Monday, November 17, 2014

A sister's point of view.

This weekend our family spent time at the A.I. duPont Hospital for Children's annual memorial service in honor of the children (patients of the hospital) that have died. It was a beautiful service. As a sibling representative, Maggie was asked to speak about her experience as Wyatt's sister. She spoke genuinely, with love. She's wise beyond her 13 years. It took a lot of courage to stand in front of a room full of people speaking about her brother, who she holds so close to her heart. We are so proud of her! She gave me permission to share here what she wrote (and approved the few pictures of Wyatt and her together):


     Hi, everyone… I’m Maggie. Avid reader, field hockey goalie, first born, and sister of Wyatt DeStephano. Which is why I’m here; to talk about my brother and my experience as his sister.

    Wyatt was born with Mitochondrial Disease, but he was just my brother to me. I honestly never completely understood all of his diagnoses and medicines. For a while, I just thought the bags and giant IV pole he had to wheel around were a nuisance. But when I got older, I learned more of what most terms meant. I worried about him a lot.



    Wyatt had two wheelchairs throughout his life. His first power chair had the first ever made color screen and his name was embroidered on the back. He chose red for the color. His last one was purple—his favorite color. He personalized that one with mustache duct tape on the arms and stickers from the hospital. Wyatt liked to make all his machines look the way HE wanted them to, unlike they do in the hospital. Stickers, tape, spongebob golfballs as a handle…whatever it took.

    We tried to make life fun for Wyatt, even the most simple of things would turn into a big event. That sometimes made life feel a little easier because we got so into it we just forgot about the rest. Reality would come back to us when he began to laugh so hard he couldn’t breathe and his machines would let out a very long and drawn out beep. Sometimes I felt like life was unfair for Wyatt; for all of us. Life was hard, but he was just my brother.


    My little brother is a super hero to me. He was very brave and fought for as long as he possibly could. He was also a sarcastic, quick witted prankster. I would like to say he was a brat at times, but I have a feeling my Mom and Dad wouldn’t like that. Though, even more than that, he was very empathetic, generous and loving. If I began pouting he couldn’t help but give in—I would always win. We love each other a lot and had a very close relationship. For three months out of every year we were the same age. Wyatt loved that!

    On September 27, 2013, around 1pm, I was called to the school office to come home early. I wasn’t told exactly what was happening, but I knew why. That evening Heaven gained another angel—I imagine he has purple wings and a green super hero mask. Wyatt and I were both 11 years old that day. I like to think he planned it that way.


       Everything changed the day Wyatt died, in multiple ways. My brother was gone. His hospital bed was taken away, out of our living room which had essentially turned into his bedroom. His machines were carried and rolled out of our home. Our house felt empty. His medicines and medical supplies eventually traveled to Haiti with one of his favorite doctors, who Wyatt liked to playfully refer to as “Dr. Crabby”.

    Six days later I stood beside my brother again, at his viewing service, shaking hands and hugging people…most of whom I didn’t really know. He was wearing his Superman shirt, but he didn’t look like himself. The next morning we did the same thing at my brother's funeral. It was terrifying to me as I said my final goodbye and they tucked him in one last time. He was holding my favorite stuffed animal; one that I have had since I was born and would often lend to him when he was hurting or scared. That little duck gave us both a lot of comfort.


     When I was ready to return to school everyone knew what had happened and was talking about it. I was scared and it really bothered me when the kids would talk about him as if I wasn’t even there. I just wanted life to be normal...like it was supposed to be. With my brother here, but not a life where he was sick. Life around my family never stopped when Wyatt died, even if I thought it should have. It felt like everything around me kept moving so fast, while my family and I stood still. Eventually we did start moving again, albeit slowly. One step at a time.

    Life will never be the same without Wyatt here. But we are learning how to move forward while honoring his amazing life and keeping him alive in our hearts. It’s not easy, but it's been working for me so far.
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3 comments:

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    1. What a beautiful, sentimental set of words and remembrances. Always think about you all.

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  2. She is amazing! I was also noticing again just how amazing your photos are! I think many people would just skip taking photos of their children when one was sick or hurting, but your photos totally preserve W's dignity and also reflect the love amongst the people at his bedside. Have you ever thought of doing photography professionally and maybe specializing in families of special needs kids and/or families in hospice? What a gift that would be for families without your talent!

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