young girl with elsa from frozen at disneyland

We were tired. It was a long day.

We had decided to take our daughters for a surprise afternoon trip down to Disneyland. They love that place more than anything any of us has ever loved in our lives. Our visits to Disneyland are usually magical. We vowed to never take preschoolers, yet somehow we’ve been there four times in the last year.

This trip was different. The drive was an unusually brutal two-hour journey that got us there in the late afternoon. It was also our first trip to Disneyland with our oldest daughter in a wheelchair. She was born with a condition called arthrogryposis, and she has to wear braces in order to walk. She enjoys walking, but she’s been recovering from a major surgery and hasn’t been allowed to walk much over the last three months.

This was also our first trip to Disneyland for our youngest daughter’s prosthetic leg. She was born with a condition called amniotic banding syndrome which has left her without a usable right foot. Thanks to surgery in December, she’s now running around with her new “robot leg,” as it’s called in our household.

At first, there was no magic happening on this trip. Our arrival at Disneyland began by trying the monorail for the first time. Let’s just say that our oldest daughter let the whole monorail know there was no part of the journey she enjoyed. I got pushed over and over by an older woman with an obvious space issue. My wife kept pulling the partition rope out of my daughter’s mouth. We separated after the parade so my wife and youngest could run to meet Tinkerbell (a new favorite). Sadly, Tink was done for the day. Later, as they dashed off the train, my daughter’s robot leg fell off, surely scaring the bejeezus out of the lady who couldn’t help but point at it, not knowing what to do. Meanwhile, my oldest and I weren’t really feeling the Tiki Room.

Everyone was exhausted by nighttime. Well, mostly Mom and Dad.

We ended the night in my oldest daughter’s favorite area of the park. It’s the lobby of the building that houses the Sorcerer’s Workshop, Animation Academy and Anna and Elsa’s (from the movie “Frozen”) Royal Welcome. The lobby is beautiful and open and has giant monitors on every wall that play classic Disney music while showing film bits and concept art from the films. Because standing in one place is difficult for her, my daughter loves leaning against a wall and shaking her rear end to the music. This lobby is a must see on every visit to California Adventure.

My wife and oldest daughter arrived before me. I was stuck in Cars Land trying to calm our youngest, who was having a tantrum about Lightning McQueen. When I arrived, my wife said some of the employees in the lobby asked her if my oldest wanted to meet Anna and Elsa. My wife said no because our oldest usually doesn’t express interest in live characters. Of course, our youngest is in love with anything “Let it Go” oriented (as she calls anything having to do with that movie), but we hadn’t arrived yet.

Another employee asked if my oldest had a favorite character. My wife pointed at her Sully shirt from “Monsters Inc,” and he returned with a drawing of Mike and Sully for her. It was such a nice gesture. One friendly, energetic employee started pretending to be a monster and ran around with my youngest.

Soon, I realized we were the only guests left in the lobby. A manager approached me and said, “We didn’t want your daughters to leave without having a magic moment. There’s someone who’d like to meet them.” The manager then brought out Anna and Elsa.

My youngest melted as if she were a teenager at a Beatles/Backstreet Boys concert combined. She literally hid her head in my wife’s lap because she didn’t know what to do with herself. I’ve never seen her so happy. Anna convinced her to take her hand and come dance with her. She hesitated at first, but soon she fell under Anna’s spell and began giggling and dancing. A few minutes after that, she became her typical self once again and was bossing around Anna, telling her where to go and when to dance.

While the two of them danced, Elsa walked over to have a conversation with our oldest. We explained she wouldn’t reply back, but Elsa continued to speak to our daughter just like we do. She may not reply, but that doesn’t mean she is not worthy of our words and attention. It can be a challenge just to get my oldest’s attention, especially when the giant monitors are playing the lantern scene from “Tangled” (one of her favorites). Anna and Elsa were both amazing and kept asking my oldest questions to see if they could get her to participate, but she just wanted to stay at the wall dancing to the music.

young girl with elsa from frozen at disneyland

The princesses made a breakthrough when they decided to all dance together. Elsa twirled her beautiful skirt, and my oldest lit up in a way you rarely see. Magic was truly in the air.

