Archive for the ‘updates’ Category

2019, a quick look back

Wednesday, December 18th, 2019

 

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One of the highlights of 2019 was Oscar as the featured guest on Connections with Evan Dawson, an hour-long radio program on our local NPR affiliate, WXXI 1370AM. Oscar spoke about disability rights and awareness, and did us proud, to say the least. (David and I appear on the show as well, along with Oscar’s school counselor). Here’s a quick one-minute spot from the show:

 

And here is the link to the full hour-long show:

https://www.wxxinews.org/post/connections-oscar-merulla-bonn-disability-rights

This came about because last spring Oscar’s fifth grade teacher invited him to give a presentation to his class on disability rights for Human Rights Day. Once he moved to the middle school in the fall, he requested to give this presentation to the faculty at the middle school. The Connections producer caught wind of the presentation and invited Oscar on the show!

 

This fall Oscar was the Ring Dude in Briana & Brad’s wedding. Briana was Oscar’s very first MDA camp counselor when he was six and seven! What special people, what an incredible event!

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Oscar has taken his drawing to a whole new level this year, these are a few in the recent series of demons he has created:

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David had quite the year. He injured his knee in March and had ACL reconstruction surgery at the end of May. For a guy who had been running 6 days a week, and doing the lion’s share of the physical work of taking care of Oscar, this was no small ordeal. We are deeply grateful for the folks who fed us and helped us out with Oscar! David was cleared to run in October and completed PT in November. He worked so hard to get there!

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And I did a lot of reading this year (this is just a small sample) and I also gave a reading, for the first time in a long time, with my friend and one of my favorite Rochester writers and artists, Reenah Golden.

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We participated in the Rochester east-west anti-racism walk with our friend Ken, who is the great, great, great grandson of Frederick Douglass.

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And we took Oscar on an overnight trip to see one of his favorite bands…

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We had a much needed and deeply relaxing/rejuvenating week at the ocean (Rhode Island) where we ran into dear friends and neighbors who we ended up spending much joyous beach time with!

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And we had the great fortune this year of seeing many friends and family from far away, many of whom we had not seen in quite some time!

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David with my two favorite cousins at the Mark Bradford show at the Baltimore Museum of Art

 

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Oscar with friend and author of Good Talk, Mira Jacob. (If you haven’t read her book, you must!!! All three of us appreciated it deeply, one of the best books of 2019 for sure!!!)

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Oscar & Lila (at the Memorial Art Gallery) have known each other since they were in utero

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We became great friends with this family when Oscar and Graham were in preschool together! We caught up with them in RI!

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We had too much fun with these guys to remember to take a photo until it was dark. We’ve been friends with Sarah nearly 20 years, but we live thousands of miles away from one another…

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And what joy to see this Sarah, who Sally went to college with, and her kiddos.

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And another fabulous fall visit from Noppa and Merrill Bittner!

 

We are grateful for ALL our family and friends, near and far, and for many good times spent.

xxoo,

S, D, O

SMA Awareness Month

Saturday, August 31st, 2019

August is SMA Awareness month. Throughout the month I posted four mini-blog posts on Facebook, and thought it was worth gathering them together, here, for anyone who didn’t get to see them all. It’s a tiny peek into our world of disability. Additionally, there is a bonus link at the end, I highly recommend you take a look! Here are the four off-the-cuff posts with the original photos I posted them with…

