The Family I Chose: The Gutierrez Family

“Friends are the family you choose,” my parents would often say when I was young.  As we moved to New York from Buenos Aires, those words became so incredibly real to me.  Being away from my relatives made me look for that warmth and closeness in other places, and as my parents predicted, I found it in my friends.

As a sibling of a child with disabilities, it was always my “job” to be guarded, and to vet every single person that we met.  This was a responsibility that I somehow assumed for myself and took seriously.  This meant that it was always difficult for me to have a large group of friends.  I always preferred a small, but remarkably close group.  I was always protective and picked my friends wisely.

My lucky stars must have aligned the day I met Nelly, a September morning in 1997.  I probably should also thank our daughters, Iliana and Carolina, for having sat together that day in kindergarten class!  Needless to say, that spearheaded a friendship that would stand the test of time.  But through all this time, there was something that really stood out about Nelly, who became like a sister to me, her daughters Iliana and Ivana, who are like my nieces, and their late husband and father, Anibal:  Their ability to understand my brother, love him for who he is, and the desire to be of service to those like him.

From left to right: Ivana, Nelly, and Iliana Gutierrez

I really have no words to express my gratitude to them.  They allowed their love for my brother to serve as a guiding principle in their lives.  I never had to pretend to be anything around them.  I could be myself.  I could express my doubts and my fears.  And most important of all, I could blindly trust them with my brother’s life.  After all, they designed their lives around children and adults with disabilities:  Nelly, Iliana, and Ivana all work in the field, in different capacities, and make a huge difference in people’s lives daily. 

From left: Ivana, Iliana, and Nelly

And when I say they make a difference, I really mean it.  They really, really do.  They all participate not only in their professional capacities but also bend over backwards to advance the rights of people with disabilities around the world.  They fight for access and inclusion in every area of life.  They do this because of their love, commitment, and passion for what is right.

Nelly and I

Nelly, Iliana, and Ivana, thank you for being who you are, and for your respect, love, and dedication.  I am proud to call you my FAMILY.

An Angel on the Road: My friend Lucy

“A real friend is one that walks in when the rest of the world walks out” Walter Winchell

Growing up in the late 70s or early 80s with a brother with disabilities was not easy.  It is never easy:  The world is just not made for people with disabilities.  But back then, this subject was taboo.  I still remember when I was a young kid, about 10 or 11 years old, and my parents went to see this highly renowned neurologist at a very famous institution in Buenos Aires.  When they came back, my father told me that there were basically told that since they already had two “normal” children, they should concentrate on raising them, and put the third one, my little brother with disabilities, in an institution.  I remember that my mother cried for days.

I started seeing the world in groups of people:  1) Those who had a passion for helping, the superheroes, like my brother’s speech teacher, Alicia,  one of the sweetest people on earth, or the “new” neurologist, the one who had the task of making my mother whole again, Dr. Roveta,  2) And those who  were angels on this journey, like my friend Lucy, who unbeknownst to her, became one of the most positive influences in my life.  Angels were those people who not only accepted me as I was, an insecure, self-doubting big sister, who up until then, did not know what all of this meant, but also catapulted me to look forward in full acceptance, love, and compassion.

This all goes back to when I was about 12 years old, and Lucy came to visit me at home.  Even though the circumstances or details of Lucy’s visit are a bit murky after so many years, this encounter which marked my life is still deep in my soul and is still a guide in my life.  I had been sick for a few days and had been absent from school.  To my surprise, towards the end of the week, Lucy and her mom came over to visit.  Neither Lucy nor her mom had ever been to my house.  She knew where I lived, but I had never invited her over.  Why?  Up until that moment, I kept conversations about my brother to a minimum.

My friend Lucy at Iguazu Falls, Argentina, in 2014.

Lucy knew about my middle brother, Hernan, but knew little to nothing about my youngest brother, Fernando.  I know she must have wondered, how is one of her brothers going to school with her, but the other one isn’t?  Up until that moment, I tried to limit those conversations that referred to my brother’s age in particular.  It was hurtful enough to hear my classmates talk about their little brothers or sisters calling their names, saying words, communicating, running, talking…..All those things were a struggle for my little brother.  He was a school-age little boy and he was still non-verbal.