For 10 minutes that day, a day that did not start off well, my family had one of the best moments of our lives. We’d had a lot of tough times so far in 2015 — four months ago, both those little girls were in casts recovering from major surgeries. The Disneyland employees had no idea what we had recently been through (although I’m sure the braces and prosthesis gave them a hint).

I watched my family in that moment and reflected on how far we’ve come. Just 18 months ago, my youngest was in an orphanage halfway across the globe sharing a crib and not knowing what a family truly was. After two big surgeries, she has the mobility to match her unstoppable energy. My oldest has begun to find her own ways to communicate with the world and has gained so much mobility. One of the managers came up to me and told me again how much everyone wanted to do this for my daughters. I looked to my wife, who never stopped smiling in that lobby, and said, “You know we’ll never top this, right?” She said, “I know. We don’t have to.”

young girl with disneyland characters

young girl hugging disneyland character

Soon, Anna and Elsa had to go to feed Sven the reindeer. We thanked everyone a million times and headed out of the park for the day. We couldn’t stop laughing and smiling. We had just received a one-of-a-kind experience. What started out as day I kind of regretted ended up as a day we will never forget. We are so grateful to those employees for making my daughters feel so special and giving us such a magic moment, and we are thankful that Disney allows their employees the chance to do this. They all looked like they were having a blast watch our youngest run wild as well. Thank you to the young woman who asked for my camera and took a ton of pictures for us. Disney earned a lot of love when we shared our story with our friends and family on Facebook.

I hope all of you get to experience such magic in your lives.

A longer version of this post originally appeared on Medium.

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I met you in the hospital tearoom once. Quietly sat with your partner, a small, wan face amid the shrieks of small children scuttling across the carpet. But they weren’t yours. Five months after he took his first breath, you were still waiting for him to come home.

I think until I spoke to you, I’d been unconsciously searching for proof that my son, Etienne, wasn’t so sick by comparing him to the other babies in intensive care. It’s a common coping mechanism, isn’t it? That supposed comfort that there’s always someone worse off. But I’d only ever seen mild alarm and then a realization on the other parent’s face that maybe their child wasn’t doing so bad after all — relative to mine.

But here it was; my consolation in your words. Evidence that the spectrum was much, much wider. Testimony that in some way, my son had shifted up in the order of the world. But instead of relief, it only added another dimension to my emotions — sympathy, pity, and deep sadness for you, who quietly ate her lunch and waited for the days to tick over.

That I didn’t find solace in your tragedy is I hope unsurprising. Did anyone ever feel gratitude that you were the poor bugger deemed to be worse off? Of course, in a world of 7 billion people, the irony of that twisted logic is there’s only one person, right at the bottom of the heap, who’s allowed to be worried, or depressed, or desperate, and I’m sure it wasn’t you. My stress was real, your stress was real, and the other mothers worrying over what I then dismissed as trivial concerns — their stress was real, too.

I didn’t know it at the time, but in the few words we exchanged, you helped me discover my own ways to find perspective. Ways that are internally-driven and don’t rely on comparisons to others. You helped me understand that I was not the first person to experience what I was going through, or the last. Your tender relationship with your partner made me remember that even if things went to sh*t, or I fell down, loving hands would pick me up.

Your quiet, but courageous demeanor revealed to me that acceptance was not the same thing as giving up. And then later you showed me, when a mother’s greatest fear became your reality, that you could become stronger, more resilient, more loving, a tighter family unit even after you’d been to hell and back.

And so I want to thank you, brave mama, for teaching me a profound lesson in perspective. One that had nothing to do with you being worse off than me, and everything to do with strength, and courage, and resilience, and acceptance and love.

carmen gould the mighty

This post originally appeared on 558 Grams.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. 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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I recently saw an exchange on Facebook where a preemie mom was posting facts about prematurity in support of Prematurity Awareness Month. This particular post was around the cost of healthcare for premature children and then at the end, she posted how much money her own daughter’s medical costs have been so far. Someone responded, “Money is nothing, be happy she’s alive.”

