Under Water

*This is an article I'm working on for a collection at MUSC about people's experiences of the COVID epidemic.  I'm sharing it here so that you can always have it, Jules.

My daughter has always loved the water- when other kids were terrified to put their faces in, she would dive down, deep down, and stay down so long that we would become worried.

While I am not a very good swimmer and don't even particularly like to swim, I must admit that there is some beauty to being under water: everything becomes fuzzier, brighter (if it's a sunny day), and sound is muted.  It's just you and whatever, or whoever, is there in the water with you.

Strangely, when we first saw pictures of the COVID-19 virus, water came into my mind.  The bright red spikes reminded me of the coral I saw when I dove in the Great Barrier Reef, alone but surrounded by a feeling of protection and love.  This is how quarantine feels: isolated in our homes, focusing on the quotidian facets of life, it's easy to turn inward and block out the sounds and sights of the world.

Until, of course, in T.S. Eliot's words, "human voices wake us/ and we drown."  We have to come back up to the surface, back up to clear vision, back to the sounds of news reports and speculative conversations, back to the reality that COVID-19, despite its almost beautiful coral-like appearance, has forced us into being at home.  I've had to teach my college classes online and homeschool my daughter, who has Down Syndrome.  While typically developing students can follow some type of online schedule, we have had to improvise, be creative, and just hope for the best; federal laws for kids with disabilities aren't really being observed at this time.

And yet, there is something about this enforced isolation that feels, sometimes, like being underwater.  I've been forced to focus on the essentials (to use an overused word today): my daughter, my husband, who works at the Medical University, my students.  In this environment, I perhaps have about fifteen minutes to catch up on news, but that means that all of the politics, all of the nastiness around the virus and the way people, especially minorities, are being treated, is muted.  What I hear is our "Good Morning" song, Julia's continual pleas to call her grandparents, who we are now talking to more than we ever have, her need to have safety and continuity in her life.  She doesn't really understand what's going on right now, which is very scary: she doesn't understand why she can't see her friends, why she can't go to school, why we have to be "safe" all the time.  I told her that people are sick, so now she thinks that everyone is sick.

So we retreat into comforting television shows, field trips (to the few places that are open), or even walks to the local pond to feed the turtles and watch the birds. I've been teaching her how to read and we have a nightly workout routine. My classes are now over (it's mid- May and the College, where I teach, would have had graduation today), so I can focus on her, on protecting her from all of the ugliness that is COVID-19 and the politics that unfortunately surround it.

At the beginning of the epidemic, Julia had been in school and had been exposed to Flu Type A. However, because the symptoms were so close to those of COVID-19, and because her father works at the Medical University, we had to go get her tested.

We had seen the pictures of the testing site: dozens of white tents covering the parking lot of a mall.  We had seen the doctors doing the testing, dressed in heavy white hazmat suits, all of their body parts covered.  I thought about Julia's (rational) fear of mascots.  If you couldn't see someone's eyes, how could you possibly trust them?  I thought of her fear of masks.  How, I wondered, would I get her past the tents, the people, the palpable anxiety?  And even if she did not, by some miracle, freak out about the tents and what would look to her like space people, how would she ever endure having one of those space aliens put a long q-tip up her nose?  It felt like something out of a science fiction movie.

So I knew we would have to innovate.  Together, we came up with a plan: we would wear (or, in my case, pretend to wear) costumes.  And guess what costume Julia chose?

She was a mermaid.

Mermaids have been known to be fierce, spunky, and sassy, and Julia is all of these things. With her sparkly tail, she channeled her underwater self and told me, in no uncertain terms, that her costume was better than the doctors'.  She also never even flinched when they put that q-tip up her nose.

But sometimes mermaids need help.  Even though being under the water can be a serene experience, it can often--again like COVID--be murky.  You can't see where you are going or, in my case, when you will hit the wall of the pool (one of the reasons I don't like swimming).  You don't know when it will end, so you keep paddling, hoping against hope that you will touch a wall soon. That fear, the anxiety of having no end, is real, so when she went to get tested for COVID-19, Julia asked me to pretend as well.  She asked me to be a lion.  A protective, ferocious lion.  I played my part; even though we were asked to stay in the car, I knew she might need a little extra help blowing her nose, having someone hold her hand.  I played the "special needs" card and demanded to get out of the car so that I could help my little girl.

And this, to me, exemplifies the COVID epidemic.  We live our mermaid lives and, during the times we are out in the "real world" (which, for my husband, is every day), we are lions, working hard to protect our tribes and allow for us to have our strange, surreal, at-home existence. We anxiously await for--and sometimes, dread--the day that we will emerge from the water.  Will be be able to regain our footing? We will lose the uncertainty, but will we also lose the strange, almost beautiful underwater silence that pervades our lives now? For now, I take a breath, dive down, and try to live in the moment.

Relaxing

Is it me, or is it really difficult to relax in this environment?  This last week was our spring break at the College, but I have spent every single day working (I'm taking the weekend off to spend with Daddy and you, Jules).  I've been either homeschooling you--which has felt alternately really cool and really overwhelming--and doing my own work...to the point that Daddy asked why I'm working all the time.

I'm working because I'm anxious.  I'm working because I have this horrible feeling in the pit of my stomach, and trying to relax feels really pointless.  You've been sick, we are homeschooling, my students at the College are coming back, only to have to move out in a day, everything has been cancelled, Nagyi is isolated in her home and cannot travel anywhere, and everyone I know has been affected by COVID.  So I do what I always do when I get anxious- I do my work, I do the thing that's natural, that I would do every day, the thing that makes it feel like I have some sort of consistency in my life.

