Friday, May 10, 2013

Bleeding Piano Keys.

Black and white keys truly speak when I can't. Fingers running at speeds I can only remember being able to produce so long ago... childhood moments turned into only dreams now. Timing being kept by the up and down of a gentle foot on the pedal or the floor.
Desire. A deep desire to return to those days as a little girl, if only for a moment, when I could sit down at that bench and bleed. To share my deepest thoughts and emotions on the keys of that piano in a way that only that instrument can capture. I still dream about what it would be like to do it again...

 The piano has always awakened the deepest parts of my soul Mom, but as " A River Flows in You" by Yiruma came on tonight... as I was transported back to a day with you in Carmichael... I couldn't help but be shaken by the sound even more than usual.
The song:
I have no idea what stage we were in, but I remember the fevers and the tears were constants at this point in our nursing home visits. All I remember otherwise was a picture one of your therapists put up on the wall, of you petting a horse while in your wheel chair. And I remember walking through that parking lot one weekend, headphones in and Yiruma's piano piece playing in my ear, trying my best to muster emotional strength. Trying to brace myself for the smells, the unpredictable,the childish games, your tears or your sweaty palms. All things I never thought I'd miss to the depths that I do.

Mother's Day is Sunday, Momma, and I  truly don't know how to feel. My last two Mother's Days with you were not how I wished they could have been. The most recent, our last on Earth with you,  was plagued with tears through church service and fake pink flowers on your hospital bed-side table at Whitney.
The one before that... honestly all I can remember is the guilt I felt. We had to eat at McDonald's and went shopping (very slowly I might add) because I was still in a hip-to-toe bright neon cast and could barely muster the strength to be out and about. I know you didn't really mind deep inside, but as your daughter it hurt that I couldn't give you the day you truly deserved that year.

Mom I listen to Yiruma and remember the tough moments, the moments of fear for your future, and reflect now in deep appreciation for them. Because though they were tough, they were still moments. Still pieces of time we could love on each other and spend next to each other. With each other in all possible ways.

Moments where the words "Goodbye Beautiful, Your Britty Loves You" didn't just flow through empty space, but actually into your beautiful ears.

I am thankful though, that Heaven probably is planning the best Mother's Day celebration possible--the one you and so many other loved mothers, grandmother's, chosen-mothers, second-mothers, spiritual-mothers, deserve. I am thankful for all our moments together, because deep to the core of those moments, reflected love. Love that conquered fear, love that gave strength, and love that gives me the ability to reflect tonight on the hard times and the Mother's Days as blessings.

This song... it reminds me of our times of growth, of our family's story, and of the love we shared... in your final months especially. What a smile it brings to my face...
Love Always and Forever
Your Daughter

Thursday, May 2, 2013

Real Risks and Quiet Thoughts.

Hi Momma,
I've contemplated whether or not I wanted to share this aspect of my current situation publicly for a while now. AND THEN I realized, if I really love authenticity like I say I do, it would be wrong not to admit my weaknesses and share my thoughts. Hence what came out below:

I know my Cerebral Palsy is an unchanging reality of my life here on Earth. Until further notice, it is medically incurable. But even though I recognize it is out of my control, I still get frustrated with my health, because realities have changed.

As a kid Mom you know, options for improvement of the effects of my CP were endless: surgeries,leg braces, physical therapy, occupational therapy, home programs, muscle relaxant injections, and assisting devices. And I've done them all. Now, from the looks of it, my options for walking improvement are becoming far more limited. My feet would break the leg braces. My muscles are too tight to rely on therapies alone. Home programs, while trying to fit in as a somewhat-normal college student, is almost impossible to uphold.
So we must wait. We wait for more appointments. More tests. Probably more X-rays. And then we wait for results. We wait to hear from the doctors on what to do next. We have to wait to figure out what my new reality is going to be... how to live within new limitations and an ever-changing and in-pain body.

