Dear Nurse,

The first words I think you deserve the most are “thank you.” The list of everything I am grateful for would fill a 200-page book. So I thought I should tell you some of the things that make you stand out from so many others in your field.

Hearing your voice as you walked in the room to say “hi” on your day off after a meeting brought a big smile to my tear-stained face. Not many nurses would do that for patients on days when they’re not required to be taking care of them. But you didn’t stop there. I know that Patient Controlled Analgesia (PCA) pump was a pain in the butt, but you never showed the frustration that I’m sure it brought with it. Speaking of frustrations, those veins of mine… thank you for always believing me when I say they’re going bad (I’ve yet to be wrong) and calling the IV team one to two times per shift.

I know coming in every hour to give me some type of medicine was probably tiring, but it was very much appreciated. The fact that we always both requested each other during your shifts made us a pretty great team.

I’m sorry for the person I turned into while on such a high dose of those steroids; I think we both know that’s not the normal me. But thank you for taking the time to get down to eye level and ask what you could do to help me. Thank you, once again, for advocating for me and reaching out to the doctors after I had already attempted talking to the doctors about my feeding tube being messed up. Thank you for getting the ball rolling so that I could have it replaced.

I truly loved and enjoyed hearing all the stories you had to tell me about things outside of the hospital, like your puppies and how they’re doing, because, for once, it makes me forget about “On a scale of 1-10, how’s your pain?” I can’t tell you how wonderful it was for you to take the time to actually wash my hair with real water and real shampoo and not the shower caps. Not once has any other nurse offered me that option, but you did it without even me asking. And I can’t tell you how great it felt to feel somewhat normal.

This next part is probably going to make me tear up, but it’s worth writing about. That Monday started off like any other Monday had been during the last couple Mondays in the hospital. You’re bright smile came shining in with my 8 o’clock meds, we filled each other in on the weekend, and you went to eat your second breakfast. Physical therapists came and saw how much I had declined over the weekend, and I told you after my next dose of pain meds I wanted to try again. So we did, and after getting halfway to the nurses’s station even you were surprised at how bad my balance was that day, and I mentioned being really dizzy. So back to the room we went.

That’s when you noticed the my left pupil was dilated and unresponsive. I could tell you were freaking out yet trying to keep calm, and I appreciated that because it kept me calm. You rubbing my shoulder telling me I was going to be okay really meant a lot. I remember you calling the ACT team and a bunch of doctors suddenly standing all around me doing a bunch of tests and bright lights. I was dizzy, had a bad headache and severe nausea. The next thing I know I was being sent straight to the Pediatric Intensive Care Unit, and you went going with me.

Thank you for coming with me so I had a familiar face, and a comforting hand. Thank you for settling me in to the PICU, and then coming again to check on me after your shift. Once again, the next day before your shift, thank you for coming into check on me.

Thank you for being a nurse, a friend, an advocate, a lifesaver, a hero and everything in one. Don’t ever doubt yourself, because I thank you, and every patient you care for though they may not say it, is thankful and grateful, and lucky to have you as a nurse.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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So this is going to be emotional for me, a personal and probably a poorly articulated post. I feel the need to write this for two reasons: therapy (at least for me) and awareness.

A few months ago, Jessica was diagnosed with Asperger’s syndrome. (And if you are wondering, I did ask Jessica’s permission before I posted this!)


Although it was a massive shock (to put it mildly), it was also like the light switch went on. The last 12 years flashed in front of my eyes, and they all made so much sense.

For Jessica, too, at last she knows why she feels so different to her peers, why the concept of friendship eludes her, why she struggles with the complexity of socially acceptable and unacceptable behaviors that can vary from one country to another, from one school to another, from one family to another, even from one person to another.

The point is, when I first found out, my brain did what it does best: research and see what you can do to help. And I did.

My heart, on the other hand, is still lagging behind — way behind. My other daughter has Down syndrome. You see, when children have Down syndrome, say, or any other “visible” difficulties, the “advantage” is that you know from the time they are born and can put everything in place for that special journey.