I have to give the original poster credit. She nicely replied that she is, of course, happy her daughter is alive, but she also felt it was important to bring awareness to the magnitude of the problem that prematurity is for all of us. The response back was something like, “I was just trying to point out the positive. :)” Maybe it was the (seemingly) passive aggressive use of the smiley face, but that comment made my blood boil.

I do want to address the interpretation of that exchange, because I think many of us preemie families have the perception that the rest of the world just wants us to “get over it.” Once the baby is out of the hospital, and everything is “just fine,” the family and the world is supposed to move on and be “normal” again.

This vent/response is for the moms and dads who are hurt every time someone makes them feel that way:

No, I’m not over “it” and here’s why: “IT” is not over! My days revolve around “it.” Between tube feedings and oral feedings, I work with my son on feeding for four to five hours a day. When I’m not working on feeding, I’m scheduling appointments… pulmonary, nephrology, genetics, ophthalmology, audiology, physical therapy, occupational therapy, neonatology, allergist, pediatrician and soon, we’ll be adding in speech therapy.

prematurity preemie the mighty

Every cold and every sniffle sends me into anxiety. I instantly start thinking about what plans I am going to have to cancel and what is going to be impacted if we go back into the hospital. And by hospital, I often mean the Pediatric Intensive Care Unit.

19 months later and I still worry if he is going to be able to breathe on his own when he’s sick. 19 months later and I’m still lugging around oxygen tanks and monitors and tripping over cords because he needs breathing support.

Yes, he is alive and I am so thankful for that. However, I’m not sure which parts of “medically fragile” and “failure to thrive” fall into the “just fine” category. The fact is, my son, Owen, is better than he was and, in many ways, exceeding expectations, but there is a long way to go to get to “just fine.”

And then there is the most hated word of all. “Normal.” I’m not 100 percent sure what “normal” means, but I do know Owen’s course isn’t it. He’s not had a typical course and so far, his outcomes are not that of a typical child his age. He is different and it’s my job to prepare him to navigate these differences.

So far, I really think most people understand the Owen piece. However, what onlookers have a harder time understanding is why the rest of us aren’t our “normal” selves anymore. Let me just put it out there really, really simply. I will NEVER be the same person I was before Owen was born. 95 percent of the ways that I have changed are for the better. I’m a more balanced, empathetic, appreciative and kind person.

prematurity preemie the mighty

The other 5 percent are the memories of fear, helplessness and devastation of spending 181 days in a place where babies — very real babies, not just babies I’ve read about in the newspaper, friends’ babies and nearly my baby — die.

You see, in my old, “normal” world, babies didn’t die. In my new world, I think about those who were lost every day. I’m no longer naive to the true pain that is in the world. I’ve felt it and the scars still ache. I’m prepared for them to always ache.

So yes, I have changed and I am moving forward from where I was, but I will not forget. I won’t forget for myself, or my family, because with the pain, came so many wonderful things. I also won’t forget because there are new families going through it today and more families will go through it tomorrow.

When it seems like I’m dwelling on the negative, please keep in mind that it’s not about being negative and not being able to move forward. Prematurity awareness is about reality. It’s the reality for 12 percent of births. Sharing knowledge is not being negative. It’s about wanting to do something — anything — to help others never have to feel it.

Ahh, that felt good to get off my chest. What do you have to get off your chest today?

prematurity preemie the mighty

This post originally appeared on Ain’t No Roller Coaster.

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On November 5, 2013, one little embryo was transferred via IVF to Heather Bramham. It was a success, and Asha was born. Abby and Alex were the proudest siblings a little girl could have.

But on November 5, 2014, a year to the day she was placed in her mother’s womb, Asha Bramham grew her angel wings while in her parents’ arms at Royal Children’s Hospital in Brisbane. She was 20 weeks old.

This is a story of biliary atresia, and the impact on one family. Biliary atresia is congenital (present before birth) and affects one out of every 15,000 to 20,000 infants across the world every year. It’s a life-threatening condition in infants, where the bile ducts inside or outside of the liver become blocked, trapping bile in the liver.

