A Spinal Cord Injury Can’t Stand In The Way Of A Great Mom

When Debbie Soliz first got injured, she was told motherhood might never happen for her. Now, she dedicates her life to showing other women that anything is possible.

“He learned I couldn’t pick him up,” Debbie Soliz says. “So we fixed it so my son Allan could climb on a chair and climb on my table.” She points to the table attached to her wheelchair, which Allan broke at age 8. “And he would say, ‘mom, this is my place. And I’m not going to stop sitting here until it breaks’.”

Now 64, a social worker in Davis, California for the past 25 years, Debbie is an expert on being a mother with a spinal cord injury, or SCI.

At just 15, she had her accident, dared by her peers to jump off a cliff into the ocean at Corona del Mar in 1969. The fall left her a paraplegic, spiraling her from dark beginnings into a bright future as a mother, advocate, and social worker dedicated to perinatal care and women’s reproductive rights.

Debbie, Allan, and Dani

“I was stunned by my accident and by the disability,” she says. “For 3 years, I was not myself and I decided that I would just stay home and there were no plans for me to finish high school or go to college.” With a push from her mom and the companionship of an SCI rehabilitation group, Debbie became determined to accomplish all the things that she had wanted before the accident: including sex and children.

“We learned about sexuality, not just sex,” she says. “And we learned that we could get pregnant, and I liked knowing that.”

During this time, information available on the risks of childbirth for SCI women were quite extreme. “It all said that you are going to die if you get pregnant, all the information was scary stuff.” But it turned out these risks, put forward as only applying to paraplegics, actually applied to all women. It was a turning point for Debbie.

“I had felt separated from women for the longest time,” she says. “That I wasn’t part of the women’s movement, the feminist movement, that I wasn’t part of that because I was a disabled woman, that I was so different. Then suddenly I included myself in that group. And when I included myself in that group, I felt empowered.”

It changed the course of her professional career. After first obtaining degrees in animal behavior, she switched gears into social work, finding a passion for reproductive health.

Over the years, Debbie has worked with countless women: writing protocols on what to do if a woman comes in with bruises, for example, and figuring out how to maximize the short time a social worker might have with a vulnerable woman to get her the support she needs. One of her greatest advocacy roles has been speaking with doctors and her peers about the ability of SCI women to give birth.

In 1984, she had her first child, and in 1987, she had Dani. Getting pregnant was no easy task, but Debbie and her partner were patient, and she was able to have two natural births.

Debbie and her kids today, at daughter Dani’s wedding.

Debbie reflects on giving birth as an SCI woman. “The most dangerous time is when the baby is crowning. I can’t push, physically I can’t bear down. I can only let the uterus do its work.” Both births went so fast because of this: no pushing meant that birth was like a cannon being shot. “The way [my partner] saw his son being born was through a camera, because in 90 seconds Allan was born.”

And just as Debbie adapted to her children, so did Allan and Dani adapt to her.

For example, because of her accident, Debbie has her hands in splints to help with grip and hand function. While feeding Allan a bottle as an infant, her hand would turn sideways before she could make it all the way to his mouth. He learned that this would happen and would turn his head lean forward so that the food would fall in his mouth. Her partner also made a special crib so that and Debbie could take her children in and out of the crib herself. Daily hacks in combination with intuitive children made all things possible.

Having small children wasn’t an ordinary experience for Debbie, but parenting, says Debbie, transcends disability. “There’s a feeling that [disabled women] cannot parent, that they physically can not do it,’ she says. “But parenting isn’t about physical care. Parenting is about teaching, loving, playing. So many things that I could do, that shape a child far more than diaper changing.”

Chronic Illness

The Marathoning Mom With Bones Of Glass

Why would you run marathons when you have bones that could break at any time? If you're Jennifer Jansonius, you do it for your daughter.

When you’re running a marathon, what keeps you going, mile after mile?

For Jennifer Jansonius, it’s the knowledge that if she doesn’t run now, and give her daughter a memory of her as a strong and active person, she might miss her shot forever.

After repeatedly suffering several broken bones after the birth of her daughter,  Jansonius, 33, was diagnosed with a hypophosphatasia, a rare metabolic disease that softens the bones due to defective mineralization. Doctors cautioned Jansonius that strenuous activity like running could lead to permanently broken bones.