However, when it comes to children with difficulties that are not visible, well, they don’t get away with much. Not with parents, they don’t. At least not until parents realize it is not just a personality trait, or a phase they are going through and will grow out of, or “the middle child syndrome,” or because she has a sibling with special needs, or  because we’ve moved so many times, or any excuse under the sun. Sometimes, any excuse is better than the fact that something is not quite “right” with your child.

And in that time capsule, from the time your child is born and you finally find out there is a reason why they are the way they are, there can be so much tension, so much frustration and so many misunderstandings from and between the parents and their child. So much wasted time and energy. Especially when that child is doing well at school and seems to just get on with everything that is thrown at her! If you’re lucky, that time capsule is short.

Bad parenting will always be the first culprit to that awkward sentence, that awkward behavior or that social slip. Why? Because the rest of the world can’t see any visible signs that that child is actually different. Just different.

You can’t blame other people for passing judgment. We are all guilty of it at one time or another and, to be honest, I do believe that bad parenting is to be blamed for a lot of children’s socially unacceptable behaviors. We are only human.


All I’m saying is, please try to keep an open mind. Not just with other children (or adults) who are not visibly different, but also with your own children. I wish I had noticed earlier that Jessica was actually different and not just a bit difficult.

The diagnosis didn’t change Jessica. She doesn’t need to be changed; she is a wonderful person with a beautiful soul. What the diagnosis did change was tremendous and so wonderful: the dynamics of the relationship she has with us is completely revolutionized. We finally get her, and that’s a relief not only for us but for her! There is much less tension and frustration at home. As far as she is concerned, she now understands why she feels like an alien at times and that there are a lot of people just like her in our world and that everything will be just fine, everything will be just fine…

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“Wow! He is capable of so much more than I would have thought possible just reading his file before I met him!” Music to a mom’s ears. She gets it. She gets HIM. We are going to be OK.

He is my son, Nick, high school freshman, music lover, thrill seeker with an infectious smile that can charm just about anyone. She is Allison, recent college graduate studying for her Master’s in Special Education, always looking for the positive in every situation, hired to be Nick’s assistant as he navigates his school day.

Nick has autism. His biggest challenges are communication and sensory processing. These challenges can make it difficult for him in the general education classroom. In fact, before high school, the majority of Nick’s class time was spent in a self-contained classroom. As we were preparing for him to enter high school, I wanted more inclusion for him so that he really felt a part of the school. While this was not the usual path for kids coming from the “Lifeskills” program, our high school was willing to give it a try for Nick and he was enrolled in 4 of his 6 classes in a general education setting.

Allison has been his biggest supporter every step of the way. When curriculum needs to be differentiated, she collaborates with Nick’s team of teachers to modify assignments so that they are meaningful to Nick and he can participate with his peers. Allison is equal parts Mama Bear and Mama Bird, keeping a watchful eye on Nick while pushing him out there and letting him fly, always looking for ways to facilitate his successful inclusion in a group.

One recent assignment in History really touched my heart. The students were assigned to design a t-shirt that represented them. Allison contacted me to get a few more ideas about Nick’s interests. I relayed that he loved music, rock climbing and the outdoors, which was pretty much what she had in mind. Since drawing is difficult for Nick, we decided that she would draw a shirt and then have Nick find pictures to mimic the drawing.

When I saw what she came up with, tears came to my eyes.

It was the perfect depiction of Nick with the title “Put No Limits On Me.” My son gets to spend every day at school with someone who believes in him beyond measure.  There is no greater gift.

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Hey, you. Yeah, you. You have a child with Autism.

And you know what? It’s not your fault.

A few days after you informed your family your son (or daughter) had been diagnosed with autism, a family member posted a link (and tagged you) on their Facebook page. The link contained an article called “Tylenol during pregnancy is now linked to Autism Spectrum Disorders.”

A different family member called you to let you know, “they always knew there was something wrong with him.”

Another one let you know they had thought that (autism) was what was wrong with him, because they read about it on the Internet. And we all know everything we read on the Internet is true. And Google can diagnose anything. And using Google makes said family member an actual doctor. Feel free to roll your eyes right now.

