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?

Things I Will Never Have to Deal With

Parents of special needs children miss out on a lot. Some things, we hate missing. Others, are somehow an unexpected "side benefit."

1. I will never have to

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...

Next to Last Pew

Most people have "a spot" in church, a favorite place they always sit. We have one, too -- the next to the last pew on the far side.

To be honest, it's a lonely place.

Why so lonely?

Being Truly Creative AND Authentic

There's been a dry spell here. I haven't posted anything new in weeks. Sure, Ashley was in town for her spring break and I was busy doing things with her, especially celebrating her birthday. Bu then.... Well.... I just felt unmotivated.

The blahs? I actually have a bigger zest for life and more energy than I've had in a while. So that can't be it.

Tapped out as a writer -- aka Writer's Block? I've been a mad woman working on re-writes lately. So that can't be it.

Laziness? I've been a total busy beaver lately working on household projects, even yard work! So that can't be it.

For a few days, I rationalized my lack of blog writing as my "unofficial spring break". Everyone needs a break, right? Blogging isn't my job. I don't "have to" do this.

Then I realized something else was nagging at me.

With the end of re-writes in sight (less than half a dozen chapters left to go), I'm realizing there's so much in my head that doesn't naturally fit onto the pages of my book. My memoir is light on opinions, heavy on story telling; light on funny anecdotes, heavy on poignant moments; light on "how to's", heavy on "what I've learned"; light on breakthrough thinking, heavy on the basics. I think that's what my memoir is "supposed to do", not that there's any rules, but that's how it has evolved.

But, what about this "extra stuff"?

Unlike putting together a bookshelf from IKEA, I don't really want to just throw the extra screws and pegs in a junk drawer or into the bottom of the tool box. I want, maybe even need to get some of this extra stuff out.

So... what's all of that mean?

Changes.

Changes here on my blog. Maybe changes with my book, too. Time to dig deep and let my creativity flow while still being authentic.

Excited for what comes next!

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.

Generous Surprise Gift from a Stranger - Part 2

In early January, we were approached by a stranger at the car dealership while my vehicle was being repaired. He gave us two tickets to the Taylor Swift concert in April. It was quite a shock!

If you haven't read that part of the story, be sure to read it! 

After we received the tickets and, later the two extra tickets so our whole family could go, the man realized the two sets weren't for the same night. So, today he called and asked us to come back to the dealership to get a whole new set of tickets -- four sitting all together on the same evening. 

Four new tickets!

Not only did he give us the tickets, but he gave us two big Taylor Swift backpacks (one for Brielle and one for Ashley)....

What a fabulous late birthday present for Brielle!

 

...And they were both stuffed with oodles of Taylor Swift gear!

 

 

I think Brielle's beaming smile says it all!



Again, we are simply overwhelmed by Mike's generosity. He is such a kind man and probably has no idea what a huge gift this has been for us in so many way!

I think I can safely say that Mike is no longer a "stranger" now that we address one another by first names only and greet each other with hugs. :) It is an honor to know him and know that he often demonstrates this sort of random generosity with others.

He's also promised another "special surprise" (not related to the Taylor Swift concert).  I can't even wrap my head around that one, so I'll keep it to myself for right now. But, be reading for more details in the fall!

Be sure to follow us on Facebook!

Brielle's Birthday!!

Today is Brielle's birthday!! It's hard to believe she is 17 years old. Where has the time gone?

February 13, 1996

Brielle's story was not a typical child's story. But, she has thrived and maintained her beautiful, joyful spirit. She is child worth knowing!

Brielle's life is so precious. Today is a day (one of many days) to celebrate that life!

 

 

 

 

Happy birthday Brielle!!!

Special Olympics Winter Sports Banquet

Last night was our county's Special Olympics Winter Sports Banquet. I'm sure it's not unlike other sports banquets, although I've never been to any others.

It was held at a local high school in the school cafeteria
and there was a pretty big crowd of families.

A BBQ dinner was catered in and Brielle loved it!

Some of the members of Brielle's bowling team!
After a slide show featuring pictures from all the winter sports activities,
each member of each sport team received an award.

Brielle was SUPER proud of her award
along with the gold medal she won at the State bowling games
a few weeks ago!

