Christmas 2020

Christmas was okay, it just didn’t feel like Christmas.

We did get to enjoy Mymom’s famous sausage/spinach lasagna on Christmas Eve and woke up Christmas morning to made french toast and opened gifts. We ate and drank and listened to Phil Spector’s A Christmas Gift to You All. We spoke with family and friends via Zoom. We even got to spent the day after Christmas like every year — in our PJs watching movies and playing games. The holiday was lovely, but it just wasn’t the same.

The lack of other people felt strange. We were lucky to be able to spend time with my parents (they are our pod, although we are still careful). Our tiny table of six was filled with delicious food and lively conversation, it just felt a little festive then Christmas should be.

The entire holiday season feels a little underwhelming. We weren’t able to see our beautiful nieces and nephews or party with the extended family. There were no December Saturday nights where we Uber from one party to another. There were no lunches with my girlfriends to escape from holiday shopping. There will be no party with close friends to ring in the new year. I didn’t even have the heart or the energy to send out a holiday card. 

COVID was the Grinch that stole the holidays. 

We keep saying to ourselves that next year will be different. It better be. We need to fill this house again! 2020 has taught us all a lot about appreciating the small things AND that nature is powerful and sometimes cruel. Lesson learned 2020 — now let’s move onto 2021 with a new vaccine, a new president and (hopefully) tons of time with friends and family!!!

hApPy NeW yEaR!!!!!!!!!!

Love, Jess

Thanks JackO

This morning I was sitting in my office feeling overwhelmed as I poured through my syllabi for the winter term. I was busy second-guessing my decision to return to school at my age and wondering how on earth I was going to manage, when I heard Maria (Jack’s caregiver), “JackO – why are you crying?”

I race downstairs to find our boy in front of Maria’s phone, watching a video with big tears rolling down his face.

Shakira singing John Lennon’s Imagine.

You may say I’m a dreamer

But I’m not the only one

I hope some day you’ll join us

And the world will be as one

Don’t ever confuse Jack’s silence with not understanding. He recognizes powerful words when he hears them and sometimes his emotions take over. Perhaps his silence allows him to listen even closer than many of us. I’m always amazed by the beauty of these moments. Maria offered to turn off the song, but I insisted that we continue. Tears aren’t always such a bad thing — beside I needed a little perspective this morning.

Love you JackO. And, John Lennon and Shakira too;)

Love, Jess

our relationship in 100 words

As the music plays, I lay my head on his shoulder and feel his breath on my face. I wrap my arm around him so I can stroke his hair and wonder when he’ll lose the rest. He doesn’t seem to know that he’s aged, but the years have come and gone and he’s showing signs of a complicated life. He loves this song. I can tell by the way his body is rocking. He’s not been able to speak for many years, but I’m able to translate. Our connection is deeper than the scars his disease has left behind.

shi^ty disease/amazing people

Years ago my mother and my best friend, Enger, planned a surprise party for my birthday. It was just a keg, some balloons and a pile of friends, but it meant the world to me — I was so surprised when I walked into my dirty, second floor apartment at The Woodrow and saw all those smiling faces. It’s been a while since that day (30 years!!), but yesterday I felt that same feeling of overwhelming confusion and love.

I’m not someone who ever had a bookshelf full of awards, but now I have one, and it is proudly sitting on my mantel. 

Folks at ALD Connect asked me earlier in the week if I would help them as they gave an award to my friend Kathleen O’Sullivan-Fortin. I jumped at the chance of applauding her for all of her hard work — she’s a founding member of the the board of directors of ALD Connect and is responsible for bringing me into this community, while showing me tons of love and support. When it was time for the award ceremony, and I went upstairs to sit at the computer and brought Jack with me figuring that Jack could help me cheer for Kathleen. 

The call started. Suddenly Dan danced into the room with balloons and Anna congratulating me via his cell phone. Then Kimmy V walked up the stairs with streamers, holding a trophy.

Holy smokes!

I’ve sat through these award ceremonies and always felt that the awards were so earned. Amazing people who have done so much for the ALD community. Yesterday I was honored along with Nic and Alison Adler, Kathleen O’Sullivan- Fortin and Dr. Keith Van Haren — some of my ALD heroes. To share such an honor with that crew seems a little odd to me. ALD Connect has done far more for me and our family than I would ever be able to do. They have educated us and supported us and given us a community. 

