Monday, February 22, 2010

Today: Bad to Worse to Worst to Blessed

Today I woke up exhausted, not liking the gloom out my window, not looking forward to eliminating my Ex's existence on my legal documents, and not looking forward to visiting my hepatologist - an hour away - late in the afternoon. 

So first up... in to see my attorney to get all of my power of attorneys, durable healthcare power of attorneys, living will, etc. revised.  Mr. Attorney said it wasn't smart to put my fiance in such important legal documents, but I told him we weren't like other couples, and it would be fine.  Today I bit my words as we took his names off of all of my legal documents - as if he doesn't exist - on my most important papers anymore.  I signed, signed, and signed, and he notarized, notarized, notarized.  Off we went with new documents, reflecting my new life.  Off we went to Cleveland... ugh.

My mom and I listened to a really uplifting CD on the way there, and I love spending time with my mom.  But the drive is so long.  The visits aren't the worst of it; it's just draining by the time you do the driving, parking, waiting, signing in, etc. But onto to the visit - Of course I saw Dr. Hupertz's resident first, and this resident rubbed me the wrong way.  That's what started it.  Then I saw my doctor.  All in all = lots of tests and procedures to be scheduled.  My I'm-fine-hey-no-liver-problems-here break is officially over.  It seems I get a hiatus every Aug/September through April or May since she tries to follow the school schedule, but it's approaching March... April... May... June, and there's lots of info she wants on me... well, here it comes again.  How's the scans looking? How are the cysts on my kidneys looking?  How big are the varices?  Is the bloodflow blocked even more?  Is the MELD high enough to warrant a transplant yet?  She has questions, and I don't want to give her the time to get the answers.  I don't want the answers in all actuality.  I'm bored with all of this.  I just want to be better.  So anyways, back to today -  then we go to schedule all these procedures.  I always see the same scheduler who I love, but hey look, they decided to hire a new one who knows absolutely nothing.  I absolutely loathe arguing, and that's all we were doing, so I had to have my mom come in and talk to this woman because things were seriously getting that heated.  She couldn't care one bit about any word I had to say, and it was her way or no way, and she was all WRONG.  So we finally got me scheduled, I went downstairs and gave them their vials of blood, and then my mom and I went to the car in the rain, and I slept the entire way home. 

I get home, go to bed, exhausted and hoping I can sleep.  Of course not.  So I take some meds.  Then I'm not sure if it was he or I, but texting with the Ex began.  Things got violent and some very hurtful things were said, some opportunities to simply show love were ignored, and I ended up on my dad's bed crying while he watched TV.  I asked him if this was a normal way for a guy to handle something like this.  That's how the conversation began.  He turned off the TV and we talked and talked and talked, onto and past about 200 different topics, each about said guy and his actions and what has happened and where it hurts.  Then Dad stands up... what is he doing? Getting something out of the bathroom... oh... a tissue.  For me.  Dad got me a tissue.  So by the time said tissue is in my hand, I was bawling, so he just stood there, arms open wide, until I came into them and sobbed.  He told me he was hurting so badly for me and he knows how I've been wronged, how the approach to this breakup was entirely poorly-mannered and months of damage had already occurred.... long story. But he told me how this has been so hard for him to see me go through this, and he loved me, and there was a greater plan.  So I sobbed, and he cried, and I sobbed... into my daddy's strong arms.  His arms meant he knew, he cared, he understood, and everything would be okay.  Hurt and violated, yes, but he agreed with me in my gratitude for the grace of God intervening 3 weeks ago.  It's amazing, it is.

Then I texted my sister to see a movie at 10 with me.  I ached to see Dear John again... to see someone else hurting like me.  But, Nik has to go to bed for early class.  I text my cousin.  I text my bestie.  I remember that Jen, bless her heart, had just gotten out of work, and here she tells me me she'll be on her way just as soon as she stops home for clothes.  She's almost missing a work deadline on her new RN job and is exhausted out of her mind, but she's driving an hour from work to her house to get stuff to come 45 minutes to my house to spend the night and pray with me and let me cry and cry and cry.... and then wake up and make sure I'm just a little better in the morning.  Now that's a best friend.

