Tuesday, May 26, 2020

Pandemic life.

For 2 ½ months, we’ve been home. No one is allowed to come into our house. When groceries arrive, mail, or other items are delivered, they are wiped down in the entryway before finding their place in the house. Then the entryway is sanitized again. We’ve taken a few drives, mostly short ones here in town.

Parker, who lives with Fragile X Syndrome - an intellectual disability,  was told everything is closed, including all fast food places, until recently when I’ve reached my peak of cooking 3 meals a day. Now they are open for “select hours, 1 day a week”. He was told that we can’t go into the stores because we do not have a special card to get in.

He knows there is a virus. Carl Azuz from CNN10 tells him about it, daily, he obsesses over watching Carl Azuz and hearing what he has to say. Then pouting because his school didn’t get the shout out at the end of the broadcast. It’s our routine, though, and I appreciate Carl’s 10-minute recap of events plus adventures he takes us on as much as Parker does.

There are no sports on TV. Every day Parker tells me who was supposed to be playing today before the “stupid virus”.

No friends can come over, family must be masked and 6 feet apart for an outside visit only.
Our calendar is empty. No school. No visits. No games. No appointments. No anything. Just blank. Emptiness.

We’ve seen every episode of Bubble Guppies, Blue’s Clues, and Paw Patrol ever made. I keep thinking we’ve seen every episode of Sponge Bob yet I keep seeing new to me ones, so apparently, we still have some watching to do there.

Parker is up by 6 and in bed by 8 to watch TV and asleep by 9 – 9:30.

Before the puppy, I was woken each morning from yells of help from the bathroom. I still start our morning helping him in the bathroom. Even at 21, he still requires assistance with cleaning. I still debate every day getting a bidet and wondering if it would increase his independence.  

He doesn’t like for me to leave his side. “Mom, mom, mom, mom, mom, mom….” Repeats throughout the day, if I leave the room the voice follows to be sure I’m still here.

He’s taken backward steps on his independence and, while I know we will get them back, I worry if I will ever get him back in the community the way he was before.

He knows the virus will make him (and others) sick. He knows people are dying. He knows we can’t give hugs to our friends or family… and he loves hugs.

He holds my cell phone all day long, even though he has his own. He deletes text messages he deems unnecessary and holds the phone inches from my face to read for the ones he feels are important. He doesn’t want to miss a thing, and the most important things come through on my phone. It helps him feel as though he has some control and keeps me off of social media, so it is truly beneficial for us both… just maybe not for the people who never hear back from me.

I can’t imagine how he would survive COVID-19 if he were to get it. His communication is limited. His understanding is limited. It doesn’t scare me. It frightens the hell out of me. Maybe he would be asymptomatic and not at all phased. I don’t know. I’m not willing to risk his life to find out.

Allison wakes up Allison is woke up around 11 – 12. If I let her keep sleeping, she would happily stay in bed until 1 or 2. It sounds terrible, or to me like a typical 17-year-old, but the truth is she is awake almost all night long, so to get up late morning gives her the number of hours she should have. She’s always been my night owl. Our time together is after her brother goes to bed.

We spend way too much time sharing tik toc videos but also a lot of time playing card games and now working together to train the puppy.

She is amazingly quiet throughout the day, I make her repeat herself more times than I can count because I simply cannot hear her. Until her brother goes to bed. Suddenly her concert-going voice comes out and she yells everything at me as though I’m 2 blocks, not 2 feet away.

She understands everything. She knows what’s going on, she follows the news, she expresses her frustration at the ignorance and self-entitlement around us.

She knows she would likely die if she were to get this.

Can you even imagine being 17 and knowing that there is a virus in our world that would kill you?
She is not only immune suppressed from the methotrexate (a chemotherapy drug she takes for her juvenile dermatomyositis - JDM) but she had an infusion to remove all of the B cells from her body to help her better fight the JDM.  She has basically no immunity. On top of that, because of a specific antibody she has, her heart and lungs are already compromised and at risk to be attacked from her own body, let alone something like COVID-19.