Community.

If you are reading this, I want you to stop and ask yourself if you have a community. If you don’t — find one. 

ALD is the worst thing that has ever happened to our family. It’s a shitty disease that stole so much from Jack and is now effecting my mother. It has me in constant fear of when I will develop symptoms that might make caring for Jack difficult. It’s a disease that has taken the lives of so many sons, nephews, brothers, fathers. I hate every ounce of this disease, but I’m so lucky to have found this community of remarkable people. They hold me up and provide support. They share information and are always there when I need to yell and scream or laugh and cry.

If I could, I would return this beautiful blue trophy — but I can’t, so I will put it on my mantel and remind myself every time I see it that ALD sucks — but the people are amazing — and maybe a little nuts to recognize me;)

ALD — shitty disease/amazing people.

Love, Jess

There is an angel donor that is matching donations this week. I would like to ask you to consider to making a small donation to this incredible organization.

Two Days

Loving my new fancy ALD Connect mask!

I rarely check my calendar anymore. What’s the point? Plans aren’t really being made anymore. We live our lives playing everything by ear. All my sentences with friends and family start with — Let’s see or If the weather is good or Hopefully.

But this morning without thinking, I opened up my yellow 2020 monthly calendar and there it was — ALD Connect Patient Learning Academy. I should be packing my bags today to go down to Baltimore for their annual conference. Not this year. This year — like everything else — the conference will be on Zoom.

The 2020 conference was scheduled to be in Baltimore. My mother and I planned to head down early to steal Anna away from her college apartment, spoil her with a nice hotel room and explore Charm City for a day before hunkering down at the conference. Being in Baltimore and getting to see Anna for the weekend was going to be icing on the cake for what is always a wonderful few days with the ALD community. It’s an opportunity to sit with people who understand our disease — families, doctors, nurses, advocates, pharmaceutical companies, biotech firms — all with one mission — to win the war against ALD. It’s always an exhausting few days, but every year I leave counting the days until the next one.

Oh well.

It’s not perfect, but I will log in on Friday, and for two days get to listen to the latest news about ALD treatments and protocols. I will get to hear all the updates about newborn screening and hear stories of people’s struggles and triumphs over our disease. And, I will get to at least catch a glimpse of some of my favorite ALD folks on my computer screen.

Fingers crossed that next year we can reunite in person. Until then, I will enjoy the two days and try to appreciate the fact that I don’t need to take off my sweatpants and can get away with just a little mascara.

Love, Jess

Legalize It

In case you haven’t heard — there’s an election next week. There are very clear choices on one side of NJ’s ballot, but I want to remind Jersey voters not to forget to turn over your ballot.

Question 1 would add an amendment to the state constitution that legalizes the recreational use of marijuana, for persons age 21 and older, and legalizes the cultivation, processing, and sale of retail marijuana.

In a time when our state is in need of help, the tax benefits alone would drive me to support this amendment, but selfishly the legalization of recreational marijuana would make my life, Jack’s life, and the life of many, so much easier.

I’m a pot mama.

Of corse I’ve never used pot myself (it’s illegal 😏), but Jack has had a NJ medical marijuana card since 2016. We needed to fight the state, but were able to qualify because Jack was suffering from debilitating spasms that were effecting his ability to walk. Marijuana not only helped with the spasms, but has improved his overall quality of life. He eats better, sleeps better and although his mood has never been a problem, he’s even more JackO.

We have friends and family who credit marijuana with helping with nausea caused by cancer treatments, appetite, anxiety, sleep, depression and a host of other ailments. All without any complaints of bad side-effects other than it can be a pain to purchase and there’s still a lingering stigma attached to marijuana.

I don’t worry too much about people judging us for giving our son marijuana. There have been too many improvements in Jack’s life thanks to our adding marijuana to his list of medications, that we feel completely justified in our decision. What I do complain about is that medical marijuana in NJ is a labor of love — labor being the first word.

