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!