About Me

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I am a below knee amputee. More importantly, I am also Mommy to two boys, a very active 10 year old (Robby) and an mischievous toddler (Timmy). I have learned that being a parent with a disability can create some unusual and sometimes humorous situations. This blogger is available for hire! Let's talk and learn how a blog can expand your business.

Friday, August 21, 2015

End of Summer

Today is Scott's first day back to work after summer vacation. Much like him, I am sad to see summer end. While the return to work also means the return to a normal schedule, which I appreciate, it also means that the carefree days of lounging by the pool and and summer fun are over. Due to a change in the school calendar this vacation break was shorter than others, but we still managed to pack in a lot of fun!

Robby has one more week of summer vacation before he returns to school. It is hard to believe that soon the house will just be occupied by just Timmy and me during the day. I'd say I was looking forward to a quiet house, but I know that my toddler Timmy has a different motivation.  He is into absolutely everything and soon my life is going to become increasingly complicated as I try to juggle working and caring for him without back-up. 

This weekend will be spent getting the house ready for the return to school. While I never claimed to be to keep an immaculate home, my housekeeping has been lax since the medicare proposal was released. When I haven't been doing something with my family I have been working non-stop on raising awareness and fighting the proposal. Laundry, dust and clutter have accumulated as collateral damage of my grassroots efforts.  (Hopefully Scott fill find something clean to wear today, but judging by the mountain of dirty clothes I'm not completely confident that he won't end up picking the least dirty shirt from the pile.)

It is going to be a difficult few weeks of adjustment as we all acclimate to the school schedule. I know that Hamlet is going to miss his Daddy and brother, which also means that I am going to become soul playmate. I'm not sure how I am going to juggle that job with all of my others, but I guess I'll figure it out! 

Thursday, August 20, 2015

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. 








Wednesday, August 19, 2015

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!)
 


Tuesday, August 18, 2015

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.


 

Monday, August 17, 2015

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!