Jansonius knows she may eventually need a wheelchair, but she wants her now 5-year-old to remember her as strong and active. Running and the community of runners she’s met have also helped Jansonius cope with the stress of her diagnosis and an uncertain future.

Earlier this year, she completed the Boston Marathon, in defiance of both her doctors and–at least initially–the Boston Athletic Association, which organizes the 26-mile race.  Folks talked to Jansonius about running against the odds, rethinking her goals and more.

The following excerpts have been edited for clarity and brevity.

Have you always been into running?

Jennifer Jansonius began breaking bones after the birth of her first daughter.

For the most part I’ve always been into running. I ran a lot with my dad as a little kid. I ran all through high school. I was varsity cross country. I kind of stopped running when I got to my twenties. You get lazy, and then you have a kid, and then you try to lose that baby weight, and that’s about the time I got back into running. And unfortunately, that was also just about the time that I started breaking my breaking my bones.

Tell me about your diagnosis. What was your reaction?

I still don’t have a lot of answers unfortunately, because mine is so incredibly rare. It’s basically a rare form of an already rare condition. I probably will never have any answers. I won’t know if I’m going to pass this along to my child or what the incidence rate is because they can’t even tell me if it’s dominant or recessive. I don’t know about treatment or if there will ever be treatment for me. Unfortunately, I’m going to have to take it day by day.

How do you make peace with that uncertainty?

You can either wallow in it or pick up the pieces and move on. Obviously you’re a lot happier and a lot healthier if you keep moving.

You can either wallow in [uncertainty] or pick up the pieces and move on. Obviously you’re a lot happier and a lot healthier if you keep moving.

After applying and getting rejected for the Boston Marathon, the International Para Olympic Committee got involved on your behalf and you got finally accepted to the Marathon in January.  What was your training like?

Well, it was a bit of an experiment. I had broken my femur again in October and as of the MRI at the end of December, that femur was still healing from an old stress fracture. So unfortunately I found out about a month later than I was supposed to be ready for a full marathon. I went on some medicine to heal my fracture and I trained about eight or nine weeks. I took it slow and easy and essentially had to hope for the best. This was once in a lifetime opportunity. I wasn’t sure that my leg was going to hold up.

What happened at the Marathon?

I actually ended up the day before the marathon in the emergency room with an anaphylactic reaction. So in addition to all the other things that could’ve gone wrong that also went wrong. But in the end I survived and made the six hour cut off and I finished. That was what we were hoping for. It was an experiment in all things you probably should not do, but they won’t allow you to defer and they basically said, “hey look we’re probably not going to allow you in again.” I’m going to try to appeal that decision next year, just see what happens, but at the time as far as I knew they were only going to allow me this one opportunity so I had to take it.

The running community has helped Jennifer deal with the stress of her condition.

What did it feel like when you did finish?

I was lucky enough to have my husband be able to guide me in for the last eight miles so that was nice. More than anything, it was just something I was really hoping I could do for my daughter. She doesn’t quite understand it yet. I’m just really hoping that several years from now when she remembers her mom she’ll remember the things that I did.

Do you plan to run more marathons or other races? What’s next for you?

I don’t know. Basically all of the doctors over the years have told me “you know you really shouldn’t run at all let alone marathons.” Marathons have a really, really high risk of me doing damage that I can’t come back from. I’m able to walk marathons pretty safely, it’s the running of the marathons that have kind of a 50/50 for me. If there’s a chance I might to do Boston or do New York, or maybe do some fundraising then I’ll probably only do the ones that are the once in a lifetime opportunities. Eventually my body’s going to stop allowing me to do these. It’s just a matter of when and how.

Is there anything that you’d like readers to know about your story?

I’m really really hoping that maybe just one person realizes that bad things may happen but it’s not necessarily the end of everything.

When I first was diagnosed, I honestly thought my life was over. I cried, I was just a mess, I went online. That’s the first thing everybody does. I couldn’t find a single story, a single person like me that had a skeletal disorder that was still running. So for me that was really really difficult because at 30 they’re talking about needing a wheelchair. It was really just a lot to comprehend.

