Game On

SuperBowl stadium at field levelNo, I’m not one for sporting events, but when your home team hits big time, all the hype can make even the most uninterested local care. With my weekend being as action packed as it was, I was pretty adamant that if I watched the Patriots in Super Bowl 53, I was going to do it from my cozy room, comfy bed, and computer. So, somewhere around six I fired up a live stream and all the software I need to record and broadcast the audio to other interested listeners.
This year, the event was especially interesting with the addition of Aira. For those who don’t know, Aira is a service which uses smart glasses or a smart phone to pair a blind person with a live agent for realtime descriptions of our surroundings. Sometimes, the staff at Aira cover live events like this one without the need of a subscription and it was that which I tuned into for this. By tuning into the Aira coverage and the TV broadcast, I was able to keep track of the game action and appreciate the visuals of the halftime show as well as the postgame wrap-up. Although for legal reasons the Aira agents could not describe the game play for play, the commentary was sufficient and the descriptions they did give were more than I’ve ever had in previous years.
Want to hear my Super Bowl experience for yourself? This includes game highlights and Aira descriptions of halftime and postgame shows.

Think you might want to try aira? I’m glad to refer you. Just let me know you used my link and we’ll both get perks.

Also, as always, I welcome your comments and feedback. Please excuse the website clutter as I’m currently working on rebuilding the page.

On This Day: a Dedication

On January 18, 2018, I made a decision. Not a tiny simple one like what to have for dinner. One of those big decisions you make and hope you’re doing the right thing, only to find it was one of the best choices in your life. It was no secret that he wanted to try a relationship with me, but the distance and complex circumstances of both our situations made me uncertain. Yet, something on that night spurred me on to say yes.

In the months that followed, we learned and grew with each other. Sometimes there were bumps in the road that seemed impassable, but together we came out on top every time. We figured out each others habits, talked out every issue, discovered mutual interests and created a life that has become uniquely ours along the course of 12 months.

365 days later we are stronger than ever. We have found things to do together, and even projects we can both participate on. No distance, doubt, or conflict can get in our way as we continue expanding on the deep bond of love we’ve worked so hard to build. A year doesn’t always guarantee this much success even with an offline relationship, so the fact that we’ve come so far in such time speaks volumes about what’s to come.

Today I’m celebrating this one year anniversary, because our strength and love is something worth recognizing. I believe there is more years to come, more to discover, more memories to make and always more love to feel. This day, this post, and this celebration is dedicated to my love, Michael, and to all the future anniversaries I know we’ll be having.

 

Dwarfism Awareness Q&A

Self-portrait The fact that I have two disabilities means I walk the line between two communities. Often people in one don’t know how the other integrates into my life. So, with October being dwarfism awareness day, I thought I’d pose a Q and A session to facebook and see what people want to know.

How tall are you?

I am 3’8. My arms and legs are shorter than a person my age, but my body is typical for a 25 year old woman. There are over 200 types of dwarfism, which is a medical term for people under 4’10. My form is yet to be found.

Does being a little person effect your daily routine?

Yes and no. It does in the sense that I am always acutely aware of where things are and making sure they’re within my reach. I also spend a fair bit of energy climbing on and off chairs, into cars, etc. Lastly, us short people don’t walk as fast as others, so I have to take that into account when I navigate.

What is the most challenging thing about being blind and having dwarfism?

This made me think hard. Each comes with its challenges, but not much can be attributed to both blindness and dwarfism equally.
Both disabilities make finding things challenging. If I can’t reach something, I basically can’t see it. If I can’t reach it, I can’t climb for it, and even if I did, I still may not find what I’m looking for.

Is it difficult to find clothes in your size for your age?

With a friend at prom, wearing a prom dress. The fact that my body is that of an average woman makes finding clothing a lot easier. Pants, shirts, sweaters etc can all be hemmed to my arm and leg length. 3/4 length sleeves and warm weather things work great. No modification needed. Shoes are harder because my foot size is small and I’d rather not wear bright, sparkle patterned kid footwear.