We are blessed, dear friends, so so blessed.

Saturday, February 20, 2010

November

November
Has taken its toll
And if I know better
There's more to come

And the ocean is waitin' at our backdoor
You know we could leave
But we know in our hearts
There's so much more

We will find a way
To make it through these days
And we will find a way
To make it through these days

And I've fallen face down in the sun
Yeah, I take my chance playin'
Life's little dance and I still don't understand

And people are talkin' at me
Yeah, they make no sense
Wish I could pay my expenses
And get on the next train outta here

We will find a way
To make it through these days
We will find a way
To make it through
With sweet love and prayer

And who's the fairest of us all
And who will fight for you and I
Who's the bravest of us all
And who will hold us when we cry
When we cry

And we will find a way
To make it through these days
We will find a way
To make it through
To make it through
To make it through
To make it through
To make it through

Gemma Hayes

Saturday, February 13, 2010

Anything but this

     Sometimes you have to be apart from people you love, but that doesn’t mean that you love them any less.  Sometimes it makes you love them even more.
          The Last Song movie

     It’s hard when you miss people, but you know, if you miss them, it means you’re lucky.  It means you had something special in your life, someone worth missing.  
          One Tree Hill 7.16

My hair stylist lost her husband to cancer last August.  It was a hard battle with a drawn out ending.  She hasn’t been the same since and probably won’t be.  Last week, I went in to get my hair done, and she stopped and looked at me, knowing what had happened since my mom had seen her the week before.  “It’s like this huge empty feeling right here, isn’t it?” as she stopped and pointed to somewhere between her stomach and her heart.  I nodded, holding back tears.  I didn’t have the courage to ask how long until that feeling fades away... if ever?

     I watched you sleeping quietly in my bed
     You don't know this now but there's some things that need to be said
     And it's all that I can hear, It's more than I can bare...

     What if I fall and hurt myself?
     Would you know how to fix me
     What if I went and lost myself?
     Would you know where to find me
     If I forgot who I am,
     Would you please remind me?
     Cause without you things go hazy
          Rosi Golan

2 weeks ago to this moment, January 30, 2010, my fiance (of 2.5+ years, boyfriend of nearly 5.5) and I broke the relationship.  

We bowed to what we knew was the plan of God, even though it was the hardest thing either of us have ever had to do.  

I cried to God, "Anything but this," and I meant it.  I've known sickness, I've known pain, I've known more than most.  And my continual cry was honest, yet my prayer unanswered.

     As for God, His way is perfect.
          Psalm 18.30

     Yea, though I walk through the valley of the shadow of death, I will fear no evil, for thou art with me.
          Psalm 23.4-5

     In the beginning, GOD.
          Genesis 1.1a

     Him that filleth all in all
          Ephesians 1.23b

We’ve been holding to the promises we know are true, trying to get through this, to the other side... whatever is over there, we don’t know.

     Trust in the Lord with all thine heart, and lean not unto thine own understanding.  In all thy ways acknowledge Him, and He shall direct thy paths.
          Proverbs 3.5-6

     For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord.  For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.
          Isaiah 55.8-9

Right after that night, I made two lists - one of things I will miss, and one of things I won’t miss.  I realize the second might have been inappropriate, but it’s the only way I could formulate some kind of coping at that point in time.

These are the things which I ultimately ache to see, hear, or feel just one more time... I'd give all but my very soul to have these things just for one more second.   The things about you that I miss... The things you did that I’ll be forever so grateful for.  Reasons to miss you even more...  The things I will never forget.  Whatever you want to call it, this is my list.

We fit together like we were meant to be, and I really thought we were.  The grief is worse than losing anyone in death because you’re still alive, I’m still alive, and both of us have to figure out now how to live apart until we can live together again as friends.

