The Lobbyist

My mind continued to spin as I replayed the events from Tuesday afternoon. I remain frustrated that our legislation was moved into yet another committee. However, I know that I did my best and that, given the time constraints, there was nothing else I could have done to help propel the cause. I am beginning to parlay that frustration into a desire for action.

While we were waiting for our Bill to be called, Robby and I had the opportunity to listen to and watch the legislators in action all afternoon. Considering that the legislators also delayed a vote on a Bill to mandate hearing age coverage for children, I should not be surprised that they showed so little regard for the limb loss/ limb difference community. Armed with similar studies ensuring that providing the necessary devices actually keeps costs down, I felt a strong kinship with the hearing aid contingency.

I listened to the healthcare lobbyist, a well coiffed gentleman wearing a suit that certainly has a higher value than my car, speak out against every single Bill that related to the health of the residents of Virginia. At one point I found myself staring at the lobbyist when we were seated in the gallery. This individual has flamboyantly sold out his morality for money. Speaking out against every Bill was obviously a standing joke with the legislators, who laughed and knowingly nodded each time he approached the podium. 

Using this man as a springboard, Robby and I were able to have a lengthy conversation about valuing morality and ethics over personal greed. It is obvious that this man's moral compass does not mirror ours. I told Robby that, in a world where he can be anything, I hope he does not become that man.  

Testimony

It amazes me how plans can change. Before the sun rose yesterday I had already planned out my schedule. The weather was going to be nice, allowing Timmy and I to go to the park to play. I knew that I was going to work several hours in the morning so that I could unplug for a few hours to just play and enjoy the time with the kids.  

As I was approaching hour number three on my computer, the phone rang. On the other end was a fierce advocate friend of mine, and I immediately knew that her early morning call had to be important. I wasn't wrong with my assumption.  

A Bill to clarify that microprocessor devices were classified as Essential Health Benefits was being debated in the Virginia House that afternoon. As it currently stands, prosthetic devices are already considered Essential Health Benefits under the ACA but because the higher tech devices are not specified, many insurers are using the omission as a loophole to deny coverage. 

SB 382 was written to close the loophole leading to coverage denials. Microprocessor and myoelectric technology is not new has become a standard of care in the past 15 years. When medically necessary, as determined by a physician and through the testing and notes of the treating prosthetist, the technology can be life changing. Fewer falls, increased stability and a more natural gait are all benefits when microprocessor technology is utilized. 

As I was talking with my friend through her frantic phone call, I learned that the patient advocacy coalition had dropped the ball. Not only did this organization fail to provide any patient speakers, but they were not sending any representatives to speak out in support of this legislation. I was disgusted but certainly not surprised. I learned a long time ago that not all coalitions are equally passionate or authentically energized by their mission. Thankfully the limb loss/ limb difference community has supporters and advocates in a variety of organizations!

I quickly looked at the clock and realized that, if I left within the next hour, I could make it to Richmond in time to testify. I called Scott at work (something I try to avoid doing whenever possible) and explained the situation. He immediately went to see the principal to explain the situation. Thankfully his principal saw the importance of both the issue and my testimony. Scott was granted unplanned leave for the day and drove home to watch Timmy for the day.

As soon as Scott came home Robby and I hopped into the car and began the 2+ hour trip to Richmond. During the drive Robby read me the text from the Bill as well as the notes that were provided. We talked through my testimony and the issues in order to prepare. (I love that my 13 year old son was not only interested in the issue and the legislative process but was eager to spend the day supporting my efforts.)

I will write more about the actual testimony tomorrow. Despite all of the efforts, the Bill was not passed. Instead it was sent to a committee for further review. 

I am frustrated but remain undeterred.

Playmate

I know that the kids (and Scott) are bummed about the lack of snow this summer, but this unseasonably warm weather has been wonderful. I was able to spend the day outside with Timmy, playing and thoroughly enjoying the warm(er) air and the bright sunshine. 

Because Timmy can't be around infections and possible viruses, we have had to restrict his social interactions. (Outdoors he is safer because the air is constantly circulated.) I know that he has missed playing with buddies. As much as I try, I am a poor substitute for kids his own age. 

While we were busy playing hide-and-seek in the yard, we were approached by a little girl with her father. The family moved into the house across the street several months ago but because of schedules and weather, we haven't seen them out playing often. My little Hamlet was absolutely delighted when he was invited to play with his new neighbor buddy. He said good-bye over his shoulder as he went skipping towards his new friend's yard.

Timmy and Maya played for hours, affording me the opportunity to sit on my porch swing to tackle some work. I loved hearing the giggles wafting through the neighborhood! I really hope that Maya is home more often when the weather warms, because I know that Timmy will always be an eager little playmate.

Valley Forge

My Mom gave Robby and me the best Valentine's Day gift ever. Friday she babysat Timmy so Robby and I could visit Valley Forge. Robby has been learning about the American Revolution and has been begging to visit the famous site. The stars (and weather) finally aligned, allowing us to spend the afternoon exploring the encampment.