It was a nice evening all in all. However, I had quite the special experience talking with one of her bowling teammates and her family. Katelyn was open and friendly and told me lots of cute things about herself. When she told me she was 21 and was going to be graduating from a local high school this year, it naturally sparked a conversation with her mother who was sitting next to me. We talked about plans for the future including work, living arrangements and finding things to keep busy after school was no longer an option.

Katelyn is on the far left wearing the red-sleeved shirt.
Brielle, of course, is on the far right in the tan sweater.

I know those issues are just a few short years away from us for Brielle. We've certainly thought a lot about it, but we haven't planned anything too specific yet. Despite it being in the near future, five years is long time from now and with our track record of moving so often, who knows where we'll be living then.

I don't get many opportunities to talk with parents of special needs children who are just a few years ahead of us. Katelyn's mom, Ginger, was open and friendly, something I truly appreciated. It's good to see what others have planned or have in place, and it always gets me thinking.

Thanks for the chat and support, Ginger AND Katelyn!

And congratulations to Brielle for a great Special Olympics season!

Monday's Making a Difference - Learning from Others

Although this week's post isn't about someone who has direct contact with Brielle or our family, it none the less makes a difference in our lives because it makes a difference in my life. This week I'd like to share some of the blogs I read and what a gain from them.

How many blogs are there out there? Millions? I looked it up and there are reportedly over 180 million! So how does one comb through those and find one that is worthy of following? For me, it's a lot of "look and see". Any blog that I read is an investment of time and energy, so it has to be helpful in some way, even if only for the pure entertainment value. 

These are a few I go to regularly (usually several times a week):

Enjoying the Small Things is a wonderful blog by a mother whose second daughter was born with Down Syndrome. Her photography is amazing! (so jealous...) But, it is the small things in their family's life that she talks about (and photographs) that touch me. Her blog reminds me to make the effort to capture some of those fleeting moments.

Uncommon Sense is a blog by a mother whose first daughter who has global developmental delays (due to a genetic mutation). The stories about her family, including their baby son, are honest and insightful. However, it her determination and tenacity with her daughter that inspires me. Her story, Amsterdam International, is a gut wrenching, brutally honest follow-up to the (somewhat) well-known story "Welcome to Holland". I encourage you to read it!

The Sweeter Side of Mommyhood is just precious. Although this mom often blogs about baking (something I don't do well) and art (which I have more inspiration and enthusiasm than talent for), her one-year-old daughter also was affected by CMV. Her blogs about her little one are sweet, tender and filled with fun sarcasm that I just love. Again, this blogger has fantastic photography (insert more jealousy here).

Life With Elise is a painfully honest blog about a mom's life with a severely brain injured daughter. I struggle on a regular basis with digging up and revealing my emotions in my writing for my book. This blogger inspires me to dig deep and let it all hang out.

Angels4Chloe is a somber reminder to me about how precious life is and how fragile it can be, especially for kiddos with CMV. This mom's struggle and loss of her daughter due to complications from CMV keeps me grounded and ever mindful of what I am grateful for -- for things Brielle does not have or did not have happen because of CMV. 

There are several other blogs I keep tabs on, but may not follow quite as regularly. And I do read other blogs not related to special needs parenting, however, those just aren't in the same category for me.

Thank you all for taking the time and energy to read this blog! I'm a blog reader, too!

And to make sure you don't miss any posts by becoming a "Follower"! You can also keep up with my blog posts and other news by "Liking" my Facebook page!

Tuesday's Tiny Triumphs - The Doctors Were Wrong!

Our family
Christmas 1995
(7 1/2 months pregnant with Brielle but before the CMV diagnosis)

A little over 17 years ago (while I was still pregnant with her), doctors told us Brielle had been affected by cytomegalovirus (CMV) prenatally. Although it's a very common virus, it can be devastating to an unborn child. I was heartbroken and overwhelmed when the doctor called me and gave me the grave news that there was a 40% chance Brielle might die at birth due to liver damage.


My notes
 from when I got the call
from the doctors
January 1996

My notes
from when I got the call
from the doctors
January 1996

....But, she was born healthy!

Brielle with Mom and Dad
on the day she was born
February 13, 1996

Brielle using her walker
November 1998

When she was a year old, doctors told us she would probably never walk and we should start working with our insurance company to get her a wheelchair. Just before her third birthday, she started walking with a walker.

...A few months later, she was walking on her own!


