Child with fairy dust.

What I've Learned From 9 Years Parenting a Child With a Rare Disorder


My daughter turns 9 this week. It hardly seems possible when I think of how quickly time has passed between her swift arrival on a crisp, gray day and today. The nine years that have passed have taught me more than all 27 years before she became my daughter. Unlike the first weeks and months after I first held her, my thoughts are not frozen with fear or worry. Today, I woke up and knew with certainty that there is no way I could feel this happy had I not experienced the sorrow that accompanied her first years.

I have kept a tattered page from the book “The Prophet” in my dresser drawer since my daughter was a tiny baby, when she was recovering from heart surgery, nursing every hour and struggling each day to even breathe comfortably. I read this quote in the book and it struck me so profoundly that I actually ripped it out and shoved it in my messy drawer, for later, for when the joy presumably arrived and the fear subsided. “The deeper that sorrow carves into your being, the more joy you can contain.” I tore the page out and held it, glancing at it over and over again over the past near-decade and marveling in the highs and lows at how true it rings. It has never been more true than it is today.

Over the years, I have learned that the 22q11.2 deletion that once defined how I thought of my sweet baby girl, that once took my breath and my dreams away, has faded into simply a word on her chart and a source of hope when I read it in the latest article on stem cell therapy’s incredible promise. I look at my daughter Nadia and I don’t see her deletion, heart repair or missing kidney. I marvel that she has the sweetest and biggest soul I have ever seen in a child. I don’t see her speech delay. I don’t see her low tone or foot braces. They are long gone. She gave up signing at age 4 and never looked back – although she often uses hilarious gestures while she is dancing and singing in the shower. I don’t see her learning difficulties. She just read me an entire chapter book and giggled at the funny parts with such delight that I found myself captivated by a children’s story. About hippos.

I don’t see her doctor visits – 20 in the past three months. When we left her appointment last week, she clutched my hand while skipping and told me that “our date” was her favorite part of the day. I don’t see her fused spine, because she surfs and skis and does cartwheels and she literally bounces with joy. Most days, I don’t even see her immune deficiency. Through magic, impossibly wonderful teachers and friends and loads of prayers, she not only goes to school every day, but loves school every day. I think our luck is quite simply otherworldly. Honestly, I think her love and fairy dust have healed all of us and blown into every little corner of our world.

In utero and at two months, we were terrified about what would happen if we lost our baby, our precious baby. We were told that things might work out, but she was little. But her labs were off. But her numbers were low. But they didn’t know. But she had this deletion. We prepared for a long heart surgery that would bring a grown man to his knees. That did bring my doctor husband, the one who never worried or cried, who tended to gunshot wounds in trauma centers, to his knees.

We shut off the radio. We went to bed at 8. We slept fitfully, in between her feedings, and laid solemnly in bed until we had to get up and face the day. We stopped talking to friends with healthy kids because it was impossible to relate to teething and solid food debates when we were researching Duke doctors to do thymic transplants, or finding specialists to help with surgeries. We curled up and rocked our baby, more for us than for her, and needed our own moms and dads more than we had since we were children. I wondered if I had taken more prenatal vitamins, eaten more wheatgrass, more green smoothies, avoided whitening toothpaste, gotten more sleep in pregnancy, if I could have made a difference – spared my baby girl the list of anomalies that stared at me from the hospital’s brochures that accompanied each visit to a different specialist.

And then, the sun came out. It was brighter than anything you have ever seen. Nadia, even as an infant, had a smile so sparkling and brilliant, that it made her eyes scrunch shut. Apparently, the well that sorrow carved was indeed deep enough to hold a lifetime of joy in the smallest imaginable package – 20 pounds at 2 years, 30 pounds at age 6, 40 pounds at age 9. Despite her size, she packs a serious punch. She takes everything in stride and has such a big personality that sometimes I am surprised when I see the scale.

I think we often want our kids to be like us, to meet our standards, to make us proud with their achievements and mimic us so we can relate. We want to show the world how successful and bright our children are – an extension of us. In this case, I think the opposite is true. I think we more often strive to be like her, to accept her for precisely who she is and for what her best is rather than “the best.” She loves so deeply, enjoys so richly and feels joy so intensely that it is like watching a beautiful sunrise and feeling the heat of the best summer day, all at once. She isn’t reserved or self-conscious, like me, and our journey has let me see the best and most beautiful parts of everyone. So, on her birthday, I felt compelled, contrary to my nature but so fitting with Nadia’s, to share something personal with the world, without worrying what others will think.

