Coming home is even better.


Jack laughs with his whole body. His eyes water, his mouth opens and he utters a hardy chuckle, as his entire soul shakes. It’s one of the few noises our boy produces and the sound melts my heart.

The only time we want to quiet the giggles is when he’s eating. Jack’s laughter is so strong that anything in it’s way gets displaced. Food gets spit out, even through his g-tube (the little hole in his belly used to medicate and hydrate). It’s hard to feed Jack around Nonno, Uncle Matt, Uncle Pat or Ronny V. Those men say a word and Jack is in a frenzy.

Dan and I went away last weekend. Our annual excursion to see our dear friends, the Fitzgeralds. We spent the weekend enjoying the scenery of Maine and catching up with old college friends. Time with people who knew us “before” is critical to our survival. Yes – they ask about the kids and we share photos and stories, but it’s a fraction of the weekend. A relief to just be Jesse and Dan for a few days. In our real life, sometimes our identity gets lost in a pile of medical jargon and politically correct words for “disabled” and “handicapped”. With this crew, most of our chats are about music and memories.

The weekend away had the added benefit of no medication, diapers, or early morning dog duties. So odd waking up with nothing on my mind except a bit of a headache. It was perfection. Great meals and wine, hikes, boat rides and even a tour of Portland (thanks JK). But, when Monday rolled around, we were more than ready to get on the plane, anxious to hear Anna’s stories of the weekend and hear the sweet sound of Jack’s laughter.

We walked into the house on Monday to find Maria (Jack’s sitter/my favorite person EVER) cooking a beautiful dinner and Jack holding court at the island. When Anna heard the door, she flew down the stairs and there were hugs all around. We had dinner as Dan and I told the kids stories about the weekend. Anna loves hearing tales of her parents pretending to be twenty and Jack was so thrilled to have his parents home that anything we said was greeted with a smile. Once we were done eating, it was time for some real laughs. It was so good to be home.

Getting away is wonderful, but coming home is even better.

Love, Jess

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