ReelAbilities DC

Yesterday evening I had the opportunity to speak as part of the ReelAbilities DC film festival. Although both leaving my house after dark and speaking to crowds are outside of my norm, I was excited about the opportunity. Who would have thought that I would be speaking at a film festival?

The film shown was a documentary touting the life changing wonders of prosthetic technology. It was well-done, yet I saw it as little more than another attempt to glamorize prosthetics for the able bodied community. (In the disabled community, such videos are referred to as gimp porn.)

Watching the film, I struggled to figure out what I was going to say. Other than to talk about my story and reactions to the film, I was given little direction. As my thoughts swirled, I doubted that they really wanted to know my honest reaction.

When I heard the film narrator declare that amputees were becoming "super human" and would soon be the "envy of the able bodied world because of their technology," I knew I had to address the dirty little secrets behind these "miraculous" advancements. The majority of amputees struggle to access the most basic devices. The bionic devices demonstrated in the movie are completely unattainable.

I began my speech by introducing myself, but quickly parlayed into prosthetic parity. I discussed insurance issues and the real life struggles of the amputee community. The audience was flabbergasted when I revealed the price tags, and the 3 year longevity expectations, of the bionic devices featured.

I spoke about the one limb per lifetime caps in New York state, as well as the complete exclusions in Nevada and Alaska. I relayed stories of local families struggling to afford the copay for a leg for their 10 year old son, who is currently relegated to crawling because the family earns too much to get assistance yet doesn't make nearly enough to afford the 10,000 copay required for the device. When I revealed that I am disabled not by the loss of my limb but through the red tape of my insurance carrier, the auditorium erupted into applause.

I may not have delivered the speech the organizers were anticipating, but the audience was captivated. I could tell that the message was heard when a flurry of hands flew in the air when I offered to answer questions. My 10 minute speech turned into a 45 minute interactive presentation.

Driving home, I couldn't help but ponder the possibilities if the film makers had opted to make a realistic portrayal of limb loss issues. I realize that technology is glamorous, and is touted because it makes everybody feel better. But if the goal is to bring enlightenment, I think that the mark was missed. 

One Limb Per Life

Despite our best intentions, Dave (my podcast partner) and I have had a difficult time staying on track with Amp'd. I take full responsibility for the delay in recording and producing this episode. With my Dad being sick and ultimately passing away, I just didn't have the time or the energy to record.

Our absence is not reflective of a lack of passion. We still believe in our podcast and plan to use it as our springboard to discuss issues or to launch new ideas and concepts. Hopefully life will calm down and we can resume a recording schedule.

Last week we both made recording a new episode a priority, primarily because we feel passionately about the topic. The policy offered through the New York insurance exchange has a one limb PER LIFETIME cap. We discussed the history of this policy, and Dave aptly explains how this seemingly archaic insurance option made it to the Affordable Care Act exchange in the state. 

Through recording this podcast I also learned that the exchanges in Alaska and Nevada offer no prosthetic coverage to subscribers. I was flabbergasted that the community is not in an uproar over this issue.  As Dave explains in this episode, living in a state that currently offers prosthetic coverage through their exchange should not be construed as safety.  Policies change yearly and prosthetic coverage can be removed during any update.

Learning about the issues is the first step towards change.  Please take some time to listen to this recording, and to sign the petitions. Become involved. It is clear we have to advocate for ourselves.

Baltimore

Last night, Scott and I were glued to the television as we watched the nonstop coverage of the Baltimore riots. Despite the constant stream of images and reports, I still can't fathom the destruction that unfolded. We are 90 minutes from Baltimore, yet it feels deeply personal. I used to live in that city and still have friends who reside there.  Between doctor visits and the aquarium, we visit several times a year and have always felt comfortable. The scenes we saw on television last night were heartbreaking.

I realize I'm jumping on the "what's wrong with people" bandwagon, but I don't understand looting and random destruction. If the purpose of the protesters is to gain media attention, I suppose that they are successful. However, if they are hoping to create a dialog about police brutality, their talking points are muted by the violence.  Perhaps I am showing my age, but protesting police brutality by performing random acts of violence feels wholly illogical.  Logic, of course, is of no consequence when a group mentality is at play.  