Since that cold and overcast day nine years ago, we have witnessed countless quiet, unspeakably beautiful acts of kindness towards Nadia and towards us. She has turned our world, our friends, our coaches, our teachers, our neighbors, into family. From the friend who brought me her pillow when I first checked into the Children’s Hospital with Nadia because she was a nurse and knew that her pillow would be softer, more comfortable, to the stoic neighbor who brought soup and dropped it on our doorstep, along with a tiny note and an angel pin that remains affixed to the shade of her infant car seat that I just can’t part with, I am left in awe. From my sister and family who have listened to every high and low and sifted it out for me with such grace that I swear they walk on water, to the friends who gave us a little jar of glitter fairy dust that still sits on Nadia’s dresser and will surely be sprinkled somewhere on her wedding day, the world has rallied around us and held us together.

Nadia recently made rainbow loom bracelets for practically the entire team and stands at my son’s basketball tournament. She took such delight in each gift, in sneaking up and delivering them, in selecting just the right colors and in seeing the look on their faces when she gave them her gift. I was touched, but honestly more grateful for the brilliant guy who marketed rubber band bracelets and kept her occupied for a day in a gym. However, the next weekend, when I saw, not one, not two, but practically a dozen people—coaches, grandparents, teammates, roll up their sleeves, just a bit, or sneak a little wink, to show her that they had worn it for good luck, I saw her light up and stand taller. And I knew. Right then.

This is the story of Nadia. She hugs bigger. She burns brighter. She loves deeper. And she seems to be the happiest little girl, despite her differences, despite everything. I think she is here to teach us that our well can run over with joy if we just live simply, happily, and with loads of love for the world. She accepts everyone just as they are. On her birthday, I hope the world can see, above everything else, that love and acceptance is indeed all we need.

I still worry about her as she grows up, that her differences might matter more. To others. To her GPA. To herself. To colleges. To peers. But I recently watched a video, 1,000 Miles of Luca, and realized a simple truth. We don’t spend time with people because they are the smartest, the most academic, the most athletic, or the most articulate. We spend time with people because of how they make us feel. I hold fast to that today because I am celebrating my amazing daughter and the ripples of joy she has spread in only nine years. The sky’s the limit, baby. The sky’s the limit.

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Why This One Question on My Child’s Preschool Form Gives Me Anxiety


Well, it is that time of year again: back-to-school time. The shopping, the preparing, the excitement… and the forms. While I’m pretty sure no parent looks forward to filling out forms, there’s one question that always gives me anxiety. When the question is asked on a preschool get-to-know-you form, it looks like this: “Medical information you should know about me…” It sounds like an easy question, right? For most, perhaps so. Not in this situation.

How can I explain my daughter’s medical history on two lines? Her file at Children’s Hospital is well over 400 pages long — and I need to summarize that on two lines? Furthermore, what happens when the teacher finds out she has this extensive history? Will they be intimidated? Will they treat her differently? Will they be afraid to have her in their classroom?

The truth is, her medical history is scary. She had open-heart surgery at 7 days old. She was diagnosed with DiGeorge syndrome (otherwise known as 22q11 deletion or VCFS) around 11 days old. She had a tracheotomy at 2 weeks old and feeding tube soon after. She qualified for in-home nursing. She was hospitalized at 7 months old for a flu-like illness, and watching a non-pediatric doctor try to place an IV in her tiny body was one of the worst things I have ever seen. Just shy of a year, she had trachea reconstructive surgery and decannulation (meaning the trach came out).

But that was not the magical end of everything. She has low calcium levels and, due to a compromised immune system, catches illnesses easier and has a harder time getting over them. She also has low muscle mass and has issues with clumsiness. This last part is not medical — I believe it’s just who she is. She has developmental delays that have led to weekly PT, OT and speech therapy appointments and has qualified for early childhood special education courses. Oh, and did I mention the sensory issues?

