Special Exposure Wednesday

It's hot - It's humid - It's the Fourth of July!! And there's always time for little basketball before the cookout! Happy Fourth of July, everyone!

Memorial Day

It's easy to think of Memorial Day as simply an extra day off work, a three-day weekend. But the day is meant to honor the men and women of the Armed Forces who gave their lives in the service of their country. Just saying "Thank you" seems so inadequate, but I will say it anyway.

I enjoyed another great Mother's Day on Sunday! Actually, the entire weekend was great!

On Saturday the kids and I went fake shopping. That's where we go and try on things that we have no intention of buying. This time we went to Target. Ashley was resplendent in hats, scarves and sunglasses. Ronnie was every bit the ferocious avenger!

On Sunday, I got phone calls from Jessica and Corey, and Ronnie, Chip and Ashley took me to a baseball game. Our team won and I ate a corn dog! Life is good!

Favorite Things!

Ashley celebrated her birthday Saturday with some of her favorite things...

Shopping for plants for our garden...



Counting the big round lights at the store...



Eating Elmo cupcakes...



And smelling the beautiful flowers her brother, Chip, bought her...



And of course, a lot of shopping for new clothes!! All in all, a very good 17th birthday celebration!

She and I

Seventeen years ago today a baby was born weighing just under two pounds. She entered the world just as she has lived her life – kicking, screaming, fighting, and determined to have her way. She endured liver biopsies, brain surgeries, eye and ear surgeries, monitors and enough medicines to fill several gallon sized containers. Then at age two, she found her way to me, the mother she was always meant to have.

We’ve struggled, she and I…so many medical issues about which I knew nothing…the closest brush with death that I hope never to experience again…the school battles and lawsuits…the insurance battles and lawsuits…and the general growing up in a crazy world issues (OMG, the teenage years….). But through it all our hearts have grown virtual connective tissue. We are of one heart now, she and I, one heart that must have its two parts intact to survive.

Her smiles as she opens her eyes and turns her face to me each morning turn the world into Technicolor. The touch of her hand on my face when she wants to make sure I understand what she is trying to tell me imparts a peaceful understanding and acceptance that everything is right and good. And when I look into her eyes, I see the wisdom, the truth, and the love that God has imprinted on her soul.

She is my beautiful daughter, one of the strongest loves of my life, the child I dreamed of when I was a child. I cannot imagine not having her in my life or my not being in hers. God willing, we will have many more years together, and when God decides that it is my time to leave this world, I sincerely hope she is just one breath away from joining me.

Happy birthday, my dear Ashley. Love, mama.

Purple Day

Yesterday was Purple Day. Purple is perhaps the color I despise most. I don't know why, but whenever I have tried to wear something purple or to use purple in my home decorating, I feel like I have a constant creepy crawly itch all over, sort of like just realizing you have sat next to a tree full of chiggers.

But still I celebrated Purple Day yesterday.

Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. This year, people in dozens of countries on all continents INCLUDING Antarctica will be participating in Purple Day!

So while I couldn't bring myself to actually wear purple (remember those chiggers), I did celebrate by holding my sweet Ashley just a little tighter and a little longer!

Ashley has had seizures all her life. When I first adopted her, she was having 2-3 a day. When she was just three years old, she had a status seizure and the only thing that kept her alive was life support for three weeks. Her doctors and I have been through many medications trying to get her seizures under control, but have never been completely successful. But things have definitely gotten better.

About the time Ashley hit puberty, her seizures changed a bit. Instead of grand mal type seizures, she changed to complex partial seizures. But the number of seizures went up to 6-8 a day. That was where she stayed for several years as we experimented with different medications, all of which had a lot of undesirable side effects. Also about this time, we discovered that she has three brain tumors. The doctors feel they are benign tumors and that they are not the source of her seizures. So, I have made the decision not to put her through brain surgery at this time.

Then as Ashley emerged from the puberty storm, her seizures changed yet again. While they are still complex partial seizures, they are shorter in duration and fewer and farther between. Now she may only have 2-3 a week. And, she can now tell when one is about to happen and can get herself into a safe position to avoid injury.

So all in all, things are much better. I hope that one day she will have no seizures, but at least things are manageable right now. Seizures will mean she would never be able to get a driver's license - well that and the fact that she is blind - but there is little else that she can't do.

