Why I’m Not Grateful to My Husband for Staying After I Lost My Eyesight


My daughter’s christening was a monumental debut for both of us. She was being introduced as the newest member of our family, and I was coming out as her newly blind mother. After surviving the ceremony unscathed, my husband and I proudly carried our precious bundle into the celebration venue and handed her over to her godparents while we assumed our roles as hosts. He went one way and I went the other, bouncing from table to table knowing that if we finished quickly, we might actually get to enjoy the hot meal we were paying for.

For the most part, everyone I spoke with greeted me with a barrage of compliments. You look great. The baby is gorgeous. The food is fantastic. Occasionally, a guest would inquire how I was holding up since becoming legally blind a little over a year prior. It was nothing I couldn’t handle. I’d been mentally preparing for the inquisition for weeks. Just as I’d finished schmoozing my last table, an elderly relative grabbed me by the hand on her way back from the restroom. I politely answered her questions about my current medical status postpartum. I could, however, feel myself becoming increasingly irritated by her lack of sensitivity on the subject. Thankfully the conversation was interrupted by my infant daughter’s cries. As I moved towards the sound of my baby, the woman leaned in and whispered, “You must be so grateful to your husband for staying with you after going blind.”

Hearing her words made me wonder: Did she secretly represent the consensus of our guests? Had I misconstrued her elderly honesty? Grateful? Was I supposed to be grateful to my husband not leaving me after I lost my vision? On a day when I was supposed to be joyously celebrating all the things a person should be grateful for, I was suddenly distracted by three distinct reasons for why I was absolutely not grateful for having a husband who stayed.

1. We took vows.

Holly Bonner.3-001

Call me naive, but in a not-so-distant past, two eternally optimistic young people decided to get married. We took vows. In good times and bad, in sickness and in health. Sure, no one knew on our wedding day that we would have to face the long and arduous journey of me losing my eyesight. No one has a crystal ball into the future. But when you sign on to be someone’s partner for life, you need to be ready to greet the unknown. It’s definitely easier to cut your losses and run, but if the shoe had been on the other foot, I know I’d still be here. The person I pledged my life to understands the gravity of the words “till death us do part.” I’m not grateful for having a husband who stayed; we took the same vows.

2. We’re still us.

Losing my vision didn’t cause me to lose sight of the person I am. At my core, I remain the same woman my husband fell in love with. On the day my world became permanently blurred, nothing was more painful than not being able to clearly see his face. Because that’s the face I look to for comfort when I’m afraid, and I was terrified. We both were.

My husband was my rock during those first difficult days, as he always had been. We made decisions about my treatment and rehabilitation together. My husband is my cheerleader, not my caretaker. Yes, our relationship has been uniquely tested, but the foundation it has been built upon can withstand anything. I’m not grateful for having a husband who stayed; my disability hasn’t changed “us.”

3. We’re role models for our daughter.

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There is something special about the relationship between a father and his daughter. Our little girl has had her daddy wrapped around her finger since the moment he laid eyes on her. My husband knows we’re the role models she will look towards when choosing a partner for her life. He takes that responsibility seriously. We both want our daughter to understand any relationship worth having involves effort and commitment between two people. Having a disability doesn’t change that. She will witness the peaks and valleys of our lives, but will become stronger knowing her parents could overcome anything together. Her daddy is special, not because he stayed with her mommy, but because he illuminates unconditional love for everyone he cares about. I’m not grateful for having a husband who stayed; we are equally responsible for being relationship role models for our daughter.

So here’s what I am grateful for: I’m grateful I chose to marry a man who’s in it for the long haul and meant the vows he said when he married me. I’m grateful for a husband who loves all of me, not just parts, but all. I’m grateful I chose a man who’s a good role model to his daughter. Hopefully, she will look for a partner in life who possesses the huge heart and strength of character of her daddy. I’m grateful for a husband who has never, not once, doubted my ability to be a good mother to our child despite being blind. I’m grateful for a man who’s intelligent enough to know my disability doesn’t define the woman I am.

Staying with the person you love if they become disabled shouldn’t require gratitude. The important parts of a person don’t change; what’s in their heart remains the same. My husband is not a martyr. He’s not a saint. He’s simply a man who honored his commitment to our relationship. He doesn’t need nor would he want my gratitude for staying, but he will always have my utmost respect for being the kind of man he is. Blind or not, I know we will never lose sight of our love for one another.