I’m really really hoping that maybe just one person realizes that bad things may happen but it’s not necessarily the end of everything. You might have to change your plans a little bit. It may not be exactly what you thought it would be. But there is still that opportunity to do the things you always wanted to do or to realize those dreams, and just not to give up on that. It took me a long time to figure out that I could still accomplish all those things I wanted to, just because there was no one like me out there.

Chronic Illness Genetic & Congenital Diseases

MS and Sickle-Cell Can’t Keep This Motorcycle Mom Down

Rona Wiggins was told it was too dangerous for her to get pregnant. But there's more than one road to becoming a mom.

Rona Wiggins’ childhood was filled with limitations: Don’t fly on a plane. Don’t ride roller coasters. Are you sure you want to be a cheerleader? Isn’t that too strenuous?

Then there was the most disheartening limitation: You must never birth a child because it might kill you.

Rona Wiggins with her beloved motorcycle.


At first, Wiggins accepted the limits placed on her by caregivers. As a girl, she didn’t realize there were other people like her, with sickle cell disease: a debilitating blood disorder that contorts red blood cells into a sickle shape. The shape hinders the supply of blood, causing a lot of pain and a crisis that usually has patients hospitalized.

According to the doctors she’s seen through the years, Wiggins, now 43, isn’t supposed to be here. She was given “death dates” at 13 and then 21.

Today, she’s living well with sickle cell disease, whether she’s helping others like her through patient advocacy, or riding her beloved motorcycle. The last time a doctor proclaimed she wouldn’t live long, she defied that prognosis and celebrated with an “I’m still here” party at age 35.

But her journey is certainly filled with twists and turns. Soon after her party, Wiggins was diagnosed with relapsing-remitting multiple sclerosis.

“I was angry with God. Was I not a good steward of sickle cell?”

“I was angry with God. Was I not a good steward of sickle cell?” she remembers asking after the MS diagnosis.

Still, Wiggins has tried to remain resilient. She is determined not to let these conditions stop her from becoming a mother.  The Virginia native who lives in Murrieta, Calif., spends her days preparing to foster, then adopt, a child.

Becoming A Mother With Sickle-Cell

At 18, Wiggins experienced an ectopic pregnancy miscarriage. Later, she held off on having children until she found the right partner.

“As a child, I had dreams to be married by 21 and have a child by 23 and the next child by 25 but that was not my story,” she says.

But for several years, motherhood was tugging at her heart. She considered adopting a child, so she contacted an agency to see if she was qualified as a single, gainfully employed  woman living with sickle cell.  All was good, except for the sickle cell.

Rona staying sassy in the hospital.

“I was told that due to the nature of my disease I would need an extensive care plan in the event of my untimely death or untimely hospitalizations,” she says. “I had family but they were busy taking care of my ailing grandmother and they did not have room for anything else. So, I abandoned my hopes of adopting a child and prayed for a husband.”

Then, at 39, she married Antwoine Wiggins and became an instant mother. He was already the father of six, including one child who was deceased and one who was adopted. When the couple moved to California, they brought his son with them, and a daughter later joined.

Before the two teens graduated from high school, the Wiggins began talking about options to expand their family.


The Wiggins explored surrogacy, but with Rona’s condition, and her husband’s G6PD deficiency (which can cause anemia in certain situations), they’d have to do a lot of “tinkering with the egg and the sperm to get a child without these illnesses.”

The Wiggins family.,

“I even asked the oldest daughter if she would be willing to carry our child but she is having such a hard time with our second grandchild that she said she will not be having anymore,” Wiggins says.

So they considered adopting a newborn from a mother who was giving her child up for adoption. However, they were uneasy about the potential for the mother to change her mind. It was a situation they weren’t sure they could handle.

The next logical option was becoming foster parents with the goal of adopting.

“With that option, we would know for sure that the parental rights had been legally terminated and that the child would be ours,” Wiggins says.

The process has been long and tedious, filled with state clearances, fingerprints, tuberculosis tests, physicals and classes.  In classes, the coupled learned about discipline without hitting, mental health issues, effective communication, transgender and sexual issues in children, water safety, and CPR.

But the end is now in sight. They expect to have a child in their home no later than April.

“I’m looking forward to the heartaches, the anxiety and the sleepless nights,” she says. “But nothing is guaranteed.”

