Knock, Knock

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Yesterday our Ring camera alerted me that there was someone approaching our front door. I looked out Jack’s bedroom window to see my friend, Gail, with a bag in her hand. I glance down to my phone and noticed a text from her, “I’m going to drop a few masks in your mailbox in a minute. They have been washed in hot water using scent free detergent and softener, but I would wash again just to be safe. I delivered using disinfectant wipes.”

As she walked back to her car, I knocked at the window and waved. We gave each other the sign for I love you.

Last week my friend, Blake, knocked at our dinning room window. I’d been fighting with our cable box and the knock had startled me, but once I realized who it was I opened our front door. She stepped away from the house so that we could talk from a distance. She told me that she had stopped by the day before and had knocked at Jack’s window and waved with Jack, “Did he tell you I stopped by?”

Jack’s good at keeping secrets, but he must have loved seeing another person in the flesh. And, Jack and I have been doing yoga with Blake every morning for the last couple of weeks. Her yoga studio has made online versions of their classes and her calm voice and goofy sense of humor is always welcome – especially now.

The beauty of having friends who are spending their days creating masks for hospitals and people in need. The generosity of friends who are turning their local businesses into helpful additions to long days. The frustration of being trapped in the house. The horror of not knowing how long this will last. These are the thoughts that are scrambling around my mind these days. These are the thoughts that have me feeling extremely grateful and really scared/frustrated/overwhelmed – depending what moment you catch me.

How did we get here?

Just a few weeks ago our lives were frantic. Our spring calendars were packed with travel plans, school events and parties. Now our days are filled with Zoom calls, online yoga classes, cleaning out drawers, Tiger King and watching friends through windows.

Sending love from Speir Drive.

Love, Jess

Suspended Classes, Learning from Home and Sex in the 80s

Yesterday Johns Hopkins University announced that in-person classes were suspended through the end of the semester. No spring formals or sorority secret week or lacrosse games or baseball games or ordering Insomnia Cookies for late night study sessions. Anna will be completing her second semester sophomore year of college, in her bedroom at home. Alone (except for her wonderful, super fun family).

We sat around the kitchen island last night and I asked Anna how she was taking the news. She told me that she had been prepared. All the schools had been making the same decision, “It stinks for all of us, but I feel REALLY bad for the seniors. Their missing their last spring on campus and now a virtual commencement.”

I looked at Jack and my stomach fell. Jack’s a senior. His school has not yet made the announcement that in-person school is suspended through June, but I know it’s going to happen. How could it not? Jack and his classmates are the definition of “medically fragile”. Jack will likely not return to school this year – his senior year. No prom, no celebrations, no graduation. On top of that, he’s stuck at home with just the three of us for months. We’re fun company, but we’re not therapists or special needs educators. 

Jack’s school, Pillar High, has created an “academic binder” that’s being delivered today. At first, I laughed at the idea that we would be homeschooling our children with special needs. Jack and his classmates can’t log in and sit in front of a computer to do their work, and none of us are experts in special education. A binder’s advice couldn’t come close to recreating what they get at school — the education, the experiences, the therapy AND the connections.

But, last night when I was up at 2:32 am (the time my body decides it’s gotten just enough sleep to wake up and let my mind spin), I started imagining all the work that went into creating a binder for each individual student. I thought about all the love and devotion I know that the staff at Pillar has for the students. I realized I needed to take it seriously. We’re now in charge of Jack’s education for the next few weeks/months and Jack needs us to try to mimic at least some of what he gets in school. And, a schedule might not be such a bad thing right now.

I’m looking forward to see what the school is recommending. I’ll keep you all posted on how it goes with teaching JackO at home. I’m sure relieved that Anna isn’t counting on me for any help with Physics II.

ONE MORE THING —

I’m begging everyone to PLEASE listen to all the recommendations about social distancing. The more people comply, the quicker we can get to the other side of this. It’s going to be hard on all of us, but we NEED to be in this together!!!

My brother described the danger of people dismissing the importance of social distancing as “People don’t really know who they’re in contact with and who those people have been in contact with.  It’s like having sex in the 80s with someone you met at a nightclub. You weren’t just sleeping with one person, you were sleeping with everyone they’d slept with.”