You were my first love.  You carried and took care of me, stayed by me, held onto me.  You taught me the existence of love itself, in believing in things much greater than ourselves. You nurtured my growth, enabled my being. You gently tore down my unsurpassable, incorruptible walls. You taught me how to love.

No matter where we each end up, we will always be entwined into the innermost beings of each other. Growing together for a quarter of our lives has left undeniable, indelible marks on our souls. For that, I will always love you.

     Hear my cry, oh God - attend unto my prayer.  From the end of the earth will I cry unto thee.  When my heart is overwhelmed, lead me to the rock that is higher than I, for thou hast been a shelter for me, and a strong tower from the enemy... I will trust covert of thy wings.  Selah.
          Psalm 61.1-4

Sunday, January 24, 2010

Death is a funny, crazy, painful, long-time-coming but comes-too-fast kind of thing

Death.

I've known death for many years now, more than I can remember. 

Whenever someone at church passed away, Mom would dress her tiny girls in their little dresses, white tights, and black patent leather shoes.  She would do our hair really pretty, and then our family of four would head off to the funeral home. On the way, Mom and Dad would go over etiquette as if we had never known manners in our lives.  They just wanted to make sure we were on our "best behavior."  And we were.  We would hold their hands as we stood in line to see the body, and while Mom and Dad shared their regards, we would sweetly smile and return any hugs given to us.  As we walked out the room, we couldn't help but notice the people crying, the sadness, the atmosphere.  Though out the doors, it was easily forgotten.  Afterall, it was a sunny, beautiful day and we would go home and run through the sprinkler or play with our dolls.  Meanwhile, a family's world had been shaken upside down.

Years passed and we began to understand.

I think death is one of those things that you wish you never got old enough to really know...  And once you know it, you never forget when it strikes.

My aunt's mom, "Mrs. Coger" was like a grandma to me.  She came to all of our family events and had such a sweet spirit. She made me feel special, and I loved to talk to her.  I don't remember too much about her, but I do remember her love.  She always carried such a peace with her too...  She died on September 11th, 2001.  Her funeral was the first one I really remember, maybe because I absolutely lost it when I saw her in the casket, or maybe because I was old enough by then to realize what it meant.  Either way, I still miss her sweet spirit and gentle smile.

Then there was my parent's friend, we called him "Uncle Phil."  He got sick at my graduation party and we later found out it was multiple mylenoma.  For years, it slowly drained all the life out of him, and we were glad when his suffering ended. Yet even when he was in the worst pain, serving others was his priority.  I remember one time he had just finished a treatment and was sitting poolside with a hat on.  I was in the pool and my leg cramped up.  I didn't say anything, but he knew something was wrong.  I told him nothing was wrong, but as weak as he was, he got up and said, "Well I'm getting in anyways."  Thankfully, my leg released and I showed him as I told him to sit back down.  Then there was the time my doctor thought seeing an oncologist might help with my blood levels affected from my liver disease.  While I waited in the waiting room, alone, the door opened.  It was Phil.  First I was embarrassed for him to see me there, and then I felt awful because I knew how upset he'd be knowing I was seeing a blood/cancer doctor.  We said hello and he asked if everything was okay, and I told him it was.  Worrying about me was the last thing he needed, but it was probably the first thing he did.  Funny... we were all worrying about him.  It rained at his funeral, absolutely poured.  It was a cold, October day, and the wind and water chilled us to the bone.  My parents were out of town, and I went home to a lonely house.  I couldn't get warmed up no matter how many layers of clothes I put on, so I started the fire and sat and shivered until my little guys Bryce and Declan came over to go trick-or-treating.  While the fire crackled, I remember yelling at God for taking him.  Well, not for taking him but for letting him suffer so long before taking him.  But if someone, even one person, came to God from his life, then Phil would have wanted to die.  He was like that.  But either way, why the years of one of the worst, most ravenous types of cancer?  I hate myself for wanting to ask God that.

