A Blessing and a Curse, No. 3: Mothering with an Invisible Disability

A Blessing and A Curse | Parenting with a Disability | The Real Nani


Welcome Back to A Blessing and A curse. I took a not-so-brief hiatus but I’m excited to bring you more stories of mothering with a Disability.  In this 3rd installment of A Blessing and a Curse, I welcome Olivia DeMoray.  Olivia shares the particular challenge of having an invisible disability, the result of being injured in the line of duty.


Who Am I?

My name is Olivia DeMoray. I’m a rarity in San Diego – a native, but I’ve lived all over thanks to my time in the US Army. I have one daughter who just turned 3 and a pretty dynamic situation at home. My daughter’s father and I have been separated since the end of 2015, him living on his own (but in our neighborhood) and me living with my parents. We split our time 50/50 as much as possible with the kiddo and at this point have essentially got it down to a science. In my “free time” (and I say that lightly) I enjoy photography, working with my hands and watching too much Netflix.
In January 2012, I was injured while training with the United States Army at Fort Jackson, South Carolina. Because of the fast pace of training, I did not receive proper medical care and was pushed along the line – like so many others. Upon return to San Diego, I received a second opinion, where an MRI revealed a torn labrum in my right hip. The doctor recommended surgery immediately to repair the injury. The outpatient surgery was performed October 2012. After surgery, I attended physical therapy regularly, but continued to experience pain over the course of the next 2 years. Further MRI and X-ray imaging evaluated by doctors and specialists did not show any significant changes to my body’s structure and I was dismissed as having phantom pain. Physical therapists insisted that the pain and symptoms would improve with time and therapy, but they did not. After years of pain in my hip, I began to experience numbness in my right leg and back spasms at the end of 2015. After months of referrals I was finally able to meet with an orthopedic specialist who told me she assumed I had at least one herniation on my spinal cord. I received an MRI and one week later her suspicions were confirmed: herniations of L3-4, L4-5 and L5-S1 as well as 2 synovial cysts. An MRI of my hip also revealed that the labrum had torn again.

But How Does This Impact Me As A Mother?

Going through all of this has been frustrating, to say the least. When I was pregnant with my daughter, the weight of the pregnancy on my hip and nerves and back was unbearable. There was no such thing as exercise because there were days that I could not feel either of my legs. The pain was excruciating, and the only thing that I could do to withstand it was get in the swimming pool and become weightless. In addition to the pain, there was the complication of birth: I was forced to have a c-section. My daughter was transverse-breach, meaning that she was laying sideways in my womb, with her bottom down and hands and feet up by her face. She never did turn, and my doctors didn’t want to risk natural birth in case the pressure on my hip were to cause further injury. A lot of people say I’m lucky to have had no choice, but I feel like it was taken from me because of my disability. So to begin with, before I even became a mother I was affected.
Recovering from a c-section is not an easy feat, but it’s usually one that is done with support and for the most part, success. When you mix major abdominal surgery with someone who already has a disability, the outcome is bleak. I laid in bed for what felt like months. The furthest I could go most days was into the car for a short trip or halfway around the block. I never had the ability to recharge and feel like myself after the surgery. I always felt like I was 3 steps behind and I hid it, because I was fearful of what people would think. Fearful they would see my inability to care for her and for myself and shame me. Couple this with extreme postpartum depression (which I have since overcome, thankfully) and you have a recipe for an incredibly difficult task as a mother: loving yourself and loving your child, despite everything. Some days it hurts to admit that I didn’t truly know what loving my daughter was until she was almost 8 or 9 months old because I was in such a fog, but it is the truth.
Imagine this: you’re dreaming of a nice hot shower. You can almost feel the water on your skin. Your child is napping peacefully in their crib or pack and play – somewhere safe and you know that you have the time to sneak away. But you don’t, and it’s not out of guilt. It’s not out of fear that something could happen to them. It’s because the last time you showered without someone else home, you fell and hit your head. You’re not sure how it happened. One second you were standing there and the next you were on the floor of the tub, sobbing. You couldn’t feel your right leg and there were spasms of pain rolling across your back. Now imagine the fear of this, with a child. I worried that if I were ever alone with her, there may be a day where I would fall and wouldn’t get up and she would be left to fend for herself.

