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!

Monday's Making a Difference - Brielle's BFF

Everybody needs a best friend. Brielle's BFF, Victoria, is a sweetie. They met when they were classmates in middle school. They have a long history of doing fun things together.

Hanging out at the mall.
2009

Playing with Brielle's iPod after going out for some ice cream.



At an American Heritage Girls event
(AHG is like Christian Girl Scouts)
May 2011

At a cheerleading event
September 2011

Brielle and Victoria (both on the far left - holding hands)
at a cheerleading competition.
February 2012

Brielle and Victoria at Vacation Bible School.
June 2012

Brielle (in the blue t-shirt) and Victoria (in the yellow t-shirt)
at dance class.
October 2012

Brielle and Victoria at a school dance
February 2013

Victoria helped Brielle celebrate Brielle's birthday last week. And, boy, did they have fun!

Brielle and Victoria got pedicures.

 

Waffles for dinner at Brielle's favorite restaurant - Waffle House!

Victoria helped Brielle blow out her birthday candles.

Victoria is a precious gift to Brielle and our whole family. We are so grateful for their friendship.

Victoria and Brielle are certainly two peas in a pod!
February 2013

If you would like to know more about Victoria, please visit her blog!

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!

Monday's Making a Difference - What's Up Doc?

I went to a scrapbook retreat this weekend with a bunch of friends. I completed 52 and am totally caught up!

Scrapbook page #1
with some of Brielle's docs

Scrapbook page #2
with some of Brielle's docs

One of the layouts was one about Brielle's doctors. Looking at all of those business cards for her doctors, nurses and dentists (did not even include her therapists), I realized just how many medical professionals are in her life. Well... Actually, she doesn't see some of these docs any more. More specifically, she's down to just her annual visit to her pediatrician, semi-annual dental cleanings and monthly chiropractic visits. Very glad to have all of them providing Brielle with such good care, but even happier to be done with most of them!

Thanks, Docs!

Monday's Making a Difference - Linda

Brielle has participated in Special Olympics bowling since she first became eligible at the age of eight. She just loves it and has participated in Special Olympics in Texas, Ohio and now Georgia.

Linda and Brielle
at Special Olympics bowling practice
January 2013

Although she used to need more help, Brielle now does a lot of it on her own. She still needs a little help and Linda is her helper. She's kind to Brielle and there for her every week at practice. but, the best part of how Linda interacts with Brielle is that she actually treats Brielle like she's 16, not like a little kid. On top of that, Linda only helps Brielle when she needs help. Otherwise, she steps back and lets Brielle do everything else, including getting the spotlight for strikes and spares!




Brielle moves the ramp into position
and lines up her shot...



 

Linda puts her bowling ball
at the top of the ramp...

Brielle gives the ball a shove
and then watches it roll down the lane....

 



Then the celebrations begin!
Yay!

Last Saturday was the big Georgia State Special Olympics Indoor Winter Games. Although Linda was not allowed to personally help her, there were other volunteers there to help and Linda was there to cheer her on.

Special Olympics Bowling
Medal Ceremony
at the Georgia State Indoor Winter Games
January 2013

Although she only competed against one other ramp bowler, Brielle won the gold and had a blast. 


Thanks, Linda for what you do for Brielle AND what you DON'T do!!!







Be a fan!!!
 

--> For more information about Special Olympics, be sure to visit: http://specialolympics.org/  They are always looking for volunteers and I can guarantee you'll have a blast, too!


Monday's Making a Difference - CMV Mommies

Everyone needs to belong. There are few places I feel like I belong more than when I am on my CMV Mommies group. It's a closed group on Facebook of moms (and a few dads, grandparents, etc.) that all have a child born affected by cytomegalovirus or CMV  (the virus that affected Brielle) and some that have even lost a child because of CMV. Although I have only met three of them in person, they are all like family to me.

CMV Mommies
Closed Group on Facebook

As the description on Facebook describes:

"The purpose of this group is to give families of children affected by CMV an avenue to share good news; ask for support through hard times; to ask advice from those who have been there before us; share our experiences; make friends; to have a place to go on sleepless nights; and much, much more. We are linked in a way that bonds us. We have our CMV angels to share....but we also have our own health to talk about....and other family members. CMV affects everything in our life...this page is for all of it...the GOOD, the BAD, and the UGLY. I love you all and thanks for for being here for me and my family." 

 

Members from all over the world
and (unfortunately) growing each day

There are over 500 members from all over the world (literally), from all walks of life and have children with all sorts of challenges (some who you'd never know were affected to others who struggle to stay alive each day). But, on CMV Mommies, everyone is welcomed and members can share anything about their lives openly.