Now, at almost 17 years old, she's doing better than any doctor could have predicted when she was younger. She has many struggles, but that beautiful smile is nearly always shining!




Brielle hamming it up for the camera
Christmas morning 2012

Brielle IS a triumph every day!

Tuesday's Tiny Triumphs - We Help Mommy

Add caption

Brielle continues to do LOTS of little things on her own. Although there isn't anything particularly new or noteworthy to report this week, I got to thinking about a childhood book I loved called "We Help Mommy" (a classic Little Golden Book).

Although it's out of print and terribly expensive, I found my old copy. Looking through its pages, it truly made me smile to think of how much I wanted to help MY mommy just like Brielle now wants to help hers.

Me!
Reading a book
when I was a little girl!

More Than a Box of Memories

As part of my effort to clean, organize and get rid of "junk", I decided I needed to tackle the worst part of the house first before I ran out of enthusiasm and energy. What's the worst part? Our basement.

It is downright cold down there these days (mid-40's during the day and no heat down there), so I decided to go through our memory boxes first since I could bring them upstairs where it's much more cozy.

Brielle's Two Memory Boxes
(after going through them
and organizing the contents)

I actually went through my four (yes, FOUR) plastic storage tubs two months ago. What a fun trip down memory lane. I didn't feel like I could responsibly go through Brian's boxes (only two tubs) or Ashley's (a whopping FIVE tubs), so I brought up Brielle's (three tubs).

Let the giggling, "awww's" and a few tears begin...

An overwhelming amount of space was taken up by all of her participation medals and trophies. What is the need to keep those anyway? She certainly doesn't care about them. I took pictures when the events happened and those pictures are displayed in our scrapbook. Out they go.

How many participation medals
and trophies does one little girl need???

There were paper awards and ribbons. Those, I kept (though I'm not sure what the logic is other than space).

There were great pieces of art including art from holidays, handprints from finger painting and her first self-portrait. Giggle, giggle....

Was Brielle every that little???

Then there were baby blankets, rompers and dresses. Awww.... I showed them to Brielle. She giggled and immediately asked how old she was when she wore them. She pinched her nose when I showed her a tiny diaper. Giggle, giggle...

I found things from the hospital including the wrist bands, crib label and birth announcement with her tiny baby footprints Awww... There were other baby things like a bottle and a favorite rattle. I even found the pregnancy test. Why I kept that, I have no idea, but it went back into the box.

These are memories worth keeping, too..

Then there were several sets of leg braces and a leg cast signed by her second grade class when she had Botox injections in her leg. There were even a few hand splints we tried to help her right hand. Sigh...




There were copies of photographs taken of the ultrasounds I had while pregnant with her, too <insert a few tears here>

Going through her boxes made me think:
1. How does a mother decide to keep something or throw it away?
2. How does a mother change her mind about what to keep several years later?
3. How many things did this mother throw out that I would appreciated later?
...and finally...
4. Does a "memory box" of mementos really reflect a person's life?

A simple cleaning/organizing project left me with a lot of sentimental feelings -- some joyful, some a bit melancholy. The items in the box might never mean much to Brielle, but they mean something to her mom.

**(As I write this post, Ashley got inspired to use some of her time home from college and is going through her FIVE boxes - well, at least one of them at the moment. I hear giggles, "awww's...., and few sighs coming from the living room where she's working. Maybe she's appreciating her mom's efforts to save things. Maybe she'll do the same for her kids one day.)

--> What's the strangest thing you've saved of your child's?

Reflecting on 2012

Family Love & Laughter!

November 2012

It's natural (and, yes, a total cliche') to reflect on the previous year as we move on to the new one. Indeed, our family was truly blessed and endured natural changes.

The biggest change for our family was Ashley graduating from high school and starting college in Orlando, Florida this fall. We are so proud of her (straight A's her first semester!), but miss her terribly. Brielle really misses her big sister. It was a rough initial adjustment, but we've found a new routine.

We made several trips to Orlando to visit what eventually became Ashley's college campus. Brielle and I traveled to Washington state (twice to visit my parents). Brian, Brielle and I went to our hometown in Champaign, Illinois to go to my 25th high school reunion. Brian traveled to Shanghai, Germany, Brazil, Geneva and Poland (and Pennsylvania) for work. When he travels, Brielle loves sleepovers with Mom. Ashley went with friends to Panama City, Florida. But, mostly, we loved just being together at home!