I felt scared for everybody who lives and works in Baltimore. I can't imagine the terror felt by the residents and business owners last night as they faced the reality that they could be victimized at any moment. This is becoming a crazy world, and it makes me fearful for my boys.

While I'm confident that we are protected from this protest by geography, I worry about the future. I hope that my boys will have enough common sense and self-worth to avoid putting themselves in the situations I saw playing out last night. It is hard to go against a crowd, and I can only hope that they are being raised so that they have the ability to walk away instead of participating.  Moments like this I want to keep them little forever.

Growing Money

Although the weather on Saturday was less than ideal, I think that Timmy thoroughly enjoyed his party. He was grinning from ear to ear watching his cousins play around him, occupied by the commotion that always ensues when so many little kids get together at one time. I know that soon he will be chomping at the bit to keep up with them, but on Saturday he was content just to watch. 

Sunday the weather was far nicer, allowing us to spend most of the day outside.  Robby and I rode bikes (with me towing Timmy in his bike buggy) while Scott tried to make heads or tails out of the directions for the swing set.  (For such a large swing set, the boxes are ominously small.)  Robby rode over to Mr. Bill's house to request assistance, but failed to return home. 

Unfortunately for the swing set construction project, but happily for Robby, Mr. Bill was occupied and couldn't help. He was already working on a project that he and Robby have been planning since Halloween. During one of their after school chats, the friends decided to become pumpkin farmers. They carefully saved all of the seeds from their Halloween pumpkins in anticipation of planting. They are hoping to grow enough pumpkins to be able to sell them at the end of our development.  "It's like money growing out of the ground" seems to be their pumpkin farming mantra.

Together, the pair dug, hoed and planted probably 100 pumpkin seeds. I don't know if they will grow, but if the crop fails it will not be due to a lack of effort. Who knows, maybe we will be rolling in pumpkins this fall.

Later this week Mr. Bill has promised to come over and help us make sense out of the swing set. It is just a simple A-frame, but the number of pieces that need to be fit together is intimidating. Since this is something that our boys will use on a regular basis, we are happy to accept help from our resident expert.  Besides, it is going to be awhile before the pumpkin patch needs work and we like to keep Mr. Bill busy.

Happy Birthday Hamlet!

Dear Timmy,

Happy Birthday to my super big one year old! My goodness how this year has flown by. It seems like only yesterday I was holding you for the first time, so tiny and fragile. You had to sleep on my chest in order to stay warm.  Now you are crawling around like a champion, my rough and tumble little Hamlet.

You have definitely kept me on my toes. It seems that since the moment you were born, you were ready to tackle life on your terms. From a colicky little waif who needed to be fed every 90 minutes to a determined little explorer, I have enjoyed watching you grow and learn.  You are a fighter, and that grit is what enabled you to grow into the strong little boy I hold this morning.

Your mischievous ways are going to keep me young. We love your curiosity and determination. However, I do wish you would stop munching on the kitty kibble at each opportunity. I make such wholesome food, yet you seem to prefer the cat's meals over mine. 

Little Hamlet, you are loved by so many. Even your big brother, who sealed himself in a box when he learned you were going to be born and swore that he would never play with you, adores you. He even admitted yesterday that he is glad that you are his little brother and that having you in the family is fun.

You have such tiny fingers, yet you managed to have so many people wrapped around them. Your smile lights up a room and is omnipresent. Before he passed away, your Candy Papaw suggested we do a Happy Face themed birthday because you are always smiling. The bright yellow, smiley balloons you see this morning are in his memory.  It saddens me that he won't be able to see you grow up, but know that he loved you very much. 

Tomorrow we will have your birthday party. I know that you will have fun with your cousins and, although you won't comprehend what is going on, you will be smiling and happy. After all, you are always smiling and happy!

We love you little Timmy, our precious Hamlet.  Happy Birthday big boy. I'm so lucky that I am your Momom.

Love,
Momom

**Side note.  Scott surprised me yesterday afternoon with my own helium tank because he knew I wanted to fill Timmy's room with balloons to surprise him when he woke up on his birthday.  We filled 2 dozen mylar balloons (including bright yellow happy face ones) and sneaked them into his bedroom after he fell asleep.

