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Tuesday, May 27, 2014

Christian Graduated Kindergarten

Christian graduated kindergarten!

And it was such a big deal.

Probably really only to me. I know a lot of people think we make too big a deal about celebrations and graduations and kindergarten is hardly worth celebrating. Those people might think having a graduation for kindergarten might be too congratulating for accomplishing nothing but kindergarten - play dough, ABCs, and snack time. Big deal. Those people might think graduation ceremonies should only be reserved for completing high school or college. Surely not for little kindergartners smelling of graham crackers and sandbox.

I completely disagree.

My little boy graduated. And he had a ceremony and everything. We were there in the front row and leading up to it I couldn't help but remember almost five years ago the first night in the hospital when the doctors told us there was nothing.

We aren't transporting him unless we can get a pulse.
The EEG is flat.
He is probably brain dead.
We should consider letting nature take its course should, say, his heart start to give out.
We don't know if he'll make it the next twenty-four hours. 

And then I'm sitting there in the front row watching him receive his little graduation certificate and a token for a free scoop of ice cream from Culvers.

His aid, who loves him so much, dressed up just for him. 

Everyone loved and kissed on him. People I didn't even know but that had come to know Christian. He has got his own crew now. And when he finally received his lei like all the other kids and his aid, dressed up in her pretty skirt, wheeled him away, and everyone cheered. Even people in the back of the cafeteria. Other kids' parents came up to us when the ceremony was over just so they could say congratulations to Christian. 

I had tears but I didn't let them go. The ugly cry could have happened, and trust me, it was there beneath the surface, but I held it in. I didn't want to embarrass Christian in front of his friends, ya know.

No, it's not what I pictured. And seeing him sit in his wheelchair next to his friends - "peers" that are his age - a typical five year old is so foreign to me. See, Christian is like this really cool baby who likes to snuggle and makes baby sounds sometimes. Only he's five and big. So he's a big, cool, baby. But those kids in his class? They're That's what he's supposed to look like? There's no way. Those kids looked way too big. And active. And they probably smell like graham crackers and dirt.

The end of the year, as I found last year, is bittersweet. There's always a moment that pronounces just how not like the other five year olds he is. Last year it happened when we went to the zoo and all the other kids ran off and the other mom, running after them, chatted about play dates and what their kids were doing for the summer. We were on our own path. It became our own zoo trip, split from the crowd. Oh, yeah. I forgot for a second that we're different. 

I mean, obviously I know we're different. We live it every single day but little things will remind me. Not just the chair or the g-tube or the obvious things. But the little things that divert and separate our paths from the rest of the crowd catch me off guard without me realizing what's happening. This year it was watching him next to his friends - these active, ants in their pants five year olds. Oh, he's supposed to be acting like that? He's supposed to be that big, stand that tall? There's no way. I don't believe it.

Christian doesn't smell like graham crackers and dirt. But he smells warm and snugly. Like a big baby. And he had a really great year full of field trips and friendships just like all the other kindergartners. Even more so with his SPED class. 

What I know for sure is that he is loved. He is loved by all who meet him. He exists and he breaths and he smells like a baby. He smiles and adores his aid. He might not play in the dirt or eat graham crackers but I've picked him up from school with a red tongue from strawberry Eegees and he might still have some green paint on his toenail from a class project. He's part of that school and they embrace him and love him. He has done so well transitioning and tolerating a full day of kindergarten and next year he'll be riding the school bus! 

So my baby graduated kindergarten. And nobody can tell me it wasn't worth celebrating. We didn't think we would have this. However different it might look from what we pictured, he is here. He is alive. And he is totally worth it. 

First and last day of school.

Monday, May 5, 2014


I went to a funeral last week.

His name was Santana. He nearly drowned about seven years ago. After his near drowning he struggled a lot. Santana's was one of the first stories I followed.

Fresh out of our trauma, his story scared me.

Wait. You mean these kids don't fully recover? You mean they'll be profoundly disabled? Suffer seizures? Their bodies will transform and their faces will look different?

Not my son.

I thought.

Then my son was profoundly disabled. He had seizures and his bodies twisted and toned. His face looks different and somewhere along the way I realized there was so much about Santana that I saw in my son.