Keeping Faith

Meanwhile, Antwoine was recently deployed.

“With or without my husband, my desire to be a mother and raise a child has been in me and continues to burn in me,” Wiggins says. “I have the gift of helps and I know that raising children can be stressful but when you have a loving husband, supportive parents and God on your side, you can accomplish anything.”

Given her dual diagnosis of sickle-cell and multiple sclerosis, Wiggins notes there may be days where her limbs don’t work right, where it will be hard to make her appointments with doctors and specialists. But to hear her tell it, these are challenges for every parent.

“I keep encouraging myself knowing that there are people in the world who are worse off than me yet they are successful parents…”

“I keep encouraging myself knowing that there are people in the world who are worse off than me yet they are successful parents,” she says. “Tomorrow is not promised to anybody but all we can do is do the best with the skills, knowledge and abilities in which God has bless us with.”

She adds, “In all of my anxiousness, my disappointments, my stress, my range of emotions, my heart continues to long for a child that can join our family and can make memories for a lifetime.  I do not want to be an old lady with this desire still burning in my heart.”

Mental Health

Find Her In The Fog

Living with adult attention deficit disorder is like living in "endless, seeping fog," writes Erin Ollila. In that fog, she perpetually searches for the person she wants to be.

I’m not the homemaker I wanted to be.

I listen, empathetically, to my friends complain about their partners, and the lack of help they receive around the household.

“All I’m asking is that he just takes the trash out. That’s it! Is that too much to ask?”

“I’m so frustrated. We both worked all day, so why am I the person cooking dinner, cleaning up, and doing the laundry, while he gets to sit on the couch and watch TV?”

“I have to ask for his help. I know he’ll help me if I ask him, but why can’t he do these things on his own? No one asks me to do everything around the house.”

I hear them. These hard-working, overtired, selfless ladies. I hear them, and I recognize myself in their words. I hear them, and I wonder what my husband thinks when he looks at me. I hear them, and I vow to be different, to be better.

Every morning, I wake up and think: Today is going to be the day. Today will be the day that the laundry and the dishes are done before my husband gets home. Today, I will sort through the box of loose papers on our desk. Today is the day I will fill the dog’s prescriptions, sign my son’s agenda book before he asks me to, put away my daughter’s too-small clothing instead of just tossing it on top of an overflowing pile in a storage room that’s already bursting at the seams. Today will be the day I leave a love note in my husband’s lunch bag. Today will be the day I clean my son’s room and organize my daughter’s toys. Today will be the day things change—because I want them to, so badly.

But I have ADHD. So today is never that day.

Today will be the day things change—because I want them to, so badly. But I have ADHD. So today is never that day.

It starts innocently enough. I make my children breakfast, bring my son to school, open my computer to start work, and vacillate between that and playing with my toddler all morning long. In reality, I simply move from room to room. Dining room table: computer, numerous open internet browser tabs that I hover between. Living room floor: crayons, plastic kitchen toys, stuffed animals. I float between these rooms, accomplishing almost nothing in either. I make lunch for us. The baby, who is really not a baby anymore even though I can’t stop calling her that, takes a nap.

Ah, the blissful quiet. The moment I can devote to work. I scan my to do list. Before I begin, I realize I need to pay an almost-due bill. Then, I open Facebook—for work, I promise—but fall deep into the rabbit hole of important, semi-important, and utterly unimportant information. I check myself, jump back into my work, and get distracted by a text message.

I realize I never started the laundry, so I go to grab it in the bathroom, but instead I notice I’m wearing a tiger-ears headband and I haven’t even brushed my teeth yet. I brush, saunter back to my computer, work, look at the clock, and realize it’s almost time to pick my son up from school. Though, first, I scoop the crayons off the floor. I put away the toys that are scattered around the kitchen, and cram stuffed animals back into their bins. I change, because I’m likely still in my pajamas, and rush out the door to make it on time for school pick up.

It isn’t until I’m on the way that I realize I didn’t do the laundry. Of course, while driving, I come up with a great idea for work—one that I will almost immediately lose, like all the others.

Erin Ollila has struggled with ADHD for most her life.