So in honor of Purple Day, I resisted the urge to scratch and donned something purple. Purple Day or not Purple Day, she is one of the most important people in my life and I would do anything for her - even wear purple!

Special Exposure Wednesday

Ronnie is enjoying his birthday breakfast from McDonalds! Happy 17th, son!

Happy Fourth!

I hope you all have a safe and happy Fourth of July!

The Music All Around Us

So Steve Jobs, CEO of Apple Computing, announced iCloud on Monday. iCloud is rumored (facts not available at the time of writing this post) to be a “digital locker” type service for the storage of music. It may be very similar to Amazon’s recently released cloud storage service for music.

That’s just what some of my kids, and most of their friends need – another reason to keep ear buds stuck in their heads.

I did a very unscientific study a couple of months ago at Chip’s college. Nine out of ten college students that I observed walking around campus had ear buds in.

I love music, and when I was college age, I’m sure I did my share of listening to music. But now I find music in things other than iPods, MP3 players, and yes, even iClouds. I love hearing the sound of birds early in the morning. I love the sound of wind whistling through the trees. I can sit on my porch and listen to the sounds of my neighborhood – doors slamming, cars starting, children laughing – for hours on end. The pfft, pfft sound of the water sprinkler watering my garden brings a smile to my face, and the woodpecker who has lost his way and is banging his head against my neighbors aluminum siding always makes me laugh. I enjoy trying to figure out what kind of insect is making a certain sound, and I am constantly amazed by the incredibly fast fluttering sound that comes from the hummingbirds congregated around my red honeysuckle plant.

And sometimes, I like just hearing nothing – that silence that along with closed eyes can transport me to another time and place.

I worry that my children (the ones who can hear) will miss those things. I worry that their heads and their memories will only be filled with the likes of Will.I.Am, Jennifer Lopez, and hundreds of other musicians, not the sounds of the world around them.

Maybe it’s an appreciation that will come with age, but I want them to have the experience of those sounds now so that their memories can transport them back in time when they are older.

Maybe I just need to hide all the ear buds for a day or so, assuming I could even get them out of their ears!

Thank You

While Memorial Day is punctuated with pool openings and barbecues, I don't want to forget the real meaning behind the holiday.

Thank you to all those who have made this world a safer place.

Thank you for allowing my children to dream.

Thank you for making it possible to envision a future.

Thank you for ensuring that this wonderful country lives on and on.

Thank you for making our barbecues and family gatherings possible.

Thank you for all your sacrifices.

Today my prayers are for you and your families. Happy Memorial Day!

A Lot of Thank You

Ronnie gave me the sweetest Mother's Day present. It was a small bowl in the summer colors that I like so much, filled with candy and a handful of small cards - about the size of business cards. On each one, he wrote a 'Thank you' note.

Here's a picture, and then the 'Thank You' notes...I think he's a keeper, don't you?!



"Thank you for helping the State of Virginia at your job"

Our family makes lots of dirty dishes. Thank you for washing them"

"I like it when you make cake for me"

"Thank you for giving me a home and for giving me a good life"

"Thank you for talking to me and using sign language"

"I think you will take me to find out about my implants"

"Thank you for letting me play baseball in June"

"Thank you for buying me clothes. Buying clothes is expensive"

"Thank you for driving me to basketball. I like playing with my friends"

"Thank you for doing lots of laundry for us"

"Thank you for buying food for our family"

"Thank you for driving me to many doctor appointments"

"Thank you for driving me to PT so I can learn to walk"

"Thank you for cleaning the house"

"Thank you for taking care of Ashley, Corey, Chip, Jessica and me"

A Mother's Day Experiment

I know that there are many, many special things about your children, just as there are about mine. But let’s do something in honor of Mother’s Day.

Tell me one special thing about each of your children. I know it might be difficult to narrow it down to one thing, but just put the first thing that comes to your mind. Here’s mine:

Chip
One of the most intelligent and caring men I have ever known. And, he is only 20 years old.

Corey
So comfortable working with young children and animals. He really should consider a future in one of those areas, but the military is issuing its siren call.

Jessica
Never holds a grudge. People can say mean things to her, or make fun of her, and though she is immediately angered and hurt, she will forgive in a moment.

Ashley
The most inquisitive and fearless child I know. Those qualities have really served her well considering her disabilities.