She watches as her friends and people from her school still get together. She sees the snapchats of people cursing our governor for not allowing people to gather and the photos of them breaking every distancing recommendation there is. She sees people refusing to wear masks and has been made fun of for wearing hers (which has been required since the onset of flu season because of her JDM).
She feels as though her friends do not care at all about her when they ignore the guidelines and get together. She takes it very personally. How could they not care knowing they have a friend who would die? I’m, honestly, out of things to tell her to attempt to make her feel better. I’m trying to restrain from saying that people are careless, selfish assholes even though those are the words playing through my head.

She can’t touch anything that comes into our home until it has been sanitized. She is isolated and feels incredibly alone.

We do our best to provide opportunities for her to ride her horse. It’s safe and the best thing for her mental health. Time outside, even if mostly or completely alone on her horse, doing something she loves.

There are video chats, texts, and phone calls that happen daily, but nothing replaces hanging out in person with your friends.

This is our life right now. We are home. We are isolated. We are taking extreme precautions to stay healthy and safe.

Despite the isolation and exhaustion of trying to be an entire village for my kids, I would not change what we are doing for anything. This is what will keep them safe, healthy, and alive. And at the end of the day, that is all that matters to me and those who love them.

It leaves me with way too much time to think. And way too much time to be angry and frustrated with the world around me.

I’ve lost way too many people in my life because of my stance on masks. I don’t see why people are losing their minds over wearing them. You cannot smoke in restaurants, stores, or gas stations because it is for the best health of those around you that you do not. It is a public health and safety issue. That is exactly what this is. It is a public health and safety issue.

So why isn’t it being enforced?

I remember when people could smoke in restaurants and I remember when that changed but I am not old enough to know if people lost their ever-loving minds over it. It was enforced and we are all healthier because of it.

So, why is this different? COVID-19 is more deadly than secondhand smoke. It is more deadly than basically everything yet people will disagree with that statement.

I won’t even go into how divided our country is due to politics right now. At  a time when we NEED to be unified on doing the right thing, not only are there 100 different ideas on what is best but hateful arguing as to what is right, wrong, and your rights. That is horrifying and could have been avoided.
There are people who still think this is a hoax by our government. I am not sure if they are blind to the rest of the world or how that works in their mind but it is insane.

So, it isn’t that I am not aware that there are people out there that are selfish, ignorant, and bound and determined to break every rule (especially since they are not enforced – and those who should be enforcing them are saying they won’t – ugh!) because it is against their “rights”.

Apparently, your right to be an asshole is of higher value than anyone else’s right to ever be able to leave their homes.

All you need to do is wear a mask. I’m not asking you to cut off a finger each time you enter a store. I’m asking that you wear a mask, properly, to cover your mouth and nose. Why is that such an impossible request?

Instead, you scream at me that I live in fear. That I am a sheep. That I trust too easily. (eye roll) You scream at me about your rights. Your fears (you may die from breathing in your own oxygen – eye roll, again). But it is MY fears that are proven by the medical community that my children would likely die that are ridiculous. What is wrong with you?

You tell me “don’t leave your home.”

I haven’t been. But, the reality is I SHOULD be able to. I SHOULD be able to take my adult children, wearing masks, into the store and they SHOULD be safe because YOU are wearing yours, too. But I can’t. Because YOU won’t.

Because your “rights” and your “freedoms” are more important than ours. What in the actual selfish fuck madness is that???

Not only will you not wear a mask but this past holiday weekend, people jumped at the opportunity to cross state lines and party with massive groups of people, without social distancing, without masks, without a care in the world because YOU deserve to live your life.

I’ve watched the photos pop up on my newsfeed. The pools, the beaches, the restaurants… all of the places you’ve been because YOU deserved it. Now you are back in our communities, back at work, back in the stores where our groceries come from – without your masks – possibly contaminating and exposing others.

