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Little Big Boy

Little Big BoyI was blessed in becoming fast friends with 2-year-old Ethan, a beautiful boy who came into service under palliative care.  Since birth, Ethan had defied the odds. Dedicated doctors predicted that, due to his illness, Ethan would more than likely be unable to reach certain milestones appropriate for his age. Seeing would be a challenge to Ethan – as well as hearing, crawling, speaking and walking. Well, Ethan had other plans. He reached these goals, though not perfectly, they were indeed perfect for Ethan. These miracles were always celebrated with his family: Mom, Dad, and sisters – Sara, 3 years old and Emily, 6 months old –  as well as Grandma and Grandpa.

However, when I came on board, there had been a decline.  Ethan was now confined to a comfy recliner nestled on the floor in his playroom surrounded by his favorite toys. Though Ethan had hearing aids and special glasses, he caught me immediately when I entered the room. As I knelt on the floor, I introduced the puppets and myself and, as his entire family gathered round, I gently leaned into Ethan making sure he could see as ‘his show’ began.

The entire family participated in every  puppet show that followed. The shows, which were orchestrated by Ethan’s sister Katie, were always a celebration. Katie would lean over Ethan, her “big boy” as she lovingly called him, making sure he could see as she talked to and through the puppets – much to Ethan’s delight. She not only experienced his laughter, she got to experience her own. Katie took her ‘job’ seriously and through the puppets, was given a chance to be heard.  We were silly, we were loving, and we had profound discussions through the puppets about Ethan’s illness.

As time went on, we went through some of the seasons. We always began by closing our eyes, making believe we were all outside in the forest – and  Ethan could ‘walk’; in fact he could run!  Ethan had an amazing laugh that was contagious and it was heard each time we transported ourselves outside. We were no longer in that room – we were picking flowers from our garden and running through the fields.  Summer ended and as Fall began her dance, we began ours.  We pretended to rake leaves, then had a party jumping in them.  At Halloween Katie announced, “The next time we do our puppet show it will be a Halloween party!” That week the puppets and I were in costume, and Ethan and his entire family greeted me dressed in theirs.  We made believe trick-or-treating. And we celebrated. And we continued. We celebrated Thanksgiving with our own make-believe feast, puppets surrounding our make-believe table, and Ethan at the head of the table. As winter approached, Ethan’s health took a turn and his family and nurses recognized Ethan’s needs would be now best served through hospice. Ethan was using a feeding tube and now, so were the puppets.  As sick as Ethan was, he rallied when his ‘show’ would begin.  A week before Christmas, Katie thought it would be a good time to have a Christmas party. The puppets dressed as elves and Santa, and we all pretended to exchange gifts as we sang Christmas carols. We danced and we celebrated.

A few days later, I was called by the family and told that Ethan probably had just a short time left. I asked if I could come over. This time, as I leaned over Ethan, there was no puppet show. I was given the privilege of being with Ethan in his last hours. I whispered in his ear how lucky the puppets were to have such a teacher as he. I reminded him of the last several months, of our make-believe garden that we planted, the leaves we raked and jumped into, the sledding, the singing, the dancing and, most importantly, of the wonderful job he did teaching the puppets and all of us how to be good and kind. Though Ethan never opened his eyes, I knew he heard every word I said.

His family called me later that evening to tell me Ethan had passed. I attended Ethan’s funeral and was given the honor of being asked to bring the ‘gifts’ up to the altar. However, it was my buddy Ethan who gave me the gift. A few weeks later, I visited Ethan’s family, specifically little Katie.  She greeted me at the door and told me, “Ethan’s not here anymore, he’s in Heaven.” Katie took my hand and led me up to Ethan’s room. Surrounded by some of the puppets I’d left behind that were Ethan’s favorites, she climbed into his bed, I covered her and the puppets  and we talked. I listened. We read stories. I visited a few more times and each visit with Katie was in Ethan’s room. Katie somehow recognized there needn’t be a puppet show any longer.  It had served its purpose.  I’d like to think it had, too.