Happy Birthday, Beautiful Boy!

On October 2nd, 1999 we welcomed our son and brother into the world. There were times we didn't think he would make it out of the NICU. Along the way there have been other frightening moments, times we thought we might lose him. But here is Ben Waddell - our hero, a source of never-ending strength and courage, and an individual who has taught us more about living than any other.

Today is bittersweet for me dear Ben. I am traveling to another show because my job requires it now. It is a job I love and it is only because of you that I'm living a dream. But know that I'd rather be with you than anywhere else in the world today.

When I return we will celebrate. We will laugh, smile, play, share our love as we do most days now. Thank you Ben for the treasures you have brought our home. We so very much love you!

Dad, Mom, & Jessie

Progress Report

A few days ago Jessie brought home a progress report from school. We were quite pleased as was she that she's currently making straight A's in each of her classes! Ever since she began her school years Joan and I have made it a great effort to not make such a big deal if she doesn't quite reach perfection. For us it's been more important that she enjoys the academic experience and actually learn things rather than feed off the competitive nature that standardized tests have made academia these days. Obviously that philosophy has paid off at least in our household.

The progress that Ben makes at school or in his outpatient therapies isn't as easy to to judge. There are no grades or tests that keep us abreast of potential problems or underachievement. Ben's gains are measured by minute accomplishments like remaining healthy for weeks or even months at a time. They are also measured in smiles, the amount of sweat soaked into his shirt after lifting him out of the stander, or having a doctor tell us how much muscle tone he's gained since his last visit.

Yesterday was an extraordinary day for those of us that care for Ben. Just before walking down to the bus stop to meet Jessie after school I popped in on Nurse Stacey playing with Ben. She had him sitting up in a therapy chair that he's never quite liked but this day was different. She had hooked up an interactive TV game that he was mesmerized with. Ben had his right hand over the game's joystick on the small desk attached to the chair. Stacey remarked how well Ben was doing with the game - evidently she assumed that we already knew what she was witnessing.

For the next few moments I sat there stunned as Ben maneuvered a vehicle on the screen through a variety of mazes! Not just once but three more times through three different mazes! I grabbed our video camera and of course he immediately quit playing. After I walked Jessie home we tried to get him to accomplish the feat again with no luck.

So we waited until Joan arrived home for another attempt sans the camera. Although he wasn't as successful as he was a few hours earlier he did manage to complete one maze by himself. To say the least we were blown out of the water yesterday!

It just feels so good at times like this. To know we've reached another plateau just makes our hearts soar. And it is so interesting to digest the reactions by each of us. While me, Joan, and Stacey were exuberant Jessie was not all that surprised. Perhaps our daughter has reached a level of understanding herself that can't be measured in testing or grades?

No Longer a Secret

Ben and Bennie will be a guest on Paula Zahn Now tonight between 8 & 9 EST. The show is on CNN so I guess CNN doesn't suck as much as I said it did last week.


Aside: A clarification needs to be made here. Paula's producer, Kari Pricher, informed me that Nancy Grace is on Headline News and NOT on CNN, so perhaps that previous post title should've read "Headline News Sucks!"


Anyway we will be getting an opportunity to share our story and support for Ashley's parents with a national TV audience. I think I'm gonna puke now...

More later.

_____________________________________________________________

This was in my inbox this morning:

Hello Ben and Bennie,

We enjoyed visiting your web site and getting to knowing you...through the photos. We got a kick out of your thoughts and stories.

We’re glad you will be on CNN tomorrow and will be watching. Good Luck!

(Ashley's) Dad

Missing the Holidays Already

It was back to school for Jessie and her classmates today. Ben should have been at school but we've done a good job of mixing up his days and nights over the past two weeks. We'll make a better attempt tonight to make sure he's in bed on time and ready for sleep.

It was interesting meeting up with the other parents who walk their kids home most days. I've gotten to know some of the other mommies and even some dads a little bit better by escorting Jessie home on non-rainy days. Not one parent said they were ready for school to start back! I truly find that unusual.