And That’s Not Even The Hardest Part

There are 2 main aspects about any disability that are very difficult. The first is physical – Being present, but not being active. Now I have a 3 year old that moves lightning fast. She wants to run and jump and roll and pounce and roughhouse, just like any other child. She wants to be pushed on the swings. She wants to be lifted onto the counter while I brush her hair, to see in the mirror. She wants me to pull her into bed with me to snuggle when she can’t sleep. These are all things that any other parent would have no trouble doing, but I cannot. And it’s not for lack of trying – trust me, I’ve huffed and I’ve puffed and I’ve thrown out my back on multiple occasions. But it isn’t worth it for those 45 seconds of whatever we are doing to be laid up in bed for 3 days. It was almost easier when she didn’t understand and was blissfully unaware. She would just continue on playing with something else or distract herself. Now, she acknowledges the issue: “Mommy, your back hurts,” “Mommy, it’s okay, I can do it,” “Mommy, I’m sad you’re hurt.” Just like that, I’m not the only one this impacts anymore.
So the biggest difficulty mentioned above has been physical, being that I have major limitations. And the more minor but still just as prevalent difficulty is the emotional side of it – not being able to show my daughter all of the wonderful things that we can do with our bodies because mine is broken. She is old enough now to comprehend what it means when I tell her that I can’t right now, or maybe in a little bit. For most parents this might mean they were busy and for me, it’s because I know that if I get down on the ground with her there are days I probably won’t get back up. She studies the pain in my face and it translates to hers as sadness. I used to hide it from her, but now I wonder if that’s even worth it. I don’t want her to think that she causes me any discomfort but I also don’t want her to grow up thinking that I don’t love her and don’t have time for her. As much as I need to keep it from her, I need her to understand that I do my best. And all that I ask is that she does the same. I don’t want her to see me struggle and fail and not continue trying, because that’s no lesson to teach your children. But they should watch you struggle because that is how you teach them perseverance and strength. That it is okay to fail so long as you continue approaching it from different angles.
The final aspect that isn’t necessarily from a mother’s standpoint (well, sort of) is social. There are so many people who will never understand what it is like to feel the way that I do. Not to say I would wish this on anyone, rather that I wish there were more grace and understanding in accepting those who have disabilities, even if they are not completely visible. We have to do all of the same things that everyone else does and often times, they’re not modified to assist us in any way. I’ve been uninvited from playgroups and pushed out of friend circles because I’ve been deemed so many different things including hurtful words such as unreliable and cynical. And that’s unfair to me but it’s especially unfair to my daughter, who didn’t ask to have a parent with a disability. I don’t want to be your hero or your inspiration, I just want you to know that people are out there with invisible illnesses and disabilities. It’s real and often times you don’t know even half the story.

Is There Anything Good That Comes From This?

Yes. There absolutely is good. As much negativity as there is in living with life-altering disabilities, there is just as much (if not more) positivity. Because any other person who has a normal day might not think twice about it but me? It’s like a day at Disneyland. If I can go through my day with no spasms, no numbness, no tingling, no loss of feeling, no migraines or pain or discomfort – sometimes I think I’m dreaming. And it doesn’t happen very often but when it does, it’s amazing. We have to cherish the little moments of happiness and remember to hold onto them when there are clouds overhead. I have my immediate family who supports me. I have the disability support assistance program at the community college I attend. I have the understanding and support of (most of) my doctors and everyone who has been a part of it for the last 5 years for the most part is working together to try and make it easier. Including my kiddo, who is helpful as often as she can be. She loves to load the washing machine, put away her toys and tell me “I can do it by myself”. And it isn’t just because she is a toddler, but because when she does these things I verbally acknowledge how appreciative I am of her and what she does.
Instilling pride and responsibility in children from a young age is not always an easy thing to do. I can imagine that any parent may have trouble slowing down to explain something to their child, but most of the time mine is the one waiting on me instead of the other way around. This means that she has learned wonderful patience and for being 3, that’s a challenge in and of itself. She knows to take a deep breath when she is over-excited, or will remove herself from the situation and say “I’m not ready”. I’ve taught her from day one that this is okay because she has the RIGHT to know when she is and isn’t ready for something, be it emotional or physical. I don’t think we give our kids enough credit sometimes in their ability to understand the world around them but I am blessed with a little girl who is kind and loving and sees past my disability and straight into my heart. And she does this with all children and adults, no matter their struggle. She just wants to help everyone around her and make them feel included. And there’s nothing better than seeing her bring that light to this world.
I’ve learned so much over the years from having a disability but the biggest thing is something a previous employer once said to me: know your worth. Despite all of the hurdles, despite the physical and emotional ups and downs, despite the uncertainty I know this much is true – my daughter will grow up knowing the value of her life and know that no matter what, there are no limitations to what she can do. No matter what anyone tells her.
Thank you for sharing, Olivia!
Follow Olivia on Instagram: https://www.instagram.com/mamademoray/