Now we definitely cannot leave home for a while. Your “freedoms” have confined us even longer.  It wasn’t your freedoms. It was your selfishness. Freedom isn’t about only some people being allowed to be free.

Maybe our communities and our nation have always been incredibly selfish and I just didn’t notice but I do now, more than ever.

I’ve had people “laugh” at me on Facebook for saying masks should be worn, for saying we should follow the guidelines set out because I want EVERYONE to be able to leave their homes at some point soon. Not just those who don’t give a shit. I’ve had business owners laugh at and mock me.
I can’t help but wonder, if your children could die, would you feel the same way? If your child’s doctor specifically said to you that the odds of survival are extremely low… would you still demand your right not to wear a mask?

This entire 2 ½ months, I’ve watched people continue to go to stores, those who cannot work from home – go to work, many gather with family and friends… all from the inside of my home. It is the most bizarre feeling to see the world go on while you cannot leave your home. For the most part, those in my life do so safely, wearing masks, using hand sanitizer, and taking precautions.
We do have to get back to life. We just need to do so safely.

I’ve exhausted myself trying to explain why this is so incredibly important for you to follow the guidelines with masks and distancing. No part of me understands why it is such a challenge for you or why you cannot.

I see who you are now, though. I see they type of person you are. I understand you do not care at all about the lives of others. I am fine that you are no longer in my life. I’m better without you.

I don’t know how to unify our country on this. I don’t know when doing what is right for the benefit of others became the last thing people wanted to do instead of the first. I don’t know when “love thy neighbor” became “I don’t give a shit about you.” But that is where we are and my heart could not be more sad.

To my friends who are home alone raising special needs or immune-compromised children or caring for family members, I see you. I know you are feeling defeated, alone, and exhausted. I know you feel like you are failing everyone around you because there has been regression. I know you feel like you cannot keep doing this. I know. Believe me, I know.

I also know you can. You are stronger and smarter than the fear and ignorance that is surrounding us. You are better to continue to do the right thing, put others first, and help those around you than those who do not. You will get back the steps you’ve taken backwards. You will make progress with your loved ones, again. You are so incredibly amazing and I know you rarely hear that, if at all, but it is true. It is hard to do things on your own, it is harder when you lose your village and are isolated BUT you ARE doing it and you will keep doing it and rocking it.

This will change you, it already has, it was impossible for it not to. You will come out stronger, even though you can barely stand now. You have what it takes to get through this no matter how much longer it lasts. You have the patience still in you that you fear is gone, you just have to dig deeper for it.

You don’t have to be perfect. You don’t have to accomplish it all. You simply have to be sure that you and those you love survive.

If there are dishes in your sink, stacks of stuff on your counters, floors that need swept, laundry that needs done – that will happen. Rest when you can. Know you are doing the work of an entire village and the only one who is expecting more for you is … you. Take those moments to close your eyes and rest, even if briefly. Breathe deep. Let go of what you can. Stay off social media if you need to, for the good that it brings, right now the worse of what it does is drowning us all.

Continue to be a voice.

Don’t give up.

You are not alone.

I see you.

I am you.

We’ve got this.

Life has given us an incredibly challenging hand and we’ve always risen to the occasion. We will again. There will be a time when we can leave our homes again, when we can let the village back in to help raise our kids.

Our kids are thriving because they are alive. When this is over, they will blow us all away with the progress they will make. I know they will.

Hang in there, dear friend. I’m sorry people are selfish. I am sorry people do not care. I pray that changes every single day. Even more, I pray that you make it through. I worry about you but I know with all of my heart that you will.

Just keep swimming.

To those in my life who have become my COVID-19 village, who deliver us groceries or check-in to see if we need anything, I hope and pray you always know how thankful I am for each of you. Your kindness and thoughtfulness mean more to me than just picking something up or check-in in on me. You are my reminder that there are good people in our world, that there is hope for humanity, that the good always shines through. You are truly the good in this world and I pray you never let anyone change that about you. I am forever thankful.

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