The Waters of Life May Change, but a Mother’s Love is Constant

a young girl in a wheelchair laughing with her mom

Elena and her mother, Rosa.

I started taking swimming classes at the local YMCA when I was six months old, and those lessons continued throughout my childhood. When I graduated to the “big pool,” the water was much colder and I spent most of my time shivering, complaining, and wanting to get out.

So, one of my favorite childhood memories of my own mother was when she would stand at the end of the shower and hold open a fresh towel and greet me with a huge smile. I’d scamper over to her, and she would hug me with a dry soft towel and keep hugging me until I warmed up.

Thirty years later, I still remember how loved and protected I felt in my mother’s arms. As I witness my own wife, Rosa, serve as her role as mother to Elena, who is non-verbal and non ambulatory, I see similar acts of simple daily love and care for our daughter.

As I am writing this right now, my wife and my daughter are both snuggled together sleeping on the couch. It’s truly beautiful, and I hope our daughter Elena remembers loving experiences such as this for the next thirty years.

I have to be honest with you, though. It’s not always that simple. Life is seldom this peaceful. My wife spends countless hours going to medical appointments and physical therapy with Elena, ordering prescriptions, administering between three and five medications three times each day, lifting, bathing, cleaning, feeding, entertaining, and worrying. These two are currently napping on the couch, but it wasn’t that long ago they were both napping in a hospital bed.

Elena was hospitalized a little over a year ago, and Rosa was by her side for two months comforting her, attentively listening to the medical team, and simultaneously emailing colleagues in the Spanish department where she teaches so that her high school students could stay on track.

Indeed, both Elena and Rosa are impressive in their own right, and although being a parent is incredibly frustrating, exhausting and full of worry, it’s also beautiful. Our daughter is a joy to be around and I know that she feels just as loved as I did when I was wrapped up in a towel in my own mother’s arms.

So, when people ask me if we are going to do anything for mother’s day like brunch or have people over, the answer is always a “no.” To show our love on Mother’s Day, Elena and I will leave mommy alone in the hopes that she can nap, read a book, or just enjoy peace and quiet. Regardless of how Rosa spends her mother’s day, Elena and I want her to know how thankful we both are that she is in our lives.


I’m Giving Out Four Times the Love this Mother’s Day

Remember the 9-year-old who wrote a post here for Valentine’s Day years ago about how much she loves her Dad? DJ Mermaid (her pen name) is a seventh-grader and goes by her real name now. Here she is with a guest post for Mother’s Day.

by Anja Hermann

DJ Mermaid and her mom

Anja and her mom

My name is Anja Korovesis Herrman. I am a 7th grader with a physical disability. I am 12 years old. My hobbies/ obsessions include: Advocating for people with disabilities, reading 24/7 and playing The Sims 4. My favorite books include Victor Hugo’s Les Misérables, Harper Lee’s “To Kill A Mockingbird” and E.B White’s” Charlotte’s Web” and “The Trumpet of the Swan”. I also enjoy planning my 2044 Presidential Campaign (Vote Anja!), knitting, swimming and horseback riding. In addition to the other activities, I rock climb and am a new member of disability rights group ADAPT. This Mother’s Day, I would like to give a shoutout to my mother times four: My aunt, my nama, my mom and my grandma. All of these women are great people who lift up and support me.

Mom is my disability warrior and partner in crime. How the heck would I survive school without you? I probably wouldn’t. I love you and am immensely proud to be your daughter. I would like to refer to you as Deana X for all the amazing civil rights work you do.

Nama, you are my cooking companion and I get most of my music tastes from you. The drive to horseback riding would be so BORING without some Carole King. I hope I’ll someday be able to make as good biscotti as you and carry on the Greco tradition. I just ask that you write the recipe down and don’t pull a Grandma G (i.e“forget” an ingredient just to make it different each time).

Auntie, fellow panda lover, Sound of Music buff and connoisseur of comfy beds, you are my SuperAunt (trademark pending). I go to you when I want to watch old 80’s classics. To this day, the time I was in 2nd grade and was 7 and ill, and you brought over Adventures in Babysitting? It goes down as one of the best sick days in history. You are not a mom, but I hope you will be soon!