August 2

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August is SMA Awareness Month. I know some amazing people in the SMA community who are planning to post every day, or several times throughout the month, different facts and info regarding SMA, disability awareness, etc. I’d love to believe I will, but the truth is I’m sleep deprived, and I never know what I’ll have the time/brain power/inclination to actually do. I could say that SMA has been part of our lives for 9.5 years because that’s how long ago Oscar was diagnosed, and that’s when we first heard of it. However, it’s always been a part of our lives because David and I were each born as carriers of SMA, and never knew it. About 1 in 40 people are carriers, in fact. I am so much a better person for the presence of SMA in my life, much of that is owed, of course, to the bright light our Oscar is. I have learned so much about accessibility, about acceptance, about inclusion, about creativity, about advocacy because of SMA. I have met remarkable humans: kids, parents, PTs, physicians, NPs, RNs, PAs and so many more. I have learned that walking is definitely not the most important thing I can do and that one can have a completely fulfilling and joy-filled life and never walk. I have learned how to step out of my comfort zone and ask for help. I have learned how to step out of my comfort zone to tell complete strangers they are out of line in parking in the yellow lines or in the accessible parking “for just 5 minutes.” I have learned that doctors and administrators are just people too, and at times I know more than they do. I have learned when to listen to them, and when to question them, and when to be silent and do the opposite of what they suggest. I have learned to pick what really matters to me in life and stick with it. And to forgive myself when I am too tired to stick with it. I have learned that my kid knows more than I do about living with disability, and sometimes I have to back pedal and say “I’m sorry, you are right.” I’m looking for that last sentence to neatly wrap up this little post, but every day I am learning more, there is no end to learning, to experiencing, so there is no real end to this post either. Thanks for reading. xo

 

August 8

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More about SMA awareness month. Things we have to think about every time we leave the house, especially going to new places: Will there be VAN accessible parking? Is there any accessible parking at all? Are all the spots already taken? Where are the curb cuts? Are there even curb cuts? Will there be muddy/gravelly/uneven or otherwise challenging or inaccessible terrain? Is the entrance to where we are going accessible? Do we need to bring one or more of our portable ramps (we‘re SO lucky to have them, nonetheless they are heavy and awkward to wield)? If we can get inside is the whole place accessible? Are there additional interior steps? Are things placed at a reasonable distance to allow a wheelchair easy access through? Will it be super crowded (it’s very challenging to move through a crowded space in a wheelchair)? How much extra time do we need to allow for strapping Oscar in with his 5 buckles he can’t do himself to secure him in our van? How much extra time do we need to allow for a slow lift or a busy elevator? Do we need to cover Oscar’s joystick because of rain or snow? Has snow been adequately cleared for a wheelchair? Is there an accessible bathroom? If the bathroom is labeled accessible, and even if it is ADA approved, is it actually accessible? (Many ADA approved stalls are too small, or have doors that open inward, making it impossible to close the stall door once a power wheelchair is inside the stall). Is the bathroom gender neutral? (When Oscar and I go out together, alone, this is key, he is not ok with going into a women’s room!). And probably a dozen or more other things that are so second-nature to our thinking that I can’t even identify—just to leave the house, people.

 

August 21

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SMA Awareness month post: People say things to people in wheelchairs that they don’t say to people who don’t use wheelchairs. It can be weird. Watch out you might get this face, if you do! Oscar, David, and I are working on coming up with some come-backs that will hopefully make people more aware, and hopefully not come off as rude, but honestly, this kid hears so many weird things (and the same ones again and again) it’s hard, sometimes, to address some of these and not sound rude. Some examples: We were in a parking lot recently (in the rain) and Oscar was zooming into the van. A passerby said, “Wow, look how fast!” (wouldn’t you be running in the rain?!) and then (and this is one he gets ALL THE TIME), “You really know how to maneuver that well!” I replied, “Yep, just as well as you and I can walk.” She laughed a slightly uncomfortable laugh. I get that someone unfamiliar with people in wheelchairs wants to relate in some way, and this seems to be an easy go-to. But would you ever say to an ambulatory ten-year-old, “Wow, you’re really good at walking!”???? He/we also often get, “I’ll pray for you!” Oscar’s comeback for that is, “Yes, please pray that I don’t get a lot of homework.” People in wheelchairs don’t need more prayers than people who walk. Life in a wheelchair is not unfortunate. Honestly I’d like to say to people who say that, “And I’ll pray that you learn not to ‘other’ people.” People also like to ask if Oscar has a license or tell him he’s going to get a speeding ticket. That was a little bit cute at age four. Not so much at age ten. Oscar has been in situations where adults in charge have said, “Slow that thing down!” or “Park that sucker!” The chair is part of him. It is dehumanizing to refer to it as separate from him, as he is the one in control. Would you ever say, “Slow those legs down!” to a kid who is running? Strangers often also like to refer to Oscar’s chair as a “car,” “cart,” “buggy,” etc. Perhaps there is some fear of naming what is. A child in a wheelchair. Guess what? He knows it is a wheelchair. He has known since he got his first wheelchair at the age of 19 months. It’s not scary, it’s the truth. And he LOVES his chair. The day he got his first power chair at the age of 3 remains one of the happiest days of my life, because he finally had the independence that other kids his age had had for some time. We’re loud and proud here in this family. People with disabilities are people. Talk to them like you to talk to any human.