But that day, as Lucy and her mom walked into my house, she was surprised, but not because of my brother, but because I hadn’t told her.  I hadn’t confided in her.  I hadn’t trusted her.  And to my bigger surprise, she was not angry with me.  She didn’t judge me.  She was, instead, full of compassion and love.  She made it clear, at her young age, right then and there, that she would never stop loving me and that she would always accept me.

Lucy with her husband, in 2017.

That was the first time that Lucy visited my home and met my little brother, but it was not the last time.  She continued to visit me and my family.  She continued to show me not only the humanity in her, but the humanity in my brother.  So what if he can’t talk?  We can help him get what he needs.  So what if he can’t run?  We run for him.  Lucy gave me hope.

Lucy was an angel on the journey, and still is.  I would go on to meet so many more angels and superheroes over the years, who helped me fight the villains out there and the doubts within me.  Do you have any superheroes or angels in your life?

If you want to share your stories of angels, superheroes, or villains on your journey, please leave us a comment!

My Son’s Disability is Invisible. On Mother’s Day, I Celebrate

Guest post by Stephanie Duesing

Disclosure: The post below may contain affiliate links.

I didn’t know my son Sebastian until he was fifteen. That was the year we had our first real Mother’s Day celebration. We lived in the same house together for fifteen years, so don’t misunderstand. I gave birth to him. I changed his diapers and taught him to ride a bicycle.

I was a stay-at-home mom, and he was my only child, but I didn’t know him. We spent hours together every day playing and doing crafts together. He painted the most extraordinary pictures even as a toddler. His existence filled my imagination from the moment that I looked at the faint blue positive mark on the pregnancy test, but I still didn’t know him until he was a sophomore in high school.

Now Sebastian is eighteen, and every time he hugs me I can still feel the shell of his tiny newborn ear against my lips and his infant body in the nook of my shoulder where his chest meets mine. I always inhale, trying to recapture that baby smell and the tickle of almost invisible hair on my lips. His hair is now thick and smooth, not the dandelion fuzz of pale blond.

He still hugs me every night before I go up to bed. Even after everything, especially after everything, Sebastian tells me that he loves me. Now taller than me, when his long arms reach around my shoulders and he leans in for the hug, I can still feel his little sneakers banging my hips and his little toddler arms hugging my neck. I smell the ghost of Cheerios-past every time. I hear his child’s voice whispering,”You are the best mom in the world.”

In the car when we talk about the things we’ve been through together, about how I finally came to know him when he was fifteen, I reach my hand out to him. Sebastian’s cool, long-fingered artist’s hand lands in mine, squeezing. In his gentle adult grasp I feel the ghostly hand of a child in mine, much smaller.

I cherished every sweet moment with him. Every hug, every smile, every game of hide and seek. I rocked him to sleep each night when he was little. We read aloud together until he was twelve. He still hates Les Miserables. Tolkein was more his thing, with the dragons, wizards and the magic ring that makes you invisible but also drains your soul.

What magic ring did Sebastian have that cast its spell so thoroughly over him, that it silently saved him while killing his soul? Surely it was not the cloak of invisibility that he wore all through his childhood as he zoomed through my house waving his wand. He was Darry, King of the Fairies and Professor of Defense Against the Dark Arts. He cast his charm all over so thoroughly that I didn’t see him. I couldn’t see him.

Nobody saw him. You see, Sebastian is the only person in the world known to see with words like a dolphin sees with sound. His blindness is an invisible disability. He has always slipped through our sighted world with what appeared to be the same ease as a spinner dolphin flying through the air.

I remember his eyes, so bright blue and filled with pain as we both sobbed on the kitchen floor. It was January of 2017 and we had just discovered that fifteen-year old Sebastian couldn’t recognize his own face and had taught himself to navigate our own home by counting his steps and turns. I had to tell him that he’d been born blind, not understanding how it was possible myself.

Now I am privileged to see the man who walks through this world with dignity and grace. His dry, laconic humor cracks me up, and his striking art inspires me. With his help and support, I am fighting to end the discrimination against the millions of people who have cerebral/cortical visual impairment. CVI was identified as the number one cause of visual impairment in the developed world more than ten years ago and still doesn’t have a diagnostic code. On Sunday, May 10, 2020, I will celebrate my fourth real Mother’s Day as Sebastian Duesing’s mom. I was always his mom. I just didn’t see him.

About the Author Stephanie Duesing is the author of Eyeless Mind: A Memoir About Seeing and Being Seen, a true story about the discovery of her son Sebastian’s almost total blindness at the age of fifteen.