Brielle now boasts that she is taller than me (only by an inch, at best) making Mom the shortest member of the family. Brielle got her braces off last May and now has a sparkling smile!  Brielle was (thankfully) healthy all year. Her only "medical event" was Botox injections in her salivary glands. Two months later, it seems to have only a small lasting effect -- very disappointing.

Brielle made great strides academically. She finally learned her basic addition and subtraction facts and is working with double digits. This is a HUGE success! She's been struggling with this skill for years and years making little or no progress, but this year, it's just clicked. And she accomplished this without much complaining or cheating (most of the time). She continues to do well in Social Studies, Reading and Language Arts. I have had the privilege of homeschooling Brielle the last three years and it has bonded us together in new and special ways. We had our biggest homeschooling adventure this spring when we spent a day without any technology. But, every day is an adventure together!

One very important part of homeschooling for Brielle is working on "life skills", those simple things that young people should learn to become independent (cooking, cleaning, laundry, money skills, shopping, etc.). Although Brielle will never become independent (live on her own without some assistance), we still focus on those skills. She's made big strides in this area this year, the most exciting was learning how to make her own breakfast from start to finish!

Brielle stayed busy playing baseball, participating on a cheerleading and dance squad, and started a new dance class. Special Olympics Bowling also just started up again. Of course, listening to music (and usually dancing along) or watching some of her favorite TV shows and movies is what she loves the most!

Life is an adventure in learning and I truly learn new things every day parenting and teaching a special needs teenager. I had several interesting insights this year. As she gets older, Brielle has new insights as well.



Brielle and Me
May 2012

My biggest accomplishment this year was finishing the rough draft of my book about our experiences with Brielle. I'm working on re-writes and hope to be done and looking for a publisher by early next summer.

One of my goals for 2012 was to start this blog dedicated to my experiences parenting Brielle. I hoped to keep up with regular posts. However, I've been slacking on in recent months. I plan to do much better with that and share information and insights that will, hopefully, help others. I am most proud of my post about the "R" Word and hope that it will be only one of many I can be proud of by this time next year.

It was a great 2012 for our family with very few disappointments or "bad times". I pray 2013 will be even more glorious!

Blessings to you and your family! I hope you'll follow my blog and comment if something strikes you. I love feedback!

"Mad Libs" Revelation

From time to time, I discover something really interesting while homeschooling Brielle. Sure, I've learned things about history and science that I either:
a) ...never learned; OR
b) ...learned and had forgotten (which is highly likely)

Our "Mad Libs" page today

Well, today, during our Language Arts lesson, I had quite the revelation. We usually do a "Mad Libs" page to warm up. "Mad Libs" are actually a great way to review parts of speech and whole lot more fun than boring worksheet.

Do you remember doing "Mad Libs"? Maybe you did them on a car ride or at a sleepover. You don't know what the story or sentence is about. You just fill in something for the missing part of speech and then read it aloud to hear how silly the sentences get. Brielle always laughs at how ridiculous the sentences are.

We're working on a "Mad Libs" book with a birthday theme and today's page was a birthday card. The last line on the page was "a person in the room - female". We had already used "Mom", so she signed, "Brielle" to me. (Yes, we've been known to use "Cooper" - our dog - once in a while, too.) then I realized how the last line reads:

"Hugs and pillows,
Your Aunt Brielle"

"Your Aunt Brielle"

Whoa. Brielle could some day be an aunt. I had never thought of that. Duh. How could I not think of that?? Of course, Ashley could have children some day (although Ashley doesn't like kids much, she could marry someone and have kids). I have certainly thought of that, Ashley having kids. So, why had I never thought of Brielle being an aunt???

As I pondered why I hadn't thought of this before, I took a picture of the page and texted the picture to Brian. He had the same reaction as I did. "Wow. guess that is right, never crossed my mind either." Oh good, I'm not wacky for not thinking of this sooner.

I texted the picture to Ashley telling her I had never considered that one day Brielle could be aunt to her future children. Ashley responded, "Never thought of that??? I have. That's probably because it would be my kids..lol"

Hmmm.... I guess this is something I should have thought of at some point. Well, now it's got me thinking. What kind of aunt would Brielle be?