If you’re a neurotypical human, you might inherently understand all these situations. Life is distracting, and a house full of children, a job, and activities complicate things. It can be difficult to remember which day of the week is your son’s baseball game, the school concert, or your parent–teacher conferences. But what happens when you ADHD adult attention deficit disorder (ADHD) into the mix? Suddenly, your grocery shopping lists are missing key elements that go unnoticed until dinnertime—which, of course, is already too late. The laundry piles up. So do the dishes. So does the guilt.

I know these scenarios too well. My son wakes up in the morning and goes to his closet, only to realize his school uniform pants are still in the laundry. Now, he will be forced to use the sacred dress-down pass he wanted to save until the end of the school year. My husband returns home from work to a sink piled high with dishes and a dirty high-chair tray. Yesterday, he washed the dishes when he came home, made dinner, and washed the dishes yet again after our meal. Today, the cycle will repeat. I am desperate for the day he returns home to an empty sink and a clean kitchen.

I’ve always owned my ADHD. My faults were my own. The text messages I failed to respond to, the laundry that didn’t get washed for weeks, the school assignments that only got completed last minute were my shortcomings. While I did try to set up organizational systems to keep me focused and on track, I accepted these regular failures as an integral part of my chemical makeup. I was a good friend who wasn’t the best at following through. I was a clean person who lived surrounded by piles of randomness. I was a hard-worker who thrived under the self-enforced stress of deadlines, but failed with the freedom of time.

The problem wasn’t that the ADHD medication didn’t work. The problem was that I didn’t allow it to work to its full potential. So why bother? After a few medicated years, I said goodbye to the moments of clarity, determined to find them on my own.

When you’re living alone with ADHD, you’re only responsible for yourself. There’s no one else to let down.

When you’re living alone with ADHD, you’re only responsible for yourself. There’s no one else to let down. No one else to notice the chaos. When guests come over, it’s easy enough to stuff the laundry in the closet and toss the piles of paper into a storage bin. When you live with others, especially a spouse and children, this changes.

I’m suddenly under a microscope, whether it’s self-imposed or not, and my capabilities and concentration (or lack thereof) can no longer be just a part of my personality. People rely on me. Children have a cacophony of needs. My husband cannot be responsible for the entire household as I wade through the fog of my misgivings.

The thing is, I always wanted to be a stay-at-home mom. I always wanted to work, too. Now that I work for myself from home, I have the best of both worlds. Everything I ever wanted. So, why is it  so difficult?

On occasion, I miss the medication. When I’m staring at a blank screen and my head feels too full and empty at the same time, I long for the sweet feeling of focus. My brain is fog—the dense, deep cloud you cannot see through on the highway—and I cannot concentrate because there is already too much information taking space in there. I can either choose to dig deep, pulling the weeds of dead thoughts so my best ideas can thrive, or I can float through it.

Have you ever driven through a snow squall or endless, seeping fog? You rationally know there is a road to follow, but you also cannot see the path. If you cannot see it, you can’t be sure it’s there. You’ve lost direction. You’re navigating blindly.

This is ADHD.

Have you ever driven through a snow squall or endless, seeping fog? This is ADHD.

The truth is: I can barely remember to take my vitamins every day. I forget to brush my teeth, wear deodorant, all normal every-single-day-I-do-this necessities. Remembering to take the meds—or worse, fill the prescriptions—will take more effort than I have to give right now. Plus, on the good days, those rays of clarity are as sweet and strong as I remember they felt on the medication. My chemical makeup, as sordid and random as it is, will stay untainted for now.

It’s the systems that save me: the routines, the lists, the reminders. My family—their needs—are my medication. My children dictate my a timeline for the day. What gets done, gets done, as long as their needs get met. My toddler is the current anchor in my life that keeps me from drifting off. When everything is centered around her immediate daily needs, I meet them. My son, with his endless extracurricular activities, pushes me from one moment to the next. My husband, without complaint, assumes responsibility to make sure everything gets done.

“You’re a great mom,” he says. “You’re doing the best you can right now.”

The days roll on, and my friends’ words play through my mind. I wonder if my husband thinks those thoughts, too. I wonder what stage of frustration he feels. Does my forgetfulness weigh heavily on him, like the spouses my girlfriends so often complain about? What does he think as he shifts the piles I tell him not to touch so that I can take responsibility for something that never seems to get done? I ask him, for this essay, if he thinks I’m failing.