Stephanie is devoted to raising awareness of Cerebral/Cortical-Visual Impairment (CVI) and advocating for patients with this prevalent but largely unacknowledged cause of visual impairment.  A music educator, Stephanie has taught elementary and middle school music and chorus, as well as private voice and piano. She also opened her own Musikgarten studio, where she taught classes for families with babies, toddlers and preschoolers. She’s a graduate of University of Illinois at Urbana-Champaign and lives in the western suburbs of Chicago.

Making the Best of a Sad Day

Life in the times of Covid 19.

Today was supposed to go like this: I would get up early, after spending well into the wee hours of the night making sure that every detail at the apartment is taken care of, and I would run to the airport to get my mom and my brother. Instead, none of those things happened, as we are hunkered down in our homes, patiently waiting for this pandemic to ease out.

Although I have always been a fan of “regular days,” this particular regular day is a bit sadder than it should be. I can’t help but think about all the things that I was supposed to do, all the plans now discarded, the hugs not given, the laughs not exchanged.

However, in the midst of all this, I’m also content, calm, accepting. I’m content, because I know what love is, what it feels like. To experience pain is to know love. I’m calm, because this quarantine has forced me to look inward, as it should be, and to obtain the quiet that being, and not doing, entails. And I am accepting, because this is a reality that no one can change, no matter how hard we try.

I am also very grateful, for the beautiful special families out there, for granting me an opportunity to be part of your lives and to share mine with you.

What happens with our aging parent caregivers during quarantine?

My mom, up until recently, lived alone.  What I mean by “alone” is that she was, and still is, the only caregiver for my youngest brother, an adult in his forties with severe developmental disabilities.  My brother needs help with every aspect of daily life.  Unfortunately for both of us, she also lives very far from me.  This put us in a very precarious situation, especially as travel became restricted and tickets were voided.

One question that has repeatedly come to mind (and that my mother has voiced often) is the question of what happens if she gets sick and needs to be completely isolated.  Who would take care of my brother?  And vice versa, what would happen if my brother got sick?  He needs help in many aspects of life:  He cannot prepare food, may need help to eat, go to the bathroom, take a shower, you get the picture.  This question came to the forefront when her entire region was placed on lockdown.  During lockdown, if my mother were to be isolated, no one else could come to her rescue.

In the last couple of weeks I have seen reports from parents who can’t see their children because they work in hospitals and are afraid to be carriers of this virus, or because they, themselves, are sick, and need to be isolated.  I saw a neighbor’s post on social media, where she describes that she and her husband are both infected, and the children are basically fending for themselves.  Good neighbors and local restaurants deliver food to the children so that they don’t go hungry.

My mother was lucky that a cousin decided to temporarily move in with her, and I am forever grateful to her for doing this.  Her region is still on lockdown and it would have been tremendously difficult for her and for me.  For many of us, it is not only the anxiety over the illness but also the anxiety over what happens if isolation is needed that keeps us awake at night.

It has always been my belief that when we live a situation like this for many of us the world only revolves around us and the four walls that enclose us.  It is easy to try to protect what is “us” and “ours” and we tend to forget that it is precisely in times like these that we need to be the most generous, the most neighborly, the most caring, and the most mindful.  These times call for us to reveal the BEST in us.

Thanks to my mother’s cousin, she is not alone, and she can rest assured that in the worst of situations, there will be someone beside her.  If my mother needs to be isolated, my brother will have food on the table and will be able to get assistance for those activities of daily living that would be impossible without her.

My mom and my brother

Are there any other primary caregivers out there who are terrified of being in a similar situation?  I would love to know what you are feeling at this time.  What are your thoughts?

The Long Blink: A Must-Have Book

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When I first read about The Long Blink, I became really interested because I thought this book would illustrate what I, as many other family members and advocates for families of individuals with disabilities, have always been saying:  That a “disability” can be acquired by anyone, at any time, and can change a life in a moment.  The Long Blink surpassed my expectations. This is the story of a family, the Slattery family, and for Ed Slattery and his family, it only took a blink of an eye, a long blink that would change his and his children’s lives forever.

Ed Slattery could not have imagined that a phone call in August of 2010 would turn his life upside down.  The voice on the other line was telling him to get there immediately:  His family had been in an accident.  He would later learn that while both his children had been severely injured by this accident, it was his younger son’s prognosis that was very worrisome.  He would also learn that his wife, the love of his life, Susan Slattery, had died in this accident.

