How Twins Born at 25 Weeks Are Growing and Developing

There I was, lying on the pullout couch less than 2 feet above the floor, where my mother and my friend, Kathy, were strenuously bending over to pull up my pants, put on my shirt, preparing me for PRWeek.

My mom is a trooper. At 62 years old, she’s made countless trips out of town with me – for work, physical therapy, and the occasional vacation – and she’s always been my “number one helper.” But, lifting and rolling my 225-pound body is more than a one mama job. We are lucky to have Kathy.

There I am, lying on a pullout couch and in the Hoyer lift

Getting in and out of bed, or in this case a pullout couch, could be easier. Unfortunately, all the hotels in Chicago we contacted have beds on “platforms,” meaning there is no space between the bottom of the bed and the floor. Why is that important? Well, there is this piece of equipment – a Hoyer lift – that can assist my helpers getting me in and out of bed. Quite frankly, it’s the only way I get out of bed.

Because we couldn’t find a hotel that simply just had space underneath their beds, where the legs of the Hoyer lift could slide under – lifting and dropping me above the bed – I was stuck on the pullout couch.

And, as I mentioned, the pullout couch is literally only 2 feet above the ground. Not. Easy.

My mom was already fighting a strained back, this inconvenience certainly didn’t help – our four-night trip to Chicago, which included two days of a PRWeek conference, a night out with my coworkers, capped off by my first trip to an improv comedy show. It was going to be a great trip!

But, I had to leave early. It was just too much.

I have a great deal of empathy for my caregivers. Knowing that my mom and Kathy were straining so hard literally just to roll me over to get me ready for the conference, we didn’t have the energy to continue for any time after the conference. No dinner with my coworkers. No comedy show.

It was a great conference. I believe the Easterseals + Change for Balance duo gave one of the better presentations, and I made a number of new friends, but the experience was overshadowed by the inaccessibility of the hotel, and the fact that I had to skip time with my colleagues to go home.

Look, I’m one of the lucky ones, and I’m well aware. I have a good paying job, which allows me to afford bringing Kathy along. I have a supportive mom, who will travel with me when I need help. But, even this crew of experienced travelers and healthcare workers couldn’t take it any longer – we headed home.

Even my mother, one of the toughest and “let’s get this done go-getters” made a comment: “It’s no wonder many people with disabilities choose not to travel. This is really tough.”

And that is the reality. Traveling is really tough. Hotels don’t design with full accessibility in mind and airlines are not accessible for people in wheelchairs. Thousands of people with disabilities choose not to risk the travel, whether for work or for vacation, and stay-at-home where it’s safe, where it’s accessible.

And that’s not right. That’s not fair. It’s not accessible. But it’s the reality.

So, what will we do? Do we stay quiet, stay-at-home, and on the occasional burst of courage take a work or personal trip?

I don’t think so. Let’s get loud. Let’s rally for more accessible hotels and airlines. Let’s rally for accessibility.

I’ll keep on sharing my stories and I’ll keep being “loud.” I hope you’ll keep following.

So much has happened during this holiday season that you may have missed this bit of good news — the U.S. Department of Justice announced it has launched a new and improved version of the Americans with Disabilities Act website.

I just gave the new ada.gov site a look –okay, a listen! –and the updated version of the website is really easy to get through and understand: it’s written in plain language, the navigation tools are easy to use, and the speech software on my talking computer read it all beautifully. The new site was designed to work well with mobile devices and features links that answer questions about everything from service animals to accessible polling places.

Check it out: visit ada.gov or call the Justice Department’s toll-free ADA information line at 1-800-514-0301 (voice) or 1-833-610-1264 (TDD).

This is my favorite time of year. I love reflecting on the year and recognizing what I’m thankful for. And then, once Thanksgiving is over, the days start leading up to New Year’s Eve, which symbolizes the closing of a chapter and the beginning of a new one. For me, a new year feels like a clean slate and a fresh start, an opportunity to look at it from a brand-new lens.