Every day, members share triumphs, challenges and questions. Sometimes, there are as many as 20 new posts a day. The members responses to the posts are amazing. Some posts get more than 20 or more members responding with suggestions, encouragement or cheers.

Part of Ashley's college paper
about the CMV Mommies group

When Ashley was working on a paper for her college course in Communication last semester, she interviewed me about my unique experiences in that group and how we communicate. I was so proud to be able to share that with her.

When I get on Facebook each morning, it's the first thing I go to read about what my friends are facing in their day. I find hope and strength through their stories.

Thank you, Ladies! (and Gentlemen!)


--> If you are pregnant or planning to become pregnant, please protect yourself and your unborn child from CMV:

Wash your hands often with soap and water for 15-20 seconds, especially after

• changing diapers
• feeding a young child
• wiping a young child’s nose or drool
• handling children’s toys

Do not share food, drinks, or eating utensils used by young children

Do not put a child’s pacifier in your mouth

Do not share a toothbrush with a young child

Avoid contact with saliva when kissing a child

Clean toys, countertops, and other surfaces that come into contact with children’s urine or saliva

(from http://www.cdc.gov/cmv/index.html)

Monday's Making a Difference - Susan

Celebrating Susan's birthday!
January 13, 2013

Today's "Monday's Making a Difference" is about my dear friend, Susan.

I met Susan two and half years ago at a dinner club event with my church. Although she had lived in my community for several years, she was new to our church. We talked that evening about our Praise Team and how she loved to sing. I encouraged her to speak with one of the Praise Team leaders about joining the group. Within a few months, she was sharing her beautiful voice with the congregation. 


Our Praise Team
December 23, 2012

What makes her special to us is how she interacts with Brielle. She always greets her with a hug each Sunday morning before our practice. Susan has such a kind and gentle heart and a sweet way of interacting with Brielle. She has spent many a Sunday morning sitting next to Brielle looking at Brielle's pictures on her iPod. Brielle tries to tell her who each person is and Susan actually remembers them for the next time.

We've enjoyed a few lunches together (at her home and mine) and last night we celebrated her birthday (I won't reveal which number...) with her eclectic group of friends. We had a great time together.

There are many wonderful people at  my church, but Susan holds a special place in my heart!

Our Church

Friday's Photos

Hello Friday!!!!

Because sometimes, a pictures says more than any words could....




A "chance" meeting with a stranger
and his generous gift

Stir fry always tastes better
when you help make it!



Yes, school IS more fun in your PJs!

Rain, rain, go away....
Little Cooper wants to play!

Yes! I knocked some pins down!
At Special Olympics Bowling

 

 

Hugs from Aunt Tracy
always make a difference

If you missed any posts this week, you missed a lot!

Be sure to keep in touch and be a follower!



Monday's Making a Difference - Aunt Tracy!

Back to Monday's Making a Difference posts! (Yes, I know it's been a while...)

Yep! That's Aunt Tracy
fighting wild fires!

Today's post is about Brian's sister, Tracy. Aunt Tracy is quite the woman. I first met her in high school when we were in driver's education class together. Twenty-something years later, she lives on the Idaho-Wyoming border, not far from Jackson Hole, WY and works for the U.S. Forestry Department fighting wild fires!

Although we don't get to see her often, when we do, it's just like good ole family times. The girls adore her. She's the only aunt they've really known.


Aunt Tracy hanging out with Brielle
watching movies in her room
May 2012

Earlier this year, when Tracy came to visit us for Ashley's high school graduation, we noticed something a little different. She really spent time with Brielle doing whatever Brielle wanted to do, even if it was just playing on the computer.

When Tracy came this Christmas, we noticed Tracy spent a lot of time with Brielle again.

Little Brielle with Aunt Tracy
December 2001?

Why is this so different? It's not that Tracy ignored Brielle before -- not at all. It's just that, other than grandparents, extended relatives sometimes don't know quite how to connect with Brielle, especially those who don't see Brielle very often.

Aunt Tracy is truly loved by Brielle and it was heart warming to see them truly connect this year.

Aunt Tracy showing Brielle
neat things on her computer
December 2012

Hanging out together watching movies
December 2012

Aunt Tracy helping Brielle
pull things out of stocking
Christmas 2012

Telling Aunt Tracy good-bye
December 2012
 

Aunt Tracy came to our church
to watch Brielle be an angel
in the children's Christmas
program

Luv ya, Aunt Tracy!