Wednesday, February 29, 2012

Money Matters

Brian and I met with our financial planner last night. It's always stressful for me. Even though I take care of the day to day bills and budgeting, my brain just doesn't work well with the financial planning things. I have to concentrate so hard just to try to keep up as they are talking. Exhausting.

The good news was that we are on track to be fully funded for retirement and meeting Brielle's financial needs for her life as well. Whew!

It is difficult to face the very real numbers regarding what Brielle will need to financially survive knowing she will probably never be able to have any real income from a job. She will have some income and services provided by the government, but that will only go so far and we don't want her to have to depend on that alone.

I am just so grateful that Brian has always had a good job. I am also so grateful that he is more money prudent than I am and has kept me on track, especially when we were younger (first married) when I wasn't as savings oriented.

Money definitely matters!

Monday, February 20, 2012

Three Cheers (and Strike a Pose) for Brielle!

Special Twist Dance Squad
Brielle is second to the far left
Special Twist Cheer Squad
Brielle is to the far left

It was a big competition weekend for Brielle and her Special Twist friends at the CheerSport Nationals Competition in Atlanta this past weekend!

We are so blessed that Brielle is able to participate in a cheer and dance squad specifically for girls with special needs. The squad was started by an eight-year-old girl who wanted everyone to be able to do what she loved -- cheerleading! Together with her mom, they've been coaching the squad for the last seven years. Although they do not have any special needs kids in their family, their love of the sport and their passion for helping these kids keeps them coaching. In addition to the (now) teenage girl and her mom, the squad is helped by more than half a dozen teenagers who "spot" the lifts and provide guidance to the girls throughout their routines as well as provide their friendship and encouragement. The bond between the girls and the "helpers" is precious to watch.

This is Brielle's second year participating and she absolutely LOVES it! Although it's a tough schedule of practicing year round every Sunday afternoon plus several competitions each winter and spring, it's been a wonderful experience for her. The activity is a natural physical therapy session plus gives her an opportunity to spend time with friends (kids with special needs) and helper friends (kids who do not have special needs). The best part is that she gets to spend time with her best friend! -- Think you can guess from the cheer picture which girl is her best friend?

This weekend was a HUGE weekend competition with tens of thousands of cheerleaders and dancers on five big stages at the World Congress Center in Atlanta. Loud music. "Colorful" uniforms, costumes, make-up and hair do's. People everywhere. Screaming girls. And we were one of them! It was amazing to watch all of the special needs squads performing and especially all of the cheers, respect and support the audiences gave them. Although our girls placed sixth out of 13 cheer squads and second out of two dance squads in their special needs divisions, they did their best and had a great time.

Brielle came home tired with her feet hurting from all of the walking. And yet, after being home just fifteen minutes, she was playing the video of them performing in Chattanooga from a month ago and doing their routine with the video. What a nutty kid!

Thursday, February 16, 2012

Brielle Noticed....

After an appointment with our chiropractor this afternoon, Brielle and I went shopping. We were getting out of my SUV at the second grocery store (yes, I shop at two... to get the best deals, of course!) when I noticed Brielle seemed sad. I asked her what was wrong several times, but she didn't answer. When I asked her if she felt sick, she signed to me, "No, not sick." Exasperated that she wasn't telling me what was wrong, I told her emphatically she needed to use her words to tell me what was wrong.

She simply signed to me, "People stare."

I froze -- my heart breaking and not knowing how to react. I took a moment to try to corral my emotions and pull together my thoughts.

I figured she didn't mean "lots of people" or "all people", but simply used poor sentence structure (which she almost always does). So, I asked her who stared at her.

"The ladies at the store."

I hadn't noticed anyone in particular staring at us that day at the first grocery store. It was early afternoon on a Thursday, a quiet time with few customers shopping or clerks restocking shelves. But, obviously, someone had been staring.

As we got our cart at the second store, I tried to compose myself a little better. I realized this was a "teachable moment", something mothers live for!

I asked her why she thought the ladies were staring. Brielle just shrugged her shoulders. I had hoped to get a suggestion from her, but without one, I certainly wasn't going to sugar coat the possibilities. I suggested that they might have been staring because she walks differently than other people and has to use a cloth (to wipe her wet chin from not being able to control her saliva).

Brielle just signed, "Maybe." She looked like she was pondering that possibility carefully.

I then told her I was sorry those ladies had stared at her and made her sad.

Brielle turned to me and flashed a huge grin at me and signed, "I OK, Mom." Two seconds later she asked if we needed lettuce this week since it was always her job to go pick out a head of iceberg lettuce and put it in the cart on her own.

The crisis was over. However, I was shaken for hours after it all happened turning it over and over again in my mind.

My heart breaks as I think about what she noticed and what she said. The innocence in this part of her existence is presumed lost. But my heart also swells knowing she is growing up and noticing the world around her in a different way.

PROLOGUE: When my older daughter, Ashley (18), came home from school I told her the story. Her eyes welled up with huge tears and we hugged. I'm not sure if it was harder to hear Brielle's comment and deal with that or watch her sister crying. Gosh, it's tough being a mom sometimes....

Monday, February 13, 2012

Happy Birthday, Brielle!

Sixteen years ago today, Brielle was born.

I had the chicken pox when I was six week pregnant. Our doctors watched the pregnancy very carefully. There was a risk that our child would be born without arms and legs. Our baby appeared perfectly healthy for many months.

When I was eight months pregnant, an ultrasound showed our baby's head circumference was small. An amnio showed cytomeglovirus (CMV). We had new concerns. Doctors told us there was a 40% chance that our baby would die at birth due to liver complications. There was a high risk for hearing loss, seizures, cerebral palsy, and mental retardation as well as other health complications. It was a long month waiting for our child to be born.

Brielle was born on February 13, 1996. She was beautiful! More importantly, she was healthy. No liver damage. No hearing loss. No health complications at all. A CT scan showed there were several small calcifications on the left side of her brain. We could only wait to see what impact those would have on her life.

It is sixteen years later and there was an impact on her life. But, there was also an impact my life. Changes. Big changes. Yes, I was changed by a child, my sweet child.

Today we celebrated her precious life. Balloons, cake and presents, of course! But also by remembering these last 16+ years. There are more happy times than sad ones and right now, that's all that matters!

Happy Sweet 16th Birthday, Brielle!!!!