First of all, Brielle would be SO excited. She just loves babies! And I think Brielle could be a good aunt. Just consider all she could teach a neice or nephew about life, fairness, and having a postive spirit? Those are important lessons.

I think I'll just keep thinking about that instead of thinking about what her neice or nephew might miss out on since Brielle is the way she is. Otherwise, it's just too depressing. Besides, Brielle won't be an aunt for VERY long time, if ever.

(While pondering all of this today, I also had the opposite thought. Ashley will never be an aunt. Another depressing thought...)

Who thought "Mad Libs" could bring on such a huge revelation???

Birth Day

Brielle's day of birth
February 13, 1996

I have been working on re-writes of the chapter in my book about the day Brielle was born. I thought it might be helpful to watch our home videos of the days leading up to her birth and the time in the hospital. It jogged my memory about a few small details and  left me with a sense of both heaviness and peace.

It was a time filled with such anxiety since we knew Brielle had already been affected by CMV and I could feel that in the video taken the night before her birth. However, the peace it also brought me was from the joy watching her sweet little face as well as watching grandparents hold her and Ashley meet her for the first time.

Precious memories!

*Hope you are keeping updated about the progress of my book! :)

To Tell the Truth...?

When and how do I tell people about Brielle? That's a question that came up time and time again at my 25th high school reunion last weekend.

Thankfully, it seemed as though everyone had moved past trying to boast about their lives and accomplishments. Instead, my former classmates' first questions were almost exclusively, "Where do you live?" and "Are you married?" (sometimes followed by, "Did you marry someone I know from our high school?").

But, the next question frequently sent my mind racing. "Do you have any children?" Seemingly innocuous, the question carried extra weight in my mind. Of course, I answered, "Two girls, ages 18 and 16." But, then what?

The conversation often turned to questions about what activities they are involved in and how difficult it must be to have teenagers. Some had no idea just how hard it is.

So, when did I tell them about Brielle? And how?

I often started with chatter about Ashley starting college and how difficult/strange/exciting that is. Then it's time to say something about Brielle.

When I delicately told them Brielle is disabled, I was often met with looks of shock and pity. I hate those looks. The silence that followed was the loudest silence I've ever heard and yet I have heard it so often since this was not my first time in a new situation introducing people to my disabled child.

I wanted to try to ease the tension with my long lost "friends" and often quickly added, "Oh, it's been a struggle, but Brielle is wonderful" and "at least she's healthy" and "it could have been much worse".

For them, it was likely a fleeting moment of uncomfortable tension in a weekend of trying to make small talk with people they once called "friends". Inside, my heart ached and I wondered in a teenage self-centered way if my disabled child and I became the subject of discussion when the seemingly jolly group broke into smaller cliques as the night wore on.

I am confident there were others there who felt the same dread when they had to reveal a divorce or joblessness or a lack of children. So, I know I was not alone in my anxieties last weekend.

On the other hand, there were true friends there that I had stayed in touch with who knew about Brielle and asked eager questions about her and the progress of my book. I was grateful for those small bits of respite in the weekend's events.

So, if you're one of my classmates who felt uncomfortable or unsure of how to react to news of my disabled child, no worries here. I do it often. I don't expect it to be easy for you since it never gets easier for me either.

Just telling you the truth here...

* If you truly want to know more about Brielle, you've come to the right place.

Twenty-seven years ago....

Our first picture together
on our way up to Estes Park, CO
July 1985

....Brian and I had our first "official" date.

We went to the same high school. Although he was several grades ahead of me, I knew who he was since he was on the basketball team and I was in the prep band. I even had drivers education class with his little sister!

We truly met when his best friend invited him and another friend to go on our church's youth group trip to Denver. I thought it would be lame, so I refused to go despite my pastor's questioning. I finally relented when someone else backed out and the spot was already paid for by the women of the church.

I clearly remember walking around the corner of the church and seeing Brian standing there with his two friends. Love at first sight? Nah. But, it was definitely lust at first sight!

There were meetings for several weeks before the trip. By the time we left for the trip, we were basically a couple. But, it wasn't until we got back that he formally asked me out on our first date. Pizza and miniature golf!

Less than five years later, we got married and here we are 27 years after that first date! How can we be THAT old????

* Want to read more about our wedding day? Just read my March 10th post about our anniversary!