Monthly Archives: April 2022

A Gift

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Yesterday I came home from a lovely day with my father in Tuxedo, NY and grabbed the mail. There was a package from an address I didn’t recognize. Curious, I opened it up and pulled out the note and was confused. It was a photocopy of a page from a book with a handwritten note at the bottom. It took me a minute to realize that the photocopy was from a page of Smiles and Duct Tape and that the note at the bottom of the page was from an ALD mom I’ve recently been corresponding with. She was thanking me for sending her a copy of the book. She had been moved by a story I’d shared and wanted to send a gift.

I went back to the package and pulled out a beautiful Rolling Stones tee-shirt.

Through my tears, I held up the shirt and thought about 8-year-old Jack wearing his dad’s Rolling Stones tee-shirt at a town fair just weeks before his transplant. It’s been almost 15 years, but that memory is as clear as day. We were all so scared and overwhelmed but focused on being hopeful.

I’d heard about this mother from a friend from college days. A conversation had revealed that my friend’s neighbor had lost a son to ALD in 1990. My friend put us in touch and since then, this mother and I have shared some texts and stories. Amazing how connected you can feel to a stranger.

Beautiful Alan

Lately, I’ve been feeling a little overwhelmed. Between school and internship and Jack and the dogs and the house and and and — It’s hard to do everything well (or even okay) when you have too much on your plate. When my friend first told me her neighbor’s story, my heart hurt for this ALD mom and I wanted to send her a book and a note. I’m ashamed that it took a couple of weeks to make it happen. Too busy with this and that. I needed to force myself to remember what really matters — relationships, connecting. I’m so glad I sent the book, because what I got back was so much greater. Not just the amazing tee-shirt, but the connection with a remarkable person, and the reminder of what’s important. Alan’s story is very different than Jack’s, but they are forever connected, and I am grateful to know his mom.

I’m not someone who believes in the idea that everything happens for a great purpose, but sometimes I do wonder that even though you can’t always get what you want, if you try sometimes, you just might find — you get what you need.

Love, Jess

The answer is YES!

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Years ago, Jack and I walked into his neurologist office with a question that felt scandalous, “Do you think it would be okay to add CBD to Jack’s list of supplements?” I’d been reading about CBD being a magic cure for everything from seizures to depression to spasms (Jack was suffering from horrible spasms that were affecting his ability to walk). We left her office with the paperwork required to apply for a medical marijuana license. It took months for his license to be granted and several more before we realized that CBD wasn’t what Jack needed to help his spasms. What he needed was pot with high levels of THC. We didn’t tell anyone but family and a few close friends for the first few months, worried about being judged for getting our son high.

But there was no mistaking that it was working. Jack would have one of his magic treats two or three times a day and his spasms were alleviated, his appetite had increased, his sleep had improved, and his appreciation of 70s music was off the charts! 

For years we’ve experimented with different strains of marijuana, and I’ve become a pretty talented baker – we didn’t want Jack to smoke, and NJ didn’t sell eatables until recently. The years have moved on, and so has our country’s attitude towards the benefits of marijuana, and we’ve slowly shared our experience more openly. It may not be a solution for all ailments, but pot is a relatively safe substance with many medical (and recreational) benefits.

Since we’ve added pot to Jack’s list of medications, NJ has made getting a medical marijuana card easier and the number of dispensaries has increased, but we’ve been waiting for the day that we no longer needed a signature from our doctor or our cards to make our monthly purchase. Today NJ has joined the states with recreational marijuana dispensaries and — as Jack’s pot mama — I’m thrilled!

So is Jack. 

So are the folks on the LOOOOONNNGGG line at our local dispensary!!

Love, Jess