As well as biliary atresia, Asha had other contributing factors to her health issues. An additional 21st chromosome attached to one in five of her cells (Mosaic Trisomy 21), partial situs inversus (some organs not on the sides they typically present on), and a congenital heart condition.

Liver disease has a devastating affect on a child and the family, and early intervention is crucial. Some symptoms are pale stools, jaundice and enlarged liver. There is no cure for biliary atresia, but there is an operation called the Kasai procedure. For optimal outcomes (an 80 percent partial or complete success rate), the Kasai procedure needs to take place in the first three months of the baby’s life; a liver transplant is also an option. Asha’s liver issues were identified late, and the Kasai procedure was performed at 100 days old. In just 100 days, Asha already had fibrosis of the liver.

The Bramhams’ last day together as a family outside of hospital was September 23, the week before her Kasai procedure.

This hospitalization would be Asha’s last.

Rob says, “We knew we had a special little girl on board and we wanted a special name to suit her. We chose Asha Haylyn. Asha means ‘wish, hope and life’ and Haylyn means ‘unique.’ It suited her to a tee. We just didn’t know exactly how unique she was at that time.”

The weeks wore on, as the Bramhams juggled the responsibilities of working and two children at home. Life did not stop moving, even with a baby critically ill in hospital. While the Kasai procedure she had initially had surgery for was successful, she had picked up hospital infections, which put her on life support. One day in November, three weeks into life support and six weeks after she arrived in the ICU unit of The Royal Childrens Hospital, they had a meeting with their medical team.

Heather says, “We were told that we may have to make a decision to let her go in a few days, as treatment wasn’t working. That evening, Rob and I went down the road to get dinner. We came back to find that she had rapidly declined since we left, really struggling to breathe and gasping. Her carbon dioxide levels were back up to 200. Her body was in shutdown mode due to the septicemia.

“We made the heartbreaking decision to intervene and cease further medical treatment.  For the first time in three weeks, we were able to cuddle her briefly, prior to the doctors removing her life support. She passed away peacefully in our arms. Our little girl was too unique — even for the doctors.”

More recently Heather wrote:

“It’s been an emotional, exhausting and extremely long 20 weeks since we said our goodbyes to this beautiful little girl of ours when she was a mere 20 weeks old.

“In Asha’s last few weeks, her hair had started to thicken up. I often wonder how it would be now, how thick it would be, how long it would be, if it would still be straight or if it would have a curl to it like big sister Abby’s did. In Asha’s last few weeks, her eyes had started to change colour but we never really saw them as she was on life support for those last 3 weeks. We only noticed when the nurses checked her. I often wonder if they would still be the greeny colour they were at the end, or if she’d have big dark brown eyes like Abby and Alex do.

“I often wonder what her true smile would look like, we weren’t lucky enough to see one.

“I often wonder what her laugh would sound like, if she’d be rolling or sitting up now, how much she’d weigh, what her little face would look like. My heart constantly aches for her.

“My baby girl.”

Asha’s parents have made her story public to help support other families. They fundraise for Liver Kids Australia to help raise awareness and resources. You can make a donation to Liver Kids Australia in Asha’s memory here.

Asha’s father, Rob, has said:

“Please, everybody share this article. We want people to be aware of the symptoms for biliary atresia. We want other parents to look out for this hideous disease.

“It is an awful feeling to lose your own baby. I don’t want others to endure this heartache.

“I will never get to cuddle my little girl. I don’t want another parent to be robbed of that privilege.

“Please share.”

You can view the warning signs for Biliary atresia here.

This post originally appeared on Parker Myles.

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In her post “6 Secrets Special Needs Moms Know but Won’t Tell You,” Suzanne Perryman, mom to a daughter with special needs, shares some of the less talked-about aspects of special needs parenting. She writes with honesty and personal insight about the worries, struggles and profound love you only understand if you’ve been there, too.

We thought a lot of you might have secrets of your own, so we asked our readers on Facebook to share one secret about parenting a child with special needs. Here is what we learned.

