OK, folks. It’s time for a PSA.

My infant daughter has a large “birthmark” on her face called a capillary hemangioma. To be specific, it’s about five centimeters by six centimeters. It is usually the first thing people notice about her. How do I know this? Because it’s usually the first thing people comment on.

I try daily to remind myself most humans are kind and well-intentioned. I don’t get angry about brief stares. I understand it’s human nature to do a double take when you see something about someone that makes them different. That said, I think I need to share some knowledge.

First, let’s do some basic education. A capillary hemangioma is essentially a “birthmark.” Sometimes they are referred to as “strawberries.” It’s an overgrowth of blood vessels that usually recedes over time. For us, any other complications were eliminated, and my daughter Charlie’s lesion was deemed cosmetic. We watch it to make sure it doesn’t ever obstruct her vision, but that’s it. She takes a daily medication to keep it from growing any further while it’s in its proliferation stage. It should go away fully by the time she is in kindergarten.

I’ve gotten lots of different remarks from family, friends and strangers. I’ve done a lot of thinking, and I want to share some perspective as a parent. This is probably relatable for anyone who has a child who people think “looks different.”

We don’t need to talk about it every time you look at her. Her dad, brother and I see past the hemangioma at this point. Charlie is Charlie, and it’s just part of who she is. It doesn’t need to be constantly commented on, critiqued or questioned. I don’t need your opinion on whether or not you think it’s better or worse. It’s a part of what she looks like and that’s not changing right now — and guess what? It doesn’t have to. She’s unique and beautiful, and I would rather chat about her latest milestone achievement, her amazing smile or how gorgeous her eyes are.

She isn’t in pain or ill. She simply has an unusual quality about her appearance. The most common thing I hear is “I’m praying that it goes away.” Or “I will pray for her.” Or “Bless her poor little heart.” I’m constantly being asked, “When will that go away?” I’ve even heard things as harsh as “Turn her to her good side” or “She’s so pretty otherwise.”

I would encourage you, instead of praying it will disappear, to pray that she grows into a confident girl who loves herself no matter what she looks like. Pray that constant comments and opinions from friends, family and strangers will end before she’s old enough to hear them and wonder what’s wrong with her and why everyone is so worried about it.

I encourage you to look past it. What if I came up to you and loudly asked, “What’s wrong with your baby’s ____ ?” Or said, “I will pray for your child that her [insert genetically unusual quality] goes away.” Just consider that. Consider how it makes us feel when people are so hyperfocused on something so superficial.

Hold the pity. She’s a healthy baby girl and we are blessed. Her hemangioma is just as insignificant to who she is as a freckle on her arm. You don’t need to mention it, and you don’t need to wish it away.

She doesn’t have a “good side” we choose for family pictures. I don’t retouch her hemangioma in photos. Her entire face is my sweet Charlie, and it doesn’t matter what it looks like.

baby wearing blue ribbon bow
Katie’s daughter, Charlie.

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Like many people, I’ve never meet a celebrity, and odds are I probably never will. But my husband and I have met several people who have become personal celebrities! I never expected to meet these people, but I’m so thankful I did. I had no idea what an incredible impact meeting them would have on our lives.

I’ve previously written about my son — how he passed shortly after birth and how he became a donor by giving his liver, pancreas and whole body to research. What I have not shared much about are the people who made his donation possible. The people who worked behind the scenes to orchestrate and facilitate each of his donations — the people most donor families never get to meet.

Some of the incredible people we have met include the coordinators at our organ procurement organization (OPO), Life Connection of Ohio, and the organization who found research recipients for our son’s organs, the International Institute for the Advancement of Medicine (IIAM). Although some people may not think meeting the coordinators who assisted with donation would be important, for us it was incredible. The coordinators were the first people we spoke to on the phone. They were the people who finally gave us a yes after hearing many nos during our six months of searching for options.

woman standing with three men smiling
Bethany and her husband Eric (far right) with regional directors from IIAM

They are the people who explained the donation process, told about the research studies our son’s organs would help and supported us as we tried to make the decisions that would best meet the desires we had as a family. The coordinator at our OPO made all the arrangements for a recovery surgery to take place at our hospital, and the coordinator at IIAM made flight arrangements for our son’s gifts to make it to the research recipients. These ladies showed deep compassion and sympathy as we planned our son’s birth and passing. It was wonderful to meet the people who did so much to make our donation possible and thank them face-to-face.

two women and man standing and smiling
Bethany and Eric with their coordinator from IIAM

We met the individuals who performed our son’s recovery surgery — the men who actually held our son in the operating room after he died and carried out our wishes for him to be a donor. I remember wanting so badly to thank them for taking care of my tiny baby and treating him with dignity and respect during his recovery surgery. When I finally was able to look them in the eye, say thank you and wrap my arms around them, my heart almost burst. I will be forever grateful that I met the men who were with my baby when I couldn’t be.