I do my running for the same reason (and because my doctor isn't open and I can't get more antidepressants).  Tomorrow we will do a run for 3.21, World Down Syndrome Day; you and Daddy will do 3.21 (in a stroller, not touching anyone) and then I will do the other 10.  And then we will have a picnic, by ourselves, isolated from others.  But at least it will feel "normal." 

Right now, I hear kids playing in the neighborhood, laughing, enjoying the sunshine.  Perhaps when you feel better you can join them and life will not feel so isolated.  For now, though, I have you and my germ-free work. 

Life in a Pandemic or, White Lies and Perspective

Dear Jules,

We live in unprecedented times- you keep asking me why we can't go outside and play, and I keep telling you it's because everyone is sick.  That's not 100% true; the truth is that everyone could get sick and some elderly people could get very sick. 

Today is day 4 of homeschooling, day 4 of my "spring break," day 4 of you being very sick with something.  The doctor thought it might be the flu, but we don't know for sure because we went to the doctor on the computer...like we talk to Grammy or Nagyi.  So the doctor said you were sick but, because you had a fever and a bad cough, we had to take you to get tested for COVID.

So here's the second white lie I told you (why are they "white" lies anyway?  Would a bad lie be a "black" lie?): I told you we were going to a costume event, and that the doctors would be dressed like astronauts.  You wore a mermaid shirt and a mermaid tail, and I pretended to be a scary lion.  We picked up some food from the drive through, since you cannot go into restaurants any more, and had a picnic on the grass right in front of the tent city where MUSC is doing their testing for COVID, a new virus they do not have a cure for. 

Then, we got in our car, and we approached the first stop sign, where they asked for our name and gave us a bag for your "personal belongings," which they put on our window (you can see it to the side of the picture).  We went through about three more stop signs, going through a maze of cones like this:

Finally, we got to the swabbing station.  I think the consensus was that you won the costume competition, but they came pretty close.  They looked like this:

So yeah...that was a little scary, but you were amazing, a trooper.  You didn't even flinch and kept on grooving with your mermaid-y self.  

So far, day 4 has been the worst: you're now nauseous and tired and have diarrhea, and you've been begging to rest.  We are all praying that you get better soon, Jules, and then I can start teaching you from home, which should be interesting.  I will be teaching my students from home as well, so you might see them on the computer...this is the world we are living in today. 

It's a scary world, sometimes (like in CVS when people yelled at us for being in the way) an inhumane world, but these things also bring people together.  Just now, a friend dropped off gluten-free brownies and some toys for you; people have brought me coffee (thank God); and your teacher even physically dropped off your materials for school.  People are checking on the elderly, making sure they are okay, and I think everyone just wants to get through this thing and get back to some semblance of normalcy.  It's funny how little things--political views, personal annoyances--matter so little in this climate of survival.  It's funny how survival brings out the worst but, paradoxically, also the best in us.  

One thing is for sure: this incident has reminded me that you and our family are the most important things in the world to me.  I'm worried about my students, too, but somehow the annoyances of the semester have receded into the distance.  Again, it's all about perspective.  For possibly the first time ever, I agree with President Trump that this feels like war.  It's a scary war against an enemy we can't see, but that's why we need now, more than ever, to acknowledge one another's humanity.

Carolina Children's Charity

Dear Jules,

I'm writing this letter about your music therapy but wanted to keep a copy of it for you, so I'm putting it in your blog!

My daughter Julia has Down Syndrome; because of the low muscle tone that often accompanies DS, she has difficulty with fine motor skills, namely using her fingers, coordination, and, because the tongue is a muscle, talking.  Speech has, in fact, been her biggest challenge, so I will never forget going to a South Carolina Down Synrome conference and hearing a presentation about music therapy. 

From birth, Julia has loved music.  I remember playing Bob Marley to her when she was still a tiny baby, and she would bop up and down to the beat.  When she was a little bit older, I took her to Kindermusik, and she absolutely adored that too.  I play violin and she has always been fascinated by watching me play.  So when I heard "music therapy," I thought this might be the ticket!  Perhaps music could engage Julia and get her talking!

There was only one problem--insurance would not cover music therapy, as it's not yet a "recognized" form of therapy.  And paying for music therapy every week would be hard on our budget.

That's when we heard about Carolina Children's Charity, a local organization that raises money, with the help of firefighters, to help children gain access to therapies or medical necessities that insurance will not cover.  We applied for a grant, and we got it!  Ever since then, Julia has been working with Jennifer Gossett, a local music therapist, and she has just blossomed.  She sings all the time, and now she's saying three and four word sentences.  And the music also helps her other fine motor skills.  For instance, here she is plucking the strings of a guitar, which increases her finger strength:

This is a tough time for the Childrnen's Charity, as for everyone else.  With budgets being tightened, stores closed, and the charity's annual boot drive cancelled, it's going to be difficult to raise the necessary amount of money to help these kids.  In the midst of such national uncertainty, this might fall low on one's priority list, but this is not, for us, superficial.  If Julia is verbal, if she writes, she will have access to so many more opportunities, including the opportunity to work and to contribute to our community. 

I know this is long-term planning, but that's how parents think when we have children with special needs.  When we are gone, we want our kids to be able to talk, write, navigate the world, and contribute.  Please consider supporting this charity to make this a reality for sweet Julia and all of her friends.

(Picture with Annmarie Leahy, Mount Pleasant Pediatric Therapy.  Annmarie is Julia's speech therapist, and she works together with Jennifer in order to maximize Julia's speech).