Ronnie
A heart full of hope when it could be filled with anything but that. Even the hard life he has led up to now has not kept his spirits down.

Now, sometime on Mother’s Day, ask your children to describe the quality they like most about you. Then come back on Monday and let me know what they said!

An After-Easter Egg Hunt

VAAPVI, the Virginia Association for Parents of the Visually Impaired had planned a beeping Easter Egg hunt for the weekend before Easter. Unfortunately, we had a week and a half of monster storms, and the egg hunt had to be postponed.

It was held this past weekend, and the weather was beautiful! The beeping eggs were made by our city's police bomb squad, and then they were 'hidden' all over the football at the University of Richmond. They even made vibrating eggs for Ashley to find!

Everyone had a blast - well, except Ashley, when the Easter Bunny tried to make nice with her :)

Spring Break - Ashley Style

It was a week for catching up on sleep, being spoiled by Miss Amy, some crafts, wearing some new clothes, cookie baking, and a trip to the dentist. All in all, not a bad week!

Here are some pictures of one of Ashley's creations. It is a light fixture made of chicken wire, tissue paper, glue, ribbon and whatever sparklies she could find. We need to buy the light kit and a hook to hang it from her bedroom ceiling!







And of course, applauding yourself for a job well done!



Here are the cookies - brown rabbits and multicolored 'eggs'. Big brother, Ronnie was a HUGE help!





And finally, the dentist. Ashley was VERY good, and even tolerated X-rays. Never - never in 16 years has that happened. She was so proud that she carried a copy of the x-ray home with her!





Saturday brings a trip to the circus, and Sunday, big sister Jessica is coming home for dinner. Then it's back to the salt mine - er, school - on Monday!

Hope you have have a wonderful Easter weekend!

A VOPA Victory

If you were the family of James Roots IV you would surely want to know why he was allowed to die in the institution that promised to help him. You would want to understand why he was held in restraints for over 30 hours, even after he complained of being unable to breathe.

If you were the family of a patient at a so-called training center (read institution), you would surely want to know why he was allowed to swallow two latex exam gloves and subsequently die.

If you were the family of another person at that same training center, you would surely want to know why your family member’s ear was chewed off and where the staff were that were supposed to ensure such incidents never happened.

But the families of these three people were not told anything. They wanted details and the details were withheld. Then, with the assistance of the Virginia Office for Protection and Advocacy, legal proceedings were initiated demanding that the records be shared. The state agency in charge refused, and the circuit court in Virginia stood with the state agency.

But the wonderful staff at VOPA refused to let that deny the family members their information. The case went to the Supreme Court of the US and yesterday, that court ruled in favor of VOPA. Read the story of this historic decision here.

VOPA has been a Godsend to my family, and especially to my Ashley. I’ve written about them many times over the years, but here is one such post.

I applaud these champions of Virginians with disabilities. You continue to make a positive difference, and I am so very proud to count myself as one of your ardent supporters.

What a Difference a Year Makes

What a difference! Last year’s IEP meeting for Ronnie included 20 people, 2 of whom were attorneys. The meeting was contentious to say the least and ended with Ronnie’s former guardian ad litem being removed from the school premises by the county police. This year – 5 people, all smiling, all in agreement, all satisfied with the final IEP document and all the decisions that were made.

Instead of listening to the guardian ad litem talk about what a poor, mentally retarded child Ronnie was, I heard this:

• He has made such progress this year!


• The test results from before that showed he was borderline to moderately cognitively impaired were all invalid because the tests that were used were not normed for a child that was deaf.


• Any deficits he does have in reading and writing are due in part to his deafness and use of ASL and in part to his not receiving appropriate services in the past.


• He’s the happiest kid at the school!


• He wants to go to the culinary arts technical center, and we think he should.


• He’s the best basketball player on the team.


• We’re so proud of him!

Of course, Ronnie and I were both beaming through all of this.

There are going to be some changes in his program, but he and I agree that they are changes for the better. For example, my school district has had Deaf children (both oral and signing) spread throughout the county in several different schools. A new high school just opened this year (described by one person as a palace), and it will house the entire Deaf program. While I am a staunch advocate for children with disabilities going to their home schools, it does make more sense for Ronnie to be in a Deaf culture environment, an environment where he doesn’t have to struggle to communicate with his peers.

