Fair Fun

Yesterday was exceptionally busy. I was worried about how little Hamlet would handle the commotion, but I am happy to report that he rose to the occasion. He seemed to thoroughly enjoy being the midst of all of the action.

We began our day at the farm and finished at the fair. Robby and Scott had a fabulous time riding and spinning all evening. Timmy was content sitting in his stroller and watching the action while munching on french fries. Despite a little rain, it was a perfect evening.

I do have to admit that I wasn't delighted with Robby's choice of prize (an inflatable machine gun) but he was adamant about his decision.I tried to dissuade him, but he insisted that the gun would be fun when playing in the woods. I finally acquiesced, with the promise that it would never be pointed at anybody (especially his brother) and that it would be used only while playing combat in the yard. 

Busy Fun Day

Perhaps it was a release of adrenaline, or the reality moment of my Dad being gone, but yesterday I struggled to remain upbeat and happy. I played with my boys and tried to appear normal, but inside I felt like crying and hiding. Thankfully today I'm feeling better and ready to conquer the world, which is a good thing because we have an extremely busy schedule.

We are going to be headed to the farm first thing this morning to pick up our CSA box and to pick a peck of peaches. Robby will be disappointed but we don't have a lot of time to play on the structures or to fish, but we will have to leave rather quickly because Scott has an appointment at noon.  I think that we will quickly be forgiven for the quick farm excursion because as soon as Scott comes home from the dentist we're packing up and heading to the fair.

I can't help but think of my fair experience last year. I was in so much pain from the re-amputation and struggling with an ill fitting leg. Determined to try to have fun, I pushed Timmy in his stroller with one hand while using a crutch in the other.  I remember Robby and Scott having a blast while I was struggling to just get through the day. 
  
It has certainly been a difficult road, but I am now fully recovered and healthy. This year I won't have a problem walking through the fairgrounds or wrangling Timmy.  I am looking forward to an afternoon and evening of watching the boys spin around on rides, of hearing them laugh and seeing their smiles. Although he is too young to participate, I suspect that Timmy is going to thoroughly enjoy being in the middle of all of the action. I can't wait to see his reaction to the fair sights, smells and sounds. (It isn't the boardwalk, but it is close!)
 

100K

Yesterday morning around 10 AM, our petition met the minimum required to receive a Presidential response.  In just 17 days we received 100,000 signatures, a feat that still fills me with pride for the community.  The petition was only the first step in what is sure to be a long battle, but I plan on thoroughly enjoying this moment because it was a hard earned victory.

When I realized that we had broken the 100,000 mark, I was so excited I almost cried.  Robby and Timmy broke into a happy dance to celebrate.  (Timmy had no idea why he was dancing but was happy to mimic his brother's excitement.)  After celebrating with my boys, I began to make calls to spread the news.

After talking with Scott and my Mom, my fingers began to dial another familiar number. It wasn't until the phone connected that I realized my mistake. I quickly hung up the phone, remembering that I will never hear my Dad's voice on the other end.  My tears of joy quickly morphed to those of grief.
I tried to push the grief to the side so that I could concentrate on the milestone that was achieved. 

Scott came home and we went to Cheesecake Factory to celebrate. Although my mood was slightly tempered by my grief over my Dad, I was able to enjoy the moment.  We did something amazing and I didn't want to lose sight of that accomplishment. In my heart, I know that my Dad wouldn't want me to mar this moment with tears.

 

What Keeps Me Awake

I feel like I have been working non-stop since these medicare proposals were released. When I haven't been actively lobbying against the adoption of these horrific ideas, I have been pondering them and thinking of new ways to help the community understand the ramifications. I wish I could just turn my brain off for awhile and completely relax, but I also know that right now I don't have the luxury of relaxation.

Every time I think about letting up, my mind goes back to the proposal, and I quickly feel like fighting again.  If enacted, amputees across this country will be disabled by their substandard prosthetics instead of missing a limb. According to these proposals, I would not be utilizing the carbon fiber, highly reactive energy returning foot/ankle that I use every day.   Amputees will be living a different existence if these proposals were enacted, and in truth I do not want to be part of that reality!

Medicare wants an amputee to prove "motivation" before receiving a prosthetic. It is cruel burden to expect somebody who has just had their world turned upside down due to trauma or disease and who is tethered down with IV pain medication, to then prove "motivation" to strangers with a clipboard.  Many times motivation follows acceptance, but this Medicare proposal does not allow time for the natural grieving cycle.

Individuals with cognitive impairments can be disqualified from a prostheses. I was floored when I read this proposal. Dedicating my life to special education, I find the devaluing of our special needs population particularly offensive. In addition to being discriminatory, the proposal lacks any qualifiers. What is the cut-off where one is deemed incapable (without given the opportunity to prove their worth)? I suppose the core question is this: Do you really want your insurance company to start doling out treatment protocols based upon IQ?

Those who have received crutches, a cane, a wheelchair or a knee scooter at any time can be denied a prosthetic. This proposed rule would disqualify just about every lower extremity amputee! I become furious when I think that my wheelchair, which is currently covered with boxes of Christmas decorations in the garage, would be the reason for my denial.

I am also insulted by the insinuation that relying upon a cane, crutches or wheelchair somehow makes an individual unworthy to receive a prosthetic. Not everybody can wear a leg full time, and relying upon a mobility aid is appropriate and necessary. Canes, crutches and wheelchairs are tools to help with mobility and independence. Making a stand that an individual can have one or the other will adversely impact the mobility of thousands in this country.

