Special Exposure Wednesday

How do I love thee? Let me count the ways...

You have kept the lights burning bright since the hurricane ravaged my town. You have allowed me to run fans to keep the heat at bay. Because of you, I can cook with my crockpot, my wok, and my electric griddle. You help me iron my clothes and dry my hair. You even wash my dishes.

Sure, you can be loud and obnoxious. My neighbors say the sound bothers them, but I think what really bothers them is that they don't have one of your family members.

You have kept me somewhat sane for 5 days now and who knows how many more are to come...

Thank you, my generator, from the bottom of my heart!

I Didn't Forget

I haven't forgotten to post today, but I am just delaying my post.

Ashley's appointment with the neurosurgeon is today. We will get the results of her recent brain MRI. So I've decided to delay my post until I have (hopefully) good news to share...

Stop back by this afternoon please...

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Here's the post-doctor update, and it's a good one!!

There has been no change in Ashley's three brain tumors. The neurosurgeon has watched her closely over the last 5 years and done too many MRI studies to count, and each and everyone was exactly the same.

The verdict? We can now wait 3-4 years for another study, unless of course I notice any changes like weakness, headaches, loss of function, etc.

To say that I am thrilled is an understatement. The MRIs were so very difficult for Ashley and the use of anesthesia was always scary for me.

The doctor did scan her cervical spine this past time, and he also noticed nothing of concern there. He did say she has a bit of arthritis, but if she's not complaining, then neither am I!!

It's a good day. Now if we could just get our power back on post hurricane Irene, it would be a great day!

Whew!

What a weekend! Hurricane Irene came for a visit, and turned our town upside down. As of last report, still almost a million people in Virginia alone are without power. We are one of those, but fortunately my generator is chugging away. It provides everything but laundry facilities and air conditioning.

The power company said it would be 1 to 2 weeks before all power is restored....

Here are some pictures for your viewing pleasure, and so you can breath a sigh of relief if you were not in Irene's path!

My neighbor to the right is a school teacher. She may be a great teacher, but she is not the best hurricane planner. I mean, who leaves plastic lawn chairs and empty trash cans sitting in the driveway when winds are projected to be 75 miles an hour.





She was also one of the folks who had tree damage. And, her tree decided to take out our fence!



Our neighbor on the other side had a tree that split and fell across power lines. I guess it's not dangerous since THERE IS NO POWER!



In our yard we just had a lot of branches fall - nothing major.



And I am very proud of my little peach tree for standing its ground! There were times when it was bent almost horizontal to the ground, but it didn't give up!



As it turned out, my immediate neighbors and I had it pretty easy. Check out this tree that fell across the road leading out of our neighborhood!



And because I felt a tiny bit guilty being the only house on the street with a generator, I decided to share our good fortune with all our neighbors the next morning!



I'm very glad it is over, and hope that no more hurricanes come our way this season!!

Bring Them Together

A week ago, I wrote about a father who beheaded his son with disabilities. The father said the constant and ongoing care made him look at his son as an object rather than a person. Today in the news is the story of a mother who dropped her baby from a parking garage. The baby had an orthopedic condition that was correctible, but the mother was overwhelmed by the way the child looked. And, my blog is full of other similar stories.

In each of the cases, the offending parent is usually prosecuted and convicted. But I really wonder – does it have to get to that point? What if the parents had support early on, support that would help them learn coping techniques, support from someone who has ‘been there, done that.’

Obviously something is not working in our society when it comes to caring for a child with disabilities.

Many, many parents, probably even most parents, when confronted with raising a child with disabilities, will buckle down, educate themselves, and become even better parents than initially thought possible. The provide love and encouragement, care and consistency. They provide a future for their child.

And then there are the parents who do not.

I wonder if bringing the two together could make a difference. Would having a parent in a similar situation, a parent who has developed coping techniques, who has learned to bury the dark thoughts, who has become an advocate for their child, a parent who could serve as a role model for the new and/or overwhelmed parent begin to save lives?

I was lucky. I found a group of supportive parents who could be there for me. Parents who could help me navigate the systems which so often lack the understanding and compassion we and our children need. But in the beginning I did feel an intense isolation. I believed no one understood what my life was like, and I believed that everyone was judging me. It took action on my part to find my circle of parents, and I wonder if the overwhelmed parents are even capable of taking that action.

I don’t know who could connect the two. I don’t know who could set up a mentorship program that provided support when it was instantly and desperately needed. But I think it is an idea that should be tried.

I’m tired of reading about children who die – children who could have long happy lives.

Is That Locust I Hear?