 

August 31

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SMA Awareness Month Post: Disability Pride. Yes PRIDE!!! Approximately 20% of the US population have a disability, and nearly one billion people worldwide have disabilities. A disability is just one of the many ways each human is unique from another. Oscar is so proud of who he is, as are so many people with disabilities. He doesn’t wish he was any different than he is. Oscar does not wish he could walk, he never has, in fact. Oscar’s disability is a part of who he is, it cannot be separated from him. Oscar says, “You shouldn’t feel sorry for me because I’m disabled. It’s who I am, it’s part of me…I’m just a kid like any other kid.” This concept is foreign to many. It was somewhat foreign to me before disability became a part of my everyday. Architecturally the world is not made for people in wheelchairs, and that is its own giant hurdle. When you notice a business with no accessible entrance, or no accessible bathroom, or shelves too tight together to easily fit a wheelchair, say something! But please also say something when you hear people using a different tone of voice with disabled folks, when you see people treating those with disabilities differently simply because they are disabled. In order to spread this message of pride, we need an army of accomplices. It’s exhausting day in and day out, especially for Oscar, to have to explain himself, to have to listen to the strange things other people say to him. Anyone who belongs to a group that is marginalized by society knows this. Because of my relationship with Oscar my mind and my heart are expanding. I am learning to further grow my empathy, I am learning to look around me more, to place deep trust in the voices of those speaking from marginalized communities. Join us in our pride. Not pride that Oscar is so cool *in spite* of his disability. It is not something to *overcome*. It is not something to *fight against*. It is not an IT. Disability is an important part of who Oscar is.

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And finally,

I’d like to share with you the instagram account of a dear friend of ours who we know from the SMA community. She spent the month of August posting on Instagram in honor of SMA Awareness Month, and her posts were informative, moving, thoughtful, hysterical—all of it—capturing moments of the disability experience in a raw and beautiful way. You’ll see some of our sentiments mirror one another, and she also offers different layers, details, perspectives, especially as an adult who uses a wheelchair. Her posts moved me to no end. Check them out:

https://www.instagram.com/letsdothisheather/

We first met Heather when Oscar was three!

Oscar and Heather become fast pals at the conference. Seen here making the diver "OK" sign together!

Oscar and Heather become fast pals at the conference. Seen here making the diver “OK” sign together!

 

Happy SMA Awareness Month! Thanks for reading!!!

xxxooo

Sally, David, & Oscar

Frederick Douglass Bicentennial, Garth Fagan Dance, and Hamilton all in one week!

Monday, December 10th, 2018

It has been possibly the most culturally exciting week of our lives! And it was much needed. I haven’t posted in a very long time (but I have been writing, eventually that writing will see the light of day). I often post a year-end blog, with some highlights of the year. I may or may not get to that this year. The three of us carry a lot in the day-to-day (literally, for me and David, lifting Oscar). There is a lot that we have to deal with from an accessibility and advocacy standpoint, and simply managing the day-to-day of living as, or caring for, a person with a disability. We get tired easily, and slog through the multitude of weekly aqua therapy sessions (which O loves, thankfully!), doctor’s appointments, and other obligations. It can be hard to make room for even seeing the people we love, never mind getting out to culturally enriching events.

This week we did it! Three remarkable events in seven days!