I started 2022 feeling cautiously optimistic. I wrote a post like this before last year, focusing on the pandemic. It was very therapeutic to write it all down — to think to myself, “Okay, it was a rough year, but I’m going to sit here and I’m going to find those silver linings.”

This year feels like a breath of fresh air compared to the last two. It wasn’t perfect — no year ever is — but sitting down and finding its silver linings, expressing what I’m thankful for, comes much, much easier in 2022. So here is my reflection in all its glory!

1. I’m thankful for my friendships. I wrote a post about this recently but truly, I can’t stress this enough. The first thing that comes to mind when I think of this year are my friends, especially the virtual ones. My friends are spread far and wide, and this year I strengthened so many connections and found routines in the day-to-day that really helped with my mental health. I had monthly movie nights with friends. I had virtual coffee dates on Saturday mornings. I had SharePlay sessions with a friend every time an album came out by an artist that we were both crazy for. These small, seemingly insignificant moments got me through some really hard times, simply because they were things that I was able to look forward to.
2. I’ve grown much more confident in my travel abilities. It’s been six months since my MetroLift experience to the airport and sometimes I still catch myself thinking about it. A year ago, there’s no way I would’ve felt confident enough to try that. I am an anxious traveler, and a year ago, I would’ve let that anxiety get the better of me and insist that we come up with a travel plan that does not involve relying on para-transit, maybe asking a friend to drive me instead. But now? I trusted that Juan knew the system, and I trusted myself that I was independent enough and courageous enough to try something new. And so I did it, and it went well, and I felt liberated enough to write about it.
3. I stayed in Houston for a month and it was a success! Juan and I have been in a long-distance relationship for so long that we knew that one of us would eventually need to relocate. I’d already fallen in love with the Houston area, but I wanted to make sure he and I could live under the same roof before making the big decision. During that month-long visit we had a lot of open and honest conversations about our relationship, cohabitation, and our expectations. And I did a lot of networking, too. I checked out the transportation system, the way strangers treated me as a person with a disability, and other things like that gave me a glimpse of what my life in Houston might be like. And I loved that life.
4. I’ve grown grateful to people who take the time to provide equal opportunities for blind and visually-impaired individuals, such as the creators of audiovault.net. This site provides free TV shows and movies guaranteed to be audio described. I prefer this over going to movie theaters — I’ve had far too many bad experiences at movie theaters (sometimes giving us the wrong audio description device, other times giving us a device that didn’t work and needed to be fixed). I’ve watched so, so many more movies this past year knowing I can count on audiovault to provide us with access to accessible content.
5. I’m thankful for my family’s efforts to include me. Example: during season 41 of the TV show Survivor, CBS started providing audio description. That means that every week now when I watch survivor with my parents, my mom turns on the audio description. That way, she no longer has to describe and can focus a bit more on the show, and I know precisely what’s going on in the show without needing extra help from family members.
6. Thanks in large part to the YouTube channel “Yoga with Adriene,” I now do yoga every day. I occasionally turn to Sara Beth Yoga. Both of these channels do a great job at describing yoga poses and, if you aren’t familiar with the practice, have beginner videos as well. Therapists have recommended yoga to me for anxiety, and ever since I started doing yoga every day with my mom, it has become part of my day and has done wonders for my mental health.
7. Lastly, I discovered a good (and very accessible) journaling app called Day One. I wanted to get back into journaling. This app allows me to journal whenever and wherever I am, and I love how it feels to take time to write down my feelings.

Gratitude is something I constantly work on. On bad days, I could always have the mindset that the entire day was awful, and “at least there’s tomorrow.” I’m learning now that there’s always something to be thankful for, even if it takes some time. I think that’s something we should all strive for.

I hope you all have a happy Thanksgiving, enjoy the rest of 2022, and have a hopeful, positive opening to 2023. Happy holidays!