MCATS, NYU, Old School Vinyl and Duct Tape

hApPy NeW yEaR!!!! Less than a week into 2021, and our family is starting out strong. Anna completed her junior year at Johns Hopkins a semester early, so she’s taking next semester off to study for the MCATS. Not really … Continue reading

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

Holidays + COVID = 0

Not sure how I can feel so exhausted when I do so little. Each morning I write a list of what I hope to accomplish. Some days go by where I don’t complete anything, so I return to the list and add things like — shower, walk the dogs, feed Jack — just so I can cross a couple of things off the list. With the holidays around the corner, my daily list gets longer and less seems to be getting done. Today, instead of Christmas shopping for the family, I ordered some bras and an eyebrow kit (not even sure what that is).

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

other mothers, a taxi driver, and a plan

I’ve spoken about Jack’s “other mothers” in the past. A small group of women who Jack adores and who we trust with our most prized and fragile gift — JackO. Each of these women have become family and each has helped me every bit as much as they’ve helped Jack.

Last weekend when Monica arrived to hang with Jack for a few hours, she noticed right away that I was not myself. I shared that I was feeling a little off and she pondered if there was something in the air lately. She too had been feeling a little blue and told me that she’d been spending time listening to wellness speakers and reading inspirational books. 

She shared something she’d heard and found motivating.

When you get in a taxi, you need to tell the driver where you’re going. If you don’t, they might be willing to drive you around, but it’s unlikely to get you to where you want to go. Even if it does eventually get you there, it’s not a direct route and can be expensive. “Words are powerful, Jess. Find the words for where you want to go.”

Wow!

As soon as she shared that story, Monica started putting on Jack’s shoes and left me there thinking as she took Jack to Wendy’s to pick up some bacon-double-cheeseburgers. She had no idea that she had given me the last kick I needed to make a big change.

I sat down on the living-room couch and asked myself to figure out the words for where I wanted to be in five years. The words were right in front of me. I then called my mother and told her what I was thinking — I told her my words (I know I’m 50, but she will always be my goto person when I’m struggling). She said, “I think that it’s a dandy idea. Move forward Tates. Don’t let anything stand in your way.”  I spoke to Dan who told me he was proud of me and supported me 100%. By the time Monica and Jack returned to the house with their greasy fingers and full bellies, I was on the computer researching master’s programs. By next week, my applications to get a MA in Counseling will be complete and I’m hoping to start in January.

Truthfully, I’m not usually a person who believes in everything happening for a reason and that the world makes much sense. I’m more practical and believe that life is usually a mess and it’s our responsibility to make the most of it. Either way, Monica’s words hit me in an unexpected way and I am grateful. I’m ready for my next chapter now and I am relieved to finally have a plan. I’m aware that I haven’t actually been excepted into any program, but my words are out there so what could go wrong?😏

I’m fifty. I’m a wife and a mother and a friend. I’m a writer and a photographer and teacher. I’m also a special needs mother who’s passionate about working with other parents who are struggling to find their way. And, here’s what I’ve discovered folks — I’m also a taxi driver. Thank you Monica!!!!!

Love, Jess

I searched the internet trying to find the source of the taxi story. I couldn’t, but I did find this one.

“Life is like a taxi. The meter just keeps a-ticking whether you are getting somewhere or just standing still. — ” Lou Erickso

And of corse, I’ve always loved this one.

“I may be going to hell in a bucket, babe. But at least I’m enjoying the ride, at least I’ll enjoy the ride.” — The Grateful Dead

One more thing — Peter is included as one of Jack’s other mothers.

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💙😷✌️