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 Click To TweetAllow me to explain:
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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.
Man with Down syndrome dies from COVID-19 one week after his mother https://t.co/lvSg6uHbKp
— Mardra Sikora (@MardraSikora) April 11, 2020
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
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.
Happy birthday, Marcus!
Unfortunately there seems to be a lot of people who don’t see COVID-19 as a threat and think continuing to wear a mask is unnecessary. Maybe some will escape getting COVID-19 and escape being the cause of someone else getting it, but that is not a risk I am willing to take. I continue to pretty much stay home and wear a mask when I have to go get groceries and pick up mail at the post office. I hope you are able to continue being safe and that your son will be safe and well too.
Yes! Thank you and best wishes to you, too!
As usual, you articulate what I feel. Thank you. Sorry we’ll miss Marcus’s birthday! Give him hugs from us.
Me too, in real life. But we’ll work out for Marcus and Josh to chat.
what mailing address for sending him a birthday card?
I’ll connect you with that! 🙂
30!!! Happy happy birthday to Marcus! And the haircut at home is perfect. I’m glad I work from home (although my husband doesn’t) but on video calls with people in my office, I often hear similar things about it being time to move on, or wishing we’d all get it. Um. NO. Just NO. I was a little um pushy or whatever the other day when about six of them were sitting in the conference room, and REMOVING their masks to talk! I was like “Good thing the conference room table is 300 feet long since wearing a mask when you’re talking is more important than when you’re not.” I got the crickets reaction. Anyway, stay safe, friend. All of you.
Yes, I get crickets for far less nudges than that. But on we go – trying to balance it all.
(eeeee.)
Getting a haircut from a skinny barber has to be fun.
Happy Birthday Marcus!
Belated birthday wishes for Marcus and Happy 50th for you from Texas!!
How is Marcus doing with the whole quarantine and lack of social interactions? Jared misses everyone so much. At first it was hard to explain every time WHY but now it’s become the norm and I wonder if it will be harder to get back out and socialize again. Fear creeps in and anxiety builds.
Miss y’all!!
We miss you too! I agree, there’s a certain anxiety with the concept of re-socializing. However, I think that’s more for me than for Marcus. 🙂