So, did you get to experience the great shake, rattle and roll this week? Just 35 miles from my home, a rare and unexpected earthquake struck. It was a 5.9 on the Richter Scale, and I realize that to folks on the West Coast that is no big deal. But to us here on the East Coast, it was like one of the biggest deals ever.

I was at work when the rumbling started. Never having experienced an earthquake, my co-workers and I were a little stunned at first, wondering just what was going on. And silly me, my first response was to reach up and keep my computer monitor from dancing off the edge of my desk. Then about 200 of the 400 workers in my building ran outside.

Who knew running outside was not the thing to do???

Who knew that standing on the top of an underground parking deck was not the thing to do??

Who knew that cell phone service would more than likely be disrupted?

I felt like I did on 9/11, all I wanted was to hear my children’s voices and know they were ok. But I couldn’t because no calls were going through. It is a horrible, horrible feeling to be in the middle of something major and not be able to know how my children are. I just wanted to go back into my office building so I could try calling on the land line, but the Capitol Police Officer stationed at the door refused to let us back in.

Finally, after about 45 minutes, we were told we could re-enter the building. I went straight to the phone, called home, and got the news that everyone, although a little frightened, was ok. Ashley even thought it was fun and spent the rest of the evening bouncing on her chair to simulate the shaking!

So, we’ve had the wildfire burning in the Great Dismal Swamp causing all of us respiratory problems. We’ve dealt with an earthquake, and we are battening the hatches for Hurricane Irene which is headed our way. I really expect to see locust next…..

Special Exposure Wednesday

My sweet Ashley trying to wake up after her MRI under anesthesia....

This and That

I so despise sitting in a hospital surgical waiting room. Worry hangs in the air like smoke from a camp fire on a cold, windless Winter night. No one smiles, but there is a lot of finger drumming, foot tapping, leg shaking, and wary eye darting. Everyone waits for the call that will make their heart breath a deep sigh of relief.

Ashley wasn't having surgery last Friday, but she was under anesthesia for an MRI of her three brain tumors. Anesthesia and kids with significant special needs, including breathing issues, do not a good mix make.

While I watched the hospital pastor approach one of the most anxious families, I knew from experience that the news wasn't going to be good. I've been there, and I just wanted to scream at the priest and tell him to go away, all the while wanting him to just pray as hard as he ever had in his life.

Today, my call came and it was good news. Ashley was in recovery and I could come hold her while she woke. The cloud of worry over my head dissolved as if it had been rained upon...

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Ronnie absolutely refuses to practice walking with his braces and crutches. About a year ago, he said he wanted to learn to walk. Although he didn't like to slow down his life to go to physical therapy, he was cooperative when he got there. He worked very hard, and was able to take a few difficult steps.

But now he has decided he does not want to walk.

I think it is because the learning is difficult, and even the result, should he learn to walk, would be more difficult than just wheeling himself around in a chair.

So, should I force him to keep going to therapy, knowing all the while he won't practice? Or should we stop? It could be viewed that he has accepted himself as a wheelchair user and he is comfortable with that versus someone who has to work very hard just to be a walker like most of the world.

I'm going to speak to the therapist, but I am leaning towards supporting his acceptance as a wheelchair user.

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Ashley always has been a picky eater. Actually, picky is too mild a word. She was fed through a G-tube for many years, but then became a proud graduate of the Children's Hospital Feeding Program. What that meant is that she would tolerate soft foods in her mouth. Her diet was made up of mac and cheese, mashed potatoes, pudding, applesauce, chicken nuggets, and Le Suer baby peas (HAD to be Le Suer).

Through the years, I have tried introducing new foods, and ever so slowly she has added to her menu plan. She now will eat raw spinach, scrambled eggs, chicken salad, tuna salad, and cupcakes. But she still has a long way to go.

For some unknown reason, there is one place she will always try new foods.

The kids and I often go to a restaurant named Positive Vibe Cafe. The Cafe was born from a marvelous idea (read it here), and the food is spectacular. Earlier this summer, she tried key lime pie there. And this past Saturday, Chip convinced her to try fried calamari. After placing a ring of squid on each finger, she then proceeded to gobble them down (the squid, not her fingers). The waitress was so excited that she asked the chef to make a few more for her!!

I wonder if the owner would rent out a room for us to live in??

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I found the storm trooper helmet hidden behind the toilet. Ronnie had been in the bathtub, so I wasn't surprised. But I couldn't find the storm trooper anywhere. I asked Ronnie after he had finished his bath and was in his room, and he just shrugged. But it was a slightly guilty shrug, and I soon found out why.

The storm trooper has decided to go for a ride down our toilet.

For the record, storm trooper do much better in space than in the sewer system...