A Gift

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

4999 Days

Day +4999 . . . 

4999 days since Jack received the stem cells that saved his life. 4999 days ago we never could have imaged what our lives would look like now. And if we had, I’m not sure that we would have thought that we could embrace lives that look like this. 

A few days ago incredible members of our ALD community lost their son. It wasn’t ALD that ended the life of this beautiful young man, but an accident. We’ve known many people who have lost loved ones this year. Not ALD, but COVID, cancer, heart attacks. Life is complicated and fragile and we need to appreciate every day. Our family is grateful for the last 4999 days and will treasure each day ahead of us.

I’ve been writing tiny love stories for the last couple of months. The New York Times keeps passing 😏, but I’ll share what I wrote last week. 

I open the door that separates our rooms and look at him lying there. The most beautiful face I’ve ever seen. As if in a trance, I crawl into bed next to him, trying to be careful. His bed is littered with complication. I slowly take his hand and place it between my own. I hold my face against his and I linger over his sour breath. There is always so much I want to tell him and sometimes wonder when we’ll run out of time. Tonight I will just be quiet and enjoy the moment with my beautiful boy. 

4999 days.

Love, Jess

PS Stay tuned — Dan is working on a post for tomorrow.