A Super Hero was Stolen Today…

We lost him. He was supposed to be first.

I stood in the classroom I work in, in the midst of some crazy moments, I peaked on my phone to use a timer and I saw it. I immediately felt the 500 pound person on my shoulders, the one that makes it impossible to move. I told that person, that grief, to leave me alone right now. I can’t do this part here, so I put it away. I can do that now…

Today Devin Suau left us here on Earth, some might say he lost his battle with DIPG… but I know the truth. DIPG stole him. DIPG broke into his body and stole him- stole his smile, his running legs, his body and this morning DIPG stole his last breath and last heartbeat. DIPG stole Devin, just as it stole my Madeline. He lost nothing, it was stolen.

I know exactly what today feels like to Christine, Devin’s mom. I remember the lack of understanding… how CAN the world still be working. How did people get up today and do normal… I wanted to shout it everywhere. I left the hospital with an empty car seat, feeling like I failed at parenting her. I should never only have 2 car seats, I was worried that the nurses might lose her pearl earring. We drove away from Albany Med, and I don’t think we spoke. Amelia had a major meltdown because Madeline was not in her car seat. We got home and Matthew and I just laid in the living room on the floor. Other people took care of the girls, or at least I assume they did. There were tasks to complete, that kept me busy. The world made no sense… I literally could not understand how we all didn’t cease to exist in those moments that she passed. I had to shop, I remember for the first time ever I had money in my pocket to buy whatever I wanted, and I wanted nothing to do with buying clothes. I still see that dress, it was tiny. I lost so much weight in those days… I hardly recognize myself in the pictures. I remember very quickly my brain became numb, like very numb. I felt nothing. I stood at calling hours, right next to my Madeline who was dressed in her favorite outfit with her prized twinkle toes… I hugged people and reassured them that we would be okay. I was floating above myself back then. I couldn’t possibly feel the feelings at that time, I might have imploded. I remember still the children from her Kindergarten class who came to say goodbye… they are now in 6th grade… and she is not.

I know what today feels like for Christine, and I hoped like crazy that he would be first- that DIPG would be halted and stop taking him away.

For all who wonder what to do… pray. Pray for Devin’s family. Take care of them. NEVER, ever forget Devin, remind them that you carry him, you love him, you miss him. Let his family do it their way, just the way they need to. Support them when they honor him, always. Be kind to Devin’s clan… they need love and support and privacy and peace… they need time. Talk about him… bring him along. Take this story and journey and ACT… raise funds and awareness for DIPG research.

I remember a wise mother who lost her daughter just after Madeline, her daughter Ila Jean had been sick for a long time. She told me in all the time that Ila was sick she memorized her. Ila is in her brain, she can tap into Ila’s smell, heartbeat or the way her skin felt. She memorized her lovely. I texted that to Christine, I hope she memorized her baby. I didn’t know to do that with Madeline… and there wasn’t time. Memorize your kids…

I miss my lovely, I hate that DIPG stole her. I know what that missing feels like… and I know what the pain feels like. Send love and prayers… take your sadness and use it as fuel to change this for others. Today the world and future lost a super hero, a boy who should have grown to a man…

Fly High Devin… you are one loved angel. I hope my angel greeted you with your grandma and you see all the splendor of heaven. Save us a good spot up there, and a few calorie free cupcakes…

This one’s for you Devin, one for your momma… you are her star.  Guide her well.  She will do your work, she will live life and bring you along… DIPG might have stolen your heartbeat and breath, but we are gonna change this world for you… your momma will do the big and hard things for you… you are our star.

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