Huge advancements in prosthetic technology are essentially wiped out by these proposals. The elevated vacuum system, a method of suspension that is the only means that many can wear a limb, will no longer be an option. Medicare is going back in time and trying to dismiss the strides that have been made in prosthetic technology.

I have fully admitted to having significant sleep issues, and the recent Medicare proposal has only made it worse. Every time I close my eyes I begin to ponder my life under these regulations. This is not a reality I want to experience!

Summer of Strep

When Robby walked into the living room yesterday morning at 5:30, I knew that something was wrong. Not only has he developed a propensity for sleeping longer (a trait I wish his brother would mimic) but he was also pale and sweaty. As soon as I saw him I knew that he had caught the strep throat that sent his younger brother to urgent care a few days earlier.

My Summer of Awesome could be renamed the Summer of Strep, because the boys have shared it monthly since school let out.  As soon as one finishes the antibiotics his brother is sick, and this cycle has repeated for months.  This is the third round of antibiotics for both, and since they are taking the "yummy pink medicine" at the same time, I'm hopeful that we will kick it out of our house for good.

In the meantime, I pulled out the sofa bed for Robby and set him up in the living room.  Timmy was intrigued by the bed and spent countless hours exploring underneath. The fact that he didn't realize that the newly discovered "cave" was nothing more than the same living room floor was adorable, and I appreciated the respite the novelty afforded me. 

Last night Robby's fever was so high, and his head was so painful, that Scott had to carry him from the living room to our bed. He started to shake from the fever, which solidified the decision to let him sleep with Scott for the night. He was restless until he vomited, afterwards he fell soundly to sleep. 

I'm hoping that Robby turns the corner and starts to feel better. I hate seeing him so sick! I want my Summer of Awesome back!

Mr. Bill Break

I have been thinking about little else than the recent medicare proposals since learning about them several weeks ago. Even during family adventures I find my mind swirling with strategies, contemplating what if scenarios and trying to figure out more ways to bring awareness to the issue. While I am happy to lend my efforts to help spearhead this movement, I find myself increasingly drained because of it. Yesterday afternoon I felt like I was drowning in stress as I tried to manage the non-stop phone calls, interviews and social media posts while trying to manage Robby and Timmy. Standing at my kitchen counter with tears of frustration streaming down my cheeks, I knew that I needed to step away.

I put on Timmy's shoes, told Robby to grab his metal detector and went outside to play with my boys. For the first time in three weeks, I left my phones on the kitchen counter. Aware that I was out of touch for the first time in weeks, I felt liberated as I pushed my boys on their swing set. Every time medicare or prosthetics kept into my mind I made a cognizant effort to push it out, choosing instead to focus on playing and being with my kids. 

Seeing his friend walking down the road, Robby jumped from the swing (something that will always make my heart leap to witness) and went running towards her. The two friends spent the rest of the afternoon panning for gold in the stream and scouring the yard with the metal detector searching for treasures. I was alone with Timmy, who was happy swinging and exploring the yard, proudly showing me every hickory nut and flower that he discovered.

Eventually Timmy made his way over to Mr. Bill's house and quickly began to explore his yard. Mr. Bill quickly joined the youngest explorer, oohing and aahing over each discovery. Mr. Bill patiently walked and spoke to Timmy as they walked around his yard. As I sat on the swing and watched the interaction I couldn't help but feel content and happy. My boys are so lucky to have Mr. Bill in their lives!

I was only away from my phone for two hours, but the respite was exactly what I needed to feel better. I am going to make a point to unplug from the medicare situation on a regular basis. I am a better advocate, and mom, when I have a chance to walk away and regroup. 

Timmy the Terrible

Timmy has resumed his 4 AM wake up schedule despite every effort to encourage him to sleep a tad longer. I don't know why he is such an early riser, neither Scott nor I are particularly fond of waking up early. I keep telling myself that this is a stage, and that he will soon be a good sleeper like his brother. In the meantime, I fill the wee hours of the morning envisioning a plethora of creative ways that I am going to rouse him out of bed when he is a teenager. Right now, just standing outside his room screaming nonstop is rising to the top of the list.

I continue to be astounded by the differences between Robby and Timmy.  Robby was so analytical as a toddler, always studying and examining. Timmy is more hands on, assuming a leap and then look approach to most things. He is constantly climbing and pushing his physical limits whereas Robby has always been cautious. I never really worried about Robby hopping out of his tree house, but I'm pretty sure that someday Timmy is going to tie a towel around his neck and try to fly off the ladder like Superman. 

Robby was kept away from the stairs by a single gate.  Timmy requires a three gate barricade. It now takes us about five minutes to dismantle everything when we want to go downstairs or leave the house.

Thankfully, Timmy has not yet learned to try to disguise his amusement when he is being mischievous. His giggle always gives him away. The louder and more robust his laugh, the more we worry about what he has discovered.  When he is belly laughing, I know that he is either splashing in the cat fountain or an open toilet. 

At only 15 months, I am already seeing glimmers of the Terrible Twos. My little guy has quite a temper, and doesn't hesitate to express his displeasure when he doesn't get his way. He stands still, stomps his feet and screams at the top of his lungs. While I know that he is expressing frustration and I shouldn't laugh, sometimes that is the only option. He is so animated angrily marching in place.

At this age I could easily distract Robby from unfavorable activities. Timmy is determined and refuses to fall for my ploys to distract him. It seems that Robby Rotten has been replaced by Timmy the Terrible, who is louder and more creative than his older counterpart. I think this little guy is going to give me a run for my money!