
June 2008

At Disney! (in Orlando, FL)
February 2009

In front of the White House! (in Washington, DC)
September 2010

At Clearwater Beach, FL
September 2011

At the University of Central Florida in Orlando, FL for new student orientation
Again, look at all we can pile on the back of her chair!
June 2012

Today, we actually needed it around the house. It seems as though Brielle might have broken her big toe yesterday. :(  She can't put any weight on her right foot unless she is wearing her sister's "boot" from when she broke a toe last summer. (That was the second time Ashley broke a toe -- My girls seem to be prone to this sort of thing, eh?) To make things easier around the house, we're using the wheelchair.

Today with her broken toe :(
Owie!!

The fact that she still fits in the chair after 12 years is fairly shocking, although it isn't an "ideal fit" for every day use. It looks less like a wheelchair than some models, but is sturdy and can even be loaded on to a school bus if needed. This chair folds in half and is portable even though its bulk and weight almost maxes out my ability to lift it into the back of my vehicle.

Folded up in the back of my vehicle
(see the back right in front of Brielle)

None the less, it has been extremely useful over the years and makes an incredible difference when it's needed!

Thursday's Teaching Highlights - Parks

The best highlights of our teaching week:

Thank you letters!

- Handwriting: Brielle wrote thank you letters for gifts she received on her birthday. Yes, she knows her manners!

- Social Studies/History: We learned about Rosa Parks, the "mother of the Civil Rights Movement."

Scrapbook page for our trip
to the Henry Ford Museum in 2007

Ashley at the
Rosa Parks bus
at the Henry Ford Museum

We even found my scrapbook page about our visit in 2007 to the Henry Ford Museum in Detroit, MI where the bus is on display. Although Brielle says she remembers being there, I'm sure (at the time) she didn't know what that bus was all about. The whole museum is VERY interesting and well-worth the time and cost! (just in case you ever get the chance to go there!)

While working on our lesson, I realized Brielle had no idea what "black" meant let alone why there was segregation. How precious is that innocence not to see the difference?

Friday's Photos - Birthday Week!

This week in pictures!

Peek A Boo! I see you!

Getting toes painted with her best friend, Victoria, on her birthday!

Dinner with her BFF at Waffle House!

Getting a little help from her friend to blow out her birthday candles!

The cutest birthday wish she got all day!
From her friend, Cooper, who lives not too far from Atlanta and was also affected by CMV.
Such a cutie!

 

It's no fun when Dad has to go on a business trip all week,
especially when it's over Brielle's birthday AND Valentine's Day!

 

But, Dad sent Mom these beautiful flowers for Valentine's Day!
He's still my sweetheart after almost 28 years!

A precious moment the day Ashley met her new little sister, Brielle, for the firs time.
February 17, 1996

Oh Brother... Love Him? Or Poke His Eye Out?

Today is my brother's birthday. It's not a milestone birthday or anything, so I won't reveal his age or anything so embarrassing. (He's five years older than I am and I'm 43, so you can do the math.) -- :)

When we were little, I'm sure I was just that crying thing that kept him up at night and took attention away from Mom and Dad.

He looks thrilled, eh?

My first birthday
December 1970

When we were young kids, our relationship was based on pestering, bugging and teasing (despite what some of these pictures show).

At Disney

When we were teenagers, it got awkward and we rarely talked.

Awkward... Don't you love my knee socks?
At his confirmation
May 1978?

Awkward family photo
at my confirmation
May 1983?

Awkward...again... I won't even comment on my shirt...

Awkward photo at Christmas.... even our cats look awkward...

When we finally got older, it got fun.

February 2006?

 

December 2009

Smooches! With cooties!!!
December 2009

 

July 2012

Sure, we still goof around like only siblings can. But, he's the only person who "knew me when", knows all of the childhood stories, gets all the inside family jokes, and, despite all of that, still wants to be my friend.

Me, Mom, Dad and Jason
January 2012

I refuse to admit that I like him being my older brother. I won't say that I'm glad we're friends. I would never in a million years admit that sometimes I tell him things I never tell anyone else. I won't even mention that he brings out the best in me by making me feel like a kid again.

For now, I'll just wish him a Happy Birthday.... And tell him to watch out... or I'll poke his eye out!

Love you, Jason!

 

 

Friday's Photos - Before & After

The Scrapbook Cabin -- Home Away from Home Last Weekend!

The Scrapbook Cabin -- Main Living Area

 

The Scrapbook Cabin - Scrapbook Area
(1 of 2 large scrapbooking rooms)

 

Snow at The Scrapbook Cabin!

Our dog, Cooper --
Looking a little shaggy!

Our dog, Cooper --
After getting groomed this week!
How could this be the same dog???

Wednesday was a lovely day outside to write out on our back deck!
Got "final" edits done on Chapter 13!

The only picture I think I have of just me and my mother-in-law, Connie
(She passed away suddenly in December of 2001)
I was struggling this week trying to remember the details of an event back in October of 1996 and nobody could help.  My sister-in-law, Tracy, checked her mom's old diaries and, sure enough, Connie had written down the details of the event no one else could remember. Thanks, Connie!
...miss you...