Every few weeks I contact Jack’s doctor to make sure our file is up to date, make an appointment and head out to one of the 3 dispensaries in our area (none is our community). I purchase an ounce of marijuana and then go home and start baking. It takes hours. I decarbonate the flower, clarify the butter, use a fancy machine to infuse the butter with marijuana and then bake cookies. I try to make each cookie with approximately 7 milligrams of THC – that seems to be the dose that helps Jack the best. Some caregivers would be forced to sample the cookies to gage the strength (of corse I won’t do that — it’s illegal😏). Jack has a cookie two or three times a day until we run out and then I make another run to the dispensary and spend another day baking.

Legalizing recreational marijuana would make access to marijuana easier and limit the need for Jack’s doctors to be involved. No more cards and physician’s certificates. It also means we could purchase eatables with a specific strength so that this mom doesn’t need to sample cookies to gage strength (NOT that I would do that — it’s illegal😏). And, legalizing marijuana would help limit the negative stigma attached to a medication that has improved Jack’s life exponentially.

So, if you live in NJ and haven’t voted yet, please make sure you turn over your ballot, think about Jack and his sweet smile, and do the right thing. Then turn your ballot over again and make sure you voted for Biden/Harris!!!

Love, Jess

time to refocus (on what? not sure – give me time)

I know I’ve been a little unhinged lately. I know it when my friends start reaching out, “just checking in” and when people start asking if I’ve thought about getting a job or going back to school. I know it when at the end of the day, I still have my pajamas on and my iPhone tells me that I’ve spent HOURS on social media. I’m fighting with strangers and obsessively watching the news and finding myself checking my Twitter feed while sitting on the toilet. I don’t want to miss anything — as if my not being there is somehow going to lead to worse news.

Last night I had a ALD Connect Community Call on my calendar and logged on begrudgingly because I was going to miss time in front of the evening news. As the facilitator of these calls, I’m responsible for reminding callers that we are not to discuss the specifics of the phone calls. I won’t share details, but I will tell you that I got off the call in exhausted/relieved/happy tears. And, with a renewed sense of purpose. An hour and a half with members of the ALD community is what I needed to remind me of what’s really important.

My frustration with our current political situation/pandemic nightmare is that I’ve felt like I have no control. It’s coming close to how I used to feel about ALD. For years I would look at my son and his challenges and wonder why this had happened and why we couldn’t fix it. I struggled with making sense of all the WHYS.

Then I wrote Smiles and Duct Tape and Jack’s story started getting out to the ALD world. In sharing our messy journey, I realized that I wasn’t just telling our story, I was connecting to the community who understood our disease. People who knew what a Loes score was and what GVHD stands for. People who knew that we were unlucky not to have had an early diagnosis, but lucky that Jack never lost his vision and hearing.

It was something that I didn’t know I had longed for for years — connection. Being with our community helped me process what we were experiencing, learn practical things that have helped us and allowed me to help others Giving back —- helping others — is powerful. It got me from a place of feeling sorry for our family to feeling proud of our family and it’s strength.

Talking last night with several other ALD families, I realized for the first time in a while I was thinking about something other than when we could leave the house without worry or what will happen on November 3rd. It reminded me that the world doesn’t always make sense and we need to focus on what we can control. As much has I have – on some level – enjoyed getting feisty with non-mask wearing/virus deniers on social media, I know that I’m not going to change anyone’s mind.* I need to get back to doing something positive, something helpful — connecting — to our ALD community, the special needs community, to our MAPSO community, to our family.

I’m still wondering if it’s time to consider getting a job or going back to school. Writing, coaching, counseling, who knows? But, today, before even checking the overnight news, I was on my computer looking up ideas. Not sure if I will dive in, but it sure was a nice distraction.

Thanks to my friends — new and old — who were on that call last night and helped me refocus my energy. It’s noon and I have clothes on, have run some errands and haven’t yet gotten into any debates on social media.

Love, Jess

* I will still block anyone who is spreading misinformation. And, I encourage everyone to VOTE. For Biden/Harris💙😷✌️

second wave

I used to love the fall. It’s crisp air and magical light always arrived to some relief after a busy, hot summer. The beginning of the school year always felt like a new beginning and our calendars were filled with annual events — harvest parties and parents’ weekends. And, the fall culminates with a wonderful holiday — my birthday.