Epic fail.  The little guy woke up in the middle of the night, saw a slew of unidentified floating objects all around him and became terrified.  He screamed for 30 minutes while I rocked him and Scott frantically tried to capture and remove each balloon.

Oh well.  We tried.

An Apple A Day Does NOT Keep the Doctor Away

All signs point towards little Hamlet being allergic to apples. At first he would just develop bright red cheeks and chin after eating applesauce, essentially making him look like a pint sized clown. While adorable, I suspected that it probably wasn't a healthy reaction and avoided the fruit. 

Unfortunately he was inadvertently fed applesauce over the weekend when I was at the ER getting my wrist checked. Monday he showed some signs of a rash but I didn't think much of it.  He crawls everywhere and often exhibits bumps etc. from scaling every obstacle in his path. Tuesday morning he woke up covered in hives. From his forehead to his ankles, my little Timmy was covered in tiny red bumps. Needless to say, he was miserable. 

I wasn't sure the source of his reaction until his cheeks turned bright pink, tipping me off that he might have consumed apples. After his eating applesauce was confirmed, I called his pediatrician. We have an appointment with a pediatric allergist next Thursday, and in the meantime he is on an extremely restricted diet. On the advice of his doctor we are only offering  a handful of foods we know to be safe until we have more information.

I'm really worried that his apple allergy is only the tip of the iceberg, and that more foods might be involved. I'm hoping that I'm wrong and that I am just worrying for nothing. Ultimately we will adjust and handle whatever restrictions he needs, but I am hoping that his limitations will be few. In the meantime, yesterday I purged the freezer of all of our applesauce and whipped up 4 cakes. Scott's students will benefit from Timmy's aversion.

No Cookies for Her!

I learned a long time ago that friendships are dynamic, constantly changing and evolving. I have friends whom I rarely see and don't talk to as often as I would like, but when we do connect, it is as if time stood still. On the other end of the spectrum, I have relationships that are high maintenance and unbalanced but are maintained probably more out of a sense of courtesy and obligation than an honest desire.  Sometimes I just find it easier to play nice, smile and not make waves. I am well aware that my aversion to conflict plays a huge part in these relationships.

I find that I often go out of my way to avoid rocking the boat, especially in respect to relationships. Don't get me wrong, I will walk away from toxic relationships. It isn't easy for me to stand up to defend needs and emotions, but I will do it when push comes to shove. But I admittedly tend to hold onto some people longer simply because it is easier. 

Maintaining neighbor relationships can be tricky.  I don't feel it necessary to become friends with my neighbors. Just because we live on the same street does not mean that we share the same values and interests. (Mr. Bill is an exception, and I truly value our friendship. It has evolved slowly over time, and I consider myself lucky to count him among my friends.) For the most part, I strive to maintain a friendly relationship but I don't expect anything more substantial. 

I've always had a good relationship with my neighbors. With the exception of the deranged old woman who constantly called the police (who is now living in a nursing home), I have had few issues during the decade since we moved here.  I consider myself a good neighbor, frequently delivering baked goods and pitching in whenever necessary. I thought we lived in a happy, cohesive neighborhood, which is why I was shocked to learn that my neighbor admitted to not liking me.

I realized that I haven't spoken with her in a few months, but between her snowbird lifestyle and my schedule, I assumed it was just a matter of timing. It never occurred to me that she was deliberately avoiding me. Why would she avoid me? After all, I think I'm delightful! 

All kidding aside, I haven't been able to shake off the fact that she doesn't like me. I have invested far too much mental energy trying to figure out the reasons and to devise situations to redeem myself. Then I had an epiphany- this is her issue. I've done nothing wrong, and have been only kind and generous with both my time and efforts. I have watched her dog during her three week vacation, baked countless cookies and cakes, helped shovel their driveway and even spent far too many hours helping her "organize" her treasures for an Ebay sale. 

Upon reflection, I have done far more for her than she has ever done for us. I don't know why she doesn't like me, and at this point I really don't care any more. I am going to continue to smile and be kind, but she is being cut out of our baked good delivery rotation.  If you don't like me, you don't get my cookies!