Already, a day after a very important doctors appointment, I slowly and very cautiously shared the conclusions with a small group of lovely people in my life. The general response came out to be something like, "Well, you can't do much at this moment right? So just do whatever you are doing now to make it through to June"(my next appointment).
...But the thing is, I don't think people understand the implications of that statement. The amount of pain I will have to endure.The fevers/ high blood pressure that comes and goes because my body is trying to fight off the pain. The frustration with being reminded every moment that you are sick. You are weaker, More dependant. .More isolated and harder to understand. More different than everyone around you.More different than the ones you love the most.

 It's not just making it through, it's cherishing every moment like it's your last chance to do it as you wish, but living with the hope that it won't be. It's more than just making it through. It's figuring out how to make your life count. Despite what may come or what is present. To be "you" when you can't feel like the "you" that you know. (how does one even do all this at every single moment of the day?)

To say "just do what you do to make it through"  is a lot more complicated of a process than one would think. Pain has and can change your opportunities and how you are physically able to spend your time. It means that I constantly have to struggle with how to make the most of absolutely everything, because who knows at this point where the pain is going to spread to from here or when it will strike next. To live in the balance between recognizing the realities and living in the hope of possible change. And the best part, trying to do that without scaring too many people with raw emotions or true pains.
 While I completely understand the logic behind the responses of others to "just making it through", I pray for the day when we would all (myself included)  actually remember to put ourselves in the others shoes, even if they aren't the right size. Because that's what love is.

I mean look at me...
 I came up with every excuse not to post this because I'm afraid someone won't understand or take what I say differently than the way I meant it But what if someone needs to hear this? What if my openness encourages someone that they don't have to have it all together to be loved-- because I sure don't. I need to stop being afraid of having a real-life. Mom, I need to be okay with giving people the truth. The truth that everyday I wake up with no clue how to make this all work.

No idea if I will be able to walk all day or end up calling someone almost in tears realizing that this pain I'm experiencing is real....that it's not some made-up-story, or something I can run from. It stares me in the face every hour of every day... and that's not something to be sad about, but something to embrace.

 This is what I've been given and I'm trying, sometimes more successfully than other times, to be real about acknowledge that I hurt, struggle, fear, doubt...that I am imperfect and broken...And then pray. Pray that others, the ones I love,will be there love on, hug, and encourage me despite my real life.

The Lord has never let me down in this prayer. He has been extremely gracious with giving me the cream of His crop to call my dearest, closest friends and blood and chosen family. A gift, so undeserved, that will always bring me to tears as I fall asleep at night or  pray for them daily.They are the reason why I can be mad at my body, but not at my life.

Mom, I know this God stuff was never your thing but I want to leave you with a piece of my heart that keeps me encouraged for the future.They are words that emulates who I hope one day to become:someone who is completely abandoned to God's plan, despite the world's attitudes.
(my morning prayer)
 "Hey God, I recognize my pain and my struggles. I recognize the shooting pain from my head to my sensitive feet. I recognize my pain and struggle...and I will not run from it! It will not defeat me because I am Yours. I thank you now for life despite this pain. I thank you for breathe to be able to feel this pain and recognize my humanness, my need for Your Promises and Your Love. My prayer today and everyday is that, in a thankful response to Your love of my shattered body and broken heart, I love others deeply. Spilling out my utmost gratitude and deep, real love for those I encounter, my family both chosen and blood, in the ways that they need.Lord use me I beg to bring others to Your side.  I pray that my circumstances do not chain me and prevent me from holding Your hand today. I pray that my body does not prevent me from seeing Your glorious work and plan for my life. I abandon every piece of myself to You regardless of what struggles and emotions come my way.You are in control and I thank you for the gifts you have for me today. Amen"

Maybe, just maybe, this post was God's way of using me to love on somebody today, in the way they needed: in real risks of authenticity.
 Love Always and Forever
 Your Daughter,