Travels with Leah

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I know, I know… We kept you all waiting to hear about the BIG ANNOUNCEMENT that I said I would post on Sunday. Well, a 5AM flight (WITH Leah) and catching up on life (and sleep!) later, have no fear, the announcement is here.

As you know, Leah and I attended the World Domination Summit (WDS) in Portland, Oregon last week. One of the most unique aspects about WDS is that they have a WDS Foundation, offering individuals “Scholarships for Real Life.” Now I write grants for a living for the non-profit that I work for, Operation Breakthrough. This is a huge passion of mine, but it has also shown me that there are very few grant opportunities for individuals who aren’t a certified 501(c)(3) Not-for-profit organization. The WDS Foundation fills this gap. When I discovered this, there was zero doubt in my mind that Leah and I would go for it. One year, tons of work, and a Skype interview later, we got the news; WE WON THE SCHOLARSHIP. A gigantic THANK YOU to the amazing people in our lives who contributed to helping us get to Portland and make this moment possible!!!!!!!

Standing on stage next to Leah was a dream for me. It was actually the very last conversation I had with my Grandpa, “Grandpa, there’s this scholarship Leah and I are applying for. We are going to enter, and we are going to win,” I said to him with an optimistic hope in my tone. The sparkle in his eye as he sat in the hospital bed motivated me throughout the entire process.

So what is the scholarship for? So glad you asked.

I aim to keep this as brief as possible to give a general snapshot of what’s ahead for Upside Down. Some may have wondered why our blog URL is Upside Down Sound. Here is your answer. When applying for the WDS Foundation Scholarship, I was prompted to answer the question, what problem does your project solve? I then began to think about my sister, Down syndrome, and what challenges these individuals face.

The truth is that there is a booming population of aging adults who have Down syndrome. In the past, the life expectancy of those with Down syndrome was as low as 25 years old. This was because of institutionalization, lack of medical knowledge, and less acceptance/attention to the needs of these individuals. That has since changed (Hallelujah!). Because of this, there is an influx of adults with Down syndrome. So where is the problem? Because of their genetic makeup, people who have Down syndrome are extremely likely to develop Alzheimer’s Disease (if you would like to know specifics why – feel free to reach out to me!). These same people are also prone to both physical health issues, such as hypothyroidism and mental health issues, such as depression.

How can we help? Enter: Upside Down Sound (UDS). UDS is a piano-lesson based app that we are working to develop, with help from the WDS Foundation. The goal of the app is to use basic piano lessons and music therapy to stimulate cognition and combat early onset Alzheimer’s in aging adults with Down syndrome. It will also have a physical health component as well as a social component. And it’s all just beginning!

Click on the link below to learn a little bit more about UDS in a video we made for the WDS Foundation scholarship. If you would like to get involved with the planning process of UDS, please contact us! We can’t wait to get this project moving forward!

https://www.youtube.com/watch?v=3bhJQly31fY

Now, one of the most important aspects of our blog is that we co-write it. Leah is just as much a contributing writer as I am. That said, after 5 days of traveling without our mom or dad for the first time in her life (she did AMAZING!), attending a conference of 1500+ people (meeting quite a few of them), listening to speakers, and participating in workshops… the little lady needed a breather.

Our experience was so unique, and I didn’t want to let too much time pass before writing about it, at least from my end. There will be more reflection on our time in Portland from the both of us in future posts, I promise.

In the mean time, I thought I would share what I learned from Leah during our first solo sister travel experience:

• Holding hands during take off on an airplane really does calm some nerves – even though flying is not a fear of mine. As we took off each time, Leah’s little hand would reach over and grab mine. Every single time, it made me smile.

• Being prepared in small ways can make a HUGE difference. In this case, I snuck some Tylenol in my purse without Leah knowing. Because she wasn’t aware that I had it, she did not ask for it all day. After an entire day of walking, workshops, and carrying around a backpack, Leah was hurting. As she was about to crumble before our last set of speakers, I showed her that I had brought them with me. Life. Saver. She made it through the speakers and we were even able to find a pool table to play at that day!

• Sometimes less is more. For us, this came in the form of a chili dog and mashed potato dinner at the Air Bnb. It was Friday night in Portland, and I could tell Leah was slightly overwhelmed. Pushing her to go out somewhere, although experiencing a city is important, would NOT have been the best thing for us that night. That Friday night in Portland, nothing could have hit the spot better than those simple, comforting, delicious chili dogs.

• Nobody is ever too old for chocolate milk. On Saturday night, the WDS Foundation winners went to dinner together. Having so many passionate movers and shakers at one table was magical. That said, when it was Leah’s turn to order a drink, her request of chocolate milk (I mean, what else would you order?) was denied. They only had regular milk. Instantly, the entire table unified in agreement, “you know what, I want some chocolate milk right now too Leah,” was the unanimous response. The next day, before we were going on stage, the Foundation Board President greeted us with a smile, a copy of her book signed, and chocolate milk in hand. That chocolate milk revived Leah and got us through the day, it couldn’t have been more perfect. You are NEVER too old for chocolate milk.

• There are more good people in this world than we give credit. Traveling with Leah, moment after moment, I was shown patience, grace, and kindness from others. It blew me away. From the worker at the Airport gate to a random person walking next to us on the street, kindness was everywhere. In a time when there’s such focus on the negative happenings – let’s just take a minute to recognize that for every negative moment, there are a hundred positive things happening.

 

Travels with Leah. Now that has a nice ring to it, doesn’t it? Whether we begin writing a book proposal (something that before last weekend, I didn’t even know we had to do in order to get published), polish a duet on the piano, gain speed on our Upside Down Sound project, or inspire one family on the incredible potential that is inside all people, after our WDS experience, the one thing I am certain of is that the best is yet to come.

Here’s to turning our minds Upside Down.

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