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Happy 15th Little Bear

Amy Shields

Sully,

Happy 15th Little Bear. It is the strangest feeling not having you here on your birthday. You always had very specific ideas of what you wanted to do on your birthday. Like the year we had your party before Walk for Wishes and you requested a cake with a bald kid playing football on top (forever grateful Kasy). You were always so comfortable with who you were, hair or no hair. Or the year we planned your 9th birthday party around the availability of not only your 9 year old friends but your 22 year old midshipmen friends as well and I’m still not sure who had more fun. You were so good at bringing people together. You were so good at having fun kid. My anxious soul always envied that about you.

You know what I miss? I miss that look. The one you gave me when you were testing boundaries. The one you gave me when you were checking to see if I was watching. I miss the mischief in your eyes and the grin on your face when you saw me watching. I know all your teachers know that look well! You took such joy in testing limits and you knew exactly how far to push. It was almost impossible to be mad at you. Mirth. That was such a gift Bear.

For the past week I have been thinking non stop about what happened this time last year. About the ambulance ride where the three words you repeated over and over out loud were sir, help, and please while the three words repeating in my mind were please, don’t, and die. I started thinking maybe I was remembering it wrong. Wanting to ground myself in how I was feeling at that time I went back and read my text messages. And what I noticed was the joy. How you knew just how to lighten the mood. How you told Pat that if he was going to come all the way from Japan you needed him to land on the roof of the hospital, rappel down, and break through your window. Or how the night of your helicopter ride, after you were settled in the PICU, you scared the shit out of your helicopter pilot, who had last seen you unconscious in the chopper, by saying “boo” with your eyes closed from the bed. He jumped in his boots. And you laughed. And then I laughed. And your nurse laughed. And eventually so did the pilot.

I used to think maybe you were so joyful because you did not know any better but now I think I was wrong. I think you were so joyful because you knew more than all of us. You knew how to LIVE. You showed up. Joyfully. You made everything, even cancer, fun.

St. Anne’s is having a blood drive today in your honor. Last year you got up and spoke your truth. You told students, parents, teachers and staff about how important blood donation was and how important it was to donate to others. With your new lacrosse mullet, wearing the t-shirt you got at new student night at your high school and with a tumor very few people in that room knew you had, you told people how giving of your literal self can save lives. Lives of kids like you. We had no idea a few days later you would need bag after bag of that donated blood to replace what you lost when your tumor ruptured. We thought it was probably "just" a relapse. We were wrong.

Last week I hit shuffle on aux and one of your radio interviews came on. It was an interview from Seacrest Studios at Children’s and they were interviewing you about how much you loved The Hope for Henry Foundation and all the things they did for kids like you. You still had what you called the squeaky voice. The one you hated but I loved. It was just so “you”. At the end of the interview you were asked to give advice to someone who had to fight a big battle. At the age of seven this was your response: “Keep on fighting. There is always a bright side to the dark side.” I’m so grateful I heard you say that. I needed you to remind me to keep my face turned toward the light.

We went to Cantler’s for your birthday. They only had mediums but beggars can’t be choosers. It was a beautiful day and I wish you were here. I miss you. So much.

I will love you always and I will keep trying to kick ass,

Love,

Madre


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