Maybe they’re all trying to help. Maybe they’re just oblivious to the fact your world just crashed to the ground in a million pieces and they think somehow, some way, this information is going to help you.

But what it really comes down to is this: it’s not your fault.

No matter how many articles you read that link different things to be the possible causes of autism (vaccines, Tylenol, GMO’s, genetics, environment, etc.), nothing you did or didn’t do caused your baby to have it.

It’s completely natural and normal to sit and drown your sorrows in article after article about the possible causes of your baby’s Autism. We all want to know, right?

But what we really just need is support. Not people telling us how we may have given our children autism.

You didn’t give your child autism. It’s not your fault.

To all of the family members out there trying to be helpful by passing along information, please don’t. I can guarantee we already know this stuff. If you want to help us, do something to support us. Ask how we are. Come over to play with our children. Try to understand and have compassion for us and don’t be mad when we tell you that you will never truly understand what we are going through.

Most of all, never, ever tell us it’s our fault.

Because it’s not. It’s just not.

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My grandmother used to call me “Bootsie” because I refused to wear anything other than my sparkly pink cowboy boots when I was a kid. My insistence had a little bit to do with the fact that my family happened to be living in Texas at the time and a lot to do with my stubborn 8-year-old fashion sense and commitment to making a statement.

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“Well hey there, Bootsie,” she’d say in her Philadelphia accent when I marched into a room. She’d be cooking something — she was always cooking something — and I’d twirl for her and stomp around the room while she worked. She’d ohh and ahh and say I was a model.

It’s been a long time since she called me by that nickname. In her last few years with us, her memory declined, and although she always seemed to know who I was, that was about all she could remember.

Gram passed away about eight months ago (I wrote about her passing here), and now I live in New York City. Although a lot has changed, I still rarely don any footwear that isn’t boots. However, now I’ve replaced the flashy, bejeweled cowboy boots with a pair of dirty and well-worn black Frye boots. They still give me the same shiver of confidence when I march out the door in them.

Every time I splash through a puddle or thud into a restaurant or bar, I think of Gram and I smile. I know she’s with me.

And I can hear her saying, “Well hey there, Boostie.”

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My sister and I with Gram.

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In just 122 hours, a year of preparation will all get put to the test. In 7,367 minutes, a group of 30 of the most talented, brave and amazing young women of Minnesota are going to be walking across a stage in gowns just as unique as the girls in them. 

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April 25 is the Minnesota Miss Amazing 2015 Pageant. I am a state co-director of the event. Minnesota Miss Amazing is a nonprofit organization that’s a branch of the National Miss Amazing Organization, which Jordan Somer started in Nebraska in 2006. It’s a program that creates pageants for girls and women, ages 5-35, with disabilities, giving them an opportunity to develop lifelong skills in a safe, endlessly supportive environment. 

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Throughout the day, Minnesota Miss Amazing participants are going to be busy practicing their talents, learning skills from Miss Minnesota USA, playing games and getting pampered like queens… all for the price of donating five cans of food. The girls will work on their presentation skills, tie blankets and so much more, all building up to main event.

The young women compete in three different skill areas. First, one-on-one interviews with our judges where experienced professionals will ask the participant or the participant’s representative simple questions about themselves to practice communication and conversation skills. The second area of competition is their on-stage introductions where the participant states their name, age and a few of their favorite things, which allows the participants to gain experience with public speaking and be proud of their abilities. And finally, evening wear, an opportunity for the participant to wear their favorite dress and be escorted by a (pretty cute, in my opinion!) young man. This gives the participant the opportunity to showcase their confidence through body language and poise. Once the judging is done, our professionals get to put down their pens and enjoy a talent show that the girls are encouraged to take part in, giving them the opportunity to show off their favorite talents.

In a mere 442,059 seconds, I’m going to be able to enjoy one of the most rewarding parts of my journey with Miss Amazing. I will get to watch these beautiful, unique women transform into princesses when they hear the applause from the audience. I will be able to stand backstage next to my co-director Jordan Crosser and we will be able to celebrate with the rest of the community all of the abilities of these girls and women with disabilities.

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We face disability, disease and mental illness together.