At first it terrified me. But after learning to love and accept my son as he was going to be it wasn't so hard. I went to meet Santana while he was sick in the hospital a few years ago. He had soft skin, warm from a fever. I wasn't terrified. I just felt connected in some strange way. Those big brown eyes - they were filled with life. It was a life of struggle but it was life, nonetheless.

His mom, Lindsey, and I have attended the retreats for near drown moms in Seattle. Over the years I watched Lindsey offer support to other moms and kids, no matter their ability, even though Santana had a rough go of it. Even though Santana suffered botched surgeries, long hospital stays, and crippling seizures, Lindsey still found it within herself to offer supporting comments to other mothers.

And when I met her in person she was so goofy and bubbly and fun! Although her life with Santana was full of pain and struggle, she managed to be all those things.

I waited over a week to write about Santana's funeral even though it's been brimming since. He passed away peacefully in his mom's arms after getting very sick and his body showed signs of shutting down. He was tired on this earth and it was time for him fly.

So I drove up to his funeral service. It was an unseasonably rainy and windy day. The service was held in a building of windows so we could see our beautiful desert. The windowed room was packed wall to wall, standing room only. Dress code was Superman shirts or the color purple for drowning impact awareness. There was a sea of Superman, Christian and I joined in our Superman shirts, as well. It was a sad day but there was hope in the air. Santana was free. I'm sure everyone in that standing room only building was visualizing Santana running free. It was surely not the end for him. It was just the beginning.

He passed away on the morning of Easter Sunday. The day of Resurrection. No better a day for such a Superman.

The service was beautiful. And after it let out everyone released purple balloons into the grey sky. There were so many! Santana had a motorcade escort to his final resting place. At the grave site I heard his grandmother whisper, "I love you so much," before she put a flower on his tiny coffin adorned with a hanging Superman cape. Through the wind and the traffic and the chattering kids, everything was silent in my ears except for his grandmother whispering.

You don't understand. You might think our life is hard, that these kids have such painful lives but they are filled with so much love. And if you think of all of the people out there who go through their entire lives feeling unloved and like nobody cares about them, isn't it amazing that these kids will never feel that?! They will only feel complete and unconditional love, no matter how short their lives might be.

I live in a world where kids die. I say this often, probably more as a coping mechanism so I can protect my own heart. And Santana isn't the only child like mine that has passed away over the last year. I think there might have been five more children and two that almost made the flight but decided they wanted a little more time here on earth. I'm well aware that Christian's life might be short. But, dammit, if he doesn't feel love and adoration every single day, every second of his life.

I was talking with a friend one day about this subject and she said, "Isn't it better to feel loved, even though your life is short, than to go through a long life never feeling loved at all?"

I believe with 100% certainty that Santana was loved every day of his life. And that funeral service, fit for a Superman, was filled with so much love and sadness and joy for his freedom.

I often wonder about parents who post really benign complaints on social media about their children having minor issues or fussing with really unimportant aspects of life. I wonder if they know what it's like to give your child's body back to the earth. To have to walk away. To be the mother of three, when on this earth there are only two children. Every family picture is missing a child. The observation about family pictures isn't meant to be shallow but to understand what it's like for a mother and a family suffering such profound loss.

I can also tell you that where Santana's journey ended, we were beginning ours. Pulling out of the church and into the motorcade I noticed right across the street was where Christian had his first HBOT session three weeks after his accident. The irony was not lost. And I don't know if irony is the right word. Coincidence, maybe? It was sobering. But all of our journeys start and end somewhere, don't they?

Santana's journey was filled with love. This I know for sure. There were hundreds of people in attendance, including some of my near drown moms! From Las Vegas, from Oklahoma, from Tucson, we came from all around and when the service ended we waited for Lindsey. These Mamas right here are the strongest I know.

And sweet Santana, you touched so many lives. You were one of the OGs! Now everytime I see someone with a Superman shirt I think of you. Everytime I brush a tiny mohawk into Christian's hair, I think of you.You paved the way for some of us and for those that might unfortunately come into this world. I know you are playing and laughing and watching over your family. They are blessed by you. We all are. 

"I would rather have thirty minutes of wonderful than a lifetime of nothing special."
-Shelby, Steel Magnolias

Sleep softly, Santana.

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