This year is different. As the temperatures lower and the leaves begin turning, I’m starting to panic.

I’m worried that we’re approaching the second round of hunkering down as the fall has arrived and the COVID numbers have started ramping up again. This time we know what it looks like to quarantine and, in this case, knowledge is not power — it sucks.

When all this started in mid-March, we thought it would be a couple of weeks. Almost like an extended snow day. We filled our freezers with food and set up the puzzle table in the living-room. Having the four of us home was like an unexpected staycation. Am I the only one that thought it was kinda fun? For a couple of weeks . . .

Then the reality crept in. A few weeks of missed school turned into no prom or graduation for Jack. Anna’s spring semester ended at home and then Hopkins announced virtual learning for the fall. Dan’s office started talking about limited returns to in-person work, but not until 2021 and every single house project I had on my list got finished.

Just as we thought that we would go nuts (with just our tiny pod), the weather warmed and our backyard filled with other people and life was okay again. Different, but okay. We got into a rhythm. Dan realized that he could sneak in some hiking while on calls. We planned at least one dinner a week with friends or family. Anna headed back to study in Baltimore for a change of scenery (and people). Jack got to spend some time with old friends and enjoy long walks and hours in the pool. We even ventured to friend’s yards and restaurant dinners (in parking lots), and snuck in a couple visits to Block Island. Our family realized that we could manage our strange new life of masks and Purell as long as we could see some people. It wasn’t a normal summer, but it was lovely.

Now days are getting shorter and cooler, and except for a few fire-pit nights planned, I see a very empty calendar. It’s hard to make safe plans if we don’t have the ability to be outside.

I hear people saying that things can’t shut down again. The economy will be ruined and people will go insane. I agree, but I’m just not sure my family has a choice.

Jack’s immune system is pretty strong 13 years post-transplant and we are usually able to manage his Addison’s Disease and Epilepsy with medications. Jack might be able to get through COVID without too much harm. But he might not. My parents might do just fine. Or not. And what if I got sick? Not in-the-hospital sick, just really sick. Who would care for Jack? Where would I care for myself?

We’re a family who is erring on the side of caution and I’m worried that it means that we will soon be limited to our home and a tiny pod. I don’t WANT to do it again. I’m just guessing it’s going to happen. So for the next few weeks we’re planning to do as many outdoor activities with friends/family as possible. We are also going to load up on some extra food for our freezer and grab a little extra toilet paper.

I know we are not alone in worrying about friends and family who might be more vulnerable. What are you doing to protect them?

Love, Jess

safe(ish) choices

September is here and it’s been fascinating to see how everyone is getting back into the swing of school/fall — in-person small classes, home schooling, virtual learning, hybrids. Our family is still struggling to find our “back to school” routine. We have a messy, make-shift assortment of activities for JackO that we seem to be constantly changing (although he is happy and busy(ish)). Anna is back in Baltimore, taking classes from her apartment and has already been quarantined twice after being exposed to people who tested positive for COVID. Dan is continuing to work from our home office and seems to enjoy working unshowered in tee-shirts, but I do hear him throughout the day yelling at Fios. I win the award for the least productive family member. I do start each week with a master plan of writing and work-outs, but instead find myself doing everything but. At least my closets are clean.

These are crazy times and I keep reminding myself that things will get back to normal at some point. Maybe NORMAL isn’t the right word. 

Thirteen years in, and our family still refers to our lives as before and after ALD. Two years following Jack’s transplant, we still had a suitcase in the trunk of the car just in case we found ourselves in the hospital. And, when everyone was struggling to find masks in March, all we had to do was go into Jack’s closet where we had our leftover pile from post-transplant isolation days. Having gone through that time in our lives, scarred us and left us always feeling like a shoe could drop at any moment. I resented this unease for years, but I guess it prepared us for this latest sh^tshow (I tried to find another word, but noting really worked as well).

Having learned from our ALD experience, I would imagine the entire world will live for quite awhile referring to life as before and after COVID. I’m guessing that it will be years before a cough is just a cough and the pile of masks at our front door disappears or we allow the Purell in the car to dry up. I know someday we will go back to living again, but when?