I Cried After Taking My Daughter With Down Syndrome to the Dance


If you can be anything, be kind.

Last night was the homecoming dance, and my daughter Courtney had so much fun getting fancy. A cute dress, pretty hair and her sister putting just a touch of makeup on her. She looked in the mirror and said, “I look like an angel. I look pretty.” And she did.

So off to the dance we went. Courtney and I walked into the school and waited in line to pay her $5 admission. She was nervous but so excited. 

I wish I could tell you that the moment she walked in the crowd parted and she was greeted with high-fives, fist bumps, hugs, hellos and kids asking her to dance.

Instead, Courtney was at her first homecoming dance standing off to the side looking at her feet.

Not one person said hello, not one person asked her to dance, not one person acknowledged her except for a girl who smiled at her.

This lasted about five minutes, then Courtney and I danced our way onto the floor. We danced to every song for about an hour. We got low with Usher, sang “Wrecking Ball” way too loud, slow danced to “God Gave Me You,” did the Cha-Cha Slide and more.

We had the best time.

Courtney’s knee was hurting a bit so she said she was ready to go. On our walk to the car I asked how she liked the dance. Her response: ”It was the funnest night, and I’m a good dancer, Mom.” I told Courtney how much fun I had and that I was so excited to get to go with her.

After Courtney went to bed, I sat outside on the back step and cried. I cried because I wanted just one person to be kind and say hello to her. I cried because I wanted just one person to be kind and ask her to dance. I cried because I didn’t want her to have to dance with her 40-year-old mom. I cried because I love her and wanted this night to be so amazing for her.

Then while replaying the dance in my mind, I thought about Courtney singing “Wrecking Ball,” how she loved it when I twirled her and how she laughed every time she tried to twirl me. I remembered how I totally screwed up on the Cha-Cha Slide and she said, “Mom you not doing it right.” I thought about how she would hug me during the slow songs and try to imitate the couples around us. I thought about how on every pop song she would say, “This is my jam.” My sadness turned into joy.

I will choose to remember the homecoming dance the exact way Courtney will: a fancy dress and a fun night of dancing.

My hope is that after reading this, you will take time to talk with your children about kindness to others. Every single person, including Courtney, is worthy of your smile and a moment of your time to say hello.

Shawn Sullentrup.3-001


Man With Autism Makes Awesome Animation for Sesame Street


For one autism mom, Sesame Street’s new autism content really hit home.

Mama Fry, a popular blogger who writes for The Mighty and also on her own site called Autism With a Side of Fries, joined her voice to the many who have been talking about Sesame Street’s new autism initiative. Mama Fry posted to her Facebook that the show’s animated short, called “Benny’s Story” was the coolest kid appropriate way to explain autism.

In the animation, which was created and voiced by a man with autism named Shane MacKaskle, a boy named Benny explains in his own words what having autism is like.



Many times I will hear from folks, “How do you explain autism to a child?” Well here is the probably the coolest kid…

Posted by Autism with a side of fries on Monday, October 26, 2015


Read the full text of Mama Fry’s Post below:

Many times I will hear from folks, “How do you explain autism to a child?” Well here is the probably the coolest kid appropriate clip that does just that called “Benny’s Story” from the Sesame Street‪#‎SeeAmazing‬ autism initiative.
It is an animation created & voiced by Shane Mckaskle. Shane, who has autism, created the video through Exceptional Minds, a nonprofit vocational center and animation studio for young adults with autism to develop their artistic interests. And his classmates all pitched in to help bring his experience to life! Please watch, like, and share!

Watch Benny’s Story below: 


We Turned Our Son’s Wheelchair Into a John Deere Tractor for Halloween


Our 1-year-old son, Calvin, is paralyzed from the waist down and uses a wheelchair to get around (and get into trouble). We decided to incorporate his wheelchair into his Halloween costume because he likes candy as much as any toddler and needs a way to get to the front door! Using just a cardboard box, some spray paint and yellow duct tape, we transformed Calvin’s wheelchair into a John Deere tractor that is the envy of every trick-or-treater.

After spending a magical week on Grandpa’s farm, it became clear Calvin needed to be a farmer for Halloween. And what’s a farmer without his trusty tractor?

