Social Distancing – Day 1

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I got to sleep a little later than usual. There is something nice about not having to frantically get Jack organized with the deadline of a bus pulling into the driveway at 8:20. It was raining and foggy, so even the dogs seemed okay with having a slow morning. I checked my phone and spent a few minutes reading through emails before getting out of bed. When I peeked into Jack’s room, he was still asleep. A quiet cup of coffee before the morning madness is always a treat, so I quietly walked into the living room.

Our usually tidy living room coffee table was littered with paints, brushes and a remarkable painting of Michelle Obama — Anna’s major is Molecular Biology but she minors in Art. There was a deck of cards thrown carelessly on the couch and there were empty wine glasses and soda cans on the side table. I turned to the kitchen and Dan was sitting at the table in his pajamas, cup of tea in his hand and his laptop open.

This is social distancing Day 1.

Dan’s office is closed with the majority of the company working from home. Hopkins sent Anna home on Wednesday and, although Jack’s school remains open for now, it’s seeming like a good idea just to hunker down. 

Jack would have a difficult time fighting the symptoms of COVID-19. That’s a nice way of saying that he likely would not survive. We’ve worked very hard for 13 years to avoid germs and COVID-19 — IS NOT THE FLU. We are going to avoid any unnecessary outings and try to just hang out here and enjoy some quiet family time. It’s the right thing to do for our family and the right thing to do for our community.

Anna and I did have a long and LOUD conversation yesterday about our family and social distancing. She thinks I’m crazy, but I think we are all on the same page now. At least for today.

Besides, perhaps slowing down for a few weeks as we wait this out will be a good thing. As long as we don’t focus too much on the news or the stock market or the giant mess in my living-room.

Good luck folks, try to hunker down and don’t forget to wash your hands!!!

Love, Jess

In other news — Jack’s school released this wonderful video. You might recognize some of the people.

Worried. Not Freaking Out, But Worried

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I tend to overreact. I’ve even been accused of exaggerating. I find a thrill in impending storms and even secretly look forward to being trapped at home for a couple of days with only puzzles, old movies and leftovers. At first, I found the COVID-19 scare oddly exciting. There’s something about a shared fear which promotes conversation with EVERYONE – friends, family, the person behind you in line at Target, the Uber driver, the mail carrier. Us again nature. And, there’s something thrilling for me to walk into the grocery store and find empty shelves.

Then our trip to Florence got cancelled. 

Anna and I were meeting another mother/daughter pair in Florence — dear friends and the daughter was studying in Florence for the semester. We’d planned this trip for months and were really looking forward to an adventure with a girl we’ve known since diaper-days as our tour-guide. I got a little concerned as the news about COVID-19 started coming out, but I didn’t need to be the worrier who demanded we cancel the trip – she was sent home. All the university students studying abroad in Italy were sent home. And then all the schools in Italy closed. We tried to stay positive and modified our trip — a road trip to Hilton Head to see our friend’s brother and family. We traded wine tours and cooking classes in Tuscany to drinking beer and eating burgers, while listening to live music. No problem — our foursome would still have a ball.

Now, I’m not sure THAT trip is going to happen.

Every time I turn on the news there’s more information about COVID-19. More cases, more deaths, more schools/office closings.

I keep washing my hands and preparing. I haven’t gone crazy, but I do have previsions for a couple of weeks and I’m starting to think that we may actually need them. I’m assuming at some point Jack’s school will close and Hopkins is considering extending spring break for a couple of weeks. Dan’s office has discussed contingency plans and even South by Southwest has been cancelled – I wasn’t planning on going, but that news seemed to make it all super real for me.

I understand that COVID-19 can effect people in a variety of ways and that 80% of people seem to skate through with minimal symptoms, but we are a family that has seen the worst case senecio more than once.

We live every day the way the “typical” public is living today. Worried, preparing, constantly thinking “what if”. Germs have been our enemy for 13 years. Simple stomach bugs and fevers land us in the hospital quickly. So, I’m worried about Dan on the train and the subway in NYC. I’m worried that I won’t be able to get extra bottles of Keppra and Hydrocortisone for Jack in case we can’t leave the house. And, I’m worried about, not just Jack getting sick with COVID-19, but all the other reasons Jack might need medical attention and he can’t get it, because now there’s a clog in the system.

I am not freaking out. Promise. I’m just sharing my perspective as a mother of a “medically fragile person”. I just asked Jack’s buddy, Peter, to plan on watching a movie in Jack’s room and not a theater, but I’m not wearing a mask around or hiding at home. Tonight Dan and I are heading out to celebrate our brother-in-law’s birthday. We are leaving Jack in capable hands and won’t spend much time thinking about COVID-19. BUT, if I hear anyone cough, I will be hopping back into the car in record time.

Stay well and wash your hands!

Love, Jess

A Lot of Tomorrows

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We enjoy today and hope for a lot of tomorrows.

That’s how I answered a question I was asked yesterday on one of my Facebook pages. The person was asking how to live knowing that there will likely be a “future loss”.

You might think it was a cruel question for parents with children with ALD – or any special situation leaving their child medically fragile, but trust me – it’s a question that we all have struggled with.

The pain of knowing that you will likely outlive your child and the fear that you won’t – who, other than you, can you trust to care for your child? You worry about a simple cold leading to a fever and then a seizure. You worry about what you might find when you open your child’s door in the morning. You try to plan for a future, but limit the future to a few years, not decades. Worried that being too greedy might somehow jinx things.

Everyone worries about their children — typical and fragile. Anna has no underlying conditions, but we worry about her making poor college choices that could put her in danger. We worry about her traveling alone, working too hard, falling asleep with a candle still lit. The other night I woke up at 3:00 am and spend two hours worried that we had somehow pressured her into following a career path towards medicine (I called her in the morning and asked if she felt pressured,  “You’re nuts, but I love you” was her answer. 

Everyone worries about their children, but the worry about special/fragile children is more profound, because IT IS more real.

Despite all the worry, your special/fragile children eventually teach you not to waste time with too much worry. You need to enjoy today because tomorrow is not assured. You need to slow down and enjoy the sunsets, the song playing on the radio, the newest episode of Impractical Jokers.                       .

I’m not saying that I never have moments where fear/despair/dread/depression take over. I bargain with the universe. I yell and cry. But, then I remember my role in all this is to help provide Jack the best life possible. I get up, wash my face, move forward and enjoy today.

The parent who asked the question yesterday was new to this life. It will take some time, but I know they will find their footing and it will be their special/fragile child that will lead the way.

The fact is folks —  we are all fragile. We are all going to die. None of us are assured unlimited days. 

Our family tries to enjoy and appreciate as many moments as possible. I encourage you all to do the same.

Love, Jess