We met the individuals who decided to allow other neonatal families to donate to research by creating a neonatal donor program at IIAM. We have also met the staff that now regularly serves other neonatal families. Meeting them, talking to them and telling them what a difference they are making has been both rewarding and healing. Knowing the people who are providing this service has allowed me to encourage other families as they consider donation because I know they will be in good hands. I know these people do not take our circumstances lightly; rather, they are touched by each unique situation, each family’s wish to donate, and they have a genuine desire to help with a deep level of care.

It was also amazing to learn how many of these individuals played roles (both big and small) in our son’s donation, as they assisted the coordinator we spoke with on the phone by working out various details, assisting in paperwork, speaking with researchers, giving approval for things to move forward, and supporting our desire to donate. I love knowing both the names and faces of these people — the people who made my son’s donations possible. I’m so glad we were able to thank them in person for what they did to help us.

We met the person we consider to be our son’s primary “recipient” — the researcher who worked with our son’s whole body for eight months, during what we like to call his “internship.” It is almost unheard of to meet a recipient of a research donation, so we viewed meeting the researcher as a small miracle! Meeting this man was incredible. In many ways he spent more time with our son than we did, and during that time he was able to extend our son’s legacy by leaps and bounds. Having the opportunity to hear directly from him about all the things they learned from our son and how our son was able to help get a new device passed through the Food and Drug Administration was amazing. We learned how deeply he cared for our son and how he viewed him as so much more than just a “cadaver.” His entire team treated him with care, respect and dignity during the entire length of his internship.

We also discovered how thousands of other doctors will learn from our son through training sessions and printed material. Hearing the researcher express his gratitude for our son’s gift brought tears to my eyes and made me feel proud as a momma. I felt so much closure and peace after being able to talk with, thank and of course hug this incredible person we will feel connected to forever.

Meeting each of the people who allowed our son’s life to have an extra layer of meaning and were the “hands and feet” to making our son’s donation possible has brought us joy, healing, pride and made us feel a little closer to our son. These meetings have become some of the highlights of our journey. They are memories that we now hold dear. None of these people are celebrities and the world wouldn’t recognize their names if I listed them, but for us, meeting them was better than meeting any celebrity.

woman standing next to man and man holding baby
Bethany and Eric (holding their daughter Hazel) with the primary researcher who worked with their son

Follow this journey on Purposeful Gift.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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. Check out our Submit a Story page for more about our submission guidelines.

I live in India and have albinism. While that attracts plenty of questions of its own, it’s the ones about my visual impairment that I usually find more difficult to answer. Particularly these:

1. “What do you see?”

It’s difficult to explain. And the answer often depends on a range of extraneous factors like the time of day or the lighting in the room. Sometimes, I can recognize you from a distance; other times, I don’t even notice when you’re right in front of me.

Also, I may be extremely myopic, but I can still make my way around without my glasses on. So please don’t gawk. And whatever you do, never wave your fingers in front of my face asking me, “How many?” That’s about the most annoying thing you could possibly do.

2. “Why are you squinting?”

Because I need to. Sometimes, I just can’t see very well, despite having my glasses on. And there’s no doctor or surgery that can fix that at the moment, so please don’t recommend your ophthalmologist. I’ve lived with my condition for 28 years. I’ve done all the research there is to do and seen the best doctors I can afford. I go for regular check-ups and get updates about the latest procedures available, so please keep your advice/suggestions to yourself, no matter how well-intended they may be. This holds true even if you are a doctor yourself or related to one.

woman in red shirt

3. “Do you need help?”

If I do, I’ll ask for it. At least most of the time. Usually for things like crossing busy roads or reading menus printed on walls at fast food joints. But when you try to help me without me asking, it is incredibly offending, like you are making me feel inadequate. I can manage most tasks completely well; I just take a little longer to do them. For instance, at the ATM, I’m a little slow with pushing all the right buttons. That doesn’t mean you have to try to help me. Chances are you’ll just end up confusing me and I’ll take even longer than usual.

4. “Why don’t you drive?”

Because I love myself and respect others too much to risk causing an accident. Driving is great, it is empowering. I would love to drive myself around, but the truth is that my eyesight just isn’t good enough. Public transport can be very empowering in its own way — it gives me extra time to read or check emails or just plain daydream. And it’s kinder to the planet.

5. “Didn’t you see me smile/wave/gesture at you?”

No, I didn’t. And I wasn’t snubbing you. I will never understand you unless I come right up to you and stare at whatever signs you are making, which kind of defeats the purpose of gestures, I suppose. So no, please don’t put me through that. If you want to get my attention, speak to me. My hearing is sharper than my sight.