On Monday night, we went to the capstone event of the Rochester Frederick Douglass Bicentennial year, Prophet of Freedom: Honoring Frederick Douglass in Word and Song. Keynote speaker was David Blight, historian and author of the brand new Douglass biography. Every single person who graced the stage that night was inspiring.

Here, Ken Morris, great great great grandson of Frederick Douglass (AND great great grandson of Booker T. Washington) greets Oscar. They had met back in April when Ken was in town, and became pals then. (Photo by Chris Christopher)

Here, Ken Morris, great great great grandson of Frederick Douglass (AND great great grandson of Booker T. Washington) greets Oscar. They had met back in April when Ken was in town, and became pals then. (Photo by Chris Christopher)

The event took place on the 171st anniversary of the publication of the first North Star newspaper. A piece of music that was written for Frederick Douglass, on the occasion of him leaving England to return to the Untied States, was played for the first time in 150 years. Ken spoke eloquently, telling the story of his great grandmother who had met Frederick Douglass, and whom he knew as a young boy—sharing that the hands that touched Frederick Douglass also touched his hands, that he is one person away from Frederick Douglass, one person away from history, one person away from slavery. I have heard him tell this story at least three times and every time I get the chills, and tear up.

On stage, beside the speakers, was one of the replicas of the Douglass statue that has been created by artist Olivia Kim in honor of the Bicentennial. The statue was made in the image of the statue that currently stands in Highland Park in Rochester, which is the first monument to an African American anywhere in the US, dedicated in 1899. 13 statues were made to be placed throughout Rochester in key locations that hold an important piece of Douglass history. (More info here: http://www.douglasstour.com/ ). Ken’s mom, seeing this statue for the first time, had an emotional moment with the statue of her ancestor, as she took the stage to speak.

Here is the statue that sits outside Hochstein (the location of Douglass's funeral) in the nighttime snow, after the event.

Here is the statue that sits outside Hochstein (the location of Douglass’s funeral) in the nighttime snow, after the event. Ken Morris’s hands were used to shape the hands of these statues.

I could go on and on about the night, how Carvin Eison, the project director for Re-energizing the Legacy of Frederick Douglass gave an inspiring welcome, or how Oscar stayed engaged for every minute of David Blight’s hour-long lecture, or how moving it was to hear Thomas Warfield sing Like a Motherless Child in honor of Frederick Douglass, or any number of other things from the evening. It was electrifying, and so inspiring. I have been on the Frederick Douglass Bicentennial Committee here in Rochester this year, through my work at Writers & Books, and it has truly been one of the most fulfilling parts of my 2018. I could go on and on about that, too, but my aim is get a post out quickly that also includes two other events…

Thursday night we went to see Garth Fagan Dance. Garth Fagan started his dance troupe 48 years ago, right here in Rochester, and has long since gained international acclaim. He is most famous for choreographing The Lion King, but I knew his work long before that. My mom and I used to usher for his local dance performances when I was a kid, and that’s exactly what David, Oscar, and I did on Thursday.

Appropriately, Oscar and I are both wearing hand-knit items by my mom (my skirt, and Oscar's Greek mythology sweater).

Appropriately, Oscar and I are both wearing hand-knit items by my mom (my skirt, and Oscar’s Greek mythology sweater).

I don’t think enough time has passed for me to have formulated the words—or maybe there aren’t words because the art form is about movement—to describe the power of the evening. There was a beautiful dance honoring the lives lost on 9/11, an amazing new work choreographed by Norwood Pennewell, and there were two very early dances that were revived for the night, one from 1981 that I am certain I have seen before, possibly as a kid, and one from 1978. Those were equally exciting as the brand new tribute to, yes, Frederick Douglass!, that included, in one of the movements, the Olivia Kim statue of Frederick Douglass. The movement alone is incredible, and it always has been so with Garth Fagan. The dances tell stories and evoke emotions in incredible ways. But the way the music, the costumes, and the dancers are all in conversation throughout the pieces is truly brilliant.

This is the first time Oscar had seen Garth Fagan Dance perform, and he was deeply moved. He really enjoyed his post handing out programs to audience members. I think this is something we will have to do again!