Grandma, you taught me about tea parties and the awesomeness that is not just using an electric mixer: it’s kneading with friends. Within your list of secrets, please let me know how you frost your cookies so prettily. Do you have a formula you are not letting me in on?

Happy Mother’s Day to you all!


My Dedication To a Mom Who Has Touched 10,000 Lives

I am delighted to have guest blogger Steve Ferkau here today with the first of many Mother’s Day posts we’ll be publishing this week. Once on the verge of death from cystic fibrosis, Steve is now a double lung and kidney transplant survivor.

by Steve Ferkau

For nearly 60 years now, my Mom has been one of my biggest supporters and cheerleaders. She’s watched me keep the upper-hand on cystic fibrosis, then watched cystic fibrosis slowly gain the upper-hand on me — then she rejoiced when a beautiful person and family gave me two new lungs.

She always loved pinning people with “Donate Life” lapel pins, and she was never satisfied with just giving them a pin — she’d tell them a story. She’d describe her son struggling — and she’d tell them about a beautiful girl from Iowa who saved his life. I am that son, and if I was anywhere near her when she WAS telling this story, she’d pull me over and introduce me.

She always wanted to write that beautiful girl’s Mom a letter, but she’d cry anytime she thought about it. That Mom lost a precious and beautiful daughter, but because of her and them, my mom didn’t lose her son.

Over the years my mother has probably touched over 10,000 lives with her story. I know that the Illinois Organ Procurement Organization Gift of Hope had given her over 10,000 pins — and they’re all gone.

Mom is 87 years old now. She’s wading through dementia and doesn’t quite remember my new lungs or the struggles she helped me get through during the first half of my life. I’ve had that beautiful Iowa girl’s lungs for 19 years. Mom knows me and my siblings 95% of the time, and of course I am the self-declared favorite child.

Mom had long been known for folding copies of Robert Test’s poem “To Remember Me” and including it in cards and letters. Here’s an excerpt:

Excerpt of To Remember Me by Robert Test

At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped. When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my “deathbed.” Call it my “bed of life,” and let my body be taken from it to help others lead fuller lives…If you must bury something, let it be my faults, my weaknesses, and all my prejudice against my fellow man.

Give my sins to the devil. Give my soul to God. If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever.

I know a beautiful girl from Iowa who will live forever. And I know a couple of Moms (and Dads) from Illinois and Iowa who will live forever in my heart. Happy Mother’s day to all.


Why I Am Celebrating Mother’s Day Early This Year

Gus and Beth.

Gus and Beth

For years after our son Gus was born, I begged my husband Mike not to get me a gift for Mother’s Day. “I’m not your mother!” I told him.

Our son Gus has severe mental and physical disabilities — he doesn’t understand what Mother’s Day is. Gus wouldn’t be making me a card. He wouldn’t be presenting me with dandelions picked especially for me. I knew that. But I was determined not to let any of that bother me. I knew I was a good mother, and I knew my son loved me in his own special way.

And then one year (Gus must have been five or six), I burst into tears on Mother’s Day. “I’ll never get to celebrate like all the other mothers do!” I wailed. Poor Mike didn’t know what to do.

This article in Psych Central wishing a happy Mother’s Day to special moms reassured me that I am not alone when it comes to feeling a bit of sadness on Mother’s Day. The article acknowledges that while parents raising a disabled or chronically ill child may have melancholy moments, they are often followed by a renewed commitment “that comes from love and hope and determination.”

Ever since that outburst of mine, we’ve gone out of our way to celebrate Mother’s Day. This year we’re even starting a week early. Tomorrow we’re heading to Wisconsin to spend the day with our grown son in his group home.

We’re proud of Gus. I’m proud to be his mom and happy to celebrate as a family. After we kiss Gus goodbye, Gus’ dad and I plan on spending Saturday night in a nice hotel. So yes, we’re celebrating Mother’s Day this year, and we’re starting early. On May 5, a week before official Mother’s Day, I’ll be ordering room service. After all, breakfast in bed is a Mother’s Day tradition!