Sounds scary, right? But what her medical history doesn’t show is that she is the first one of her siblings to give her parents a hug every morning. She cries easily when hurt and feels bad for others when they are hurt. She tries so hard to learn concepts, and she does get there — it just takes her a little longer. She is a people-pleaser and gets upset when she feels she has failed in this. She will do almost anything for bubbles or a sticker (something her therapists know well). She is so excited to start school at her big brother’s school that she has brought it up at least once a week this whole summer. She loves being a big sister. But will all this be ignored because of her medical history?

Tonight, we will meet her teacher. I will most likely stay late to be sure she can meet her teacher. I will try to tell her all these amazing things about my daughter that cannot possibly fit on a form. I will try to stress the importance of her medical history without letting it overshadow who my daughter is — because she is not her medical history. I will walk out of that room and pray and hope and dream for a good school year for my baby girl… because isn’t that what all parents do?

Follow this journey on Life as a Mom.


To the Doctor Who Performed Open-Heart Surgery on My Baby Son


Dear Doctor,

I didn’t want to meet you. In fact, I was angry on the two-and-a-half hour drive to your office. See, I was told the heart defect of my son, Anderson, would most likely not require open-heart surgery. Then, all of a sudden, it felt like a bomb went off and the explosion sent my husband and me to your office a few days later.

I came prepared. The journalist in me researched articles, stalked heart groups on Facebook; I was armed with a pen and notebook. I was not going to let you cut open my son’s chest just because you were the closest pediatric heart surgeon.

Jillian Benfield the mighty.4-001
Anderson hours after surgery.

I asked you, “Have you ever lost a baby from this heart surgery?” You looked down and said, “Yes.” There was one little girl, one among thousands, who also had Down syndrome, who went home and died in her sleep. Even though the loss was more than a decade ago, I could tell it still pained your heart. That’s when I knew you were the one.

On the day of surgery, you saw I was emotional and gave me a tissue and assured me it would be OK. You were more than confident. This is what you do. Day in and day out, you save our children’s lives.

If my son were born in the ’80s, his life expectancy would have been around 25 years old. Now, his life expectancy is 60. This is in large part because of people like you.

I know you went to four years of undergrad, four years of medical school, multiple internships, residencies and a fellowship. You spent about two decades of your life sacrificing and learning so that you would know how to perform near miracles.

Jillian Benfield the mighty.1-001
Eight weeks after open-heart surgery. Anderson put on four pounds!

I saw you come in both Saturday and Sunday with your khaki pants and your wind-blown hair. I know you were trying to have a piece of normalcy, but that you had to check on all of your patients before you could try to enjoy yourself outside of the hospital’s fifth floor. I know your wife sees very little of you. I know you have dedicated your life to saving others.

For however broken our medical system seems to be, you are the bright spot. You spend the majority of your life surrounded by either the walls of the OR or the CICU (cardiac intensive care unit) because of a calling, a calling to change lives and enhance futures.

When we were kids, we were taught that superheroes come with big muscles and capes. As an adult, I’ve realized they often times come in surgical caps and scrubs.

Thank you for your enormous dedication. Thank you for all of those years you sacrificed perfecting your craft. Thank you for making my son’s broken heart whole. Thank you for making your life about making his better.

Follow this journey on News Anchor to Homemaker.


20-Year-Old Quadriplegic Woman Prepares to Summit Kilimanjaro


Chaeli Mycroft is looking to make history by becoming the first female quadriplegic to summit Mount Kilimanjaro in Tanzania, and she’s inviting the world along with her.

Image courtesy of The Chaeli Campaign

Mycroft, who was diagnosed with cerebral palsy at 11 months old, will begin her adventure on Thursday, August 27, according to CNN. The University of Cape Town student and her team are expected to take seven days to complete the trek, spending five nights climbing the 19,340-foot mountain and two nights on the descent. Mycroft, 20, will be documenting the hike with live video and social media updates on Discover Africa, a website that specializes in safaris and expeditions all over Africa.

To prepare for the climb, Mycroft worked with Carel Verhoef‚ an East African travel expert at Discover Africa. She tested a few local trails in her custom wheelchair and went to a simulated altitude chamber to get a feel for how her body would handle the elevation increase. After a successful overnight trek to Table Mountain in South Africa, Mycroft and her team set the date for climbing Kilimanjaro.

