Jack’s Graduation

First there was a pandemic that stole Jack’s last three months of high school. Then we were told that instead of a traditional graduation, there would be an “At Home” ceremony. Then it rained on the scheduled date. I was starting to think that nature was determined to completely ruin the end of senior year for our boy.

BUT the “At Home” graduation turned out to be an unbelievable day. 

Check out Jack getting his diploma!

Watching Jack as he excepted his diploma and Pillar High School’s Presidential Award was beautiful and then seeing his eyes widen every time he saw another friend arrived, warmed our hearts. After the ceremony, he wandered around the driveway reuniting with so many people he adores – IN PERSON. 

We did break some rules. 

Everyone wore masks and there was plenty of Purell, but there were more than 25 people on our driveway. And, there were hugs – LOTS of hugs. We couldn’t help it. It’s been three months since Jack has gotten to see these folks in the flesh and pulling him off of them seemed like torture, so we gave in (a little). 

After the celebration, we blew kisses to everyone as they drove away, and we put Jack directly into the pool — figuring the chlorine would kill off any germs. He sat on his favorite float as Anna swam him around. He had his hands claps behind his head and was all smiles, like he was reliving his fun day. Later in the afternoon we had another surprise when Peter arrived, bottle of champagne in hand, to toast to our boy’s latest accomplishment. What a perfect way to wrap up the day!

Jack’s life is complicated and there are many things he can’t do, but he has an exceptional ability to connect to people. Yesterday was proof that you don’t need to speak or write or be able to feed/bathe/toilet yourself to have a wonderful life full of people who smile every time you walk into a room (or onto the asphalt).

Thank you to everyone who made the day special and to Pillar High School for 7 unbelievable years of learning, growing and licking. I know that we are now not officially part of the Pillar Care Continuum, but I know in my heart, that our connection is not over just yet.

Love, Jess

ALD Connect Peer Mentor Program

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Thirteen years ago we were in the hospital living through transplant. We’d only heard the word Adrenoleukodystrophy for the first time four weeks earlier. We didn’t know anyone who had ALD or who had even heard of the disease. Our doctors didn’t even have much information to share.

We were terrified and we were completely isolated.

It took months to connect with any other ALD families — it was a time before social media and Googling ALD simply lead us to horrifying stories and even more horrifying statistics. Once we found a couple of other ALD families, we did find some comfort, but it was often short-lived as their journey’s took turns down dark paths. Fear and guilt weighed heavy in continuing those relationships.

It took years before our family really found our ALD community. Smiles and Duct Tape – the blog, then the book – found it’s way into the hands of a member of the board of ALD Connect and she reached out to encouraged me to go to their next meeting (thanks Kathleen). Attending a panel of ALD patients and caregivers and then my first ALD Connect Annual Meeting was empowering. It was years after Jack’s diagnosis and transplant and it was when I first realized that our family had reached another chapter in our ALD journey. Being surrounded by people who knew our disease – who lived our disease – was inspiring. And, we were no longer weighed down by fear and guilt and were finally strong enough to be able to provide help. Sharing our story with other families and doctors and organizations studying our disease — it’s (I hope) helped other people, but it’s absolutely helped our family find strength and take some power back.

ALD Connect asked me to attend a meeting last year to find out more about peer to peer support programs and how they can help rare diseases like ours. I was honored to be asked to represent ALD Connect and found the conference fascinating and reminded me of how our family felt thirteen years ago. Scared and alone.

The first speaker at the conference talked about the added stress of feeling isolated that families go through when facing a rare disease. They’re not just battling the disease, they are often battling the disease without any support from people who understand the disease the way ONLY PEOPLE WHO HAVE LIVED IT can understand.

ALD is a horrible disease, but the people effected are an incredible group. It took me a while, but most ALD families don’t take years to find the strength to help others. AND, thanks to social media, our community has been able to more easily find each other. Informally, many in our community have been acting as mentors, but ALD Connect is now rolling out a more formal program.

The ALD Connect Peer Mentor Program is now welcoming our ALD community to reach out if they would like to be paired with someone within our community who has experienced a similar path with the disease. A group of incredible mentors have been selected, representing each phenotype of our disease, and they are looking forward to being a resource for support, encouragement and a shoulder when needed. Please contact me or admin@aldconnect.org if you are interested.

Day 35

What does Jack think about quarantine?

I usually feel confident that Jack understands everything, but sometimes is hard to know for sure. This is one of those times.

I’ve been getting Jack up around 9:00 every morning and when I walk into his room, he pops right up and smiles. He doesn’t have the bags under his eyes that are becoming my new signature look. When I check the camera app to see how many times he woke up in the night, there’s no significant change since the old days (before COVID-19). Dan and I have been experimenting with night-time teas and melatonin and pm medications and one more glass of wine to help with sleep (maybe it’s just me who is trying the “one more glass of wine” method — it doesn’t really work, but I’m gonna keep trying). Jack doesn’t seem to need any help transitioning from the day to a restful nights sleep. 

Jack definitely knows that his family is all home, but that it’s not a normal weekend or vacation. After his morning shower, he marches into the office – where he knows his Dad will be. And after breakfast, he starts walking towards the stairs, wanting to go wake his sister.

He no longer watches out the dinning-room window looking for his school bus to pull into the driveway. Instead he knows it’s time to sit at the kitchen island or out on the patio in front of the computer. When he sees his classmates or friends on Zoom, he smiles and stays on his stool so that he can hear what’s going on.

My parents and Maria (Jack’s wonderful caregiver) are the only other people who have entered the house is 36 days. Jack is always happy to see them, but seems to understand the there are no more hugs or licks and signs I love you from several feet away. 

He definitely knows that life has changed for now, but doesn’t seem too worried. Jack has always lived in the moment. Long before ALD, he was never a kid who stressed too much about what’s coming — or what might be coming. He trusts us and trusts things will be okay.

That trust/faith was strengthened 14 years ago when we promised him that we would keep him safe. With the help of wonderful doctors, nurses, tons of prayer/positive energy and luck, we were able to keep him safe then and we are trying our hardest to keep him safe now. It’s worrying about his safety, and the safety of our entire circle of friends and family, that has me up at night and yelling at the television during the day.

I’m so worried that no matter how careful we are, bad news might find it’s way into our lives. This is a terrible virus and there is still so much unknown and no clear path to reaching the end of it’s horror.

I’m trying to hold it together, but Jack has witnessed me melting down several times over the last five weeks. Just last night he found me in bed, yelling at the television screen and he walked over and climbed onto the bed next to me. I haven’t seen him do something like that so seamlessly in a very long time (any task with more than one step can be a challenge for our boy). It was just what I needed. Jack might be silent, but he is able to share his heart, strength and faith clearly.

So, what does Jack think about quarantine? This is all I know for sure — he’s missing school, but loving having his family around all the time. He’s missing his buddies, but enjoying long walks and the spring weather. And, he’s living in today and trusting that things will be okay.

Stay strong, wash your hands and try to live in today.

Love, Jess

 

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

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!