Something for the Cause

Feeling mighty proud to have our story be featured on the StopCMV.org website!

If we could just stop CMV from infecting more kiddos indeed. That's a nobel endeavor I'm proud to be a part of. :)

http://www.stopcmv.org/en/stories/brielle.html

Brielle Said What???



Brielle admiring herself
after a haircut from Mom in April 2009.

Brielle was keeping me company the other day as I was getting ready to go out. Brielle was admiring herself in my bathroom mirror as I was putting on make-up.

She leaned into the mirror and made kissing sounds – something she sometimes does “by accident” but cannot do on purpose. She started laughing at herself and I joined in. I made lots of kissing noises in the mirror right back at her.

She turned to me and signed, “Mooooommm, stop.” I told her I loved those kisses and I would never stop.

Then she finger spelled, “S-H-U-T U-P” and laughed at herself.

I was shocked that she even knew that phrase. I couldn’t help but to start to chuckle.

I composed myself quickly and went into mom teaching mode telling her that wasn’t a nice thing to say. But, on the inside, I continued to chuckle.

I love it when she surprises me with things like that. It’s a small glimpse at being “normal”.

The "R" Word

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.

Follow Me!

Welcome! My blog is official! It was time to share my blog with friends and family.

This blog is about my journey with my daughter, Brielle - the good, the bad, the things you never knew, and the things I might not share with you directly.

It is also snapshot of some of the things I am including in the book I am writing, Brielle and Me: Our Journey with CMV and Cerebral Palsy. Although I am still in the process of writing the first draft, I hope to finish in the next year. Watch the "News" section in the upper right column for more updates!

I plan to write entries at least once a week. So, please come visit here often!

Become a follower!  Just click on the "Join This Site" button in the lower right column and you will be notified each time I post a new entry. And please leave a comment for me!  

Welcome to our journey!

A Fairly Informative Fair

Brielle and I went to a special needs agency fair today sponsored by our local school district. Even though we homeschoool, I learned about the fair through a social networking site. It was quite an overwhelming experience.

There were booths with about 40 local agencies that serve the community in a variety of ways. Everything from organizations that provide recreational experiences and educational needs to living arrangements and legal services.

The booths that focused on special needs adults in our community were quite the eye opener.Some were great to see -- activities, work opportunities, continuing education, active day care, and group homes. However, it was sad to know that so many of those have long waiting lists, especially the group homes.

There was a booth representing the Social Security administration. Although Brielle cannot currently qualify for funding from SSI due to our family's income, it's something we'll definitely need to look into as she approaches her 18th birthday.

Another booth was a legal service that helps families obtain guardianship over their special needs children turning 18. I learned it costs approximately $700 to achieve guardianship between the lawyers fees and legal fees. How can some families afford that?

I knew obtaining guardianship over Brielle was something we would need to do, but hearing about the ins and outs of getting it done and consequences was a bit unnerving. I learned that when guardianship is achieved, it takes away many rights of the special needs person. I realize it's there to help families whose adult children cannot make financial, legal and health care decisions. However, I also learned the person would never have the right to vote, sign a contract (even a cell phone contract), or get married. That last one rattled me.

Will Brielle ever find someone special, fall in love and want to get married? I hope so. But, in some ways it is very difficult to imagine. It was sad to think about her right to marry being taken away when we assume guardianship over her.

There was a guest speaker, a parent liaison sort of person, who talked about empowering your children and preparing them for their future. Nothing too new for me, but lots of good reminders that I needed.

Part of her talk was about how laws have changed over the years. I know about ADA, IDEA and some other laws that have acronyms. However, I never gave much thought to how it all started and what parents of special needs children went through to make those laws a reality and make the lives of our children a different reality than what was in the past. Got me really thinking.

We came home with a bag full of fliers and brochures. All of that "light reading" will have to wait for a day when I have the time and can muster up the positive energy to go through it. For today, I walked away feeling very grateful for the organizations in our community and for the parents who went before us and made a difference in our culture for people like Brielle.

A Happy Shopping Trip... Finally!

Brielle and I went grocery again today... our usual Thursday afternoon outing. I was on alert after the incidents of the last few weeks.

We were checking out after an uneventful shopping trip through the aisles. The bagger was a young woman in her early 20's. She smiled and asked the usual questions. "Do you want your milk in a bag?... Did you find everything OK?... How are you doing today?..."

Then a bit of a shocker....

She turned to Brielle and asked, "What fun things have you been up to today, Cutie?"

Brielle turned to me puzzled. People rarely speak directly to Brielle, certainly not strangers. I encouraged her to answer the lady. Brielle started signing to me very energetically.

"My daughter said, 'I learned about magnets today at school with mom'," I interpreted for Brielle.

The woman's eyes lit up with a huge smile as she continued her work and asked, "What did you learn about magnets?"

Brielle smiled and signed for me to interpret all about how magnets attract and repel each other because they have a north and south pole. She giggled loudly as she signed about how it's not like Santa at the North Pole though. The lady chuckled at that comment, too.

The lady was friendly smiling and chatting with Brielle for those few minutes we were in her checkout lane. More than that, she clearly went out of her way to interact positively with my disabled child in a way most people don't even bother.

Now that's a special deal at the grocery store!

Wedding Day Blues

Our Wedding Day - March 10, 1990

Our 22nd Anniversary - Today

It is hard to believe it has been 22 years since our wedding. A lot has changed. We have changed. A little grayer. A little heavier. A little older. A lot smarter.

I feel so lucky to have met a wonderful person 27 years ago. So lucky that he wanted to marry me. So blessed to have our wonderful life together despite everything.

