Monday, December 31, 2012

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!

Wednesday, November 14, 2012

Dancing With Joy!

Brielle has been part of a special needs cheer and dance group for the last two years. Although it's been a great experience, it just wasn't a good fit for us anymore.

By mere chance, one of Ashley's friend's texted me a few weeks ago that the dance place where she danced at for 15 years was offering a new class specifically designed for special needs kids and teens.

The teacher is a local college student who is studying special education. She has done a great job working with the girls and their strengths teaching them fun moves to popular music. The girls have learned a routine to one whole song and half of another in just three weeks.

Brielle and Victoria with
their dance teacher and helpers
Brielle has been attending the class with her best friend, Victoria, for the last three weeks and loves it! It was was only designed as a four week class, but they have offered to extend it at least through the holidays. Hopefully, if there is more interest in the class, they can offer it on a weekly basis starting in after the holidays.

Victoria's mom and I contacted all of the local newspapers to try to get more participants. Their story was featured in the big Atlanta paper and a weekly community newspaper. Very exciting!

Brielle loves spending time with her best friend and the proximity and timing of the class couldn't be more perfect for us!

Wednesday, October 31, 2012

Hospitals Smell Funny

Brielle's cerebral palsy affected her mouth most of all. That's why she can't talk, has issues chewing food, and can't control her own saliva very well.

She had surgery nine years ago to remove the salivary glands under her tongue (the ones that "fire" all of the time), but that did not help her drooling issue much at all. Usually when doctors perform this surgery, they also cut and cauterize the glands in the hinge of the jaw as well (the ones that "fire" when a person eats). However, with her eating issues, we were afraid her mouth would be too dry, so she only had the other procedure done. In the end, the surgery was not a success and Brielle had to go back on medication to keep her mouth dry.

Although she has been on the medication for years, the drug company stopped manufacturing it two years ago. We tried two other medications, but neither worked half as well. So, she hasn't taken any medication for the last year or so.

We had hoped that the drooling issue might improve as she got older or when she got her braces removed, but it did not get any better.

Although we could have the doctors go back and do the other surgery for the salivary glands in the hinge of her jaw, it's pretty invasive with a much more difficult recovery than even having wisdom teeth removed. Our ENT (Ear, Nose & Throat doctor) suggested we try using Botox injections in those glands to see how they react first. If the Botox works, then we know the other surgery would help and be worth while putting her through the difficult recovery.

After our health insurance company first denied the Botox injections (twice), we finally got it approved. When I told Brielle about the procedure two days ago, she cried for about 10 seconds. She is so fearful of anesthesia, with good reason, since she's been under nearly a dozen times for one thing or another. Then she signed to me, "I big girl. I brave." My heart broke.

Ready for her procedure!
She had the procedure done yesterday and she was such a trooper. She did great through the intake, talking with the doctors and nurses, getting on the gown, and getting on to the gurney. She only panicked when we got to the procedure room. Instead of an empty surgical room, it was a radiology procedure room with lots of big, scary looking equipment and machines (they used ultrasound to guide the needle for the injections). When they wanted her to scoot herself over under the big x-ray machine over the table, she just freaked out. We had to move her over ourselves and she cried and scrambled until they got the mask on her and she drifted off. I just hate seeing her like that.

Doing ok!
In recovery, she did beautifully. Usually she cries hysterically and is nauseous (effects of the anesthesia). But, we had a great anesthesiologist who gave her several medications before and during the procedure to help out with both of those issues. When it was all over, she was still one very sleepy girl, but she managed to give me a sleepy "thumbs up".

Once she was able to drink a little water and get her sea legs back again, we headed home. Brielle slept the entire way.
Still so sleepy!

I really hate having to put her through these things. It truly breaks my heart. But, I am so proud of her!

The doctors said we might be able to see a difference in her drooling on the first day and we did! It was at least 50% better. The full effect won't happen until two to four weeks from now, so we'll know more then. The Botox should last about six to nine months. After that, we'll need to make a decision about the other surgery. We wouldn't put her through Botox again for this, but this will show us if the surgery would be worth it for a long term solution.

(And not to worry, the human mouth has lots of little saliva glands in the tongue, cheeks and roof of the mouth. So, she's got plenty of saliva to use when eating.)

Thanks to everyone who shred their love, good wishes and prayers for us! We'll keep you posted!

Botox isn't just for wrinkles! -- Botox has been around for decades. Cosmetic doctors only began to use Botox for wrinkles in about 2002. Prior to this, Botox was most often used to relieve muscle spasms of one sort or another, including for patients with cerebral palsy. Brielle has had Botox injections three other times for her legs and right arm before she finally had surgery on her right leg five years ago. So, this wasn't our first experience with Botox!

Wednesday, October 17, 2012

Breakfast Anyone?

In our house, we celebrate even the smallest successes. Brielle has had a major accomplishment in the last week and we are definitely celebrating! She's able to make her own breakfast!

Ok. Well, she can do 95% of it on her own, but that's big! How did that happen? Her mama got out of her way! (Silly mama...)

