Thursday, July 10, 2014

sharing happy



I have often felt a guilty pang sharing the happy moments.


Sharing Happy 1


Because of Trevor’s medical challenges I am very sensitive to those that are living some of the darkest moments of their lives right.this.very.moment.


Sharing Happy 2


I never want anyone to feel like I’m rubbing our “happy” in.


If that makes sense.


Sharing Happy 3


It also drives me bonkers that people see a snap-shot in time and so easily believe it represents the whole.


Trevor has many, many happy moments.


I cherish them deeply. He has taught me how to appreciate glimpses of beauty in a way that would never have been possible without him.


Sharing Happy 4


But our happy is always mingled with tragedy.




In so many of those happy moments we see glimpses of the boy he could have been…


and our hearts smile-grieve.


And long deeply for the day when Healing washes over him…and us all.


Sharing Happy 5




coupled with distorted perceptions…


could never share the whole story.


But nothing other than living IN the story can ever fully capture it.


my cuties


This past year in particular…I have been overwhelmingly drawn to embracing the happy moments. Cherishing them even more. And sharing them too.


Maybe it’s because Trevor could have died last year. Indeed, his sister still has nightmares that he did. So scary was that night.


Maybe it’s because we’ve faced some other real health scares this year as well. The kind that effect Trevor but don’t belong to him.


Sharing Happy 7


Maybe it’s because this world is so saturated with sadness and groady and bitterness on every side that sharing our happy moments with each other isn’t only sweet…


Sharing Happy 6


it’s necessary!





These thoughts have been swirling in my heart for a while. Sharing them today was inspired by this post. Which you should totally read!

Thursday, June 26, 2014

they still throw me for a loop



Most of the seizures Trevor has had throughout his life have been quick, jerky movements. In seizure-ville, these are known as Myoclonic Seizures. I've seen hundreds of thousands of these seizures since he was 7 months old. I hate to say that I've grown comfortable with them. Because I'm not comfortable with seizures period. But I know these nasty little beasts. They are predictable for me. I know when to worry and when to just give him cuddles.


He has yet a new seizure type emerging, though. And it’s totally throwing me for a loop. I hate them. They are so much more visually disturbing. His right arm raises up. Not straight, though. It’s crooked. Shaped like a half moon. And sometimes it will rest on his head involuntarily. Almost like he's patting himself. His head turns slightly to the right and his eyes are…just weird. Everything slows down. His movement, his speech. To me, it feels like I'm watching a robot "power down". His body kind of hunches over. And he moans. It doesn't really last that long. Anywhere between 1 to 3 minutes. But compared to the quick myos it feels like an eternity. And I hate them.



Wednesday, June 18, 2014

because I’ll never get over him


This morning as I was preparing to watch Trevy’s K class perform their end of the year celebration, a memory swirled in uninvited. In my mind I was swept back nearly five years ago, when a young woman asked if she could meet with us. We invited her to our home where she proceeded to apologize for gossiping about us and then justify why she did. She was disappointed in Jonathan's leadership, see. So the gossip was of course warranted. I’m still not quite sure why she ever tagged the I’m sorry on there. Clearly, she wasn’t.


When we reminded her that just two months prior Trevor had survived having half his brain she removed...her response was...


It's been two months! Aren't you over it?


I'm not sharing this to beat up on her. maybe a little. Wink.


But also, this morning as I was preparing my heart to watch Trevor perform his K celebration play - I knew that he would seize. Stress is a trigger for him. And standing in front of others is a stressor. I knew that the seizures would mostly be small and miss-able. A piece of me hoped that maybe the Holy Basil would do it’s thing and I’d be pleasantly surprised.



Yet as I sat in the audience...I did not miss them. I watched his body jerk and quiver. I observed his right arm and leg lose their coordination & purpose as the seizures clearly marked their territory in his head. I watched him lip smack and look lost. His sister leaned against my arm. So beautiful with her sun kissed glow and dripping sweetness. In a hushed whisper making sure I saw too. I nodded, weary and grieved that she has to feel this. Wordless heaviness. My heart clenched as he yawned. The seizures raging inside taking a toll on his little body. I watched him stare into the distance. Almost as if he was trying to remember his lines. Only he wasn't. He knows every word to every song. When the monster in his brain isn't warring against him. I have no idea what other parents witnessed. I'm sure they were only noticing their own children just as I was fixated on mine. To me, it was like watching an epic battle unfolding. The hero, an adorable amazing little boy. The villain – epilepsy. I saw that little boy smiling with joy when the fog lifted for a second of victory here and there and lost when the fog descended again. I felt my shoulders sagging as if the weight of his war was tangibly pressing down on me too. Indeed, it was. And I purposely pushed them back up and forced myself to smile big at him and sign I love you - in case he could see me through the fog. I wanted him to know that mommy was there with him. That he was NOT alone. And that I was cheering for him. And that I saw. I saw everything. I knew. I deeply believe he knows that. He may not understand it fully…but I believe he knows that I am his chief advocate. I willed my energy to vibrate off my heart into his. To infuse him with courage and love and hope and endurance. That he might feel and know to his very bones how proud I am of him.



This boy.


He IS a warrior. And he IS one of my heroes.


I had thought recently that had she had that same conversation with us now. That girls from five years ago. If she blasted us today rather than then…I thought…well maybe she'd have a point. A leg to stand on.


Today reminded me that nearly five years later...I'm still not "over it". Because I'll never get over him.