Month: July 2022

by Laura Rena

I am a parent with a disability. My disability is a severe traumatic brain injury, and it was caused by the event of a head-on car accident. I had to have a craniectomy, which is a surgery where a chunk of skull is removed to help reduce brain swelling, and is later replaced when the swelling dissipates.

This injury has caused me to have a permanent disability in regards to several things, but my memory is one of the main things that was affected. I had one child that was two when the car accident happened, and had two more in the years following. So I am a disabled mom with three kids (18, 12, and 8 years old).

One of the hardest things that my kids (and I) have had to deal with is the fact that I’m not as able to help with schoolwork as I’d like to be. Instead of knowing things at the snap of a finger, I now often have to either read up on it or watch a YouTube video on how to do it correctly.

Another thing that my family (my husband, my children, and I) have had to deal with are child protective services (CPS) phone calls, because of the impact that the disability has on my speech at times. I’ve had the nurse at my children’s school call to speak to me about things regarding my children, and I was completely lost as to what they were trying to say to me. I tried my hardest to grasp what she was trying to tell me, but I know I sounded clueless about the situation. There was also one instance where I’d woken from a nap because they were calling, and I had the “OMG my brain needs to wake up” feeling. I had to call (I didn’t have any transportation at home) three or four different people to pick up one of my children for being sick, and it took a little longer than they’d have liked, so the nurse asserted it was neglect (knowing I didn’t have a license and had to call to find someone to come and get my child). Because of my speech problems and occasional failure to grasp information quickly, along with other nonsensical reasons, the nurse decided it was necessary to call CPS.

That’s one thing my children have had to deal with regarding my disability—fictitious calls to CPS because of my speech and memory problems. I truly feel that this isn’t something to just look past, and I have to wonder if this happens to any other children that have disabled parents also.

There have been times, as I’ve been going through their binders at home, taking out things in the “keep at home” section, and looking through them before tossing them, and then not realizing that somehow some of their homework has been placed in that section, so it gets thrown away. Then when homework time comes, they don’t have it because it’s in the trash. This is why I’m grateful most of their learning is done with Chromebooks now.

They’ve also had to deal with my emotional difficulties stemming from the brain injury, and I don’t wish that on anyone. I think about that, and I get really upset with myself sometimes over it. I’ll sometimes get irrationally upset, depressed, or irritable/angry, and my whole family deals with the challenges that I go through with emotional regulation that I’ve had since the injury.

I feel super guilty about the fact that I struggle at times with emotional regulation, and that my kids are the ones that see that. It’s really hard to try to teach your children how to be competent with emotional regulation and how to deal with emotions when I can’t even always deal with them myself. I truly hope I’m not causing my kids to grow up with a disadvantage regarding emotions. I’m super thankful to my husband in this regard, because when things happen in this aspect, he’s there to explain to them that sometimes things don’t work in my head the way they do in most people’s heads because of “what happened to mom’s head.”

I’d imagine that living with me gets truly difficult at times for everyone in my family. Along with the things I’ve mentioned already, I also now deal with adult ADHD. Even with the medications, it’s hard to not have times where I’ll start doing one thing, and before I know it I’m moving onto other things, and with the memory issues that I have, I’ll completely forget about the first thing that I’d started off doing. At times, I won’t even remember that I was doing something else at first until I see the remnants of the unfinished task. (Or don’t see. For example, we’ll say I forgot to take the meat for dinner out of the freezer because I got distracted by cleaning up something or some other task.)

Overall, my husband is my rock. He’s been there for me for most of my life (20 years) for literally everything that I’ve gone through. I’m lucky enough to have somehow managed to find my soulmate at 15 years old. We were married before I turned 19, and it was most likely the best decision I’ve made in my life.

Let me sum up just a few (super shortened versions) of the absolutely crazy things that we’ve been through together. Together, we went through the loss of my pregnancy with our first son when I was nineteen weeks and five days pregnant. That was its own personal hell. There’s a lot to that situation, but we’ll leave it as I almost lost my life. Then, six months after that, we were in the aforementioned car accident, and I almost lost my life then also. Again. He was by my side through it all, and I love him more than I’d ever thought it was possible to love someone. Together, we have an amazing life, despite my disability and the traumas that we’ve faced. Yeah, life has been hard, and I face some challenges regularly regarding memory and parenting that most people don’t—my life has been more rewarding in so many aspects that I see the average person not having. Yes, I’m a disabled parent, and it makes things a bit harder sometimes. In the end, it’s all worth any effort it takes.

by Ariel Grucza

My first child was born in 2015, and my partner and I had planned to homeschool long before that. In many ways, that put me at an advantage in March 2020—my life was not in the same type of upheaval as many of my friends whose children went to brick-and-mortar schools. I never scrambled to find a childcare provider and my kids never needed to make a considerable schedule adjustment—our lives were already centered around learning at home. While many families in our social circle felt the weight of isolation from working from home and virtual school, our lives hadn’t changed much.

