Monthly Archives: October 2020

Legalize It

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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

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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)

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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

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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