Of course most wanted to know how Ben fared given his past. It was indeed a pleasure to report how well he is doing. It goes way beyond just being at home with us for a change. In fact Ben blurted out another word just today that we've never heard him say. I was watching Nurse Lisa helping Ben put together a Floam turtle. Floam is basically a liquid Styrofoam that you can shape into objects. It's like Play dough but more gross and sticky, plus it comes in fluorescent bright colors. Ben loves the stuff.

At one point Lisa asked Ben if he wanted to use blue. Ben shook his head indicating no (which he's been able to do for several years now). She then asked whether he wanted green or yellow? The little booger without hesitation said "yellow!" This has happened a number of times over the past three weeks and we do have a theory.

Joan and I talked a long time last night about how much Ben has progressed since he got his new wheelchair. We agree that it is no coincidence that his latest "awakening" occurred after that chair was delivered to us. Why? We have no idea. We know that he is more comfortable sitting up now and that he can use his peripheral vision better. He also has gained a great deal of confidence. Does he tie his identity to that piece of equipment that has become so important to him? We won't know until he can communicate with us a little bit better. But that won't be long if he continues to progress like he has the past month!

Here's a short list of words Ben has used without hardly any encouragement over the past week or so: yellow, animal, more, turtle, Graham (name of his cousin), Elmo, and Sponge Bob.

Art Just By Ben! Limited Edition Print!

This turned out absolutely incredible! The artwork is totally created by Ben!!! I've spent the entire morning playing around with this monotype print Ben made at school a few weeks ago. After some unsuccessful attempts I nailed this beautiful giclee' print. The image you see above is the actual giclee' scanned once more so that you can see that this will be a limited edition print of 100.

We will only sale this print through the blog and at ArtByUs.com (see the sidebar for the link).

It is 8" x 10" printed on canvas paper (man, that makes it look so very cool!!!) so it will fit a standard frame. Because this was an entire Waddell family effort (all four of us participated) we collectively named it for Ben so it is entitled "Ben's Web."

Print #1 (seen above) is priced at $35 which includes shipping. All others are $25 (shipping included as well). We will include a personalized description on a stamp you can place on the back of the eventual frame. Be assured Ben's "signature" paint-covered hand will be on it somewhere.

Print numbers 2 through 7 have already been claimed by family and close friends. I am working on a smaller 5" x 7" version which will not be an open edition printed on non-archival paper. that print will obviously be cheaper.

To purchase on of these e-mail me at benwaddell@bellsouth.net. Please include your mailing address or any other special information. Also include how you would like the stamp to be personalized and how you will be paying. We accept PayPal, Visa, Mastercard, and personal checks.

Blogged By Ben

Hello everyone! I've had an awesome week. I am really enjoying my new wheelchair so much that my mom and my sister call it my new "bike." I guess my reaction has been like Jessie's when she got her new bicycle.

Thanksgiving Day was great. I still don't know what it's like to eat turkey but this was the first holiday that I could speak loud enough to get everyone's attention. And did I want some attention! Then later in the day I watched football with Dad. I have always liked sports! It is fun to watch the people on TV run around and play. Plus I usually sit in Daddy's lap so he can tell about how to play those games. My Dad's favorite is football but I like basketball and car races better.

Unfortunately our big TV broke this week. Mom told Dad that we can't get it fixed until he sells some more art. Our other TV is a little too small for me to enjoy so I'll probably spend more time playing with toys and helping Jessie play computer games.

This morning I took a bath with my Dad. I love to get in the tub and splash around! It's almost like swimming. In fact my Dad does some of my hydrotherapy excercises when we bathe together. He was so proud of me this morning because I moved my legs in a bicycle motion for the first time! Maybe I did get a bike this week!!!

Tonight my Me-Ma and her friend Ken are coming over for dinner. After that we are going to put up our Christmas tree! I have always enjoyed any kind of special lights. When I visit new places I always check out the lights first. If they are bright and colorful I know we are some place fun.

Well I must go now. I have my miniature cars to attend to and an appointment with Mom and my favorite books. Talk to you soon!

The picture of me and Ken sitting in our swing on our backyard deck. Ken always makes me laugh and smile really big!

Priceless!

