Shabby Miss Jenn

Thursday, June 30, 2011

Summer Fun at VLM

Today we ventured out and visited The Virginia Living Museum. Wade had such an amazing time looking at the fish as they swam up to the glass, right next to his face! 

After that, we were able to get up close and personal with some crabs, starfish, and horse shoe crabs.  I was quite impressed that Wade attempted to touch everything without pulling back.  He tends to have some pretty big sensory issues with certain textures. 

I think our very favorite part of the day--well, my favorite part anyway--was the butterfly exhibit.  Wade was so excited and interested in seeing these beautiful, fluttering insects all around him.  We even managed to get a few to land on him. 

Wade even tried to touch the butterfly himself.  His first modality when trying to touch something is his head.  So, he bent his head down to touch it.  It almost looks as if he's trying to kiss it!

Besides Curtis getting reprimanded for taking a flash picture in the planetarium and fussed at for trying to pick up one of the "not so friendly" butterflies, we had a pretty fantastic afternoon!  Wade even got to hang out in a turtle shell and fly through the air like a butterfly.  He had so much fun that he requested many times, "Do again."  Of course others may not understand what he's saying because he leaves off the initial sounds, but we know what he means:-)


I can't wait to see what other adventures are ahead of us while visiting Nonnie and Grandpa.  I'm sure whatever we do, it will be full of smiles and laughter.  One thing's for sure.  The weather here is so much more bearable than the Texas heat we left! 

Monday, June 27, 2011

Stronger Than I Ever Imagined

This article was posted on a Facebook group I'm a part of.  It brought tears to my eyes.  I wanted to pass it on to all of my mommy friends who have kids with disabilities.  YOU are amazing!
Some Mothers Get Babies With Something More

Lori Borgman | Monday, May 12, 2002

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.

I wonder how you endure the clich├ęs and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

Sunday, June 19, 2011

Dumb Dog

Our church started a new series today, called Messy, and today's service was on grace. The pastor was telling a story about his "dumb dog", ironically named Sparky. Sparky was a rescue dog, a schnoodle--schnauzer/poodle mix--if I remember correctly. Before taking Sparky to his new home, they were told that Sparky had some awkward behaviors--maybe he had been dropped on his head at some point--but otherwise, they said, he was really cute and adorable. Of course those behaviors quickly loose their "cuteness" when you're having to care for the dog more than anticipated.

It seems that Sparky needs help doing practically everything! He's so dumb that you can sit him up on a chair, and he'll just stay there perfectly content, as he can't get down. Better yet, he doesn't seem to have the desire to get down. As for house training, they don't think that's ever going to happen. The dog can't seem to grasp the concept. In order to get to the back yard, Sparky has to be nudged down the step off the porch because he can't physically maneuver the step on his own. He's that dumb! Then when he's called to come inside, he'll just sit there and look at you. Now, that's just stupid! Honestly, it was a pretty good analogy of our relationship with Jesus and those He's trying to draw closer to Him. Sometimes we just sit there and stare at Him as He waits for us. But as good as the analogy was, it was also a reminder of how different my life is today than it was four years ago.

I LOVE our pastor and our church. He's an easy going guy who tells it like it is. He's down to earth and a self-proclaimed sinner. I often relate to most of his stories and laugh at the majority of them. They're "real". I laughed this morning about his "dumb dog" because on the surface, it was funny. But as I sat there laughing, I couldn't help but think that Sparky and Wade are a lot alike. In fact, when he was talking about the things he has to do for his "dumb dog", I pictured me doing the same for Wade. My laughter became a little more subdued as it started to hide the hurt in my heart. It was just another reality check that we, as a society, find humor in people and things being dumb or stupid or...retarded. It was painful.

On our way to lunch, I expressed this to Curtis. He said he had looked at me out of the corner of his eye and wondered why I was laughing. I had noticed that he wasn't laughing. I had questioned to myself if he was having the same thoughts or if he just wasn't paying attention. Obviously it hurt him as well. I then looked over at another couple who have a child with a disability, and I wondered what they were thinking. Did they feel the pain I was feeling? Were they envisioning their child instead of Sparky?

There was no ill will behind the story of Sparky. Feelings were not meant to be hurt. It was just such a strong reminder that our experiences shape us and make us who we are. We respond to life based on what we've gone through and the lessons we've learned. Four years ago, I wouldn't have thought twice about this story. But now I have a son who is one day going to be laughed at and made fun of because he has a disability. "Dumb" jokes just aren't as funny as they used to be.

Tuesday, June 7, 2011

One, Two, Three...

FOUR!!! As of two weeks ago this past Sunday, Wade is four. Unfortunately, I was wrapped up emotionally in Wade's annual ARD (IEP meeting), so I haven't had the energy to post an update. So, here we go!

The first few days of Wade's life were filled with anxiety, to say the least. I honestly didn't know whether he was going to live or not. Every time the phone rang, my heart stopped while I listened to Curtis talk to one of the doctors. We found out when Wade was four days old that he did in fact have significant brain damage, much to one of the doctor's surprise. At that point though, I was just so relieved that he seemed to be out of the woods. The grim diagnosis was actually a relief, because at that point we knew what we were dealing with and we could move forward. It was definitely the most difficult thing I have ever dealt with, but I was just so very thankful that Wade had survived. We'd deal with everything else as it came along.

On that Saturday, May 26, 2007, we were told that Wade would never walk. He would never talk. He would be in a wheelchair the rest of his life. He would never throw a baseball. I suppose the doctors have to tell you worse case scenario, but I just felt numb as I sat there listening to those words. I didn't have anything to say, but in my heart of hearts I knew that Wade would be more than what these doctors were saying. I saw that glimmer in his eyes, and I knew there was more to him than the doctors could see on their tests.

Birth Day!





Looking back, I can say that we've seen the biggest changes in Wade this past year. The first year to two years, we were in survival mode. We had a routine, and we followed it well. We went to scheduled doctors appointments, and I did a lot of research on the computer. I learned a lot about cerebral palsy while cycling through the grieving process. During Wade's third year, I started branching out a little more. I started to get a little more involved in advocacy, and I started pushing the limits a little bit more. I was learning more and more about alternative treatments while trying to find the line between too much therapy and just living a "normal" life.

In spring of 2010, right before Wade's third birthday, I was able to submit my resignation as a special education teacher. It was a bittersweet decision, but it has been such a blessing. I've been able to focus so much more energy on Wade instead of balancing my two lives. Although I was so sad to say goodbye to a job I loved, I was thrilled at the idea of being able to do things with Wade that I hadn't been able to do because of work obligations. I believe it was perfect timing. Emotionally I was ready to conquer the world with Wade. In the past year Wade has gotten an iPad to begin communicating better with us. He has also gotten his first wheelchair--a power chair at that! He started school, and he has flourished in that environment. We traveled to VA for Magnetic Therapy, which we followed up with an intensive session of MEDEK Therapy in NJ. I've thrown myself into advocacy and learning, and we've even made several trips to our state capital in Austin to fight against the budget cuts which affect people with disabilities. The combination of all of these things has made such an impact on Wade. He is absolutely thriving, and he is making progress in leaps and bounds! No, he's not walking or talking in the conventional sense, but with the help of a wheelchair and AAC devices, he's holding his own rather well! And I never give up hope that one day those pieces of equipment will only supplement his own legs and his own voice. Never underestimate what a difference a year can make!