Moms with Disabilities: Stacy Cervenka
I’ve never actually met Stacy Cervenka in real life. I started on the California State Rehabilitation Council right when she was leaving; we missed each other by one meeting, I think. Then she moved to the Midwest and I moved back to Hawaii.
I love following her on social media though: she’s smart, interesting. She does cool things (like take up ice skating!), and she’s a mom who thinks outside the box.
I am glad I know her and I think you will be glad to meet her, too.
What is your disability?
I’m blind due to optic nerve hypoplasia. I have no sight in my left eye and a small amount in my right eye.
Did you grow up with your disability or was it more recently acquired?
I grew up legally blind, but lost more of the sight in my right eye in high school and college.
Were you scared to become a mom because of your disability?
I wasn’t concerned about being a mom because of blindness per se, but I was very anxious about becoming a mom because of the discrimination that exists against parents with disabilities by medical professionals, social services professionals, and the family court system.
In 2010, just as my husband Greg (who is totally blind) and I were getting engaged, a story broke about a blind couple in Missouri who’d had their newborn baby removed from their custody when the mother had difficulty breastfeeding.
The mother noticed that the baby didn’t seem to be breathing while she was breastfeeding and the lactation consultant noticed that she was inadvertently covering his nose with her breast. Instead of simply educating her on the proper way to hold the baby and instructing her what to do if this ever happened again, she wrote on the baby’s chart that the parents were both blind and the child had no custody.
Keep in mind that it was the baby’s mother, not the lactation consultant, that had noticed that the baby wasn’t breathing in the first place.
In any case, a social worker was called and she stated that she couldn’t, in good conscience, release a newborn baby to blind parents. So, the baby was taken from the parents custody and they were allowed only minimal supervised visitation with the baby.
They eventually got custody of their baby back when the baby was two months old, but by that time, they had missed so much of their child’s infancy.
Think about how traumatizing it would be to lie awake every night, wondering where your baby was and spending every day thinking of nothing else, this part of you who had spent nine months inside of your body. That’s torture.
Even though the parents did eventually regain custody of their baby, this case had a chilling effect among young blind adults.
I heard my friends begin to talk about having a lawyer on call when they went into labor. People began considering home birth, not because they had ever actually wanted to give birth at home, but because they were too afraid to give birth in the hospital.
So, although I had never worried that the logistical aspects of my blindness would impact me being a parent, I became very anxious and concerned about whether society would even let Greg and I become parents.
We were a young, educated, professional couple and we were afraid that discriminatory people who didn’t know us would somehow prevent us from having kids, something that both of us had always known we wanted to do.
Luckily, as I began witnessing many of my blind friends have babies and start families, my anxiety subsided quite a bit.
But, when I went into the hospital to give birth to both my children, I packed several copies of Parenting Without Sight, a booklet produced by the National Federation of the Blind for social service and legal professionals, in my hospital bag just in case.
By that time, there were laws on the books in quite a few states protecting the rights of parents with disabilities, but doctors and social workers don’t always keep abreast of the changing laws.
We knew that, if anyone tried to take our kids away from us, the law would be on our side and we would eventually get them back, but that might take a week or two before a hearing was arranged and the law could prevail.
I’m very happy that laws are being passed in more and more states that proactively assert that people with disabilities have the right to parent, but discrimination by healthcare, social services, and family court professionals is still a source of anxiety for many disabled parents.
Does your child have a disability? If so, is it the same as yours?
One of our children, Leo, who is five, has a serious metabolic condition called MCADD.
It’s very rare and has no connection to either my husband or my blindness. Basically, his body can’t use fat, so it’s really easy for his body to go into starvation mode. If he doesn’t eat every few hours, his body can literally start trying to metabolize his muscles and his organs. Going too long without eating can lead to brain damage, coma, or even death.
Fortunately, we’re able to manage the condition with a healthy diet and making sure that Leo eats and drinks enough.
He is an active, physically fit, lean, and healthy kid who is learning every day how to manage his own condition and advocate for what he needs.
Just today, it made me very happy to hear from his summer camp teacher that she had been concerned because she hadn’t gotten to meet with us before summer camp started to discuss the medical needs we listed in his application, but that Leo filled her in about everything and is great about telling her whenever he needs to eat or drink.
I often hear of kids with fatty oxidation disorders who are embarrassed that they can’t always eat sweets with their friends or that they have to snack more often than the other kids in their class.
I think that having blind parents who are confident and at ease with themselves has helped Leo be very confident and unself-conscious about his own condition.
No joke, I have heard him say, “Some people are blind and some people are sighted. Some people are girls and some people are boys. Some people are dads and some people are medium and some people have tattoos and some people have MCADD and some people are doodie pants and some people are sleepyheads and some people are slowpokes!”