Great point Brother, but weren’t you only 14 when the 80s ended . . . 

Love, Jess

If you haven’t seen it already – take a LOOK at Jack’s school, Pillar High, in action.

Day 2

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I haven’t been this out-of-sorts in years — since 2007/2008, when we lived with a suitcase always loaded in our car in case of an unexpected trip to the hospital. The difference is that this time it’s not just our family that’s living with the anxiety of the unknown. It’s our entire country/planet.

Like an eerie calm before the storm, and we don’t know what the storm is going to bring. There are limited cases of COVID-19 in our area, but we assume that it’s just a matter of time. Will things get as bad as China or Italy? Who knows, but this has already effected school and work and parties and conferences and trips and Dan’s beloved March Madness.

Our family is social distancing because we’re scared that the virus can be lurking without symptoms for days and COVID-19 seems to be very contagious. There’s so much we don’t yet know and I don’t want to look back and wish we had done more to protect ourselves — to protect our community.

I’m scared about Jack’s health and about the health of all of our friends and family. I’m scared about hospital beds filling and a lack of respirators. I’m scared about small businesses suffering and the entire economy crumbling. I am also a little scared that Anna and I are going to kill each other.*

It’s not that our family is just sitting in front of the news all day. We’re all trying to distract ourselves. Anna is heading out to play some tennis with friends, I’m going for a long walk with JackO and Dan has a pile of yard work (we figure outside is safe). My folks even came today for lunch and we had a nice time, but there were no hugs. I can’t wait to go back to normal — I could really use a Mymom/Nonno hug right now. 

Love, Jess

* Kids are suffering terribly. Their lives have halted indefinitely. They’re missing school and work and parties and games. My heart goes out to my sweet girl and to all of her peers. IT’S HORRIBLE. Now, get home, wash your hands and be nice to your parents.

 

 

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

Class of 2020 Challenge & Rare Disease Day

Are you sick of the Class of 2020 Challenge on Facebook?

I found all the baby photos adorable, but started to get a little tired of all the prom, varsity sport and college sweatshirt photos. ln fact, I was getting ready to toss my laptop out the window (although in our new ranch it might not have been such a big deal). I’ve already been through the torture of watching Jack’s former classmates have their photos posted all over social media as they graduated high school and moved on to their next adventures. And, now I was sitting watching their younger siblings move on, feeling a little sorry for Jack – for myself, until my friend Jen asked if I wanted to join in. “Jack’s class of 2020”, she reminded me.

Thanks Jen. 

When your child has special needs, they get the luxury of three extra years of education paid for by the state (we can only hope that that continues – don’t forget to vote in November).  Thanks to Jen, I realized that Jack IS class of 2020 and who cares if he’s three years older!

As I sort through the photos of Jack over the years, it’s a constant reminder of before and after ALD. A reminder of what life could have been. What life could have been had we known that ALD was lurking in his body. Had we known and treated him a year earlier, Jack would likely have been class of 2017. He would be in college asking for an emergency Venmo for the Uber he had to take to go to the Trader Joes to get Riced Cauliflower. Now we just have Anna making that request.

Saturday is Rare Disease Day – or as I like to call it – The Day When People with Rare Diseases get to Remind People WITHOUT Rare Diseases that We Exist.

I’m not asking for donations, just to read about Aidan’s Law , sign THIS and pass it along to every single person you know (I was asked to send it to 5 people, but that’s lame).

If you haven’t seen what a rare disease looks like at our house, take a peek HERE.

And, if you want to see Jacko’s Class of  2020 Challenge – here you go!

Love, Jess

She Can’t Sing

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She can’t sing.

I mean that seriously. She’s terrible. Like – hurt your ears bad. What makes it worse is that she tries. Sings loud and proud, but she shouldn’t. Because she’s dreadful.

I know it sounds mean, but we point it out whenever we have the opportunity. After all, isn’t that our job as parents? We can’t always just be applauding her.

Anna excels at academics, athletics, and artistic ability. She’s kind and graceful and beautiful. She’s generous and funny. It’s a little obnoxious, so we feel like it’s important to remind her that she will never be on The Voice or on Broadway. And, if she cares about people’s hearing — she should never even sing karaoke.