A Blessing and A Curse, No. 1: Mothering and Deafness

{Editor’s Note: A couple of years ago, I was offered the opportunity to write a piece on mothering with a disability for a major publication, but I froze and couldn’t write it. For a long time, I struggled to understand why I couldn’t write about myself as a deaf parent and I’ve settled on this explanation: I’m too close to it. My children are young, I’m a young mother still and I’m terrible at introspection. It takes me a long time to work my around to an understanding of myself. I often arrive at this understanding by talking to others, by reading the work of others and staring off into space while stuck in rush hour traffic on the way to nursery school drop-off. So, I’ve embarked on a mission to interview mothers with disabilities. Today, I offer the first in a series, by my Clarke School classmate and  friend, Candace. She is deaf like I am, and I found myself nodding emphatically and saying, “yes, yes, that’s it!!” while reading her answers to my questions while also considering things that had never occurred to me before. I hope you enjoy it. And if you or anyone you know would be willing to be interviewed, please let me know in the comments.}
Please share a little bit about yourself– where do you live? How many children do you have and how old are they? Who lives in your house? When you have a break from the physical work of mothering, what do you do with your time?
My name is Candace and I live in a suburb north of the city of Atlanta, with my partner of 12 years, Veikko. I have two children–Cassie, 6 years old and Vincent,  who is three. I am the only person who is deaf in my family. In between being a full-time mother and household manager I pursue my fleeting interests in anything crafty, sewing-related along with home remodeling projects, and lately, fish-keeping!
Of course, we all have some kind of limitation, physical or otherwise. But I’m really interested in looking at motherhood through the lens of physical disability. Can you tell us a little about your disability and how it affects the day to day work of being a mother?
I have been deaf since age 2 ½, after I contracted meningitis, and it was a total and complete loss from the beginning. I have had two cochlear implants and one is still active but I have not used it in any regular way since I was 15. I recently tried using it again last year and it has such a low ratio of information to noise that I just ended up with anxiety and headaches and irritability – quietness is nicer, especially with kids around!
[For more information on cochlear implants, go here]
I grew up speaking and using my cochlear implants, going to speech class and even a school for the deaf (Clarke School) that promoted lipreading and speech, but did not teach sign. My parents and siblings did not and still do not sign–we all speak to each other and I lipread.  After all these years,  it is second nature to me.  I really enjoy speaking and find it very convenient as well.  I enjoy spoken English and feel very connected to speaking as part of my linguistic culture.  I have a pretty ‘deaf’ voice though and my speech is not highly intelligible, so I can’t bank on it all the time with strangers so I often do write and type on my phone to clerks or shopkeepers. I can lipread pretty well and some people I can lipread pretty much at 100% right off the bat. But that brings me to my family’s communication situation – after all, being deaf is really a communication problem – my husband, who is hearing, exclusively signs to me! I simply cannot lipread him, even after 12 years together. A combination of his speech style plus his teeth and lips obscuring any tongue movement made it very difficult when we first began dating (and we wrote back and forth in a journal for weeks in the early days).  So he went and took two courses of ASL [American Sign Language]  and became conversational (though it’s stalled at conversational and never progressed to fluent despite my attempts to further teach him).  I can lipread Cassie very well and she was an excellent toddler signer and still can sign pretty well, but we rely a lot on speech.   Vincent is much less interested in signing and less dexterous, so he speaks a lot and I really struggle to understand him just like I do with his dad.  Sometimes it means I rely on my husband or Cassie to tell me what Vincent said in order to avoid frustration.  So that’s our sort of complicated communication setup and my hearing husband is pretty much the only one who signs regularly in this household.  