A very succinct commentary on human diversity, indeed.
How does your child’s lack of disability or difference in disability from your own affect your parenting? Or does it at all?
Until about 2003, many kids with Leo’s condition didn’t survive into adulthood. This is because, up until that time, MCADD wasn’t one of the conditions that were included in newborn screening.
So parents wouldn’t know that their child had MCADD, they would let their child sleep through the night, and when they would come to get their child in the morning, the baby was in a coma or had died.
There are some estimates that up to 20 percent of SIDS cases before 2003 were actually undiagnosed MCADD. So, unlike with blindness, it can be hard to find adults who have MCADD.
I have often volunteered with organizations such as the National Organization of Parents of Blind Children and the focus is often preparing your blind child for adulthood and the workforce. Particularly with NOPBC, there is an emphasis on parents of blind children learning from the experiences of successful blind adults.
With MCADD, that can be harder, as there are fewer adults who know that they have this condition. There are many adults with mild cases, but many don’t know they have it.
Hopefully, this generation of people with MCADD, who were diagnosed at birth, will take a leading role in the MCADD community and begin to set the direction of MCADD advocacy.
Right now, MCADD advocacy is led primarily by parents and there is a lot of ableism that has dissuaded Greg and me from getting involved in that community.
In one instance, members of the fatty oxidation disorders Facebook group were discussing the fact that some kids with metabolic conditions experience visual impairments and a parent was discussing how her child was having difficulty reading.
My husband and I (who both work in the blindness rehabilitation field) suggested that the child might benefit from learning both print and Braille and the response was shocking. Members of the group spouted just about every single inaccurate myth about Braille that there is (It’s too hard to learn! Kids with partial vision can’t learn it! It will only scare the kid!).
Greg and I both have advanced degrees and certifications in the blindness rehabilitation field, as well as years of personal and professional experience, but it was all completely discounted in favor of negative myths and misconceptions.
Because of this, Greg and I are no longer active in this community.
When Leo is older, if he would like to meet other people with MCADD, we will certainly encourage him to do so, but it is not a welcoming space for us.
Another thing that really struck me as being very different from the organizations for parents of blind children is that, when I signed up for the fatty oxidation disorders Facebook group, there was a question asking if you needed to speak to a grief counselor, because so many parents learn that their baby had MCADD after the baby has died.
With so many hospitals pressuring moms to exclusively breastfeed, some babies with MCADD don’t get enough milk in their first few days of life and pass away before the newborn screening results come back to let the parents know that their child has MCADD and needs to eat more frequently than other babies.
This is one of the reasons why I am a big supporter of organizations like the Fed Is Best Foundation that encourage moms to ensure that their babies are eating enough in the first few days of life, before many women’s milk has come in.
I hear so many stories of babies that pass away at 2 or 3 days old and then, the next day, the results of the newborn screening come back and the parents learn that their child had MCADD and would still be alive if only they had been given a little bit of formula.
What would you say are the most challenging things about being a mom with a disability?
Almost every blind parent will tell you that the most difficult logistical aspect is not being able to drive.
Many blind parents live in areas without great public transportation, so they rely on ride hailing services like Uber and Lyft. This means that, wherever they go, they need to lug their kid’s car seats and booster seats with them.
When you get to your destination, instead of leaving your car seat in the car, you have to literally carry it around the mall or carry it around the zoo. We’ve learned to ask the people at the ticket counter or the front desk if they’ll hold our car seat for us and we have never been told no.
Even in cities with robust public transportation, it is still often impossible to drop kids off at childcare as soon as it opens and then take the bus or the subway to make it to work on time. Many parents simply can’t afford to take Uber and Lyft on a daily basis.
Paratransit services should fill this gap, but paratransit programs in many cities don’t allow riders to make a stop on the way to a final destination, so parents can’t drop kids off at childcare and then continue on to work. Paratransit laws need to be modernized to take into account the active, busy lives people with disabilities lead.
Greg and I are fortunate in that taking Uber and Lyft several times a day is possible for us, but in the blind community, where unemployment and poverty are commonplace, situations like ours are the exception, not the rule.
Improving access to affordable and accessible transportation is probably my number one professional and advocacy goal in life.
What would you say your greatest skills as a mom are?
I’m awesome at teaching my kids. Since my son was two, I have worked daily with him on reading, math, social studies, and science concepts.
It’s our special time together and it makes me happy to see how much he loves learning, how inquisitive he is, and the joy he takes in mastering new skills.
I love to learn and I’m glad he does too.
I’m also really good at ensuring that my kids have lots of experiences and opportunities and that we leverage those opportunities to expand their understanding of people and the world around them.