With just a little instruction on motor planning for some of it, Brielle can do almost everything. (Those darn tight lids on her drink supplements are about the only thing I still have to do.)

Carefully pouring...
She does it all! From pouring the drink...

Yes, she eats THREE big donuts
every morning!

Breaking up the donuts...

Two hands carry the feast to the table!
Carrying it all to the table...

Yummo! Meals always taste better
when you make it yourself!
Of course, eating it is the best part!

Washing, washing, washing...
Into the dishwasher...
But, she also washes her own dishes....

Clean, clean, clean!

And wipes down the table....

How about that! As proud as I am of her, I think Brielle is even more proud! :)

Friday, October 12, 2012

A Sleepover (of Another Kind)

Whenever Brian travels, I let Brielle sleep with me one of the nights he is gone. If he is gone one night, she sleeps over that one night. If he's gone a week, she still gets just one night. It's something she loves and I wish I could say it's because she gets to sleep with me. But, I know it's because of the evening festivities instead.

No Dad. I'm not eating popcorn
on YOUR side of the bed!
It's the only time she gets to eat popcorn and drink Sprite for dinner. Brian always teases her not to eat popcorn on his side of the bed because of the crumbs. But, Brielle just laughs and we let it be "our secret". Cooper is pretty good about being a doggie vacuum cleaner and getting up all of the pieces, so it's not really an issue anyway.

Home videos are better than
anything else that's on TV!

It's also the only time I let her watch old home videos. I usually watch with her for a little while and then let her watch the rest on her own.

Daddy does the Hokey Pokey
and he turns himself around.
That's what it's all about!

Last night, I caught a few funny, classic scenes. One was of Brian doing to Hokey Pokey with Ashley at her gymnastics class. What a good sport he was. Too funny!

Can't get enough of this show!
The excellent writing always inspires me
to write better myself!

While she watched home videos, I watched my favorite TV series and worked on re-writing another chapter of my book -- Chapter 7! I'm making excellent progress! (And, yes, I've seen the whole series at least 10 times, but it never gets old! I just get "lost" in the mythology! - pun intended!)

Everyone is all tucked in!
But is there room for Mom???
I'm really bad at getting to sleep without Brian home. I stay up too late working and watching TV. Last night was no exception. When I came to bed last night, there wasn't much room for me!

Brielle doesn't get sleepovers with friends, but she loves our sleepovers together. And sleepy cuddles in the morning are the best part!

* Want to read about the best sleepover ever? Find out who it was with!

* For more about the progress of my book, check out my recent post about it or follow the summary of how it's all been going!

Thursday, October 4, 2012

"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"

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???

Wednesday, September 26, 2012

Writing and Re-Writing... and Re-Writing!

The fruits of my labor!
(or at least the three notebooks
with my chapters and notes)
It's been a long journey writing my story about having a special needs child. It started as a novel more than seven years ago when I started just casually writing when I had some free time (which wasn't often).  I honestly was not a good novel writer at all.  When someone from my first writer's group suggested I stop trying to cloud our story in a novel and write it as non-fiction, my memoir was born.

Tools of the trade --
my little laptop, an old fashioned notepad,
a critical red pen, and plenty of coffee!

With the help of my writer's group, I wrote and wrote until I finally finished the first draft at the end of July and am now working on re-writes. I write about four afternoons a week and am in a real groove! I hope to complete the re-writes completed by mid-spring and be on my way to publishing!

My current writer's group --
Me, MH and S
My current writer's group has been an invaluable resource providing me with helpful critiques and motivation to keep on writing. Brian, Ashley and my parents are reading my chapters for the first time and have been a huge source of support as well.

* For updates on my writing process, be sure to visit my special blog page!

* For more information about my writer's group, be sure to visit their Monday's Making a Difference page!

Saturday, September 22, 2012

It's Time for Basebal!

It's time again for fall baseball with Miracle League! Brielle has been playing since she was about eight years old. She played in Round Rock, TX, Toledo, OH and now for the last four years in Cumming-Forsyth, GA.

It's an amazing experience for kids and their families. But, it's also a great experience for the "buddies" who come to help. They are often teenagers from local high school sports teams. Our kids show them the power of trying and being a team in a way they might not see from their own peers.

The dugouts are extra wide to accommodate kids who use wheelchairs. The field is completely flat to make running the bases easy for all of the kids with physical impairments. Every child gets a chance to make a hit even if it takes a dozen or more pitches, using "T" or having their buddy bat for them. The score is always tied and it's all about having fun!
 And everyone knows rounding home plate is the best feeling of accomplishment with ALL of the fans cheering them on!
 The team huddle at the end of the game is special time of celebration. Brielle has been with the same team for the last four years, so they have a special bond.
Of course, no one cheers Brielle on more than her biggest fans, her family! (who just happen to be Cardinals fans and all decked out in Cardinal gear, just like Brielle's team!)

* Brielle had a blast playing baseball last year, too!