This is the first time Oscar had seen Garth Fagan Dance perform, and he was deeply moved. He really enjoyed his post handing out programs to audience members. This is something we will do again!

Another highlight of the evening was running into dancer Guy Thorne, both before and after the performance. We had met him earlier this year when he spoke eloquently at the funeral of the mother of one of Oscar's friends—and we learned that she had been an internationally acclaimed dancer herself, who had also danced with Garth Fagan. Oscar's friend has since moved back to Jamaica, where most of his family lives, and they exchange email from time to time. Running into Guy added to the warmth of the night for us.

Another highlight of the evening was running into dancer Guy Thorne, both before and after the performance. We had met him earlier this year when he spoke eloquently at the funeral of the mother of one of Oscar’s friends—and we learned that she had been an internationally acclaimed dancer herself, who had also danced with Garth Fagan. Oscar’s friend has since moved back to Jamaica, where most of his family lives, and they exchange email from time to time. Running into Guy added to the warmth of the night for us.

And that brings us to Sunday:

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Hamilton!

Last week a contact we have at the Make-A-Wish Foundation got in touch with us to let us know that a donor had donated 4 tickets to Hamilton in Buffalo and she thought of Oscar right away, as she is aware that Oscar is a serious Hamilton fan. Oscar is a serious Hamilton fan. That’s an understatement. He started memorizing the show the day he got the soundtrack, two years ago, and the music has often soundtracked his day since then. Lin-Manuel Miranda has become his hero. We had to jump at this opportunity. The seats were not wheelchair accessible, but they were in the orchestra, and on an aisle, so we decided it was worth doing whatever we needed to (booster seat, cushions, fighting the crowds with a wheelchair), to make it happen, to transfer Oscar into a theatre seat. I didn’t tell anyone about the tickets for fear of jinxing this opportunity (i.e. Oscar getting sick, a major snow storm, etc).

Turns out they were pretty spectacular seats...

Turns out they were pretty spectacular seats…

The fourth seat went to Oscar’s great friend Charlie, whose family first turned us onto Hamilton!

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Of course the show was amazing, to see this music come to life on stage. To have these incredible lyrics that we know inside and out take on a three-dimensional moving shape. It was so fantastic to listen to Oscar and Charlie’s critique on the way home, because as well as I know the show, they know it ten times better, and they could really identify the moments that were very different from the original cast recording—for better or for worse—and we all reveled in the moments that brought the story to life in a way that the music alone can’t. It was truly magical, to be right there in the room where it happens…

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It was just too cold to line up a proper selfie with the sign in perfect alignment, but we tried!

It was just too cold to have the patience to line up a proper selfie with the marquis in perfect alignment, but we tried!

We are a family that values the arts so much, and we prioritize the arts in our lives. But sometimes circumstances or resources don’t always allow us to participate to the fullest extent we might want to. We are deeply grateful for these experiences this week, that pulled us out of the daily grind, and so thankful for the people who made these experiences possible for us.

What a week!

On Hawking, the Walkout, and Words

Sunday, March 18th, 2018

Dr. Stephen Hawking, a professor of mathematics at the University of Cambridge, delivers a speech entitled "Why we should go into space" during a lecture that is part of a series honoring NASA's 50th Anniversary, Monday, April 21, 2008, at George Washington University's Morton Auditorium in Washington. Photo Credit: (NASA/Paul. E. Alers)

I awoke on Wednesday to the news of Stephen Hawking’s passing. I immediately wanted to add my voice to the chorus on social media celebrating his life. But language stopped me. My first thought was, “Our world has lost one of its greatest minds.” That is an acceptable thing to say about someone who is able-bodied. But to refer to someone who is disabled as “a mind” makes their body invisible, and promotes ableism. I would have to reframe my thoughts. Also I wanted to link to an article from a reputable news source. The first site I visited said that Hawking “suffered” from ALS. To assume someone with a disability “suffers” is ableist. Just like using the phrase “confined to a wheelchair.” My child has a neuromuscular condition, and gets around in a power wheelchair. If you have spent time with him, you know he does not suffer. Nor does he feel confined. These are assumptions made about the disabled from the outside.