America Lights Up Orange for the 100th Anniversary of Easterseals

We were thrilled see major landmarks nationwide light up orange in honor of our 100th anniversary.  Over 40 locations participated. Here are the highlights!

Empire State Building – New York


Niagara Falls


LAX Pylons – Los Angeles


Chicago skyline


Hibernia Tower – New Orleans


Rock and Roll Hall of Fame – Cleveland


See more about the 100th anniversary of Easterseals by visiting


A Message from Our President and CEO on the 100th Anniversary of Easterseals

CEO Angela Williams in front of a word wallWhile Easterseals now serves 1.5 million people in 70 affiliates across the country, our story started as the vision of one grieving father in Elyria, Ohio. After losing his son in a tragic accident, our founder, Edgar Allen, was determined to make a difference for children just like his son, so he set out to do everything he could to change the course of history for generations to come.

As we celebrate 100 years of service at Easterseals, we’re more energized than ever to carry our mission into the next century; but we would be remiss to not reflect on our past and consider how those beginnings made us the organization we are today.

For the 100th Anniversary of Easterseals, I’d like to share with you some lessons I’ve learned from Edgar Allen’s legacy that I try to live by as the current leader of Easterseals National.

  1. Don’t be afraid to dream big. When Edgar Allen realized the lack of adequate medical services available to save his son, he sold his business to begin a fundraising campaign to build a hospital in his hometown. Anyone can make a difference, and no vision is too grand or too bold to accomplish.
  2. Don’t be afraid to evolve and innovate. Once the Elyria Memorial Hospital was up and running, Edgar Allen realized just how hidden from view children with disabilities were. He refused to sit by while children in his community faced barriers to full lives, so he created the National Society for Crippled Children, which eventually became Easterseals.
  3. Be resourceful. In the mid-1930s Easterseals needed to find a way to raise funds for services during the Great Depression. Determined to meet the needs of those they served, the organization embarked on an annual sale of small decorative stamps around Easter time as a way to represent rebirth, new growth and renewed life. Not only did the seals raise money, but they also raised awareness. This campaign led to our current name of Easterseals and paved the way for the organization we are today.

These are among many lessons from our history that we can apply each and every day to ensure a vibrant future where everyone – regardless of age or ability – is 100% included and 100% empowered.

Thank you for your support every step of the way. Cheers to 100 more years of service!


Who Founded Easterseals? The Story of Edgar Allen Pt. 1

The dramatic increase in polio cases during the early 20th century caused the disease to be regarded as an epidemic. Thousands of children and adults became paralyzed by polio, and Easterseals founder Edgar Allen raised funds and built a hospital where children with polio could be fitted with crutches and leg braces. Many children remained at that hospital afterwards to attend school there, but what event motivated this successful businessman to sell his businesses and devote himself to providing help for people with disabilities?

Edgar Allen was born in Newton, Mass. and moved to Cleveland, Ohio in 1876, when he was still a child. He made his fortune by supplying telephone poles to American Telephone and Telegraph (AT&T) and railroad ties for the growing railroad industry.

On Memorial Day, 1907, one of Allen’s two sons — an 18-year-old named Homer — was killed in a streetcar accident. The family was living in Elyria, Ohio (a town with only one makeshift hospital) and Allen couldn’t help but think that if emergency medical care had been available his son’s life
could have been saved. The tragedy inspired Allen to sell his business and devote himself to raising funds for a hospital.

Elyria Memorial Hospital opened in 1908, and it was there that Edgar Allen met met 8-year-old orphan, Jimmy Bodak, who was brought to the hospital in an effort to help straighten his legs. The rest is history — stay tuned for part two to find out what happened after that.

Learn more about the 100th Anniversary of Easterseals!


Checking In: Part Two of My Staycation Story

My last post was part one of my two-part series on how a blind couple (my boyfriend Joe and me) arranged and enjoyed a hotel stay on our own. Here’s Part Two:

A hand opening a door to a hotel roomI was up at 6 a.m. the day we’d be heading to the hotel. I’d gone to sleep early the night before and was too excited to sleep anymore. I used VoiceOver, the speech synthesizer app on my iPhone, to text Joe shortly upon waking up in the morning, as per usual. “The day has finally arrived!” I texted, followed by a countdown until he would arrive at my house.