If you were to build a house, would you want it modified for you?

For the most part, no. I am the type who likes to have people over, and most of the people would most likely be average height. I shouldn’t have guests sit low to the ground or bend over to access amenities of my house when I’m capable of adapting to an average height world. My only exceptions might be a side-by-side fridge freezer combo, and a stove which raises and lowers (yes, they have those.) Also, an elevator would be sweet!

Do you wish you were taller?

Sometimes I wouldn’t mind an extra couple inches, just to minimize the climbing. I don’t wish to be average height, and I don’t want those added inches enough to do something about it.

Did or do you get picked on because of your height?

Not really. I get a lot of curious kids who don’t always understand what they’re saying when they say things. Once in a while I get comments from someone just being rude, and to those I reply with a wave of the middle finger. I always had a lot of friends in school who I think fended off most the grade school cruelty.
Have a question of your own? Find me on social media via the social links menu or toss it in the comments.

Living, Loving, Learning: Leilani’s Letter

What is it like to grow up with two moms and a brother? I never had
two parents nor did I have siblings, but in a way, I guess I did.
Afterall, my earliest memories mostly consist of you, aunt Leilani,
and my cousin, Austin. I remember trecking through the airport heading
to see grandpa, my mother snapping pictures on an old 90s camera that
actually used film rather than creating digital files. I’d ride with
you guys in the backseat of the car, music blasting while my mom
tirelessly gave you directions as you navigated the chaos of
massachusetts roads. We’d grab a booth in a restaurant and eat dinner.
That, or go shopping, which for us kids at four or five years old,
meant playing in the toy section and eating all the food samples that
you and mom could find as you pushed us in those carriages which have
seats for us children.
Even then I loved words, and you loved to read them too me. You’d sit
and read to me until I fell asleep, and then keep reading into my
dreams. We’d read books far above the grade level stuff they made me
read in first grade, and it wasn’t long until I started coming to your
for spelling or definitions of words. Writing this tonight, I realize
that I owe my writing abilities to your ability to nurture a love of
English in my young child self.
When I was seven, you moved away and got married. I flew to meet my
new uncle Michael and sing at your wedding. That summer, I took my
first plane ride without my mom, flying with Aunt Kim to visit you and
grandma and Aunt Dani. I remember Riding in the car with you and
austin; a long car ride listening to country (your choice) and metal
(his). You told me stories to pass the time, experiences of life in
the navy and tales of you and my mom moving from state to state
working wide ranges of jobs some twenty years before. When I was 12 or
13, we did it again, (without two hours in a car) but with all the
stories of your passed which never got old.
You became my tech advisor, my movie recommender, my tv show
introducer (SG1, anyone?) I’d get flashdrives and hard drives in the
male and eagerly connect them to see what great finds you’d decided
worthy of showing me. Later on, the tables turned and I became a sort
of counselor, confidant, soundboard. You’d call me up at one AM,
sometimes to my chagrin, but I’d answer and have long, deep,
multifasceted conversations until three or four in the morning.
We differed considerably in our beliefs, and the way we handled
conflict. We were two people with our own strong views on how things
should be done, but at the end of the day, we related. We related on a
deep emotional, mental level. We knew how it felt to deal with
challenges, and the winding jumbled web of our own, often too crowded
minds. Neither of us possessed an affinity for telling people how we
felt, but by no stretch of the imagination did we not feel.
Wherever you are, take this letter as a tangible token of what you’ve
meant to me. These words are the gateway to the memories within, but
they are only the black and white picture of that which I will hold
with me for years to come. You’re probably looking down on us telling
us to stop blubbering and being all sentimental, but actually, this
post isn’t me commemorating your life, it’s me celebrating it just as
you asked me to do.
Now, do me a favor; find grandpa on that boat I’m sure he’s found by
now, and tell him I said hey. Do some fishing for me while you’re at
it.