I forget these are things I didn’t use to know. Things that I need to say because other people do not know them yet, and it is important. The language we use to describe one another matters. Especially when it is the privileged using language to describe someone who is part of a marginalized community.

I skimmed articles from three or four other news sources and was thrilled that “suffered” only appeared in one. And nowhere did I see the word “confined.” This is progress. Some of the stories did seem to think that part of Hawking’s legacy included the Academy Award given to an able-bodied actor for portraying Hawking in a film. And here we come to another problem. “Why?” you might be asking. Why is it a problem that an able-bodied person plays a person with a disability? You think to yourself, Well, Eddie Redmayne did do a very good job. And so I ask you this: when was the last time you saw a disabled actor play an able-bodied character in a major motion picture or on network television? You’re stumped, right? So, if actors with disabilities can’t play people without disabilities, and they can’t even play people with disabilities, then what work are actors with disabilities getting? That’s a problem.

There were plenty of other concerning posts and news stories, some suggesting that he was brilliant in spite of his disability, that it was miraculous that he had a sense of humor and a zest for life considering his circumstances. One illustration showed his empty wheelchair with communication device parked amidst the stars and an unrecognizable silhouette of a man walking out into the cosmos. As if he is now free, fixed. Folks let’s face it, there was nothing broken about Stephen Hawking.

So what is it that made Stephen Hawking stand out? Why did he have such an impact? Sure, he was a brilliant scientist. He made revolutionary predictions and discoveries about black holes—in fact that they are not entirely black—that they emit radiation. This was revolutionary in physics. But it’s more than that. It’s that he brought science to the people, made it more approachable. And perhaps he did the same for disability—in being this iconic figure who also used a wheelchair and a communication device.

Something else significant happened on Wednesday, hundreds of thousands of students across the country walked out of their schools to protest gun violence. This was the largest student protest in this country since the Vietnam War protests in the 1960’s. It feels significant to me that these two events coincided. The passing of this brilliant and important human, and children and teens banding together to have their voices heard. The past gives way to the future. Stephen Hawking began his important work as a very young man. History shows that youth are the future, that youth make waves and make way for the future. 

As far as I know, nine-year old Oscar does not know about the walkouts, does not know about the March for Our Lives scheduled for March 24. People who know we have attended some marches in the past year have asked if we are attending. I don’t want my child to have to know that children have been gunned down again and again and again in their schools over the last handful of years. I don’t want my child to be afraid. His school practices lockdown drills in case “bad guys” get in, and that hypothetical is enough.

Oscar has said several times in the last few months, “We’ve been to a women’s march, we’ve been to a science march, we’ve been to a climate march, and we’ve been to a race march. When are we going to go to a disability march?” He says, “It’s my kind our president makes fun of. I want to go to a disability march.”

I saw posts from friends with disabilities on Facebook indicating what a role model Stephen Hawking had been to them as children, because he was the first famous person with a disability in the public eye they could really look up to. Could see themselves represented in. Another news story suggested he was as brilliant as he was because of his disability. That he had to do things differently than others—he couldn’t write his theories and equations on a chalkboard like his peers, which enabled him to think in a completely different way.

Maybe there is no relationship between Stephen Hawking’s passing and the student walk-out. Maybe they are just two random events that happened on the same day, that both occupied space in my head and heart that day. But they are now tied together in my memory.

I leave you with Stephen Hawking’s words:

“For millions of years, mankind lived just like the animals. Then something happened which unleashed the power of our imagination. We learned to talk and we learned to listen. Speech has allowed the communication of ideas, enabling human beings to work together to build the impossible. Mankind’s greatest achievements have come about by talking, and its greatest failures by not talking. It doesn’t have to be like this. Our greatest hopes could become reality in the future. With the technology at our disposal, the possibilities are unbounded. All we need to do is make sure we keep talking.”