Other than the communication stuff, we have issues with the kids getting my attention or me missing something the kids are doing because I’m not able to hear the tell-tale signs of say, constantly running water in the bathroom or thumps indicating a fall.  I arrive at the scene late a lot, needless to  say! I just remind myself that plenty of parents miss things from being busy or on phone/listening to something, and even if I were there sooner,  its unlikely I could have entirely prevented the thing from happening. None of that stuff has really proven to be a huge deal and we just deal if a situation happens. Even when the children were babies I did not worry too much about being alerted to rush to to their every cry – I even eschewed using the table lamp cry detector that flashed each time a cry was detected…. it was very annoying.  I used my baby video monitor with a blinking indicator, for naps and bedtime, and the rest of the time I winged it, using my super-sensitive peripheral vision and mother’s intuition and checking in on things a lot.  When they were very small,  I used babywearing in the form of ring slings and back wrapping techniques to keep them on me and that gave me the ability to respond to things way before they reached crying – something I recommend to all moms,  deaf or not!  I also bed-shared with them for breastfeeding in the newborn phase and I didn’t have to worry about missing their wake-ups or relying on my husband to wake me to feed the baby.  It felt very simple when they were little ones. As they get older and are in their own beds, it is harder to catch things unless they wake me and my husband takes over more night-waking incidents simply because he doesn’t want to interrupt my sleep and he’s nice enough to go and check because he heard it.  I’m very lucky in that regard – I get to sleep through a lot of bedwetting and nightmare wakings!
What would you say is the hardest part of being a mother with a disability?  
Definitely the communication aspect of deafness in a hearing world is the biggest day-to-day frustration.  Communicating with CoDAs (Children of Deaf Adults) is never really an easy thing as I have spoken with other deaf mom friends who sign exclusively but still have issues understanding their child for a variety of reasons such as they sign sloppily and too fast or don’t know enough signs for their astronomically growing vocabulary. Having a hearing spouse also complicates things as well; the families that I know where both parents are deaf and both use ASL 100% of the time have kids with much better signing skills, and there is more cohesive family communication.  Even a friend of mine whose hearing spouse is a CoDA himself and also a professional interpreter can be seen speaking without signing to his children on occasion, or using his hearing ability to further decode the child’s speech if they are signing poorly, and just generally helping out with communication.  Switching between speaking and signing frequently seems to have some friction in all the transitions even though it makes things easier for the deaf person.
I also cannot listen to what the children are saying as I am doing something, and I quite literally feel like I have to rip my eyeballs from their verbose little mouths so I can cut their food without cutting myself, drive, watch a movie (with them), and whatnot.  I only have two eyes, and it really does get a bit frustrating when I have to look away for all of a nanosecond to stir a pot and I’ve missed  a really critical thing in their sentence and they start all over, or a kid is slapping my stomach to get my attention and tell me something and I cannot look away (or really just don’t want to at that very second).  I know some moms complain they have to listen to their kids talk the whole time they do stuff but at least moms who can hear can keep their eyes on another task at hand!  I am practicing training my eyeballs to work independently of each other!
I also have communication difficulties related to things such as getting on with school teachers and preschool directors or pediatricians and the like.  I can’t easily make small talk and tell them snippets and work in information smoothly and both sides have to work a lot harder to get information across, and develop rapport.  I have recently begun homeschooling Cassie for ‘first grade’ and feel a huge relief not having to worry about any more  issues with teachers, school staff or school functions. I hear this a lot from other deaf mom friends. They attend class parties and feel like all the kids are nervous around them, and other parents don’t try very hard to talk with them, and school functions like plays are not interpreted.  It’s also a little heartbreaking to not be able to communicate with my kids’ friends or my nieces and nephews. Even some of my deaf mom friends’ CoDA kids who do signing at home but in a very modified way (because hey, every family’s different) might not understand me when I try to sign to them.
All the challenges aside, what are some positive things you’ve noticed? For example, I think my being deaf has taught my girls to be sensitive to a person’s needs.
Being totally deaf means things are very quiet for me.  I get annoyed by thumps or feel touched out from the constant tapping and waving the kids do to get my attention but no shrieks or yells or hearing the actual whining voice (just that irksome face!). They can sing “what does the fox say” incessantly, play their electronic toys, watch weird YouTube music videos on the iPad and I am blissfully unbothered. I can hold a crying baby and yes, it bothers me and I can feel their stiff heaving body, but I’m not driven out of my mind with my hearing nerves being screeched to a pulp.  I can drive in the car without hearing any backseat bickering, bad kids music, or that incessant stream-of-consciousness talking-to-themselves thing little kids do!  