Joe arrived at 10 a.m., and we departed at about 11:45 for our Italian lunch. I used Voiceover to text the Uber driver that I am blind and to please come get me upon their arrival. The ride to lunch was short, and it was timed perfectly: it was almost 2 p.m. when we left the restaurant and headed to the hotel.

When we arrived at the hotel, I knew exactly where the front desk was. With my purse over my shoulder, my duffle bag in my left hand, my cane in my right and Joe holding my right arm, I proudly walked in and went to the front desk to check in. When I requested assistance to our room, an employee seemed happy to help us to the third floor.

Once we got to our room, our helper asked if we needed any more assistance. Not wanting to answer on behalf of both of us, I asked Joe if he needed anything. He said no. We both wanted to explore the room ourselves first. Before the employee left, though, I did ask, “Is there a special button on the phone to reach the front desk, or do I just press 0?” She confirmed what I had already suspected: I would just press 0.

We spent a couple hours exploring the room, chatting, and relaxing, since we knew we had some time to kill before my parents would be picking us up for dinner. When the time came, the walk from the room to the elevator was simple enough. The walk from the elevator to the front door went well, too. People who saw us passing offered assistance. It was nice knowing friendly people were around and willing to help out, but we were okay on our own: we had this.

When we got back to the hotel, we changed into our swim suits and made our way to the front desk. “Anything I can assist you with?” the receptionist asked. I said we were going to the pool area. “We’ll need some towels, and someone to escort us there.” I heard a friendly smile in her voice when she said she’d be happy to help.

“Do you want to hold my arm?” she asked me as she approached my left side. I smiled, knowing that she might already be familiar with the sighted guide technique. She led us to some chairs in the pool area, and I asked if it would be okay if we moved the chairs close to the railing so we could find our things. She said yes. She led us to the steps leading into the hot tub, and we moved the chairs close to the railing.

We enjoyed the pool and hot tub for about an hour and a half, and finding our stuff afterwards was as simple as I had expected. We climbed out, following the rail around to the right until the two chairs were there. After we were dry and ready to go, I used my cane and walked carefully to avoid slipping on the wet floors (or falling into the pool). It took us a little while to find the doors, but when we did, I proudly announced, “Here it is!”

The rest of the night and following morning were relaxing. I was only a few miles from home, and this felt like a mini vacation. It was definitely worth the wait. We had a 12 p.m. check out time, but we checked out a little early because we were meeting a friend for lunch.

We neared the front desk and were met with the usual, “Do you two need assistance?” I informed them that we were checking out and proceeded to hand over my room key. Joe did the same, and the receptionist led us to the front door. As we stood waiting for our Uber to arrive, holding hands and smiling, I turned to Joe and said, “We need to take trips more often!”


How I Prepared for My Hotel Staycation as a Blind Woman

A hand opening a door to a hotel roomFor Christmas this past year, my parents gave me a gift certificate for a free night at the Hilton Garden Inn hotel in Addison, just a couple miles from my hometown. This wasn’t something I expected to receive, and I took it as a sign of independence. My parents have always been encouraging about my independent travels, whether that meant visiting friends at local or faraway colleges, or (in this case) staying at a hotel.

They’re also good about letting me figure things out on my own, so they left it to my boyfriend Joe and me to choose the date and figure out transportation. Joe and I spent the next few weeks trying to pick a time that would be convenient to go. The certificate didn’t expire until December 2019, but I didn’t want to wait too long. I was afraid we might forget to use it!

After discussing many options, we finally decided to take advantage of the free time I’d have during spring break and use the hotel stay as a mini getaway. We specifically chose March 14. Here’s a little bit of a fun fact: You might recall that in a past blog post, I explained that Joe and I were casually seeing one another before we became an official couple and went on a few dates. March 14 was the day he asked me out on our very first date four years ago. We’ve never acknowledged this day as anything to celebrate, since this isn’t our official anniversary, but since it landed on my spring break we decided to do something different and use it as an excuse to go to a nice hotel.