I wish I could take credit for half of who Anna is, but I think she is who she is because everything just came together and fit — like one of those 1000 piece puzzles with a huge amount of sky. You think there’s no way anyone can make it happen, but it does (at least on Block Island with Nana Sue taking the lead).

Anna was born determined and smart and when life changed for our family, she managed to get what she needed and continued growing and learning. I’m proud of all of her accomplishments, but when she does something that I can actually understand, I’m in awe.

Anna wrote a blog piece for Remember the Girls — an incredible organization founded by Taylor Kane, created to give a voice to women/carriers of x-linked diseases. Anna wrote about being tested for ALD. Her voice shines through in this piece and I couldn’t be prouder. She can’t sing, but she can write.

My Experience Getting Tested for the ALD Gene

Love you Banana.

Love, Momo

Meet the Torrey Family

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I’ve been hinting about this for a while, but I was told that we weren’t allowed to share it until now — lawyers were involved. Several months ago, our family was asked to participate in a project that bluebird bio was working on. They wanted to include short videos sharing different ALD stories to a new website, www.navigatingald.com. A (much needed) effort to educate the medical community and newly diagnosed families.

Bluebird bio is a bio tech company who has been working on a treatment for ALD – gene therapy — a trial that has been very promising for our community. But, bluebird bio didn’t just want to stop at finding a cure, they have been determined to educate both the medical community and those families that are hearing the letters A L D for the first time.

We were happy to participate, but did wonder how bluebird bio was planning to represent our family. Hoping that it would be honest, but not difficult for us to watch and to share. When I first watched the video, I was overwhelmed. Very proud of where our family has landed and also profoundly aware that many would not see our story as a “success story”.

Our family’s ALD story WAS a success story 13 years ago. Jack survived. Jack survived having a late diagnosis and a transplant at a hospital that was learning about the disease as we all were. Honestly, the fact he left the hospital with his vision and hearing and ability to walk was nothing short of a miracle.

Now our story is an example of what newborn screening and new treatments are going to prevent. Proof of how complicated life can be without the benefit of an early diagnosis and having time to find a team so that you can monitor your child and get them treatment when/if needed.

Of course there is part of us that pauses to wonder — What if we had known when Jack was born? What if we had known just a few months earlier?

We know the answer, but we can’t change the past — we can only help to change the future.

Thank you bluebird bio for allowing us to be part of this incredible project.

Take a peek at our ALD story and then take a peek at the other stories. All beautiful, honest, raw and helping to change the future of ALD.

CLICK HERE

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

ALD Family Weekend 2020

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It took our family a while to feel like part of the ALD community. Part of it was that the ALD community was hard to find in 2007 — Facebook was just for the cool college kids back then and, although the internet was already full of information, it was tough to sort through and finding communities  like ours was a challenge. To be honest, we were also completely overwhelmed with what we were going through.

Early on, I did find a few other parents whose sons were struggling through transplant. It was difficult because this disease (especially with a late diagnosis)  didn’t lead to many happy stories. So I hid for a long timed. Just focused on Jack and his ALD journey (oh, and raising Anna and walking our dogs and keeping house and teaching art and writing). I didn’t really become super active with the ALD community until Smiles and Duct Tape was published and Kathleen O’Sullivan-Fortin (one of my ALD heroes and board member of ALD Connect) reached out and encouraged me to be more active. Thank you Kathleen;)

I’m so impressed by the ALD newborn screening parents. Many of them have jumped right in. Speaking at conferences, talking to legislators, and bringing the ALD community even closer together. I’m inspired by them and very optimistic that their families are the beginning of the next chapter of this disease. A great chapter.

Alison and Nic Adler’s son, Lucas, was diagnosed through newborn screening in California and they wasted no time. No only is their beautiful boy is being monitored by top doctors, but they are working tirelessly to spread the word and bring our community even closer together. They have organized an ALD Family Weekend at the Painted Turtle Camp in Lake Huges, CA May 1-3.

Make sure to check out the video on the link below:

www.aldfamilyweekend.com

Our family is looking forward to this wonderful event. ALD folks – sign up today!!!!

Love, Jess

PS Our first ALD friends, the Cousineaus, are also working to make this happen. We can’t wait to see them again in person!