My husband and I make great sacrifices of time, money, and energy to ensure that the kids are involved in many activities, that they experience new places, and that we take advantage of every opportunity to create learning moments.
Finally, I think that one of my best skills as a mom is my ability to take good care of myself.
In order to make the sacrifices I do for my kids, I need to be healthy, well-rested, and feel like the sacrifices I’m making are worthwhile.
I need to be aware of what my values and priorities are and let go of the things that other people may say are important, but that aren’t authentically important to me. I value my sleep, my mental health, and my own need for accomplishment and growth.
This doesn’t conflict with my being a good mom; it’s a key ingredient in me being a good mom.
My kids benefit from having a happy, engaged mother. This isn’t to say that there is never sadness, drudgery, boredom, or frustration, but in order to get through the hard parts of parenting, you have to reward and replenish yourself with things that bring you joy.
What do you think your child(ren) would say your greatest skills are?
About a year and a half ago, I was having a rough day where I felt like I just couldn’t do anything right and my kids deserved so much better than me. In a moment of self-loathing and self-pity, I asked Leo, “Am I a good mom?”
“Yes,” he replied.
“Why am I a good mom?”
“Because you love me when I’m good and you love me when I’m bad,” he said.
Just as important to me, he also recently told me I’m an awesome ice skater.
How about weaknesses? What do you think the hardest parts of being a mom are for you?
I feel like most things about being a mom are hard! The level of self-sacrifice entailed in being a parent was difficult for me to adjust to. As with many people, my greatest strengths can also be my greatest weaknesses.
I’m a perfectionist who has high expectations of myself and the people around me. In many respects, this has served both me and my kids well. Striving for excellence is a good thing.
However, I know I can be too hard on my kids. My expectations for their behavior can be unrealistic. I get frustrated at them too easily. I lose my temper at them too often. I have a hard time really enjoying or relating to my kids until they’re about two-years-old and able to really start benefitting from going to new places and being taught new things.
The list could go on and on, but the important thing is that my kids know I love them and, when I cross the line, I apologize to them and I commit to doing better.
Beyond the aspects of parenthood that most mothers find challenging, I also spent four very dark years dealing with hyperemesis graviderum, prenatal depression, postpartum depression, several miscarriages, including a late one which resulted in diagnosed PTSD and another one while I was on vacation in Mexico.
There are so many aspects of being a parent that no one talks about.
I want to be a part of the movement to bring topics like baby loss, hyperemesis, and postpartum depression into mainstream conversations about parenting. These are not niche issues that should be talked about quietly behind closed doors; they are as much a part of parenting as changing diapers and buying a car seat. So many women suffer horribly and their trauma goes unrecognized and unaddressed. As a society, I think we need to become more comfortable with each other’s suffering and less demanding that we go through the hardest parts of life alone.
What do you think your kids would say are your weakest areas?!
Oh shit. Good thing they’re asleep, so I can’t ask them!
What do you wish people would really get about being a mom with a disability?
Our society fetishizes the perfect, self-sacrificing mother who can do all things and be all things. There’s this new age concept in some circles that our bodies are supposed to be all our children need; that our intuition is supposed to be foolproof; and that we are supposed to have endless energy and emotional stamina to meet our children’s every need.
Mothers with disabilities demonstrate that these harmful ideas about motherhood are complete garbage. It is possible to be an amazing mother whose body can’t provide everything their child may need. It is possible to be a rock star mother who doesn’t have endless energy and stamina. It is possible to be a competent mother that needs to look to outside resources for transportation, personal care assistance, cooking, or cleaning.
And it is possible to be a loving, devoted mother who doesn’t always feel emotionally connected to her kids all of the time. These are themes that are not only important for mothers with disabilities to recognize, but for all moms to accept and acknowledge.
Moms with disabilities are living examples that many of the qualities we ascribe to good mothers are completely unnecessary.
What makes a good mom is not adherence to some endless list of tasks and duties. The best moms, with and without disabilities, know themselves well, capitalize on their strengths, make decisions based on their own values and circumstances, and ensure that their kids feel loved unconditionally.
Memoirs and how-to from moms with disabilities:
Podcast and PDF
The podcast episode is below and the downloadable PDF is linked here and in button below (just click it: it will take you to Gumroad, where it will say “name a fair price” or something like that – feel free to put 0 in the box (and you can feel free to pay for it too – really, it’s all good and I won’t be hurt!). After you enter a number, it will take you to the next screen where you enter your email address for the download. I do not store your email address and I won’t bug you after – this is NOT a bait-and-switch thing where I say “free download” just to get your email address then harass you. NOPE! The system will then automatically send you the PDF or MP3 to download via your email).