Robby was in his element! My little history buff took full advantage of our visit. Our listening tour, courtesy of the CD from the gift shop, was slated to last about an hour. It took us four hours because we stopped at every opportunity. 

The weather was gorgeous but cold. The bright blue sky with billowy white clouds provided the perfect backdrop for all of our photos. It was easy to oblige his requests to hike to a different outpost when the sun was shining so brightly. After being holed up inside, it was invigorating to be in the fresh air.  

I only wish that it had been warmer. Robby seemed oblivious to both the wind and the cold air, but it cut through me like a knife. Every time I complained Robby took the opportunity to remind me that my discomfort was nothing compared to the soldiers who lived on those lands during the American Revolution. (I knew that he was right, but it didn't mean that I wasn't cold!)

While Robby and I were touring the encampment, my Mom and Timmy were busy playing with trains and watching Yoshi cartoons. We were gone longer than I anticipated (although I should have predicted that Robby would want to deep dive into the opportunity), but everybody seemed happy and content when we finally arrived back at her house. Timmy can be a handful, especially when he doesn't feel great, but apparently he was both charming and well-behaved for his Nana.  

Maybe I need to find out her secrets to keeping him in line!

Valentine's Day

Happy Valentine's Day.  I hate Valentine's Day, but I felt I would be ignoring the obvious had I not mentioned the holiday.  Scott set the bar low for the holiday when we began dating 20 years ago, so I have no expectations of flowers, treats or balloons. With after school faculty meetings, the introduction of new paperwork that needs to be completed by Monday and parent-teacher conferences lasting past 7 PM last night, I will be lucky if I get a grumpy "I hate Valentine's Day" when he walks through the door tonight.

Timmy, on the other hand, is all in on Valentine's Day. He spent the week drawing and decorating hearts and Valentine's Day themed coloring pages. He woke up with a huge smile while eagerly hugging me to say "Happy Valentine's Day."  Every time he works on one of his heart creations he happily chats about the candy and cookies in his future.

While I would like to think that he has an affinity for hearts and love, I know that he is in it for the heart shaped cookies he has been eye-balling. He loves holidays, but this one he is definitely hijacking for the sweets. He is definitely my son!

Happy Valentine's Day.

Ferris Wheel

Although it continued to twinge throughout the day, my back pain waned as the ibuprofen began to take effect. It's a good thing that I could walk and move without constant pain because Timmy was full of energy and mischief. I think he is becoming weary being holed up inside due to the weather. With the rain over the past few days, he has been unable to run and play outside. Timmy with excess energy always equals mischief and mayhem. 

In an attempt to break up the monotony, we started to work on a new building kit. Building wooden toys through crafting kits has become one of Timmy's favorite activities. He has a box overflowing with wooden planes, trucks, trains and boxes that he has assembled using the tools from his very own tool bag.  

I knew that he would love putting together the ferris wheel, but as soon as I opened the box I regretted suggesting the activity. I was overwhelmed by the sheer number of tiny wooden pieces and the verbose directions. Undeterred by both the number of pieces and the length of the direction sheet, Timmy trudged forward. 

After I showed Timmy how to assemble one piece, he set out to assemble the remaining eleven. We continued with this pattern for several hours, slowly working our way through the wheel. I was impressed by his attentiveness and determination to complete the wheel. 

When we began I was certain that it was going to take at least a week to assemble the toy. By the time I needed to start making dinner, we had a fully assembled, motorized ferris wheel in the middle of our kitchen table.  Timmy was absolutely delighted with his creation.  

Who knows, maybe I have a future engineer or architect in my midst!

Ice and Ibuprofen

My woke up this morning feeling every year, month, day, hour and minute of my age. My back, specifically my lower back, is painful. Back pain is miserable, especially because it is omnipresent regardless of position. My goal is to find the least objectionable position and to stay there until the ibuprofen kicks in and the twinging subsides. Oh the joys of middle age.

Unlike phantom pain, I know the cause of my back pain. Yesterday my limp was more prominent, becoming more obvious as the day progressed. By the time I went to bed I was hobbling like Tiny Tim, hunched over and shuffling down the hall. Walking with a strong gait deviation undoubtedly caused undo stress on my back, which I am paying for this morning.

I was frustrated because I knew that my gait was off, but I couldn't walk "normally" without discomfort through my limb. I realigned and re-donned my prosthesis numerous times to little avail. My body fluctuates throughout the day, but the socket remains static. Most of the time my leg fits perfectly, but every once in awhile my limb retains water or has shrunk more than normal. On those days, I am reminded about the archaic designs of prosthetic sockets.

Innovators have been tinkering and trying to design a socket that dynamically adjusts to the wearer. I've worn several variations, but none of them have worked for me. So far all of the designs rely upon a series of cords and boa closures to provide adjustments. Every single time the cord has snapped within weeks, leaving me in a precarious and dangerous situation. 

Certainly there has to be a better way! Until then, I'll continue trying to squeeze and contort my always changing limb into a static bucket. I'll ice my back and hobble through my day, because that is what I need to do to remain ambulatory and active. Hopefully the ibuprofen and ice work soon because I don't have time for this today.