The Untold Story of Miscarriage

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Mark Zuckerberg and his wife, Priscilla, made an exciting announcement that they’re expecting a child. However, it’s also big news because they broke the silence surrounding miscarriage. As Mark Zuckerberg publicly shared their journey of trying to conceive and experiencing multiple miscarriages, something that is generally taboo and not spoken about, they have been able to reach others in similar situations and open a very large platform from which to speak.

Miscarriage is not something you probably worry about if you’ve never experienced such a loss. It’s strange to me how something so common can be spoken so little of.

10 to 25 percent of pregnancies will end in miscarriage, according to the American Pregnancy Association.

Perhaps if more people spoke out about how common pregnancy loss is, I wouldn’t have been so blindsided and I wouldn’t have felt so completely isolated in my pain. I think many times in life we can be naive to think these bad things won’t happen to us. Then they do, and you’re left trying to pick up the pieces of what feels like your shattered life while hiding your pain from the world around you.

So here is my truth.

I have had multiple miscarriages. Prior to losing these babies, I struggled for two years to conceive. My first pregnancy was carefree and was a “breeze,” so to speak. Every pregnancy after that was complex and painful because they ended in a way that I never expected. I have been pregnant four times and I have one living child. That is my truth.

In May of 2013, I had my first miscarriage between six and seven weeks. It was a huge blow after struggling so long to conceive. I was in complete shock that this could happen to us. I remember sitting in the doctor’s office crying uncontrollably as she told me that this happens more often than I can image and it was “just a fluke.” She assured me that she was completely positive I could go on to have a healthy, normal pregnancy. Perhaps this is true for most women who experience miscarriage, but not for me. I was sent down the street to the hospital for my RhoGam shot and that was it. Just like that, my pregnancy had ended. Just as quickly as it had begun, my baby’s life had ended.

With my doctor’s wisdom and confidence at hand, we quickly decided to try again. By autumn, we had found out we were expecting again. I had an early ultrasound because of my previous loss. Everything looked great so far; the baby appeared healthy, and we were well on our way to our “happy ending.”

At 11 weeks, our baby’s heart stopped beating. But this miscarriage was different from the first. My body didn’t know our baby had died. The ultrasound revealed that our baby most likely died from “severe chromosomal abnormalities.” The doctor said to me, “Even if your baby was still alive, this wouldn’t be good, and there is no way he or she could live outside the womb.”

I was too afraid to even look at the monitor to see what he was talking about. They recommended a D&C, but I wanted this process to be as natural as possible. I wanted to be in my home so I could mourn the loss of this baby, too. I was given one week to miscarry naturally, but my body still had trouble figuring it out. One week of waiting and knowing I was carrying my dead baby in my womb. The pain I felt was like none I had felt before. I was seeded with deep guilt that I had somehow caused this.

Every single morning that week, I would wake up early to watch the sunrise on my back porch. Every morning I would sit and weep as I tried to figure out why this was happening to my husband and me. What did we do to deserve this? What did we do wrong to cause this? What could we have done differently? Questions that I didn’t have answers for. Painful and agonizing questions that ate away at my very core. This pain I felt in my heart was none I had felt before. I was grieving two babies. Not one, but two. I was angry that my body had betrayed me, I was angry that my body wasn’t smart enough to know that my baby had died.

A week went by and I was scheduled for a D&C. My husband drove me to the hospital and I was absolutely petrified. I had never been put under before. I had a wonderful new doctor  who was going to perform the procedure, and he came in to talk to us and try to put us at ease. As they wheeled me back to the operating room (OR), the nurse told my husband to kiss me goodbye “because you never know.” Those words ring so true and speak ever so loudly to me now.

Under the bright lights of the OR, tears rolled uncontrollably down my face. I was lying in the OR so they could suction my dead baby out of my womb. That is my truth. It’s my harsh reality and there is no way to sugarcoat it.

My doctor held my hand tightly and asked me distracting questions, questions that deemed positive responses. I knew he was trying to settle my nerves. He held my hand and said “everything will be all right.” Little did I know that he would be holding my hand like this again less than a year later when I would lose my son.

The next thing I knew, I was waking up in recovery and all I could do was cry uncontrollably. By the afternoon, I was home. I was heartbroken. I was forever changed.

