I DON’T KNOW HOW YOU DO IT

“I don’t know how you do it.”

Parents like us hear this statement all the time.  

My standard COVID reply has become, “I’m not.”

It’s been almost a year in lockdown. And parents of kids with disabilities are not OK. 

We feel forgotten. In many states, we’re not being considered in the vaccine prioritizations. Even in places where individuals with disabilities and their family members are on the list, they’re having trouble getting vaccinated. And if you’re not “in the system” with a waiver or some other disability documentation you’re even more in the dark. 

So we wait, in solitude, indefinitely, for something to change so this nightmare can end. 

Vaccines for children under the age of 16 are still in the trial phase. They might not be available until 2022. We’re at the end of our ropes with no end in sight.

Parents are juggling distance learning, work, parenting, and an uptick in behaviors because of the lack of structure and schedules. Everything that was hard before the pandemic is getting harder: sleep issues, incontinence, fidgeting, yelling, defiance, impulse control. Regression is running rampant but we don’t have the time or energy to document it. Many of us are going on a year without respite. Just us, in our tiny little bubbles, sleep deprived and screen fatigued. We’re feeling helpless and hopeless.

Want to really know how we’re getting by? Here’s an unfiltered dump of how I’m holding up: 

I’m beyond exhausted from getting up at 3 a.m. every day to work in silence before I begin helping my Kindergartener, 2^nd grader, and 4^th grader with distance learning at 7:30.  

I cry every single day in frustration, anger, sadness, or all of the above. 

I started taking an antidepressant for the first time in my life. (I still cry every day.)

I’ve gained 10 pounds due to exhaustion, antidepressants, stress, and zero time to myself to run, sleep, or just breathe. 

I find myself yelling at my kids and then apologizing and hugging them. 

I resent that I have to teach my kids, that it feels like it’s fracturing my relationship with them as their mother. 

I am out of patience. I know it’s age appropriate for a 5-year-old to avoid school work, but there is a reason I’m not a kindergarten teacher.

I hate crafts. Distance learning is forcing me to do crafts daily, and I resent that.

I resent my friends and family who are able to do somewhat normal things like to go school or play sports or simply hang out with someone other than themselves.

I feel like I’m failing my son with Down syndrome. He refuses to sit through his classes most days. I try to work with him, we both get frustrated,  and I give up. Every day. 

Everything I do is for my children, but they need more, and they all need me at the same time.

Every thought, every email, every action I attempt is interrupted. It is maddening.

I am stretched so thin my brain often cannot handle it, it freezes. I stare at my computer not sure where to start.

I am overwhelmed, overstimulated, and over it. 

I miss being Mom. The roles of teacher, teachers’ aid, amateur speech, occupational, physical and behavioral therapist, caregiver, nurse, advocate, cook, bus boy, maid, dog walker, referee, and normalcy maker have taken over. Was I all of those things before? Sure. But not 24/7. Not at this level.

I want to throw every single chromebook and iPad through the window. 

I am tortured daily by the same 6 songs that my oldest obsessively listens to on repeat, at full volume which he refuses to turn down.

I am tormented by the water stains on the ceiling from my 10-year-old’s frequent baths and his refusal to not keep the water in the tub despite my desperate pleas.

I’m plagued the constant mess that comes with 5 people always being at home. I find order soothing, so “just letting it go” doesn’t work.

I am infuriated that women bear the brunt of this; that more often than not we are sacrificing our career, our time, our energy, our sleep, our wellbeing to get through this crisis.

I am livid at the party goers and mask doubters who have exacerbated the spread and effects of this virus. 

I am disgusted by the ableism this pandemic has brought to the surface. 

I am shocked that people consider going to a bar or restaurant more important than preventing sickness and death. 

I am sick of searching for the silver lining. I know there are plenty of them. I’m just done. My positivity tank is empty.  

I am not the same person I was when this started. The lack of humanity I’ve seen from my fellow humans has shaken me to my core.  I have many more months to sit with that before my reintroduction into society. Hopefully we’ll see a wave of compassion soon. Maybe that could help break away at that huge chip I’ve grown on my shoulder.