1. “Your child will teach you more than you will ever teach them.” — Melissa Noelle Brown Oliveras

your child will teach you more than you will ever teach them

2. “You have no idea how much potential you both have to exceed your expectations.” — Becky Hirsh Carroll

3. “Your child with special needs is a child first.” — Erica Conway-Wahle

4.You are not weak when you get angry and upset.” — Amy Sherian

5. “You know your kid best. Don’t be concerned with what others say. Trust your gut.” — Nancy Walchak-Body

6. “It’s lonely. But when you meet someone who gets it, it’s transforming.” — Melody Statham Cameron

It's lonely. But when you meet someone who gets it, it's transforming.

7.There is consistency in routines.” — Evelyn Wolke

8. “Don’t let anyone ever tell you that you are not supposed to grieve. Grieve for as long as it takes. Day by day, week by week and then month by month, the days get better.” — Kelly Anne Kuziw Lautrup

9. “You can say ‘no’ to doctors.” — Alison Baxter

10.It’s a lot harder than it looks. It infiltrates every crevice of your life and affects every minute of every hour of every day. It’s right there when you wake up in the morning and doesn’t stop challenging you until bedtime (and doesn’t stop even then).” — Hilah Swidler Marca

11. “Grieving the losses is not incompatible with celebrating the triumphs.” — Tracey Johnson Buzzeo

Grieving the losses is not incompatible with celebrating the triumphs.

12. I’ve found that optimism is exhausting and realism is a source of comfort.” — Ashley Mobley

13.You have to also take care of yourself.” — Amy Streater Bazerghi

14.Pencil it in on the calendar, never pen. Be flexible.” — Kodi Wilson

15. “It’s about progress, not perfection.” — Melissa Cote

16. “My kid takes longer to ‘grow up.’ Secretly, that is sort of awesome.” — Rebecca Smith Masterson

my kid takes longer to grow up. secretly that is sort of awesome

17. “It won’t help to compare your child to others.” — Amy Shuster Allnutt

18. “If your child knows that you truly believe in him or her, he or she will surpass all limitations.” — Tala Rifai

19. “You’ll secretly mourn the childhood you thought your child would have.” — Shelly Loy

20. “You don’t ask, you just do.” — Deb Tedesco

21. “Parenting for special needs and ‘typical’ kids is like a tightrope walk without a net. The only difference is that special needs parents know exactly how close the ground is. That perspective helps us appreciate everything so much more.” — Amy Kenny

Parenting for special needs and 'typical' kids is like a tightrope walk without a net. The only difference is that special needs parents know exactly how close the ground is. That perspective helps us appreciate everything so much more.

22. “You will become an army for your child.” — Stacey Weber

23.It’s OK to let your child set the pace.” — Sherry Milner

24. “You and your child have nothing to be ashamed of.” — Heather Lee

25.You don’t always have to be the cheerleader. It’s OK to say, ‘This sucks sometimes and it’s hard!’” — Dawn Camp Adams

26. “We’ve had some hard times, so I don’t say this lightly — my daughter’s special needs have given us more than they have taken away.” — Julie Preston Bean

We've had some hard times, so I don't say this lightly — my daughter's special needs have given us more than they have taken away.

27. “There will be periods in your life when it feels like you take more than you give, but there will be other times when you are in a position to help.” — Seriously Not Boring

28. “You’ll need a sense of humor… Fast!” — Amy Anop Eversole

29. “Parents who have walked the same path are the people who will march alongside you and hold you up in this journey.” — Erica Oliver Heibel

30. “It’s an honor.” — Kathy Jordan

it's an honor

31. “You are dealing with a living situation far beyond what an average person deals with. There are services that can help give you a break. Never be ashamed to seek professional help.” — Stacey Rushing

32.I cry. All the time. Joy, frustration, exhaustion, successes, good days, bad days — I cry for all of them.” — Lauren Swick Jordan

33. “Some things may never get better, but your ability to deal with that problem will improve.” — Wayne Kirk

Some things may never get better, but your ability to deal with that problem will improve

34. “You don’t have to be a perfect parent. Just love your child, that’s plenty perfect enough.” — Annemarie Gibbs