The new high school is just a little further away from our home than his current, very old, campus style school. The new school is not a campus school, meaning he will not have to contend with hilly sidewalks and bad weather while traveling about the campus in his chair. All his Deaf friends that currently attend the current school with him will also be moving to the new school.

He is excited and so am I. He is also going to tour the school and report back to the administration staff where any improvements in accessibility can be made. We also agreed that he would create a year-long project involving students with disabilities, and that as a result of that project, he would apply to be a delegate to our state’s Youth Leadership Forum next summer.

Oh, and he also said he is ready to learn to drive!!!

Fun times ahead, and I am so very proud of him!!!

Champions Every One

I yelled and cheered until I was hoarse, but he never heard me.

The crowd on the bleachers went crazy and stood up clapping, but he never heard them.

But I know he felt it all! After sinking a basket at the wheelchair basketball tournament this past Saturday, he would pump both arms in the air, and then immediately turn to find me in the crowd. He knows, really knows, how very, very proud I am of him - whether he hears me or not!

We drove to North Carolina, about 3 hours away, to participate in the tournament. There were lots of teams, and this was the first time Ronnie's team had ever played a real game. Until then, they had only played against each other. They learned a lot, and still had a great time.

They even played the world champion junior wheelchair basketball team. They lost but held that team from scoring until 9 minutes into the game. Their coach said that had never happened!

Way to go, Lazy Legs! You are all champions!

Sweet 16

Ashley’s 16th birthday is fast approaching, and I would really like to be able to do something special to celebrate. But..

• She doesn’t like crowds


• Too much noise and too many lights can be overly stimulating for her


• She has a very short list of foods she will eat


• And she doesn’t have any real ‘friends’ because of the severity of her disability and the communication barriers presented by her deafblindness.

All those reasons are why we usually end up celebrating her birthday at home with just the family.

But I really want this birthday to be different – to be special – something she can remember always.

Any ideas????

Happy 16th!

Ronnie's birthday was last Monday, and we had our family celebration that day. But this past Saturday, he had his official birtday party with his friends at Dave and Busters. It was great fun, and one thing made it especially great for him - his friend, Mark, from the town in which Ronnie used to live, came down with his family for the party!

Mark and Ronnie had gone to school together since kindergarten. Ronnie's move to Richmond would be the separating factor for the boys. They stay in touch via our video phone (both are Deaf), and in fact, spend at least an hour a day on the phone.

I had seen and talked to Mark on the phone, but it was wonderful to finally meet him in person along with his lovely family.

Although a couple of friends that had been invited cancelled at the last minute due to illness, Ronnie's girlfriend and another girl rounded out the party. They all had a blast, and I believe Ronnie had a wonderful day! Here are some pictures:

Square Pants and All

Part of our school day routine is to watch an episode of Sponge Bob Square Pants while waiting for Ashley and Ronnie’s school bus. This morning’s episode found Bob very unhappy because he wasn’t normal.

Sponge Bob’s friend, Squidward, yelled at Bob about how abnormal he was, listing all the things that he (Squidward) found to be weird – Sponge Bob’s freckles, the shape of his body, the way he talked, how happy he always was.

Bob was crushed! He immediately embarked on a campaign to become more normal. He bought a book about how to be normal. He engaged a teacher who could help him learn to be normal, and he practiced and practiced being normal.

Once he felt he was normal enough, Sponge Bob headed off to work – all the square edges rounded, his speech more refined, his clothes just so. At first Squidward and Mr. Krabs, Bob’s employer, loved the changes. The kept complimenting Bob for taking the initiative to be more normal, and they complimented themselves on having the foresight to advise Bob that his abnormality was just wrong.

It wasn’t long though before Squidward and Mr. Krabs began to miss the Bob that they knew. The felt he was not just normal but also boring. They truly missed his “Sponge Bobness.” Finally, it was Patrick, Bob’s best friend, who told him that he was best when he was himself. Sponge Bob immediately worked to restore himself to his former fun-loving, shrill-voiced, square-bodied awesomeness, and the episode ended with everyone happy again, even Squidward, the show’s perpetual grump.

I don’t know about you, but I refuse to let my children be “taught’ or bullied into being something they are not. I love their quirkiness, the individuality, the way they look and talk and approach the world, and especially their happy natures. Even their “Sponge Bobness”!!

Thanks for the reminder, Sponge Bob!