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!

a conference, the flu, a fall and a shower

Being surrounded by our ALD community is aways a thrill for me and being asked to stand up in front of many of them at The Aidan Jack Seeger Foundation — Standards of Care annual meeting was an honor. Talking about ALD, Jack and medical marijuana did have me nervous, but it was received well.

The conference takes place every year in Brooklyn and is run by one of my ALD heroes and the founder of The Aidan Jack Seeger Foundation – Elisa Seeger. Her beautiful son, Aidan, lost his battle with ALD and ever since she has fought to change the face of the disease. Her crusade to add ALD to the newborn screening panel has led to 14 states testing for the disease — 54% of births in this country (and that number is going up every year). She has also helped develop a wonderful guide for the parents who have just received the diagnosis. And, I don’t know anyone in the ALD community who doesn’t know Elisa and describe her as not just a driving force, but the sweetest, most generous human on the planet. 

The foundation fills the annual meeting with top doctors in the field, doctors trying to better educate themselves on ALD, biotech companies working on treatments, and patients and parents. I’ve attended for three years and am always impressed by the assortment of speakers representing all the sides of our disease.

When Elisa asked me to speak, I jumped at the opportunity, but sharing Jack’s cannabis story with this group did have me feeling a little uncomfortable. Cannabis is still largely unregulated and under-researched. I’m not a doctor or a medical professional and I didn’t want anyone to walk away thinking that cannabis was now part of some sort of standard of care for people with ALD. I kept reminding everyone that I was just a mom who loves her son and is trying to provide him the best quality of life possible. 

I went on to say that I’ve not seen a single negative side-effect since introducing medical marijuana into Jack’s regimen four years ago. It’s not effected his other medications or made him unable to complete his normal daily schedule. I credit cannabis for improvement in Jack’s walking, sleeping, eating and focus. It may not help anyone else with the disease, but it’s worked for us. A reminder that sometimes thinking “out of the box” is a good move for those of us facing rare/complicated/crazy issues. I’m sure that my words weren’t quite so clear as I stood in front of the crowd, but this is what I planned to say and I think I got my point across.

Since I spoke, two people have reached out to me and wanted more information about our experience. Family’s with boys, like Jack, dealing with complicated, often uncomfortable, lives.  I’m so happy that Elisa trusted me enough to share our story and I promise I will be responsible — anyone who reaches out to me will get the same disclosure, “I am not a doctor or medical professional. I’m just a mom trying to provide the best quality of life for my son.”

It was a great conference, but as soon as I walked in our front door Friday, I was reminded that life goes on and it isn’t always just about ALD.

Proof that life with ALD is not always just about ALD — The Flu:

Our family had planned to attend the second half of the Aidan Jack Seeger Foundation events — a family retreat. Unfortunately, we weren’t able to join the fun. I found out Friday that Jack’s school has had a flu outbreak. Between Jack’s less-then-perfect reaction to the prophylactic Tamiflu we decided to give him and worrying about getting other kids sick – we didn’t go the the family retreat. We were all bummed to miss meeting some of Jack’s ALD brothers, but the good news is that Jack seems to have avoided the flu for now. We are keeping our fingers crossed and please send love/prayers/good vibes to all of his classmates that are fighting the flu.

More proof that life with ALD is not always just about ALD — A Fall:

Instead of the ALD Family Retreat, we had a quiet Saturday. We stayed in our PJs until noon and waited for the snow to arrive. After lunch, snow started to fall and I decided to take the dogs for a walk. As the dogs and I were heading home, I was chatting with my friend Kim on the phone, looking forward to getting out of the cold. I crossed the street and stepped up onto the curb when suddenly I fell. I’m not entirely sure how it happened, but I was on the street, my left wrist was aching and I was awkwardly pushed against the front of a large, black SUV. Kim heard me screaming that I had fallen and couldn’t get up. She was trying to calm me down, when the car I was leaning against started.

I’ve had my share of horrific experiences, but this was defiantly in the top five. Luckily, Dan came to the rescue within a couple of minutes. I’m fine except for a sore wrist and a new fear of ice and remote car starters (once Dan got me off the ground, we realized that the car was empty and I was in no real danger).  

A little more proof that life with ALD isn’t always about ALD – A Shower: 

Sunday morning I wrapped up my achy wrist and headed into the City. My mother and I threw my sister-in-law a baby shower. It was a lovely party, but better still is that in a couple of weeks, we will have a new baby in the family!!! And, this baby will be born in NY, where ALD happens to be on the newborn screening panel thanks to the Aidan Jack Seeger Foundation.*

It’s been a long four days. I’m ready for some time in front of the fire and some good/bad TV. Hope you all are doing some of the same today!

Love, Jess

* The baby is NOT in danger of having ALD. My brother doesn’t have the mutation and, even if he did, he could not pass the gene to a son. We are just happy that NY State is doing the right thing for all of it’s babies. 💙

Invisible-At-First-Glance Disabilities

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The last post got a lot of attention. Many seemed ready to go find minivan lady and make her pay for her comment. Others commiserated on having to fight for recognition for their own invisible (or invisible-at-first-glance) disabilities.  

I was disappointment that Peter was forced to spend time explaining his and Jack’s disabilities to a stranger. The last thing a person with a disability should be forced to do is educate, but unfortunately it often comes with the territory.

Especially when their disabilities are invisible-at-first-glance.

When out and about with Jack I often watch people as they try to figure things out. As if I can see the thought bubble on top of their head, “Why is that mom holding her son’s hand/feeing him/taking him into the bathroom?” “Why is he rocking back and forth?” “Is he licking the wall?”

Sometimes people will stop me and whisper, “My grandson/nephew/daughter/neighbor is autistic”. If I have the energy, I try to explain that although Jack shares some similar behaviors, he in fact has Adrenoleuokodystrophy. “The Lorenzo’s Oil disease – did you see that movie back in the 80s?” If I am tired, I just smile and nod my head knowingly. People seem to love having the connection and who really cares if people think my son is autistic vs effected by ALD.

There have been times that Jack’s invisible-at-first-glance disabilities have lead to awkward moments — like the time we got reprimanded by a woman at a Broadway theater. Jack had been annoying her by grabbing the seat in front of him – her seat. She had asked him several times to please stop. I tried to hold his hands, but Jack is strong and managed to break free for one last grab. She turned to me and loudly whispered, “PLEASE control your son!”

I felt terrible, understanding that it was her night out too and nobody needs to have a stranger touching their chair. At the intermission, I approached her, apologized and explained that my son had challenges and sometimes wasn’t able to control his behavior.

Her eyes widened and then filled with tears as she apologized again and again. That made me cry. There we were, two women in tears, waiting for the intermission to be over so that we could get back to our seats and pretend the whole thing never happened. Jack must have sensed the tense mood in the air and never touched her seat during the second act.

Jack has his share of disabilities and medical complaints, but at first glance, it can be hard to know that he needs a handicap placard. And, Peter has worked tirelessly to overcome and work around his challenges. I guess I can’t fault minivan lady for looking over and seeing two dashing young men get out of their car and think that maybe they hadn’t earned that spot.

All is forgiven, but I do hope that she learned that disabilities aren’t always clearly visible and perhaps she should save her scolding for people who don’t stop for pedestrians or text while driving or turn left into the parking spaces on Maplewood Avenue.

Love, Jess