35. “You’re now in a secret world. You’ll see things you never imagined: ignorance, rudeness and discrimination. But you’ll also witness so many everyday miracles, and you’ll know it. You won’t think a milestone is just a milestone, you’ll know it’s a miracle and be present in that moment. You’ll treasure things most wouldn’t think twice about. You’ll become an advocate, an educator, a specialist and a therapist, but most of all, you’ll be a mom to the most wonderful child.” — Geraldine Renton

You're now in a secret world. You'll see things you never imagined: ignorance, rudeness and discrimination. But you’ll also witness so many everyday miracles, and you'll know it. You won't think a milestone is just a milestone, you'll know it's a miracle and be present in that moment. You'll treasure things most wouldn't think twice about. You'll become an advocate, an educator, a specialist and a therapist, but most of all, you'll be a mom to the most wonderful child.

*Some responses have been edited and shortened.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Thanks!

35 Secrets of Being a Special Needs Parent
35 Secrets of Being a Special Needs Parent

I can’t count how many times each week someone tells me I am “inspirational.”  I never know how to respond to such a compliment.

I suppose I should say “thank you,” but often I am left too dumbfounded to respond. The encounter goes something like this — I’m headed toward the bathroom on my floor at work. I press the automatic door-open button.  The motor on the door stalls. Nothing happens.

Still (obviously) needing to use the bathroom, I push my back and behind into the door to slowly guide it open. Another woman headed in my direction sees me struggling and offers to help. I decline her offer, because I really can open the door myself, and I would probably fall over if she took it from me since the whole weight of my backside is now pressed firmly against it.

“Thank you, but I’ve got it, ” I say.

“You’re so inspirational, ” she says with a smile.

There is an awkward silence as I ponder what she has just said. Am I inspirational because I can:

A) Respond to her offer of help?

B) Open a door without assistance?

C) Go to the restroom?

Even though I’m unsure just what I’ve done to inspire her, I’m glad she seems inspired… and also, that I finally made it into the door. I avoid answering her by looking down as I hurry into the restroom stall.

Later in the same day, I get into a cab. I am always particularly inspirational to the cabbies in our nation’s capital. Sometimes they are enthralled just by my existence.

Cabbie: “Where do you work?”

Me: “I work for the DC government.”

Cabbie: “Oh, so you work in there in the cafeteria?” (points toward the food court in my building).

Me: “No. I’m a lawyer.”

Cabbie: “So you answer phones for the lawyers?”

Me: “I answer my own phone. I am a lawyer.”

Cabbie: “Really, so who cooks and cleans your house for you while you’re at work?”

Me (bewildered): “No one. I cook and clean when I get home.”

Cabbie (with mounting, considerable shock and awe): “But your parents must help you, right?”

Me: “Well, I have plenty of friends and neighbors who help me with things sometimes, but I do not need my parents’ help.”

Cabbie: “So…. you really can cook?”

Me: “I hope so. I love food too much to starve to death.”

Cabbie: “And clean the floors?”

Me: “Yep.”

Cabbie: “And get yourself ready for work?”

Me (rolling eyes at this point) “Yep.”

Cabbie: “Wow!  That is amazing.”

Really, Cabbie? Amazing?

I’m not so sure.

You know what I think is amazing?

A double rainbow. The Navy Seals who found Bin Laden. The guy who walked a tightrope across Niagara Falls.

Those things and people are amazing. Me coming home to make a tuna sandwich?


A baked potato?


How about a Mexican casserole?

Well… it might have a little something on the double rainbow, but I’m pretty certain it falls just a little short of true inspiration.

I am just like anyone else in this town — trying to make a living, help others daily, and lead a happy, productive life. I put on my pants the same way you do every morning.

It just might take me 3.7 seconds longer. Do those 3.7 seconds make me inspirational No, no more so than my decision not to give up on myself and just leave the house without pants.

My day-to-day life is not lived to inspire, but to aspire. I start each day with a set of goals and I make it my business to accomplish them before the day is through.

Don’t we all?

Same game. Same aim. Different attack.


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