“You’re a great mom,” he says. “You’re doing the best you can right now.”

I’d like to think he’s right, that I’m doing the best I can, but I’m not sure that’s true. I can do more. I want to do more. I can see the better version of myself peek through the clouds just a short distance away.

I just don’t know how to reach her.

Creative Commons photo by Craig Cloutier.

Mental Health

How I Beat Postpartum Depression

One in seven women experience postpartum depression. So the trick is knowing you're not alone. You just need to find your tribe.

“I cry so much I worry he will remember his childhood filled with tears. I cry because there are so many things I don’t want to forget—the way he pecks like a bird for my breast and sometimes mistakes his knuckle for me, his little knee bent while he feeds … his noises, his smell—oh God, his smell.”

“It’s just that sometimes I am a robot playing his mother. I still don’t know how to be his mother. I am always looking out of the robot’s eyes, never sure completely whether I truly feel this thing or that, or if it’s because I ‘should’ feel it.”

I wrote those words in my journal a few months after giving birth to my oldest son in 2010. The joy of bringing a new child into my family was often clouded over by moments of intense depression and anxiety, which lingered untreated even up to a year and a half later.

Sometimes I would write about “the robot.” On darker days, I wrote about hurting myself, what it would be like to just not live anymore. I was instantly aware of how selfish it sounded for a mother of an infant to think about killing herself. That guilt made the situation even worse—and of course, harder to talk to anyone about.

I was not supposed to feel like this.

I was not supposed to feel like this. My Facebook feed was filled with beautiful photos of softly swaddled, happy infants and mothers (in fact, I had put more than a few of those photos out there myself). Everywhere there were blog posts and even strangers in Target admonishing me to, “make every minute count” because “they grow up so fast.”

Was I supposed to make these minutes count, the minutes when I lay in bed, running a finger over my numb c-section scar and crying myself to sleep? I just wanted those minutes to be over.

As my baby grew older, I would structure my day around his naps, scheduling work that needed to be done in the hourlong scraps of time I thought I could rely on. When he didn’t fit into that schedule, I sank deeper into the hole. I was exhausted. There was never a time I didn’t feel like someone needed something from me, and there didn’t seem to be much left to begin with.

The author and her two sons today.

Complicating matters was the fact that I lived in a small town in Michigan. On the days I felt strong enough to advocate for myself and get help, I dialed number after number of psychologists and psychiatrists. I had the benefit of good insurance through my husband, but I was turned away due to not enough supply of mental health professionals to meet the local demand. One therapist told me, “I’ve got a waiting list for my waiting list.”

I called the local hospital one day and pleaded to be connected to someone who could help me. I was having thoughts of self-harm, I told them, but I wasn’t able to find a therapist who could see me. They asked if I had Medicaid to qualify for mental health services. I did not. They didn’t have any alternatives to the crossed-out list already in front of me, and I hung up, dejected once again. Moments later, my phone rang from my local 911 dispatcher. Was I OK? She had received a call from the hospital. How could she help? I laughed into the phone. “Can you find me a therapist?”

My phone rang from my local 911 dispatcher. Was I OK? I laughed into the phone. “Can you find me a therapist?”

When my son was about 15 months old, I finally got help. I started seeing a therapist once a week. It wasn’t a cure-all solution, and I still battled depression off and on. My therapist made me sign a contract that I’d call 911 or go to the ER if I had more thoughts of self-harm. I spent one January night sitting in the parking lot at the hospital, debating whether I should check myself in or not. Where would they send me? What would happen to our son? I was his primary caregiver in those days.

Slowly the fog lifted. With the help of my therapist, I was able to look at my situation with a bit more clarity and compassion. I needed help, and not just psychological help. I needed help taking care of my child, time for my own work (which had fallen by the wayside) and self care.

I didn’t know it at the time, but I also could have benefitted from a community that could help me navigate this transition into motherhood. I realized how isolated I had become. My family was scattered several hours away. I had few good friends in those days who were parents. I had always been so independent and self-reliant; the benefit of reaching out to a group of people who was going through what I was going through was a foreign concept to me.

The next time, I would change all of that.

