December 31, 2016 9:30am (Sara)
Twenty years ago, I was saying a tough Good Bye. I was grieving with many friends and family as we lost our April. She was my childhood best friend. She and I met at a babysitter’s and danced for years after that; thankfully our Mom’s were fast friends… because we were attached at the hip for approximately 11 years.
Not long enough.
As with this journey, twenty years ago my coping and grieving was supported with journalling…it was just much more private. My words are deep in a drawer, hand written on tear soaked pages. Twenty years is still too soon to revisit those words but I am certain I was not able to express my feelings like I am today. I was 15 years old and my world was ending. I was certain of it.
April was diagnosed with a brain tumor in June of 1996. It was a glioblastoma – very fast growing and her prognosis was not good. I’m sure I don’t know the whole story but the 15 year old in me was not taking her “6 months” as truth. While I had some friends, teachers and others recommending I “let her go”, I was grateful to have my parents, close friends, and April’s parents understand that “letting her go” was not about to happen. When, in November, her tumor had shrunk a little – it was one of the best days of my life up until that point. And when she was sent home on Hospice…I didn’t know (nor did I care) what Hospice was…she was going home! I had faith until the moment I could no longer deny that she was leaving me. And I don’t regret that one bit. Holding on was the best thing I could do. After all…there has been plenty of time to “let go” once she was actually gone.
April’s struggle started at the beginning but she exemplified a Dragon’s fight. She was not a child with no inhibitions or insecurities. She was a beautiful teenager. Her body started to change almost immediately. When thinking back, the effects of steroids and chemo were so much more severe for April than Maya. Maybe April had different coping and adjusting skills because she was 14 years old vs 3….but April had the more complicated parts of life to deal with. She was hurting, changing, dealing, struggling…she was dying. And she knew it.
There is a Death Cab For Cutie song that has lyrics in it – “love is watching someone die”. I didn’t hear this song until years after April was gone but no song has ever stabbed me in the heart like that song. Watching April go through this experience was one that I made me who I am. I did very poorly in school that year. I was a sophomore in highschool and rarely did I attend the amount of classes I needed – I don’t really know how I got out of making them up but the lessons I learned out of the class were far more important than what I would have had in class. I would attend April’s OT therapy sessions or hang with her in the hospital. We would have support sessions with friends and I had a boyfriend who was very supportive and helped me vent when necessary. My friends and teachers at the dance studio were life savers. April touched so many lives with her smile. Her laugh. Her beauty, kindness, and incredible soul that there was no lack of love and support for those who were suffering.
At 15 years old, I was definitely conflicted. I had the angst and struggle with ego while fear, sadness, and empathy for my bestfriend hovered every moment. People would ask how I was doing and while my journals likely prove I was suffering and struggling, I was angry that people would ask me that. I wanted to shout “it isn’t about me!”. Yet when in a room by myself…I felt like I was also dying. And part of me did. I shed a layer of skin I will never get back.
When Maya was diagnosed, I heard so much of “I can’t believe this is happening again” or “I am so sorry you have to deal with this again”. April’s story is a different story. I don’t feel like this is an “again” type of thing. This is such a different experience. One that will change me again. Another layer of skin is shedding. But aren’t we always shedding? Everyone has struggles and battles. We all lose. We all win. I just hope we all laugh at times too.
I can’t imagine the universe would reunite April and I in this same life but…part of me feels April in Maya. At least her strength and perseverance. Or maybe I continue to feel her within my self. Next to me always.
April died on January 1st around 1am. She had been in a coma since before Christmas and one might have argued that we lost her then but…again – I wasn’t letting go until I had to. And then I did. Because I had to. So I did. I let her go. We always had a party on New Years. She LOVED to watch the ball fall in New York or wherever it may be falling. When it was obvious to Aunt Katie and Uncle Norris (her parents) she was leaving – they called me up to her house. I went in and crawled in bed with her. I left mascara marks on her bed sheets. I remember rubbing her hand that was wearing the butterfly “best friends ring” that trio’ed mine and Genessa’s. I held her for a while before I had to leave. I have no idea how long that was. As I left…I realized it was raining. I’m not sure if it was raining before I got there but it was raining when I left. It rained…actually it poured…all night the sky weeped for our world. It rained so much that night that my dad had to wake us up at 5am to help with sandbags to prevent flooding. I mean really…why not cause a little drama with your lift off April? It was a night that is painful to remember but that I will remember for all of my time.
Twenty years ago now and my heart still wants to call you on the phone. I miss you like I did back then and I ache to hear your laugh. Today you would probably be a mommy like me. You’d be such a fun and great Mommy and Auntie to my children. It has been most difficult when things are great. When my life has been awesome, I miss you most. I’ll try to celebrate you tonight rather than mourn as I usually do. That gets easier with the years but I’d be lying if I said it was possible. I see your dance in the clouds, your eyes in the stars, your smile in the moon, your breath in the wind, your heart in every daisy I spot, and your energy is surrounding me with every speck of pollen from every flower on Earth. You’re with me always. I love you with all my heart, infinity.
Happy New Year friends and family. May this year be our best year yet. May our losses feel like wins. Our tears from laughter be more abundant than those of sadness or fear. May 2017 carry a beautiful shift of energy for our world. One that leads to unexpected happiness and progression for the better. May we all feel loved and safe. And May Childhood Cancer Research continue to thrive and one day lead to eradication of suffering children due to random bad luck.
Love is Life.
Today we started our third month of maintenance and another five days of steroids. Sara and I are getting used to the symptoms now–extra sensitivity, enhanced appetite, sleeplessness and sleepiness. These five days will be an adventure, but we’ll all be together with the holiday cheer as a welcome cushion.
Today we met a young woman named Marin who, along with her brother, had decided to donate some of their own prized possessions to the kids at Renown. Maya received a baby Rapunzel doll (she’s sleeping with it next to me as I type) and a treasured princess book which will be carefully placed in the ‘library’ next to her bed. It’s inspiring to see kids exploring the idea that their most valued possessions might be even more fulfilling in the hands of others. Thank you, Marin, for taking this step. In doing so you expand your community, strengthen yourself, and strengthen those around you.
Tonight the WNC Community said goodbye to a dear friend, Prof. Renee Magrini, who passed away on December 8th after a long, courageous battle with cancer. Renee was a very private person, but she made strong connections with people, and she empowered students (including Sara) to strive for their goals in the sciences. Renee reached out to me early in Maya’s treatment encouraging me to embrace the support groups at the children’s hospital. She said, “It’s hard to explain, but if you go, you will see that it will make a big difference to talk to “people just like me”. It will make you stronger to help [Maya] through the road ahead.”
It’s about the people–Renee knew that, and Maya seems to understand it too. Thank you all for being there–for being a community with so much to celebrate. Warmest of holiday wishes, and merry Christmas to all.
