Wednesday, December 18, 2013


We're one week away from Christmas. Today happened to be the day when we reconnected with the Butterfly Program after having taking a long break. The Butterfly Program is Children's hospice program. Jacob joined the hospice program in 2008. I remember running into Dr. E down in the hospital lobby during one of Jacob's hospital stays. She asked if I had a few minutes to sit down with her. She looked her most serious. I remember thinking she is going to tell me she is retiring. I didn't expect her to bring up hospice. She did it in an elegant way. It was not about giving up on Jacob. It was to acknowledge the fact that Jacob had a life-threatening disease, and we had seen some significant progression in his disease. She wanted us to have all available resources on our team, just in case.

Fast-forwarding, Butterfly helped us get Jacob his Make-A-Wish. A trip to Disney World we will cherish for life. Butterfly also became my partner as I developed a Sibling Support program for Children's. The part that never truly worked out was to find a team Jacob on the Butterfly side. We truly struggled with the social worker assigned to us. We turned to other sources of support.

In the last year or so, the Butterfly support team has changed completely. A good friend of ours raved about the support her family was receiving from Butterfly. I knew it was time to reconnect once again as they were really eager to help us.

So, today was the day. I knew this would be the beginning of us putting together an end-of-life plan for Jacob in case something would ever happen to Jacob in the home. This doesn't mean that we or Jacob's medical team is giving up on Jacob or stopping his medical care. We are still bringing Jacob to Children's as he needs their care. But we also know that Jacob's medical status could change any time. We as Jacob's parents need to be on the same page. We need to know what our preferences are in the case of Jacob nearing the end of his life. Some things we already know, some things Joakim and I have never explored together. Some things are simply too painful to talk about. But as always, there is something more important than the two of us, and that is our boy. Our boy that we love to pieces. We know that Jacob is in charge. He is writing his own journey. And the only thing we can do is to get as ready as we possibly can to support Jacob every step of the way.

Joakim and I have some serious homework to do after the holidays. The one thing we promised each other four years ago as we were signing a CPR directive for Jacob is to never ever make a decision about Jacob without us both supporting it fully. We made this promise, since we have to live with our decisions for the rest of our lives. That will be my guiding light as we bark on this homework of ours.

But first, we will continue to cherish the holidays together. We will bake and cook over the coming days, and we will enjoy every bit of this holiday together as a family. The hard choices and the hard discussions will come in the new year.

Love, Maria.


  1. Maria! Thank you for sharing another hard aspect in your journey with Jacob! The words are so beautiful and painfully put together. I always admire your strength and truth in your blogs. Much love, Michelle

  2. Enjoy the holidays together! I wish for you clarity and peace through the decisions.