I wish I had enough space to talk about the many reasons why I think this book should be read by the entire world, but since this is not possible, I will try to illustrate in just a few points why I think this book is an absolute must-have for anyone who wishes to understand our community:

  1. Life can change in an instant:  Anything can happen to anyone, at any time.  For the Slattery family, it was Matthew who from one moment to the next, went from a normally-developing young boy, to battling for his life, to making heart-wrenching efforts to be able to hold objects with his right hand.
  2. Special Needs need Special Attention:  Even though well-meaning people may have the best intentions at heart, and may think they can define what our community needs, it is only our community that can and should be an active participant in decision making.  For Ed Slattery, it was building a new home so that Matthew can fully participate in daily living.  For me, it was being able to get a gate pass to accompany my brother to the gate when he flies.  I can’t say enough how frustrating and depressing it was for me to have to work in places where I was told what “script” to follow when dealing with families in our community.   Once, I was reprimanded for giving a parent options.  This practice is humiliating, demoralizing, and just plainly wrong.  In his journey, Ed Slattery discovers how important it is to adapt to his son’s new life and how much growth can result from this adaptation.
  3. Our Community is Inspiring:  Matthew not only inspired and moved his father, Ed, to a whole-new life, but he also changed the lives of so many people around him.  It is easy to see how learning about Matthew and the Slattery family was a transforming experience for Brian Kuebler, the journalist and author of this book.  He was sent to report on this accident first but never lost sight of this family’s experience.  The result was this brilliantly written book and the message of hope and solidarity that it inspires.
  4. Change is Difficult:  As members of this community, we tend to understand firsthand how we got here and what changes need to be made so that others do not have to suffer.  The community at-large, however, may have a much more difficult time absorbing this knowledge.  Since the accident that changed his son’s life, Ed Slattery has been a tireless advocate for trucking safety regulations, as it was a truck driver who dozed off on the road and killed his wife.  As frustrating as this has been for him, he has yet to see the full results of his arduous work.

Reading this book was a very personal journey for me.  It often reminded me of my family, growing up, the challenges and obstacles that we faced.  I’m thankful that because of our advocacy over the years, life has become a bit more manageable for families today.  Reading about the Slattery family leaves me full of admiration not only for Ed and his family, but also for the incredible families out there whom I’ve worked with, and who deal with these issues, day in and day out.

It also deepens my already gigantic admiration for my parents, because it is only through their love that I learned to love our very special village.

Get this book!  Share it with the World!

two trucks on the road

Carrying My Mother’s Bags

Personal Stories Series

My brother, Fernando, was born when I was 7 years old. As I remember, my mother suspected that there was something wrong all through her pregnancy, although she couldn’t quite put her finger on it. To her, something just didn’t feel right.

Her fears were partially confirmed when she had to have an emergency C-section at 7 months gestation. And it didn’t stop there. She continued to observe how this child, her third, would not walk when he was expected, or talk when he was supposed to. My parents did all they could to make sure that they visited the every specialist or doctor that they were recommended by well-meaning people.

At that time, and where we lived, there was no early intervention, or good special programs. My parents had to fend for themselves. My father worked as much as he could, as many hours as it was humanly possible, to supply what the family needed.

I remember very clearly when my parents tried to get speech/language services for my brother. It was just a gamble whether the insurance would pay or not. Most times, my parents ended up paying out of pocket, and barely able to cover one or two sessions a week.

There is a clear picture in my head of my mother, holding my brother, who was a big 2 year old boy at the time, while we were travelling by bus to make it to the therapy center. No one would give up their seat. I guess, in their minds, they could not figure out why a seemingly healthy child would not stand up and hold the bars. What they didn’t know was that my brother had just recently started walking and was quite unsteady on his feet.

I accompanied my mother on many of these trips. It was just impossible for her to carry my brother, who was a quite robust 2 year old, and all the bags she needed for essentials. She tried to schedule appointments when I was available so that I could help. I remember clearly carrying my mother’s bags. And I remember clearly my mother carrying my brother.

To this day, I can clearly see how my mom continues to “carry” my brother, in every aspect of his life. And I, for one, do my best to try to help her with her bags. Love you Mom!

Thank you.

My mom with my brother Fernando in 1979