Follow this journey on Mehak Siddiqui’s blog.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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. Check out our Submit a Story page for more about our submission guidelines.

Finally, LEGO has listened to disability activists and people everywhere who have been calling for them to include representations of people with disabilities in its toys.

  This week LEGO confirmed it’s released a new set featuring a young man using a wheelchair. The new toy was spotted at the Nurumberg Toy Fair in Germany this week and also at the London Toy Fair. It’s part of a new “Fun in the Park” set, according to ToyLikeMe, a campaign working to pressure toy companies into being more inclusive. The set also appears to include a guide dog. “It’s pretty momentous, even though it’s just a little toy,” Rebecca Atkinson, co-founder of ToyLikeMe, told The Mighty in an email. “It’s about the message behind it, which is far, far bigger than a little one-inch-tall plastic guy.”
  Pictures of the plastic beanie-wearing youth in a wheelchair were posted on the Promobricks, a LEGO news blog, Facebook page and shared on a website called Bricksfans. The release of this new figure comes after many months of campaigning by ToyLikeMe, which launched a Change.org petition last year that got more than 20,000 signatures. Last Christmas, ToyLikeMe submitted designs for a disability-inclusive holiday set and campaigned for that as well. Representatives from LEGO confirmed the existence of the wheelchair-using figure in the LEGO CITY set to the UK Press Association on Wednesday, the Daily Mail reported. The set containing the figure will go on sale in June.
  “For Lego to include a wheelchair-using mini-figure in one of their sets is a huge deal,” Atkinson told The Mighty. “I’m not sure they even realize themselves what they have done. It’s massively significant. For a brand as large and loved as LEGO, this kind of incidental inclusion speaks volumes. It says to children with disabilities that the brand is behind them, that they are part of the cultural mainstream.” This is the first LEGO mini figure with a wheelchair, although previously there was a LEGO Duplo range, a series of the toys aimed at pre-school children, that featured an elderly man in a wheelchair. That set was criticized by activists for reinforcing stereotypes about wheelchairs only being for the elderly. This new figure is a part of the LEGO line aimed at older kids.
LEGO figurines.
Image courtesy of ToyLikeMe.
“I’m delighted,” Atkinson told The Mighty. “I’ve worked hard to set this issue on the agenda within the toy industry and say that the cultural marginalization of 150 million disabled kids by the toy industry is not OK. I’m hopeful this is the beginning of real core brand commitment from LEGO to continue positively representing disabled children in their much loved toys.” The Mighty reached out to LEGO for comment but have yet to hear back. For more on ToyLikeMe, or to help support them in their efforts, visit their CrowdFunder page here.

How do you differentiate between a “good” and “bad” doctor? How do you know if the diagnosis presented is accurate or if the options presented are the best ones? How do you know if your doctor or surgeon is suited to your needs?

I’m sure questions such as these go through the mind of every patient faced with a problem that is above average in complexity. It took me 10 years of trial and error to present you this list; some of the lessons have left permanent scars. I hope it helps with your own decision-making process.

1. The right doctor is similar to a good friend.

They listen. You should be comfortable communicating with them. They should never brush off or laugh at any of your concerns, especially if it is affecting your life a great deal. He or she has to take your pain seriously, be it physical or psychological, and treat you with respect. They should never belittle you or make you feel as if it’s all in your mind and that you are just being silly.

2. Always seek a second opinion.

This is probably the most important lesson I have ever learned in relation to selecting a suitable doctor. You’d be surprised at how different their opinions can be, and new insights can be garnered from every single one of them. What one doctor suggests might not be the only treatment option you have. I once had a gynecologist tell me the only treatment option I had was to have my entire cervix removed. Another specialist I visited was appalled by the extremity of this suggestion.

So if you do not trust the opinion of your doctor, or you just want to seek alternative options or a confirmation of your own decisions — get another opinion. It could be worth every penny you’ve got.

3. Listen to your instinct.

This might be obvious to some and takes a bit more work for others who, like me, tend to be have trouble deciding until all pros and cons have been assessed and obsessed over. I am now learning how to listen to and trust that little voice inside me again. More often than not, it already knows the right answers to my own questions.

Believe in your judgment. If that little voice is telling you your doctor doesn’t care or isn’t interested, it is probably right, and you want to stay away from them.

Why does this matter? Because you want to be treated as an individual and not just a job number waiting to be struck off the list. If you are being treated like the latter, there is a possibility your case will not be given the consideration it requires, and that might increase the chance of a mistake happening.

4. Communication and collaboration.

Chronic illness patients often have to keep up with an assortment of doctors from different departments, covering them from brain to bone. When you visit a specialist, they tend to look for and treat specific issues related to their field only, but everything in your body is connected, and one thing can leads to another.