Image courtesy of The Chaeli Campaign

Mycroft will be joined by six teammates (known collectively as the “Chaeli Kili Climbers“), two of whom will be pushing and pulling her.

I’m not stressing about the mountain,” Mycroft told CNN. “I have full confidence in my team and our ability to work together. If anything goes wrong, I know that we can find a solution. We have a very strong-minded group of people. I think you need that in order to be successful.”

Mycroft isn’t just looking to break records. She’s also fundraising for The Chaeli Campaign, a charity that assists children with disabilities throughout South Africa. Mycroft launched the organization when she was just 9 years old, according to CNN and has received a number of honors over the years, including the International Children’s Peace Prize in 2011 and the Medal for Social Activism at the Nobel Laureate Peace Summit in 2012.

Even better than raising awareness for an amazing cause and climbing the tallest peak in Africa? Mycroft will be celebrating her 21st birthday on the second day of the ascent, according to Discover Africa.

To learn more about Mycroft and her amazing journey, check out the The Chaeli Kili Climbers Facebook page and The Chaeli Campaign’s official website


Mom Outraged After GoFundMe Removes Photos of Her Son Deemed 'Graphic'


One mom is on a mission to have her son’s story told after a popular crowdfunding site removed photos of her him.

Oakley, 4, has Prune-Belly syndrome, which is a rare disorder characterized by partial or complete absence of abdominal  muscles, failure of both testes to descend into the scrotum, and/or urinary tract malformations, according to the National Organization for Rare Disorders.

Courtesy of the Team Oakley Facebook page.

Because of the high cost of his medical care, his mother, Sarah Savickas, agreed to let her friend, Amber Maynard, start a GoFundMe page for them. The page had been up for nearly a month when Savickas received an email from GoFundMe telling her they had removed two photos of her son from the page for containing “blood, graphic or inappropriate content.”

The photos were of Oakley after his appendicovesicostomy surgery, a procedure which greatly improved his quality of life, his mother says. She told The Mighty that she shared the images because it’s important to her to share every step of her son’s journey with the world.


This is my son’s journey. This is the reality of what we live with and what he goes through. Who do you think you are to go and tell people what they can or can’t share in their story?” Savickas wrote in an open letter to GoFundMe that she posted on Oakley’s Facebook page. “This is what my son went through. Are you trying to tell me that his disability is too much for your eyes, GoFundMe?”


Outraged, Savickas wrote an email to GoFundMe. who responded by saying the removal of the photos was an accident, apologizing to Savickas and telling her to post whatever photos she wanted on the account. Then, just a few hours later, Savickas received another email from the company about her photos not being “appropriate.”

The Mighty spoke to GoFundMe’s Media Director, Kelsea Little, over email, where she explained that the second email was accidentally sent by a customer service agent who was unaware that action had already been taken on Savickas’s account.

Little said that Savickas is now able to use whatever images she wants on the account, and that GoFundMe is working to improve their system in the future.

“Our sensitive image policy is always evolving based on feedback from the community,” Little told The Mighty in an email.

I am asking the public/followers of Team Oakley to support us in this and share this open letter about GOFUNDME. I want...

Posted by Team Oakley on Thursday, August 20, 2015

This incident comes on the heels of an issue earlier this month where a mother, Christina Hicks, had her GoFundMe page “hidden” (meaning only accessible to those who had the link) because the site deemed images of her premature child too graphic, NBC reported.

Despite GoFundMe’s second apology, Savickas still wants her story to be heard in the hopes that it will prevent other parents in an already stressful situation from having to go through this.

I am a huge advocate for my son and other children who are fighting illnesses, disease, syndromes, cancer, and even un-diagnosed conditions,” Savickas wrote in a post on the Team Oakley Facebook page. “I will not stop, I will not give up. I am fighting for all of us to make sure that our kids voices and journeys are allowed to be told in real life. It is important to show the good, the bad, and the ugly.”


I’m an Adult on the Spectrum, so Please Stop Treating Me Like a Child


So many times I have been treated differently because people have heard the word autism associated with me. Sometimes people even treat me like they would a child — speaking in a soft, slow voice, or poking me over and over again or behaving in some other sort of way they never would with any other adult. Or they seem baffled by the fact that I don’t act like their child. The reason is because, as with most people, I am different than I was as a child and different from a child in general. I am a 27-year-old adult who tries to act like one.