My husband and I felt completely isolated in our grief because no one talks about miscarriage. The world thinks of this as a “lost pregnancy,” but it’s so much more than that. This is not a story of a lost pregnancy; it is the story of two babies who died in their mother’s womb. It is a story of futures lost and faces we will never know because we never got to hold these babies in our arms.

I believe miscarriage isn’t just something that happens. It isn’t some “fluke.” I believe every miscarriage is a baby gone way too soon. Someone’s much wanted and prayed for baby, and what’s left behind is a constant wonder of who they would have been or what life would have been like if they lived.

I never had the chance to truly know them, but I loved them. I still love them. I always will love them. They are forever my babies. The ones I will never truly know.

Something Mark Zuckerberg said about others he knew who experienced miscarriage was, “nearly all had healthy children after all.” Perhaps that is true, that most people go on to have a healthy pregnancy with the outcome of a healthy child. But not all of us do. Some of us go on to have unhealthy pregnancies that result in the loss of a child. Some of us go on to have more and more miscarriages. Some of us continue to struggle with infertility — and some of us will never have a biological child of our own.

So for those of you who haven’t had or won’t get that “happy ending,” you are not alone. Not everyone who struggles with pregnancy and infant loss goes on to have a healthy child. While I believe wholeheartedly that holding onto hope is important, I also know it is important to acknowledge those that have the harsh reality of not being able to have what they want most — a healthy, normal pregnancy.

Because that is our truth.

Follow this journey on Luminous Light Studio.

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How This University’s Program for Students With Autism Stands Out From the Rest

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Austin Peay State University (APSU) is launching a pilot program aimed at improving the college experience for students on the autism spectrum.

This fall, APSU students who have autism will be invited to enroll in Full Spectrum Learning, the university’s pilot program to support students with autism in all aspects of college life. The program will include one-on-one tutoring, peer mentoring and support from students and faculty on Full Spectrum Learning staff, according to the APSU website.

Full Spectrum Learning is modeled after a similar successful program offered at the University of Tennessee, Chattanooga. The program, known as MoSAIC, is based on research about autism and input from experts. Like Full Spectrum Learning, it centers on academic and life coaching, peer and faculty mentoring and mandatory supervised study sessions, according to the program’s website.

One key element that sets Full Spectrum Learning apart from programs like MoSAIC is that it’s actually being designed by students with autism. Full Spectrum Learning will be heavily structured around feedback from students with autism rather than solely on research and autism experts.

“Earlier this year, we put out a call for people to join us in a focus group because we wanted to see what Austin Peay could do to better support students with autism,” Dr. Gina Grogan, an Associate Professor at the university who works in special education, said, according to the APSU website. “We received input from so many different people, including professors, students with and without autism, APSU staff and even community members as we tried to see what the university needed.”

Programs like Full Spectrum Learning are an important step toward ensuring everyone has the opportunity to receive an education, regardless of ability. Colleges like APSU could be a viable choice for young adults with autism and their families who may not have considered college to be an option.

“Many [students with autism] look like everyone else, but they just need some extra help,” Grogan said, according to the APSU website. “And that’s why special education exists — so that everyone can get the help they need to have a fair opportunity to succeed.”

Learn more about APSU’s Full Spectrum Learning program here.

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This Awesome Dad Turned His Son’s Head-Shaping Helmets Into ‘Star Wars’ Art

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Baby Jack was born with craniosynostosis, meaning the joints connecting the bones in his skull fused prematurely. To make room for his brain to grow, Jack underwent corrective surgery to repair his bones, according to an entry Jack’s dad posted on Reddit. After the surgery, he had to wear a head-shaping helmet to keep the bones in place.

Jack’s dad, who we can safely assume is a “Star Wars” fan, decided to spice up his son’s medical equipment. In the year following Jack’s surgery, Jack’s dad turned his son’s head-shaping helmets into “Star Wars”-themed masterpieces. Take a look:

 

Jack recently celebrated his first birthday, and with that comes an end to the helmets.

Today is the last day of helmets,” a friend of Jack’s dad posted on Reddit along with photos of the helmets. “Happy birthday, Jack!”

Since photographs of the helmets were posted to Reddit on August 11, they’ve made the rounds all over the Internet. The post also garnered hundreds of comments from Reddit users applauding the father’s artistic abilities and from parents whose children have gone through experiences similar to Jack’s. Some parents even shared how they decorated their kids’ head-shaping helmets.