I’ve found the best doctors I have and still have are those who are willing to communicate or collaborate with each other. For example, my rheumatologist takes the time and initiative to communicate with my heart rhythm specialist, and together they discuss the best course of treatment to take in relation to both issues.

One of the best healthcare experiences I have ever had was at the Cleveland Clinic — I was impressed by how aware everyone was, from the counter staff to the doctors and surgeons, on why you were there and what for. Their specialists get together to discuss the best solution to a patient’s problem. With a dozen brilliant minds put together, this can only be beneficial. I remember thinking to myself, So this is what good management is like.

Should you be interested in reading more about their system, this book written by Toby Cosgrove, their president and CEO, has some great insight. Keyword: collaboration.

5. Mentor more than boss.

And finally, at the end of the day, it’s your life and you can choose to live it however you wish. As with everything else, all you have to do is deal with the consequences of your choices. I believe a good doctor should be more like a mentor and less like a boss. He or she should never tell you how to live your life but should be there to warn you of potential pitfalls and guide you toward the right health path. They will never be in your shoes — you have to walk in them by yourself.

In closing, here is one of my favorite health quotes in relation to this topic:

You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist.” – Friedrich Nietzsche

Follow this journey on A Chronic Voice.

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

I feel like people toss around the idea of bravery a lot when they are talking about children with medical challenges. And as I am lying here in a hospital crib at 4 a.m., pinned under my sleeping daughter, Ezzy, unable to sleep myself, this is what I find myself thinking about: What does it mean to call Ezzy brave?

Ez has been sick these last few weeks. We’d kept her home, working carefully with her wonderful pediatricians’ office and home care team to keep her out of the hospital. In the last week we’ve spent no less than seven hours over four days in the doctors’ office. But Esmé took a little turn, and we decided she needed to be seen in the emergency room yesterday. This meant routine work-ups — chest X-ray, IV placement, catheterization, blood draws, exams by a half-dozen doctors — as well as some simple things that are really tough for Ez, like fighting to see in her throat, something that is difficult as a result of the medical trauma she experienced as an infant. Looking in her throat requires coaxing/prying open her mouth with a tongue depressor and a subsequent coughing/retching/spitting up routine. So far we know she has two viruses, and we are also treating her with antibiotics until we have more information about potential/suspected bacterial infections.

As I think about today — and really, any day — I know my daughter is certainly one of the bravest people I know. She stares down things that can make adults weak in the knees. Many times I have watched Esmé go through frightening things, painful things, challenging things and just somehow manage not to be wrecked by it — even as her mama wants to curl up in the corner and cry.

Sometimes, I realize it is just that she doesn’t know any different. Esmé doesn’t know that all kids aren’t regularly subjected to these kinds of awful procedures. This — hospitals, doctors, procedures — it’s normal to her (although, mercifully, it’s far less frequent lately than in the past).

Sometimes, she seems brave because things aren’t actually as big of a deal as we make them out to be. And sometimes, Ez seems brave because she is straight-up just a seriously tough cookie.

It has to be said, though — sometimes, she isn’t brave. Sometimes, she is terrified. Sometimes, she feels pain and shows it. Sometimes, I’m sure, she doesn’t want to be brave and has to be pushed and held into doing something that has to happen for her safety. Sometimes, she doesn’t have a choice. Sometimes, it is just awful and unfair.

This is the problem behind talking about how brave kids are who go through things like this. Because they are so often so brave — at least they often seem to be so brave — and it is a pretty humbling thing to watch. It puts all kinds of other things into perspective. But also, and this cannot be emphasized enough, Ezzy is just a kid. All the other kids who are sick? They are also just kids. Each of them. Kids whose hospital trips should be “that one horribly scary time we had to go to the ER,” not “the ER: the place where everybody knows your name.”

Talking about the bravery of kids who are sick isn’t a bad thing, but sometimes it masks the things people don’t want to think about: kids’ suffering and the undeniable reality that some kids suffer. And it is so wrong. But it is also true. I believe it is true and real for Esmé — even though she cannot say it, even though she has no choice but to go through it.

Talking about the bravery of kids like Ez can diminish their experience of pain. I know this because it is one of the things I tell myself when, like yesterday morning, I hold down her jumping, fighting, sneaky arms and legs so she doesn’t get loose and dislodge the IV being threaded through her delicate veins. I say this over and over to myself to make me feel OK: She’s so brave. She’s so brave. She’s so brave.

And she is so brave.

But it isn’t her job to be the one whose bravery is biggest in the room. She’s allowed not to be brave.

It’s my job to be brave enough to allow her to be scared.

mother holding her daughter

Follow this journey on The Cute Syndrome.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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. Check out our Submit a Story page for more about our submission guidelines.

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