Sure, we weren’t going on the field trips and day trips that were common in our pre-pandemic lives, but we didn’t feel isolated. While the rest of the world seemed to be in crisis, our days continued more or less normally. We chose to take significant precautions, and when most of our small-town community decided not to observe our state’s mask mandates, we packed up and moved to a more compliant area. We bought a house with a big yard, a trampoline, a swing set, and our kids had plenty of access to socially isolated outside play.

Fast forward two years to March 2022 and the rest of our state seems to be operating as if the pandemic is over. For our family—two disabled parents, one immune-compromised, and two children too young to be vaccinated who were born at 28 weeks—isolation has set in hard. While we were prepared to school at home forever, we weren’t prepared to stay at home forever.

With so many people no longer masking in public—let alone wearing high-quality respirators like N95s or KN94s—a Costco trip seems potentially perilous. A field trip to a museum is out of the question.

I’m fully vaccinated and boosted, but the truth is that if I get COVID, I’m much more likely to die than the average able-bodied person. I’d leave three children six and under motherless, and I’m only 34. As the world moves on, I feel like my community views my family as disposable.

Pre-pandemic, I had always assumed that most people had a great deal of caring and compassion for their neighbors, but I no longer feel that I can justify that belief. As able-bodied people return to their everyday lives without observing any pandemic precautions, I think that there’s a clear subtext: the social lives of able-bodied people are worth more than the actual lives of the disabled, chronically ill, immune-compromised, elderly, and those too young to be vaccinated.

As a disabled adult, I’m also keenly aware of long COVID, a complication that many people seem to be barely aware of. Many formerly able-bodied people are now newly disabled adults after contracting COVID, and we still don’t know the long-term impacts of mild or asymptomatic COVID infections. The effect of a significant increase in chronic illness and disability will be startling. So far I see few in our society prepared to discuss how we’re going to handle millions of COVID “long haulers” in the years to come. If my children’s generation sees significant long-term impacts from COVID, will we face an entire generation with severe chronic illness?

I know some of these concerns seem extreme to my able-bodied friends. I think it’s hard for able-bodied people to imagine themselves as permanently disabled, but it’s easy for disabled people to imagine themselves as more disabled. Very few able-bodied people seem to be able to conceptualize a version of themselves that has to choose between taking a shower and making food due to pain or exhaustion. Still, almost every disabled or chronically ill person I speak to can imagine themselves with long COVID—less functional, more medically fragile, with an even more uncertain future.

Our lives have started to seem like they’re at an impasse with the rest of society. While most people are no longer masking indoors, we’re still wearing masks outdoors in any scenario where we might encounter another person. My partner turned down several lucrative employment offers in his field because our family couldn’t justify the safety risk of being exposed to countless unmasked strangers. With few taking even minor precautions to protect the vulnerable, I have no idea when we might be able to participate in life again. When my children ask when we can go on a plane trip, I have no idea what to tell them.

My children treat a trip to Target or Costco like a trip to Disney World. They beg to go on errands, and it breaks my heart. They jump up and down with joy in the parking lot if I relent and sob in despair if I tell them case numbers are just too high right now, or it’s too busy at this time of day, and too few people are masking. My partner and I tried for seven years to get pregnant with my first child—we had lots of time fantasizing about how their childhood would look. This is not the childhood I envisioned for them.

I look forward to the warmer weather of spring and summer, where at least we can wear our masks and go on hikes, find creeks to stomp in, and do nature study in the relatively safe open ventilation of the outdoors. We have a few friends—almost exclusively from families with a disabled parent or child—who take similar precautions, and the nice weather will bring opportunities for masked outdoor playdates. Still, I can’t help resent an ableist society when my children look back at old photos of our pre-COVID life. “When can we go to the planetarium again?” my middle child asks me daily. Maybe next month, I said at first. Then perhaps next summer. Then perhaps next year.