“My second son was a helmet boy. He had a few bumps to even out and had to wear one about nine months. SO GLAD to get that off! We never decorated ours, but I love this idea!” one user wrote.

We put butterfly and flower stickers and her name on our daughter’s helmet,” another added.

This isn’t the first time creatively-designed head-shaping helmets have made the news. In April 2014, The Mighty reported on Paula Strawn, a woman who started her own business painting imaginative designs on head-shaping helmets like the one Jack wore. Strawn calls her business Lazardo Art, and her work still regularly pops up on Reddit and other social media platforms.

View the original Reddit post here.

h/t Fashionably Geek

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Lawsuit Claims Amtrak Discriminated Against a Man With Epilepsy

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The U.S. Equal Employment Opportunity Commission (EEOC) has filed a lawsuit against Amtrak that claims the company discriminated against a potential employee with epilepsy, according to The Associated Press.

Latest estimates say 4.8 million people in the United States have had an epilepsy diagnosis, according to the Center for Disease Control and Prevention. While epilepsy can certainly impact day-to-day life, people with epilepsy can hold jobs and have successful careers. It’s often discrimination, not the diagnosis, that gets in the way of people with epilepsy finding employment, according to the Epilepsy Foundation.

Amtrak was allegedly on track to hire Shawn Moe as a journeyman machinist, but withdrew the job offer in 2013 after discovering Moe has epilepsy, according to The Hill. Moe had worked in a similar position with a locomotive company in the past. The EEOC says refusing to hire someone because of a disability doesn’t comply with the Americans Disability Act, according to The Associated Press.

Update: Amtrak sent the following statement to The Mighty.

We do not comment on pending litigation. However, Amtrak takes very seriously its obligations under the Americans with Disabilities Act and does not discriminate against employees or applicants based on disability.

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Are We Too Sensitive as Special Needs Parents?

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I wonder if I’m too sensitive to people’s remarks, reactions and responses to my son, Caleb. When you’re a parent of a child with special needs, especially a parent of a cute kid with spiky hair in a blue wheelchair, people notice and say things. They stare. Sometimes, often times, they say the absolutely wrong thing. But do they mean to? Are they intentionally trying to be rude? Let’s discuss.

I’m going to share one recent example:

We were at a birthday party at a skating rink. Caleb was free to take his wheelchair on the rink and go as fast as he wanted, do wheelies, spins, etc. People stared; that was nothing new. But one man really seemed to get a kick out of Caleb. He asked Caleb to show off by doing some wheelies. He even called his daughter over to see Caleb performing his tricks. He asked questions like, “How old were you when you started using a wheelchair?” Afterwards, the man looked at my husband, Glenn, and said, “He’s an inspiration to me.” On the way home, Glenn and I started talking about it. My first reaction was to be annoyed. Caleb isn’t a circus act; he doesn’t need to perform tricks for you! And the “he’s an inspiration to me” comment. He’s 10, he’s a kid, he’s not here to be your inspiration.

I could feel myself getting all fired up about this stranger at the skating rink. Then I took a breath. The truth is that the man was really interested in Caleb. He talked to him. He smiled at him. The man had 100 percent good intentions, I have no doubt. And Caleb loves doing wheelies and looks for any opportunity to show off. Caleb loved every second of it. And Caleb is an inspiration to a lot of people. He inspires me.

I’m beginning to wonder if I’ve been too sensitive about these things over the years. Maybe we’ve all been too sensitive. For fun, I did an informal survey on Facebook to see what comments or questions bother other special needs parents. I’m going to share the main issues and then share why I think I (or we) have been too sensitive about each one. I’m also going to share some of the comments I received.

1. “What’s wrong with him/her?”

I know I’ve heard this from so many people over the years. Obviously it sounds like the person asking this question is saying there’s something wrong with our kid, and we take offense to that. I agree it’s a poor choice of words. But a poor choice of words doesn’t mean ill intent.

Here is what I think happens. The person asks, “What’s wrong with him/her?” but what they really mean to say is: “I’m curious why your child is in a wheelchair (or has a different special need). I don’t really know how to ask about your child. I’m nervous and I’m curious. I don’t mean to say the wrong thing… but I don’t know how to ask.” Sometimes, often times, people blurt out the first thing that comes to mind.