A Day at My School

Here I am participating in reading a book during Circle Time. We do this every morning. Me and my classmates take turns answering questions using that big blue button. It is called a Big Mac (no, not the hamburger silly). Miss Kristy records her voice on it and when we press it down we can hear her answer for us! Of course me and my friends are already chatting most of Circle Time.

I do a lot of this at school!


Remember the Pumpkin Patch? I brought one to class for all of us to enjoy. Today Miss Kristy carved it into a Jack O'Lanturn. It was kind of ooky inside but he had a funny face when she got through. Can you see all of our Big Macs on the floor? Also you can see my best friend Justin sitting in front of Miss Kristy!

Today was my day to get physical therapy. This is a brand new walker the school just received. Notice how well I am holding my head up! It wasn't too long ago that I could only hold my head up for just a few seconds. Mom and Dad told me that I couldn't hold my head up without support for the first two years of my life. Today I stood in this position and looked around the room for 45 minutes! I even took a few steps with Miss Porter, my therapist, helping me.

This is a fun thing to play on. My Dad wants to get me one for our pool next summer! I can't make it rock as good as Justin can but I'll get as good as him one day!

Art Adventure #2

The artists discuss which color to begin with.

Ben chose to work with teal - an excellent choice!

"Let me do it!"

This is big time fun!

Two hands.

Cha-Cha-Cha-Changes

Every so often raising a child with special needs brings about situations that outsiders (those of you with fairly normal existances) can't quite understand. For those families with a child of severe problems one of the first things we have to get used to is having strangers practically living with us. Ben has had almost constant nursing since he arrived home from the NICU in early January 2000.

Mary Brady was Ben's first primary nurse and Ben was Mary's final pediatric patient. In the first six year's of our son's life, Mary went from working all of Ben's weekday hours to finally just working one day a week. Along the way Mary and her husband became part of our family. It naturally happens when someone works and lives their life right there in your own abode.

She was there when our family business was slowly deteriorating away. She saw the pain me and Joan were going through. She saw the worries and grief during the times Ben was hospitalized. She watched Jessie grow from a toddler into a young lady. She was there for all of Ben's wonderful accomplishments during therapies. She shared our journey, the journey that only another family member could appreciate.

It was truly a sad and happy day when she clocked out on our kitchen phone for the last time this past Spring; the day she began enjoying a well-deserved retirement.

And so it is different for us "special families" when folks who were once strangers that pass into and out of our lives. Early last year Vickie Robertson took over as Ben's primary nurse. She and her husband were still getting used to having their first child Haley in their household so she was quite accustomed at having to change diapers, deal with formula, and keeping a constant eye out for subtle changes in a little one's health. We immediately liked her but more important Ben really liked her!

Vickie took charge of Ben's therapies as I began leaving home more often preparing or traveling to art shows. Ben responded to Vickie just as much as he had for me. She challenged him and he liked it. It wasn't long before I began seeing Jessie arrive home from school and shortly after appearing under one of Vickie's arms with Ben under the other reading a book.

I met Daniel, Vickie's husband, for the first time on Christmas Eve last year. It was the first time in Ben's life that one of his caregivers came to see him in the hospital. It meant a great deal to us that they visited that evening.

As the transition began to move Ben into a school setting this year, Vickie gained even more admirers at The Washington Center. That was quite evident when I broke the news to their staff this morning that Vickie had received a promotion with our nursing agency. We knew it was bound to happen because she is a very bright young woman with a great future ahead of her.

So it is with sadness and joy that we will soon say farewell to Vickie as Ben's primary nurse. We are sad that we soon won't get to see her each day but we are happy for her as she continues her journey to accomplish her dreams and goals.

Thanks for this special year, Miss Vickie! Just like Mary, Julie Guy, Cheryl Laport, Beth Teshon, Jackie Holland, Barbara Rhoell, and Jennifer Reece, your "other family" will always here for you.

The Birth of an Artist!

Choosing the first color.

Trying the brush out.

Forget the brush. This is more fun!

Two happy artists!

Going solo.

Adding some finishing touches.

Colorful fingers!

Check back here tomorrow and see if we've completed our first painting!