In 2014, my husband accepted a new job in Texas, and I discovered that I was pregnant with our second baby. As we drove our loaded-up minivan across the country, I plotted how I would do things differently. And if I was lucky enough to escape postpartum depression this time, I vowed to do something to help other women in my situation.

If I was lucky enough to escape postpartum depression this time, I vowed to do something to help other women in my situation.

The first thing I did was create an online community, a private Facebook group, for other people who had struggled with postpartum anxiety and depression, and therefore could understand what each other were going through. Here we could speak openly and frankly in a nonjudgmental setting. I spread the word among all the parenting groups I knew, and instantly I connected with several people who understood my exact struggle.

That spawned real-life group therapy sessions, where local moms shared their stories with a local therapist, and we all helped each other come up with strategies and coping mechanisms.

I started volunteering for the Pregnancy and Postpartum Health Alliance of Texas, eventually earning a scholarship to study to become a postpartum doula specializing in helping mothers with postpartum depression and anxiety. I had never heard of a postpartum doula before—essentially, they provide the extra hands and hearts of a surrogate family member, coming in to help new mothers after the birth of their babies with everything from practical day-to-day tasks like washing dishes and playing with older siblings to just listening to moms and dads and their challenges.

These experiences opened my eyes to the heartbreaking reality of postpartum mood disorders.

Before when I struggled alone, I kept telling myself “this can’t be the reality for most women,” but unfortunately, in my talks with other mothers since them, I have found that suffering in silence is quite common. The American Psychological Association estimates that one in seven mothers experience postpartum depression.

The intrusive thoughts associated with postpartum anxiety and OCD are actually very common, and with help, can be managed and overcome.

We are conditioned not to talk about these symptoms. I learned that the intrusive thoughts associated with postpartum anxiety and OCD are actually very common, and with help, can be managed and overcome. However, because of headline-grabbing cases of women who harm their children due to postpartum psychosis (a rare but serious postpartum illness), we are frightened into not speaking the words that actually have the power to help us heal.

We have such a long way to go before women suffering from postpartum mood disorders are properly cared for and supported in a comprehensive, meaningful way and feel comfortable speaking their truth without fear, but I hope that essays like this in some way help to further the dialogue.

It’s almost guaranteed I will hear from other mothers after they read these words. Whenever I speak out about postpartum mood disorders (it’s becoming a bit of a soapbox for me), friends message me sharing their own stories that they too have suffered or are currently living in the shadow of postpartum depression or anxiety.

Talk to someone…you’ll be surprised at the number of people who will feel empowered by your act of strength.

For women living in rural communities or areas without access to mental health resources, my best suggestion is to talk to someone–a friend, your partner, your OB or physician. Maybe you can find (or form) a group like I did.

You’ll be surprised at the number of people who will feel empowered by your act of strength, even if you don’t feel very strong. Talking about postpartum mood disorders rather than living in the shadows is the first step toward taking away their power and finding your own once again.

Creative Commons photo by Barbara W.

Genetic & Congenital Diseases

The Mom With A Mission To Help Families With Down Syndrome

Roughly one in every 700 babies born in the United States has Down Syndrome. This mom is determined to help those children reach their full potential.

In 2002, when Nancy Gianni gave birth to her youngest child GiGi, the medical team treated her like life as she knew it was over. “They put me in a private room and kept sending in the clergy,” Gianni says. “‘Is she dying; is there something more you’re not telling me?’ I asked. No one would look me in the eye anymore.”

GiGi was born with two holes in her heart and Down syndrome; both were a surprise. “It wasn’t until I took her home that I really got to understand her and see that she was so much more than this diagnosis,” Gianni says. “When you have a typical kid, they don’t tell you how they might have a learning disability or they might get cancer, but when you have a kid with Down [syndrome], you only hear the negative.”

Gianni, who lives in Barrington, Illinois, left a job in ad sales when her oldest son was born. After GiGi’s birth, Gianni concocted an idea to challenge people’s perceptions of Down syndrome and give families a place to see their child’s full potential.

Nancy Gianni and her daughter, GiGi.

Gianni envisioned a place where children with Down syndrome could get educational and therapeutic programs tailored to their needs. A place where families with Down syndrome children would feel welcomed. Skeptics suggested she focus on her own child, but Gianni persisted. “I could have put all my energy into her but that’s not going change the world’s perception,” she says. “We needed to change perception for all individuals with Down syndrome.”