Using 2 cardboard boxes, 2 paper plates, some extra tires from our stroller, a $2 plastic plate from Target, spray paint, duct tape, some nuts and bolts and scraps of wood, we created tractor that has quickly become Calvin’s most prized possession.

We cut the big tires so they popped perfectly under his hand rails — no attaching necessary, and they easily pop in and out in case it rains, or we want to go somewhere without giant tractor tires. And we attached the paper plates to the cardboard using a large bolt, mostly for cosmetic purposes, likewise with the small tires.

The yellow and black are duct tape, and the exhaust pipe is a paper towel roll with the bottom of a Sonic cup on top, all wrapped in duct tape.

We attached the box to the wheelchair by first attaching the box to a thin piece of wood with drywall screws. We then attached the whole contraption to the wheelchair with two U-bolts. For the front tires, my husband, Nate, drilled two holes into a block of wood, then we popped the tires off our stroller and into the block and attached that to the box with a long, thin piece of wood. The whole front easily comes off, just in case Calvin needs to make a quick getaway (or we want to go somewhere without a giant tractor attached).

The steering wheel is a plastic plate with a hole drill in the middle; it’s attached with a long bolt. We made sure it spins, and Calvin loves it. The last part was wrapping the visible orange frame with duct tape (folded over so no sticky part actually touches the chair.) It was almost too cute to behold.

Calvin was pretty excited the first time he saw it all put together. Dad showed him how to drive it, and it wasn’t long before he took off.

We wanted to make his costume functional — it’s a little more difficult to turn, but other than that, he can navigate around in his chair with no problem. I thought he would crash and smash it all in about five seconds, but he’s been surprisingly aware and careful with the extra two feet of vehicle in front of him.

When our 3-year-old neighbor saw it, he said, “Wow Mom, look at that cool tractor!” Pretty much all the little boys are jealous.

Sometimes other kids are afraid or unsure of Calvin’s wheelchair, but when it’s decked out in an awesome costume, they’re able to see Calvin as he really is — just a normal kid who uses a wheelchair instead of legs and is super excited for all things Halloween.

He’s got the farmer’s wave down… He looks just like his grandpa and great-grandpa!

We used mostly what we had lying around, and the whole thing took only a few hours and about $20.

We have one happy farmer, and a Halloween win!

Follow this journey on Life Is a Bowl of Candy.


2 Things to Know About Seeking a Spectrum Diagnosis as an Adult


For a long time, I had difficulty answering a question that centered around the fact I received an autism spectrum disorder (ASD) diagnosis at the age of 30. It’s a question I get on a regular basis: “Why would anyone would seek an ASD diagnosis as an adult? If you’ve made it that far, what’s the point?”

Finding the right response has been tough because people asking this can have a wide variety of intentions. Some people are simply curious. Some are skeptical. Other people are asking for themselves; they feel they may be on the spectrum and are sincerely interested in finding out whether or not they should pursue a diagnosis.

Over time, the more I engaged this topic, the more I realized my answers were always the same, no matter how or why the question was asked. In each case, I found myself returning to the same two basic ideas.

Why seek a spectrum diagnosis as an adult? If you’ve asked this, or know someone who has, here’s what you should know:

1. Self-knowledge makes it much easier to navigate life.

I believe we are born into identities and roles that the world forces upon us and pressures us into accepting. Examining our own nature and stepping outside of artificial social masks can be a valuable, necessary experience. And that’s as true for those on the autism spectrum as anyone else.

I think some people have a hard time seeing the value in this when it comes to the spectrum. Far too many people still view autism through the lens of negative stereotypes; they see autistics as being “shut down,” “living in their own world,” always the same and never changing. In fact, individuals on the autism spectrum have rich internal lives. We grow. We think. We change. And if someone on the spectrum reaches adulthood without a diagnosis, a huge amount of personal growth can be obtained if they are allowed to seek out more information about autism and how it might relate to their own experiences.

2. If you are on the spectrum, but undiagnosed, it’s easy to develop coping strategies that work against you.

This point is even more crucial than the first one. Not having an ASD diagnosis until the age of 30, I tried to deal with social challenges in ways that ended up doing more harm than good.

I felt pressured to hide differences. I put a huge amount of effort into “blending in” with others, concealing my social confusion and sensory pain. To some degree, I did manage to “blend,” but the end result was a lot of anxiety, depression and self-loathing.

Learning to mimic a narrow range of body language and conversation didn’t make life easier. It just became a grueling obstacle course that never seemed to end.

