We will be celebrating Marcus’ birthday next weekend. The big Three-O. Oh yeah! And all celebrations will be virtually shared with friends and family from our home.

Here’s the deal, you can believe your life is not at risk by whatever outside actions you are enjoying and, actually, for yourself, you may be right.

But hear this – that is not the case in our house. In fact, I live in paralyzing fear that I’m not stringent enough about our exposure factors.

Here’s the deal, you can believe your life is not at risk by whatever outside actions you are enjoying and, actually, for yourself, you may be right. But hear this – that is not the case in our house. #T21COVID Share on X

Allow me to explain:

  1. People with Down syndrome are more likely to suffer further complications and require hospitalization.

Already studies have shown an 8.9-fold higher risk of hospitalization with COVID-19 for patients with Down syndrome as compared to patients without Ds.

This speaks to the severity of how people with Ds are “hit” with the virus. Additionally, most hospitals still don’t allow a caregiver into the hospital when a person is admitted. I have to assume that anyone who cares about Marcus would do everything in their power to keep him from A) getting sick so that if he doesn’t experience the fallout from these co-morbidities and B) Anyone who cares about Marcus would do everything they can to keep him from having to experience hospitalization alone.

2. People with Ds are experiencing a 5X greater death rate of COVID than the typical population

Let’s take a moment to think about the man with Down syndrome who died of COVID a week after his mother, in the hospital, on his thirtieth birthday. Alone.

Fuck that.

3) Medical Rationing and Systematic Ablism at work.

Neither of these previous points necessarily include the systematic ablism that may prevent Marcus from receiving the best, or even appropriate care, and without an advocate watching…Nope. No. no. no.

Risk

At the moment, I am the biggest unknown we bring into our home. I leave the house for work. So, I sanitize, wash my hands a million times, and try to social distance (but that’s a struggle when it’s not two-way recognized).

A coworker said “I wish everyone would just get it and we could get through this.”

“Please don’t say that.” I replied, “You know that people I care about may not live through it.”

As the world “opens up” ours must close further. If that means I need to make other adjustments to my exposure, I will. None of us knows how long this will go or what is next. Because yes, COVID is a moving target and there is confusion, disinformation, and exploitation. But what medical professionals and statistics show so far isn’t a pretty picture for people with Down syndrome, like our Marcus.

Therefore, on Marcus’ birthday and who knows how far beyond…we’ll see you virtually from our home, so that when the coast is clear, we can celebrate (with hugs!) again.

*****Some light reading on the aforementioned points:

COVID-19 Infections And Deaths Are Higher Among Those With Intellectual Disabilities

Down Syndrome and COVID-19: A Perfect Storm?

Coronavirus: sixteen times more lethal for kids with intellectual disabilities

COVID-19 & Down Syndrome 

Caregivers of individuals with Down syndrome have one job when it comes to COVID-19

Marcus has been a “great sport” about everything. His biggest complaint so far is needing a haircut. So – we finally got the hair kit online and Quinn has set to work.  Haircut from home.