In fact, Gianni says the idea had been gestating from the moment GiGi was conceived. Although she did not know her child would have Down syndrome, Gianni found herself taking an early stand during pregnancy when other people used the R-word. “I remember being so excited and feeling like he or she was already making me a better person, making me stand up for people,” she says.

She opened the first location of GiGi’s Playhouse Down Syndrome Achievement Centers in Hoffman Estates, Illinois in 2003 with an all-volunteer staff. Setting up shop wasn’t easy but fortunately Gianni found others who believed in her mission.

Initially, explaining her plan for a center for people with Down syndrome seemed to set off alarm bells for landlords and others. Gianni called her insurance agent and he was out of town, so she spoke to someone else. “I want to open this place for people with special needs and have different programs for them,” she told him. Two seconds later, he said, “I’ve got a 16-year old with Down syndrome; will there be something there for him?” He made sure she got the insurance she needed. 

GiGi’s Playhouse offers families around the country a Down syndrome friendly place for activity and support.

Each year, GiGi’s Playhouse offers 50,000 sessions of completely free programs for people of all ages, whether they have a diagnosis or not. For instance, Language, Music N’ Our Peeps (LMNOP) classes use music and dance to teach infants and families basic sign language.

Melissa Ciraulo, a mother of three living in the suburbs of Chicago, took her three-year-old son Peter to this class. “Since attending LMNOP, he’s using more words, learned to sign more and trying to verbalize,” she says. “Whether it makes to someone else, it makes sense to us. He’s started him to understand what is going to be expected of him in preschool.” She’s also taken her three kids to open play and attended some of the seminars for parents.

School-age kids and teens can participate in cooking, club, karate, drama troupe or literacy training, while young adults in GiGi University complete an eight-week program learning confidence, career skills and wellness. They then go on to intern at GiGi’s Playhouse Store, Hugs + Mugs.  

For GiGi Gianni, “the literacy and speech programs are my favorite, but I love the GiGi Fit workouts and hanging out with my friends.” Fitness programs are especially important for people with Down syndrome since they’re often born with low muscle tone (hypotonia). Because of that, GiGi makes sure to stay in shape by taking dance classes, as well as being a member of her school’s cheerleader squad. 

Nancy Gianni says being an ambassador for GiGi’s Playhouse has given her daughter tremendous self-assurance. On a recent trip to a Playhouse opening in Raleigh, North Carolina, Gianni noticed that GiGi “walks through the airport with such confidence. She just gave a speech [that she’d written] in front of a thousand people.”

GiGi Chianni aims to be a leader and role model, not just to kids with Down syndrome, but to everyone.

GiGi Gianni says of her ambassador role: “I want to be a leader and help people and to inspire people to be better.”

Ciraulo believes GiGi’s Playhouse has had a positive impact on her entire family. “To be able to go somewhere and be surrounded with people who’ve gone through the same things as well as a lot of the same joys, it’s heart-warming and a sense of relief,” she says.

GiGi’s Playhouse now has 31 locations across the United States and Mexico, with hundreds more communities asking for their own Playhouse. Gianni hopes to have one in every major metro market by 2021 and plans to offer some online programming for families outside those areas.

“As soon as we opened that [first] one, we had all these inquiries,” Gianni says. To help GiGi’s scale, Gianni added paid employees and had an operating agreement and licensing agreement created for new locations, which operate as their own individual LLC under the same nonprofit. “They’re responsible for their own fundraising, but we give them all the tools that they need,” Gianni says.

GiGi’s Playhouses are entirely donor-supported. “We don’t use any government or state funding,” Gianni explains. “It’s not dependable. It would be devastating to have to pull programs. You can’t take this away from a family once they have it.”

Gianni says this donor-based model has helped make GiGi’s Playhouse sustainable. “I think we can equate our longevity to that from the beginning,” she says. “I’ve always had to be scrappy.”

Unlike the grave predictions of the medical team that delivered GiGi, Gianni and her daughter have thrived in their roles as chief belief officer and ambassador, respectively. “If you look at my life, it looks pretty good,” Gianni says.