We celebrated last night by going out for a few drinks and enjoying a nice meal together. He sent me a beautiful bouquet of flowers today. Their fragrance is filling the house and reminds of the flowers we had on our wedding day.

It was so disappointing that Brian had to leave for Shanghai this morning for a business meeting all week. Ashley had to work today, so it was just me and Brielle for the day. Although Brielle and I stayed busy during the day running errands, I still felt a little down spending the day apart from Brian.

An anniversary is a time for remembering and for being together. At least if we couldn't be together, I spent some time remembering. I looked at our wedding album, as I always try to do on our anniversary. Who were those young people? Did they ever wonder what their lives would be like 22 years later? I can't imagine they thought it would be like this. In some ways, it is even better than those young people could have imagined.

Love you, Brian!

What's Up Doc?

I set a personal goal this year to write an old-fashioned, hand-written letter or card to a friend or family member each week. I've had overwhelming great responses from people I've written so far.

This week, in our honor of my girls' recent birthdays, I decided to write a letter to the OB/GYN doctor we had when they were born. I thought it would be a fairly short letter, but it ended up being 14 stationary pages long!

I know this doctor has delivered many babies over the years. So, I reminded her of who were were. I hoped from our unique story with Brielle (the chicken pox and CMV), she might remember us. I also included pictures of us taken on the day each child was born and a family picture we took last week.

I thanked her for the care she gave us for both of our pregnancies and deliveries. I told her how we are doing and especially how Brielle is.

I couldn't help but to also give short plea for her to counsel other mothers about the easy measures they can take to help prevent CMV from affecting their own babies.

Although I am not expecting to hear back from this busy OB/GYN, I felt really good about sending a personal letter of thanks and giving her an update.

And the weekly letter writing campaign continues......!

Big Sister's Birthday

Ashley is 18 today!

Wow. How can that be? It seems like not long ago we were taking our first born child home from the hospital, healthy and sweet. I remember Brian and I just looking at one another after we took a few minutes to get settled. What now? How could we ever know how to be good parents?

Eighteen years later, we are Ashley's proud parents. She's a great kid, never gave us any trouble, works hard, gets good grades, active in a few school activities, has a part-time job, has many friends, and, most importantly to us, is happy, bold and confident.

In less than six months, Ashley will be going away to college a the University of Central Florida in Orlando to study Hospitality Management. I still can't believe we are letting her do that. We are going to miss her SO much.

I think of it often, but especially on birthdays..... How would Ashley's life be different if Brielle had been born healthy?

In so many ways, Ashley is more like an only child. Even though they are about 23 months apart, the sisters never swap clothes, whisper about boys, or even fight like so many other siblings. Ashley is kind to Brielle and very generous with her time to Brielle.  But, I can't help wonder how Ashley's life would have been different.

At moments like this, I especially try not to think about how different Ashley's life will be going forward, especially when Brian and I are gone and Brielle ultimately becomes Ashley's responsibility (directly or indirectly).

Instead, I am focusing on the joy that Ashley brings us and enjoying her special day. We watched old home movies from the day she was born until she turned one year old. We all went to the movies together and plan to go out to her favorite Italian restaurant before heading home for cake and presents.

Today is a good day. Life is good.

Brielle Noticed (Revisited)

What is it about our Thursday trips to the grocery store????

We had just arrived at our second grocery store and were in the produce section. I was picking out onions and Brielle was headed back to the cart after getting us a head of iceberg lettuce. She was all smiles, HUGE smiles. She pointed to a lady near the broccoli who had her back to us. Uh oh, I thought. Here we go again....

When I asked Brielle who that was, she signed, "Friend. She said hi to me."

We are very used to people knowing Brielle from school or other activities and greeting her in public. Half the time, Brielle doesn't know who they are. Sure enough, Brielle couldn't tell me who this person was and that wasn't the surprise. A small surprise was that this lady didn't come over to introduce herself to me or talk more with Brielle. But, I dismissed that little breech in proper manners. It wasn't a big deal standing there in the produce section.

As it happens so often when you're in the grocery store, this lady seemed to be walking through at the same pace and on the same path as we were. We often passed her or we followed her or she followed us. Not odd. Happens all of the time.

But also very often on this day at the grocery store, Brielle broke into huge smiles, pointed at the lady and signed to me that the lady was being nice to her, saying "hi" to her or waving at her. Not completely uncommon, I suppose. Once in a while an adult stranger might go out of their way to be nice to Brielle.

The odd thing was that this lady never made eye contact with me. Every time I looked in her direction, she seemed to be very "busy" looking at whatever was on the shelves in front of her at the time. It was as if every time MY back was turned, she took the opportunity to engage Brielle.

This happened throughout the store during our 30 minute excursion there. Finally, when I was unloading our cart on to the conveyor belt, I caught this woman trying to interact with Brielle when she thought I wasn't looking. I waved and smiled as she passed us and entered the checkout lane two rows down. I hoped that might encourage her to at least acknowledge ME in some way. Instead, she seemed to try to hide her smile and went on her way.

Did she even know Brielle? Had she seen Brielle and I signing over tomatoes and knowing a little sign language decided to greet Brielle? Does she have a special needs child at home or in school, but just didn't know how to approach me? Why the secrecy? I didn't think she was some child snatcher or something. Her odd behavior intrigued me more than creeped me out or put me on the defense.

I wish I had been bold enough to just ask this woman who she was and why she was being so secretive about communicating with my child. However, my confidence was weak and I was in a hurry to get home to beat the rain showers. We pushed our cart to out of the store to our car and didn't see her again.

So, this makes two Thursdays in a row of strange interactions with strangers at the grocery store. Maybe we need to break our routine and try going to the grocery store a different day of the week.