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.
Friday, March 20, 2020
Thursday, March 19, 2020
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:
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.
Tuesday, March 17, 2020
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).
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).
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