Maybe instead of focusing on getting back to normal we should focus on creating a new way of living. I know for some of the country, masks have become a political statement, but here in our area masks are mainstream. It means that I now venture out into the community without too much fear. I do find I am constantly looking around for maskless faces and listening for coughs, but mostly I am just going about my business. Being out — even just to run errands — feels liberating after months of the only non-family member we would see was the UPS deliver person.

Part of our back-to-school/fall plans is seeing more people.

We are trying to have friends over at least once a week and even went out to dinner last weekend — outside. I’m taking walks with friends again and Jack has his “other mothers” and his favorite OT (we love you Mr. Galo) coming to the house again. We are even heading to visit friends and to see my in-laws for a few days this weekend. Not that any of these choices are perfectly safe, but everyone we are seeing has been hunkered down and except for a small crew of people, everyone wears masks when not outside/distanced. We feel there is minimal risk, but do appreciate that some of our choices aren’t perfectly safe. Still, we are willing to take the limited risk. Stretching our comfort level is important for us right now so that we stay sane. We were starting to go a little nuts and within a few weeks, the cold will blow in and entertaining will become harder. The flu season might also complicate re-opening in general and we don’t want to look back in November and wish we had seen more people while we could.

So that is where we are right now. Trying to get in the rhythm of the new season and control what we can. Wear masks when out, wash hands constantly and see people in a safe(ish) way.

It’s Thursday and I still haven’t done much working out, but at least I can say that I did spend an hour writing. Now I can go back to procrastinating my paperwork and organizing another closet. Maybe I’ll also reach out to some friends and see if we can make some dinner plans out on the patio next week.

I just hope that, before too long, we can worry less and hug more. Until then — Happy FALLLLLLL!

Fingers Crossed, 

Jess

New Tricks

I often chalk stuff up as a happy accident or a funny coincidence when Jack has a new trick. It’s not that I’m not proud of our boy or that I don’t pray with every ounce of my soul that he will make improvements and develop new skills. I’m just being careful. It’s my way of protecting myself from disappointment. For years, I would see small successes and think it was the beginning of a huge transformation. I was often left disappointed when a new trick vanished as quickly as it had arrived. So I’ve learned to focus on and celebrate what Jack is doing well and consistently.

Over the years there have been some things that have proved to be more than a trick. Jack relearned how to walk with purpose, eat solid food, hug. A few years ago, after being told repeatedly from the folks at his high school that Jack could read, I watched as Jack pointed correctly to a word on a sheet of paper. I paused and then pushed down the excitement, reminding myself that he had a one-in-four chance of choosing the right word — not crazy odds to have guessed the correct answer. Then he did something similar the next day. I tentatively held up word after word to test the skill. I was delighted — and shocked — to see that his teachers were right.

Lately we’ve witnessed another new skill that at first had us laughing.

Last week I got a flurry of text messages from friends asking me what was going on? “What are you saying?” “You okay?” “What’s THAT photo?”

When I scrolled through our correspondences, I saw odd comments and strange photos. I couldn’t figure out what was going on — had my phone been hacked? And, then I saw something that solved the mystery. A large nose.

It was Jack.

I went into the bathroom where Jack was sitting on the toilet with his iPad on his lap. Jack isn’t consistent with his toileting and we find that if we sit him for a bit every few hours we can often save a diaper (adult diapers are about $1/per — and we are cheap). We sit him with his iPad so that he can stay entertained AND stay seated (he has startled more than one guest over the years by walking out of the bathroom with his pants around his ankles).

After the random texts, I realized that Jack’s iPad is linked to my phone and that he was writing to people. How on earth? He must have just been lucky as he hit some buttons.

Then it happened again. And again. Apparently Jack likes texting and sharing photos of his nose and thighs (thank goodness it hasn’t been of anything else).

Then this morning I heard Anna’s voice coming from the bathroom. Having just delivered her to Baltimore, I wondered how it was possible until I walked into the bathroom to find Jack smiling at his sister’s face on FaceTime. Apparently he doesn’t just like to write notes.

So folks, I need to apologize in advance for any odd correspondence you might receive from me. It wasn’t a butt dial and I haven’t been day drinking. It’s just Jack saying hello.

AND, if you get any photos . . . I’m really, really, really sorry. PLEASE do not alert the authorities.

Love, Jess