I can understand why people associate children with autism. Most organizations, information, infographics and so many other things associated with autism are geared toward parents of children with autism. This makes it seem like they’re the dominant group or how it must be for everyone on the spectrum. But we are hearing only one part of the story.

Now there are groups that deal with adults, but they can be less prominently known. As of this writing, the Autistic Self-Advocacy Network has about 18,000 likes on its Facebook page, while the Thinking Person’s Guide to Autism has about 151,000 likes on Facebook. These numbers are dwarfed by autism parents’ networks like the largest autism organization, Autism Speaks, which reaches 1.5 million people on Facebook, or another parent-based site, Autism Awareness, which reaches 2.1 million people.

When I checked the Autism Awareness Facebook page, it showed a video of a raccoon lying on a dog, a story of a mom who was heartbroken because no one showed up to her son’s birthday party, an article about a sensory-sensitive theater, selling of jewelry and other items with autism themes, a story about a child prodigy who is proud to be on the spectrum and a group of young men with Asperger’s running around in superhero outfits doing comedy. If this were a person’s only interaction with people with autism, I can see how they get the autistic-person-as-child worldview. But that’s because they’re only seeing part of the picture.

I personally, and a lot of people I know, are high-functioning and live rather normal lives. A lot of people will not disclose being on the spectrum because they don’t want to be associated with some of the things from the paragraph above, along with the rest of the negative stigma about autism. I myself still experience moments when people treat me like a child, talk to me like a child and are surprised by the way I act. I will admit I wasn’t always the way I am. Some of these people have known me for some time or have seen me mature, but their view of me has not. I am very different as I am now, an adult, than I was as a child, a teen or a younger adult. I will be different when I am a middle-aged adult and a senior citizen. This is true for everyone — on the spectrum or not.

I’ll be honest — I grew up delayed. I didn’t walk, talk, read, ride a bike, drive or do most things in life at the same time many of my peers did. But just because I was delayed, it didn’t mean I couldn’t learn or catch up. For example, when I learned to walk, I started to run right away. When I talked, I talked in full sentences from the start. This is true for everyone — just because we can’t do something at first or are bad at it, doesn’t mean we can’t get better.

I did have more trouble dealing with sensory overload and anxiety, but I learned to deal with them the best I could. When you’re a child, you’re learning so many different things and maturing so quickly, it’s sometimes overwhelming to learn about some other things, too, but as you grow, you start to learn how to work with what you have.

Some of what people might have thought was my autism back then was simply me being a child. Children can be a bit self-centered or have trouble with impulse control. This can be harder to manage when you have less control of the world around you, but again, you grow and mature and you learn strategies. When you are a younger person with autism, you might have communication challenges — either with actually saying the words or finding the right words to say. But this can be true for any child. Who hasn’t watched “Kids Say the Darndest Things?” That is basically the whole premise of the show. But as you grow older, you can learn how to express what you mean in more efficient and effective ways.

Jason Harris the mighty.2-003

Finally, I think there is also a misguided assumption that kids with autism and even adults with autism are OK with not having friends or only want friends who are on the spectrum. Sometimes it’s hard to make friends as a child on the spectrum and as an adult. Some of this is because those of us on the spectrum are trying to learn how to read other people, which can be difficult, but can also get easier. Some of it can be because you don’t have the confidence yet.

It’s an understandable thing for people who just want friends on the spectrum. They tell me it is safer; they can feel more comfortable around them and don’t have to explain why they do certain things. I can completely understand this, as I have a bit of a hard time making friends due to a fear that I stink at social skills or that people will make fun of me for some weird things I might do. I have to gain the confidence that I can relate.

You might ask, “Why not just hang out with people other than people on the spectrum?” And the answer is, I do, if they’re someone I can talk to or relate to, but that isn’t always the case. I want to be friends with people who like big ideas but can also talk about anything. This is what I want from any person — on the spectrum, neurotypical or whatever else in between.

We should all have the friends we want, not just the friends people think we deserve or believe are the only people who will be friends with us. We deserve to be treated as we are — adults who just happen to be on the spectrum.

A version of this post originally appeared on Jason’s Connection.


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