After finally choosing a date, it was time to call the hotel. I let the receptionist know that we were both blind, so if there was a way to add a note to the reservation, I would appreciate it if that was added. “Yes, of course!” she said. “I’ll also put ‘special assistance’ so they know they have to help you with things like leading you to your room.” The friendliness in her voice was reassuring, and the hint of familiarity, like this news wasn’t a shock, put a smile on my face as I thanked her and said goodbye.

Next was figuring out transportation. I knew that if my parents were free, they would take us, but I enjoy being independent and traveling on my own. I had a gift card for a local Italian restaurant nearby, so we decided we’d take an Uber to that restaurant first, have a nice lunch, and Uber from the restaurant to the hotel to check in. I used voiceover on my iPhone to navigate through the Uber app to enter in the pick-up location and destinations to get the fare for both trips, and Joe and I agreed to split the fare each time.

The day before our trip, my dad took me to the Hilton to get oriented. Upon arriving, we walked to the front desk, and my dad explained to the receptionist that I had a reservation there the following day and, because I’m blind, he wanted to take me around a bit to get the “lay of the land.” The receptionist said that was fine, sounding polite. We started out by walking to the elevators, then heading to a different floor to look at room numbers.

When I was checking out the Braille sign near the door, I noticed there wasn’t a key hole. My dad explained you simply hold your key card up to the door. “It’ll be scanned to unlock the door for you.” This was a relief! It meant I wouldn’t have to request for a corner to be cut on the room key so we’d know how to insert it. After checking out a few more rooms, we headed to the first floor to look at the pool area.

We couldn’t go into the pool area (you needed a key to get in) but my dad was able to look through the window to give me a description of the layout. After practicing these routes a few times — from the elevators to the pool, from the pool to the elevators, and the elevators back to the front — I was even more excited.

Find out how the hotel stay goes in Part Two.


Make a Film Over One Weekend, Help Change the Way the World Views Disability

Easterseals Disability Film Challenge logoThe Easterseals Disability Film Challenge is fast upon us, and entering the challenge is easy. All you have to do is register by April 3, 2019, and then, over the next weekend (April 5 to 7, 2019) , make a film that uses the talents of an actor, writer, director, producer, and/or crew member who has a disability.

Okay, okay, maybe producing a short film in a single weekend isn’t exactly easy, but the rewards are great! The idea behind the Disability Film Challenge is to give both disabled and non-disabled filmmakers a reason to work together, and every year the Easterseals Disability Film Challenge recognizes the talent and hard work that goes into the films by presenting four awards to film challenge participants, including the following mentorships:

  1. Best Film: Mentor Meeting with John Penotti, President of SK Global and producer of Crazy Rich Asians
  2. Best Director: Mentor Meeting with Phil Lord, writer, director and producer of Spiderman: Into The Spider-Verse, Lego Movie & 21 Jump Street
  3. Best Actor: Mentor Meeting with legendary Casting Director Pam Dixon (Angels in the Outfield, City Slickers)
  4. Best Awareness Campaign: Mentor Meeting with Tiffany Smith-Anoa’I, Executive Vice President, Entertainment Diversity, Inclusion & Communications, CBS Entertainment since February, 2016.

I had the privilege of interviewing Tiffany last year when Variety Magazine and Easterseals Southern California teamed up to present a first-ever in-depth look at people with disabilities in the entertainment industry. She works with her CBS Entertainment staff to help directors, writers, producers and casting directors create shows reflecting the real world and acknowledged that progress for actors and creatives with disabilities lags far behind other minority performers. “We have to look broader, disability goes by the wayside far too often,” she told me in our phone interview, noting that’s why she enjoys working with the Easterseals Disability Film Challenge so much. “I’m happy this is really becoming more a part of the inclusion conversation.”

Learn more about each award, the accompanying prizes and last year’s winners at the Easterseals Disability Film Challenge web site, then make sure to link here to register by April 3, 2019.