2. “Ahhh, bless his/her heart,” “Poor thing” or “I’m so sorry.”

Yep, I’ve heard these many times as well. I don’t want anyone to feel sorry for Caleb. But the truth is that people do feel sorry for him. And honestly I know people feel sorry for me as his mom. I know they do. Before I was on this journey, before I had Caleb, I could totally hear myself saying any of these phrases to someone. Maybe they don’t mean it to sound like pity. Maybe they are trying to be sympathetic but it comes out wrong. Again, people often blurt out the first thing that comes to their minds.

3. “As long as the baby is healthy.”

I’ve heard “as long as the baby is healthy” a hundred times from pregnant women over the years. I think this one bothers me because I hear them saying Caleb isn’t healthy and therefore they wouldn’t want Caleb. But the truth is every pregnant woman on the planet wants a healthy baby. And I think women say “as long as its healthy” because they’re scared. They are wishing and hoping that nothing is wrong and that everything goes perfectly.

4. Not using people first language.

We want our kids to be seen as a person, not a diagnosis. Caleb has spina bifida, he isn’t the spina bifida kid. Fair enough.

5. “I don’t know how you do it.”

Honestly, I think “I don’t know how you do it” anytime I see a mom with more than two kids. And I think this about some of my fellow spina bifida moms that have kids with higher medical needs than Caleb. I’m overwhelmed by all they have on their plate and wonder how they do it. But the truth is that I could do it and would do it if I had to.

I’ve heard all of these and then some over the past seven-plus years. I’ve had my feelings hurt more times than I can count. I’ve wanted to smack people for staring and for saying inconsiderate things. But I’m realizing that the vast majority of people mean no harm. I think I have been too sensitive, too quick to assume everyone who stares is being ugly or everyone who gives me the head tilt along with “I’m sorry” is expressing pity. Maybe, just maybe, most people are nice. They are curious. They want to ask questions but they might not ask the way we want them to. And that’s OK.

I fear we’ve made it too hard for people to say the right thing. I think most people want to say the right thing, but they just don’t know what it is so they say the first thing that comes to mind and often it’s the wrong thing to say.

I guess my point in this ridiculously long post is that I’ve been too sensitive. Maybe we all have. So the challenge to myself (and to you as well) is to filter the reactions, whether it’s a comment or a stare, with the assumption the person means well. Assume they have good intentions. Use it as an opportunity to educate. We know our kids are awesome, so let everyone else know it too. Are there some people who are just plain mean and will say awful things on purpose? Yes. But I do believe those folks are the minority and not worth our time anyway.

The more things we add to the “Don’t say this!” list, the less we make ourselves available. We have made it hard for people to know what to say because we keep adding to the list of things not to say.

I’ll get down from my soapbox now.

Follow this journey on Beyond Measure.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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 Share Your Story page for more about our submission guidelines.

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This Redditor Called Out a Minor League Baseball Team’s Epilepsy Awareness Night

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On Tuesday, Reddit user Thugzz_Bunny posted a screenshot in the site’s “Funny” subreddit of a tweet advertising a minor league baseball team’s epilepsy awareness night.

My hometown minor league team must not know what epilepsy is,” the user wrote, with this photo attached:

The tweet was for the Chattanooga Lookouts‘ first annual “Strike Out Epilepsy” awareness night, which featured a postgame fireworks show on August 7. More than 4,000 people attended the event in Chattanooga, Tennessee, according to the Epilepsy Foundation Southeast Tennessee. Players also wore purple, an epilepsy awareness color, for the game.

Some Reddit users found the postgame activity ironic because for someone with photosensitive epilepsy, flashing lights or contrasting light and dark patterns can trigger seizures, according to the Epilepsy Society. If viewed too closely, fireworks can be dangerous for someone with photosensitive epilepsy. It’s important to note that contrary to popular belief, not everyone with epilepsy is affected by flashing lights or fireworks. Of the 65 million people who have epilepsy, about 3 percent have photosensitive epilepsy, according to the Epilepsy Foundation.

This Reddit user is not alone in pointing out the potential threat of flashing lights to people with photosensitive epilepsy, though. Recently, both Twitter and Virgin Media came under fire from an epilepsy charity group for posting flashing videos that could potentially trigger seizures for people with photosensitive epilepsy.

h/t Reddit

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