*For more information about  the Cumming-Forsyth Miracle League, please visit their website or go to the national Miracle League website!

Thursday, September 20, 2012

The Sleepover

Ashley in her dorm room
August 2012
Last weekend we traveled from Atlanta (where we live) to Orlando (where Ashley is going to college). We couldn't wait to see Ashley! We moved her into her dorm a month ago and hadn't seen her since -- other than video chatting, which just isn't the same at all.

We did the typical "College Parents Weekend" things -- walked around campus to see where her classes are, listened to a few guest speakers, walked through the craziness of tailgating, went the first home football game, and went out to dinner.

Ashley and Brielle coming out of the dorm
the mornning after their sleepover
September 2012

As fun as the whole weekend was, by far the most special moment (other than getting my first hug from Ashley in a month) was watching Ashley take Brielle by the hand to take her up to dorm room for a sleepover. I was overwhelmed with warm, fuzzy feelings.

Unlike most 16-year-old teenage girls, this was Brielle's first sleepover ever.
Ashley and Brielle saying their "good-byes"
before we left to travel back to Atlanta
September 2012

Since we dropped them off close to 10pm and were picking them up at 8:30 the next morning to go out to breakfast as a family, there wasn't much time for the traditional girly sleepover events. Ashley, of course, did a great job taking care of Brielle overnight, but she also made Brielle feel special and made the whole event fun. Brielle was SO excited about their sleepover and has been chattering on and on about it ever since.

For being just less than two years apart, my girls don't get to do a lot of the "sisterly" things other sisters get to do. But, that sleepover will forever be precious to me as I know it will for both of them.

*Check out more sisterly love here!

Wednesday, September 19, 2012

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! :)

Wednesday, September 5, 2012

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.

Monday, September 3, 2012

Monday's Making a Difference

CHS Class of 1987
25th Reunion - September 2012
This weekend was my 25th high school reunion. Wow. How can I be that old??? We drove from Atlanta and central Illinois and enjoyed a fun weekend chatting it up with long lost friends and even went on a tour of our old high school. It was pretty low-key with, surprisingly, very little stress. None of that comparing resumes and bragging on accomplishments that seems to happen at other reunions. Thank goodness we've grown up a little.

Today's Making a Difference is about a former classmate, John. How can someone I haven't seen in 25 years and barely communicate with on Facebook make a difference? Easy. John shaped my early impressions of what it was like to have a disability because he is disabled.

I met John for the first time in high school. I honestly don't know if his family just moved to the area or if we simply went to different middle schools. Either way, we got to know each other in marching band, although exactly why, I'm not sure. He played trumpet and I did flags (now usually referred to as "color guard"). Moreover, John wore leg braces on both legs and walked with a pretty severe limp.

I think it is amazing that he had the courage and determination to perform in the marching band given his circumstances. Looking back on it with older eyes, a wiser mind, and an experienced heart (having a child with a physical impairment), I see him in a new light. His character was and is remarkable. He was always smiling, worked hard and never saw himself as different (at least not to outsiders).

John at our 25th High school Reunion
September 2012
Today, he seems to be the same wonderful person. He has worked in the field of education (not as a teacher) for years while his wife (his high school sweetheart and our fellow classmate) taught special education at our old high school, but now teaches at a Catholic school. They have several kids together and he sounds like a great father with a solid foundation of faith in God.

When we connected on Facebook a couple of years ago, I told him about Brielle and how thinking of him when Brielle first got leg braces when she was 18 months old made it easier. When I saw him this weekend, I again told him how knowing him in high school made dealing with some of the issues with Brielle easier and he really inspired me as a parent. I had to hold back some tears as I talked to him about the difference he made in my life parenting Brielle. He seemed touched and honored, but, typical for John, terribly modest.

He was a blessing in my life in high school as a friend and touched my life in ways that neither of us would know for years. Amazing person. Thanks, John, for making a difference in my life those many years ago and the impact it's had on me as a parent!

*Miss a previous "Making a Difference" entry? Just check them out here!

Monday, August 20, 2012

Monday's Making a Difference

Today's Making a Difference is Ashley, Brielle's big sister... Who else could it be after we took Ashley to college this past weekend?

Ashley and Brielle have had a "different" relationship than most sisters because Brielle is "different." It's just too complicated and special to put into words, so I'll just show you instead...

Meeting Brielle
February 1996

Summer 1996
Fall 1997?

Spring 1999?

Summer 1999?
At our garage sale in Illinois
Summer 2000?
Texas backyard

At Dad's softball game

At Grandma's house
Spring 2003

At a University of Texas volleyball game
Christmas Eve
In Panama City, FL
June 2009

In Washington, DC
September 2010
Clearwater, FL
September 2011

Christmas Eve 2011

February or March 2012

Ashley's graduation
May 2012

As we all start a new chapter in lives while Ashley is in college, I know we certainty that Ashley and Brielle will always have a special sisterly bond like no other.....

* Miss any previous "Making a Difference Monday's"? Just check them out here!