Only when I finally received a diagnosis was I able to piece together the specifics of my issues with social pragmatics and sensory issues. Only then could I develop new, beneficial coping strategies that were based on an understanding of my nature. These coping strategies massively improved the quality of my life.

Adults and autism diagnoses: What’s the point? The point is self-knowledge.

And the point is giving yourself a chance to dig out of toxic, maladaptive coping strategies. Lacking an accurate diagnosis just makes it so much easier to get mired in false ways of living. And in place of that lack, the world will always pressure you to be something you’re not.

Follow this journey on Invisible Strings.

Lead photo source: Thinkstock Images


The Phrase I’d Want My Younger Self With Multiple Sclerosis to Repeat


Dear Teisha,

When you were diagnosed with multiple sclerosis (MS), the news was unexpected and devastating. But I reassured you that MS doesn’t signify the end. This new journey will be filled with incredible experiences. At the same time, I was up front by warning you there would be challenging times ahead.

This morning, such a time truly arrived. You’re not even properly awake, and you start punching something hard in your bed. You can’t work out what it is. Then your stomach drops. You realize you’re hitting your leg. Yet it’s numb. You can’t feel it. Worse still, the other leg doesn’t want to move, either.

Within a few hours, you’ll be in a hospital bed. It’s a shock. Lying under fluorescent lights in a sterile environment. Surrounded by beeping machines, tubes and strangers while grimacing in pain. I know you hate needles, and you’re now in a constant state of queasiness.

It’s not just your physical surroundings. It’s the reality of this new level of dysfunction. You look at your legs, and they feel disconnected. Over the coming weeks, you try so hard to will your toes to move. But no matter how much mental energy you channel, your body is non-responsive. It’s unbearably deflating. You feel claustrophobic and trapped in your own body. You’re worried you will never walk again.

Emotionally, you also struggle with this new level of dependency. You have valued your independence in your mid-20s. Studying, establishing a career and planning for the future. But now, none of this seems relevant. You despise not being able to function without assistance. Negotiating bed pans, being bathed and dressed. The thought of requiring this level of care for the rest of your life is nauseating.

During this time, MS becomes your identity. The hospital environment encourages you to become one with your disease. Interactions are based on what you have, not who you are.

For example, your doctors (fortunately, not your neurologist) do their rounds, test your symptoms, talk about you among themselves, write notes but rarely share their insights or ask how you’re feeling.

Your nurses usually don’t modify their interactions based on the individual. They talk loudly and simplistically, assuming your impaired mobility has impacted you cognitively.

Medical students eager for you to recount your medical history take note of your every symptom and practice their neurological-testing skills.

You begin to think, “I am MS.” You feel invisible. You withdraw. You lose your voice. You wonder whether anyone can see you — the person, not the symptom or disease.

If I were there, I’d ask you to repeat this phrase over and over:

“I am more than my disease. MS may be the reason for my stay. But it does not define who I am.”

I could spend my energy telling others of your attributes, achievements and dreams for the future. But when you’re lying in the hospital and feeling overwhelmed by your situation, it’s more important for you to remember you are more than your disease.

Teisha Rose.2-001

Next week, you will overhear doctors talking to each other: “At least she can use her arms.” “The relapse is aggressive.” “Damage may be permanent.” These words will create unbearable anxiety and fear.   

But remember, “You are more than your disease.” These doctors can’t see your tenacity. Your determination. Your fight. Such qualities aren’t quantifiable. They don’t appear on neurological tests, nor are they considered when prognoses are inadvertently delivered.

When faced with a hospital stay (sorry there will be a few more), the qualities you’ve displayed in all aspects of your life won’t abandon you. These qualities define who you are. Not MS. And these qualities will influence your recovery and how you respond to any of life’s challenges.

The next few months are going to be tough, but you will get out of bed, out of the wheelchair and walk again. It’s going to be a grueling process, so here’s an incentive to keep going. Next year, you celebrate your good health by immersing yourself in the freedom of travel. You will experience new cultures, meet new people and be surrounded by new beauty. You’ll reclaim your carefree 20s and overcome your memories of this hospital stay.

Be inspired, be excited and keep remembering you are more than MS. It may be a part of your story. But it does not define who you are.


Teisha (15 years older and wiser!)

Follow this journey on Lives Interrupted.


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