moving forward

navigating through the life that was and moving into the life that is

Now

on June 18, 2013

I wrote this original post in March

There are just days I long to be understood. Long to understand myself. The depth of the experiences I have walked through and the ways it has changed me and continues to change me are countless. I could not have ever imagined what tragedy, death, and loss can do to a person. The trouble is that for me, I’m doing this on very uncharted terms. I am not the only person who has lost a spouse. I understand that and pray often for other people in my situation. But I often feel like I am the first person to lose their spouse and survive with a severe traumatic brain injury. I know this is not true, but there is a loneliness to this experience that I long to share with someone.

And I don’t feel sorry for myself. I just feel desperate for someone who can really say, “I have been there.” A person who really knows what obstacles and subsequent growth your brain goes through. There are the obvious ones: my brain could not tell my legs to move and through physical therapy and making new paths in my brain, I became able to send that message from my brain to my legs. Then there are the invisible ones; reasoning, planning, focus, decision making which have all improved immensely

“Time won’t fly
It’s like I’m paralyzed by it
I´d like to be my old self again
But I’m still trying to find it” – All Too Well – Taylor Swift

I believe I am who I was. The essentials of me, have not changed. I still love fiercely. I am still focused on my life, on succeeding. But there are these other things that I don’t so much have control over right now. And I’m not very good with loss of control. I want my brain to focus. I want my brain to be ready to teach. In moments like this I go to a place. A place I go every once in a while. Not often. But it is a lonely place. A sad place. A place where I cry out “why me?” “why now?” “why this?” And God is very deliberate in saying “why not, Sandra? Why not?”

“Yes, but why me?” And again I hear His response, “why not?”
In this moment I don’t feel anger or discouragement like you would think. I feel a sense of peace and of clarity. Why had I never asked myself that question before? “Why not?” Tragedies happen. Every minute of every day. I was not exempt. I am not exempt.
And now it is June. June of 2013. I don’t even know where that time went or how that is possible. 19 months without the love of my life. 19 months of waking up to this reality. 19 months of what has honestly been my own personal hell. Nothing is the same. On Father’s Day I go to the cemetery. On Father’s Day, my son asks when his daddy is coming back from heaven. On Father’s Day, my heart breaks all over again. I want to see him. I want him to tell me that it’s going to be okay. I want him to be strong for me. His birthday is in 9 days, he would have been 37. And I can imagine us, out with friends, dancing, laughing, talking trash, haha and it still brings a smile to my face, through broken tears and shattered dreams. I know there is life after and I know he wants me to live it, but I still hurt. I feel like I mourned and grieved over his physical presence in my daily life, but I forgot to mourn our friendship and our marriage. So here I am, having an incredibly difficult day, accepting this new reality, mourning this new loss.
Then I jump on Facebook…
If you have know me for a long time, you probably know music is like lifeblood for me. I have used this word before but let me say the definition again 😛
a life-giving, vital, or animating element
Music is vital for me. It makes me heart beat. Reminds to feel and live. Awakens me. This has been a truth for me ever since I was little. Ever since I was a tiny tot performing at Mrs. Hoey’s piano recital “and I just thank you Father for making me, me. Cause You gave me your heart…” And oh so many performances of Maniac while writhing on the floor and the choreographed dances to Tiffany’s “I think we’re alone now.” You get the idea. I have a father who exposed me to such great music my whole life. Al Green, Buddy Holly, Mannheim Steamroller, Bob Dylan, Lionel Richie, Genesis, and on and on.
Here is what I find on Facebook:
This is a song I was inspired to write as a gift to two beautiful friends of mine – Sandra June Walker and Billy Wilkerson. Some of you know their stories…and although they are different they share a common theme of facing adversity and tragedy with courage. I am inspired by the lives of these two lovely human beings. I was going to try and record this but I just didn’t want to wait to share it with them so I did a rough video recording at home. Thank you both for inspiring me as well as so many others with your honesty, courage, humility and gratitude. Your lives are gifts to so many. I borrowed the title of this song from a phrase I hear Billy and Sandra use often – “Forward Motion” – From my heart to yours…peace and love.

Forward Motion (Billy and Sandra’s Song)
by Dustin Ah Kuoi
VERSE 1
See, when you speak, yeah your words carry much more weight, much more weight
You’ve faced a dark night but still your steady making your way
I’m cherishing the sun a little more as it brings in the day, a new day
And I think of you

CHORUS
People like you have a fire in their eyes
And a spirit like a phoenix or the rising tides of the ocean
I’ve got dreams still pushing up against my walls
And this fragile flesh and bone is trying to give its all
And you help me believe in forward motion
You inspire forward motion

VERSE 2
Somewhere somebodies on the floor making friends with the end
They’re wondering if they’ll ever walk, ever breathe again
But you’re a living melody that fills the atmosphere with a light, with a light
To see, to hope, to feel again, to keep your heart engaged and alive

CHORUS

BRIDGE
Every sleepless night, every tear you cried, every sad goodbye
I can’t imagine how you were hurting
Standing there where nothing was certain
Every warm hand
Every sweet word
Every present friend
All the fears that were heard in the air
My friend I wish you never were there
CHORUS
There are no words to rightly express my gratitude, Dustin. Thank you. The song is beautiful. So so beautiful. Thank you for reminding me of Forward Motion.
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3 responses to “Now

  1. Andrea Denton says:

    Sandra-I met you today at Tripp’s 5K and I can’t get your story off my mind. I’m so glad you came up to us and told us your story (by way of compression gear). I do hope you join your local chapter of Mom’s Run This town to get some much needed support as a running mama. Praying for you and your family! Feel free to email me (or find me on facebook).

  2. Here is where you can find me 🙂

  3. Peggy elenbaas says:

    Thanks for sharing. You continue to inspire me. Peggy Elenbaas

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