I also noticed my kids were able to put themselves in ‘my’ shoes just a little bit earlier and better than kids their age are supposed to developmentally. They can rephrase  their requests to make me understand, describing something in a variety of ways.  When Cassie was just 2 and a half,  she was able to tell me something like, “mom,  i want a fruit popsicle” and if I didn’t understand for some time, she could rephrase it almost entirely like “I want a red ice cold stick” and then I would go “AHA,” and then she would repeat her original request after realizing I was seeing what she was thinking, “a fruit popsicle!”  I loved seeing these kind of adaptations through the years. Vinny’s adaptation is that he easily knows how to ask for help from Cassie or Dad.  We have learned a lot of patience for each other with anything communication-related, and how to shrug it off if it is frustrating. Even though we encounter multiple points of communication dysfunction throughout the day,  every day,  we don’t let it break our stride. Cassie steps in, Vinny tries harder to move his mouth in a way I understand, tilting his head backwards so I can see his tongue more, I stop and clarify and repeat what I think I heard, Dad throws out a sign above Vinny’s head behind him. Whatever works – we try to make an effort to understand and help out.
Signing also has had positive things in itself! Cassie is my little signer and she loves doing spelling “tests” where I just finger-spell the word to her.  It has also helped with vocabulary as I can sign a synonym while saying an advanced vocabulary word and it totally clicks quickly and seamlessly as we read through a story or instructions.  I can also sign to her very discreetly in public or from across large distances without yelling, and talk freely in quiet or loud places.  I really do encourage everyone to learn some sign if just for this awesome superpower. Being able to sign to your kid sitting in the car outside while you’re waiting in line to pay for gas at  the convenience store – and finding out they want you to get them a drink? Very useful.
Let’s go a little deeper and talk about the dynamics of your relationship with your children, as far as your disability goes?  What have you noticed or learned as your child/ren gets older? How do you feel about this?
Not being able to understand my youngest son Vincent as well as I did Cassie when she was the same age has been painful as he really has had a language explosion this past year and I miss out on the complexity of his expression when someone  relays the shorter essence of his request or his thought. I am also often double-checking with Cassie or Veikko to see if I understood it all. I’ve learned not to react until I’m sure I understand – rigid preschoolers don’t like being given the wrong things or you cutting up food the wrong way as we mamas know!  He and I work on trying to be close in other ways through hugging and kissing and making funny faces at each other because he does get very frustrated that he feels I can’t handle his rambling speech easily but he has adapted.  He understands me far more than I understand him, so I try to keep my end of the conversation going at least and let him know I do want to communicate even if I can’t understand every word he says.  It’s still been difficult because as a typical boy he has a lot of boy ideas and rambunctious tendencies and I still don’t know how to deal with that after being a first-time mom to a girly-girl!    
As Cassie has gotten older, I find myself being careful in how I ask her to step in and help with any communication for me. I don’t want her to feel like an interpreter, I don’t want her to feel responsible for an outcome due to failed communication efforts in which she was a third party. I don’t want her to always feel obligated to relay a shopkeeper’s comments to me or anything, and I cringe when people are leaning in to her having a conversation with her that they would never have if they could talk to the adult freely.  I still don’t know how to quickly and not-too-rudely stop it when I see it going on.   I always try to make sure the adult knows that I am the one communicating, by initiating the communication at the outset and IF there’s a small word or phrase she can help with, I’ll ask very quickly for her to say only that part or clarify a word if we’re struggling.  I also try not to put undue responsibility on her to use her listening abilities – just because she can listen out for my name being called at an appointment doesn’t mean she needs the responsibility, at six year of age,  and she should be able to color without feeling anxious she might miss it called out, so I make arrangements like telling the clerk that  I am deaf and need someone to come directly to me to get me when it is my turn.  I try to be very judicious about utilizing her ability for my own purposes, but at the same time I don’t completely avoid it because we’re a family and we help each other and it is good to be needed and useful.  There’s a big difference between saying, “hey,  come tell me if the doorbell rings” and making her talk to whoever is at the door just because its easier.

Thank you, Candace, for sharing so much and so openly!