A decade or two ago, we gladly accepted Grandpa into our lives and shared baseball games, western movies, and fun family times... He didn't say much, but when he did, it was so funny.  We loved that guy... and just like that, lung cancer, and he was taken away. He died after a long fight in the hospital, and I won't forget the day they took his IV out.  My mind put the pieces together - no IV meant no hydration, nutrition, no IV meds... I'm not one to break down in public, but that's when I finally believed Grandpa was going to die.  My grandma held me in the hospital hallway for what felt like an hour as I just sobbed and sobbed.  Grandpa still lived for weeks after that, though.  Our family stood guard on the oncology wing of the hospital, sharing all kinds of shifts, for weeks.  The docors didn't know what he was holding on for, and we never found out.  Completely not expecting it, I got the news that he was going fast while I was in Anatomy & Physiology class. I remember driving to the hospital begging God to let me see him one more time.  I finally arrived, parked, ran inside the hospital, ran to the elevators, ran to his room, and there was my whole family. My Uncle shook his head as his eyes met mine.  He was gone.  I looked at Grandma and the only empty seat in the room was beside her, so I sat down.  We embraced.  I then noticed Grandma was holding his hand like she wouldn't let go.  A few minutes passed and just like that, she got a disgusted look on her face, turned to me and said, "He's cold."  She got up and left.  That was it.  Grandpa was gone.

Then there was a girl at church just a little older than me.  She had the same name as me, and although I never really knew her, I was well aware of what we shared in common.  I'd watched her my entire life.  She had cystic fibrosis and always inspired me by coming to church even when I saw the pain swelling up in her eyes. She always wore a black dress suit... I'll never forget that.  She was in so much pain, yet she wanted to look nice for God's house.  She was beautiful for that.  Watching her battle with CF was awful.  It was up and down, up and down for years, and of course, she eventually had to succumb to it.  I remember exactly where I was when I heard the news (Muppet Vision 3D in Disney World, last May) and I cried.  When I saw her in the casket, I cried again.  That could have been me.  I thanked God for ending her pain and realized yet again how fragile life is.  And then I asked God why he took her, too, like Phil.  While He let them suffer for years before taking them.  If it's our time to die, okay, I get that.  But then why does it sometimes come with the most tragic, painful, atrocious sufferings the world has to offer?  Why doesn't God stop it?  I know He can.  But as I said, I hate myself for even questioning Him on it.  The Word says, His ways are higher than our ways, His thoughts higher than ours.

And I remember my precious Nana died almost a year ago to the date.  January 28, 2009. Maybe a year prior, we were out to lunch (like we always did) and while she was going on about her aches and pains, she addressed death for the first time in front of me.  She said it'd be easier than being the old lady she was, with all of her problems.  I interrupted her and told her to stop.  I said, "Nana, you are not going to die.  Don't you want to see me walk down the aisle?  Don't you want to hold your great grandbabies?"  That stopped her for a little while, but I guess it was just her time to go.  Nana & Poppop are "snowbirds" so when they went down to Florida in October 2008, never in a million years would I think Poppop would come home early - with Nana in a casket.  In fact, the thought of it now even makes me sick.  I had the relationship with my Nana that most people can only dream of.  I won't write too much here since I have pages and pages of memories on earlier posts, but she was one of my favorite people in the world.  She got me, and I got her.  She took pride in teaching her "Mandy Mine" a good portion of everything I know.  She was classy, beautiful, and loving.  Now, approaching the anniversary of her death, it takes my breath away to see my mom missing her so badly because I'm sure her very own daughter would miss her more than her granddaughter - and I miss her like the going-to-vomit can't-stop-crying take-the-pain-away type missing.  It's been a year, and although it doesn't feel as overbearing, it hasn't lost its entire heaviness, and it definitely hurts like crazy.  Her life was a big one in every way, and there is no way any of it is going to be forgotten anytime soon.  I still cry for her so hard I feel like my stomach will come up through my mouth - death is hard.  But thank God, I know I'll see her again someday. I can't wait, I really can't.

Then last night, less than 24 hours ago, God took a friend of mine.  His name was Gregory, and his sister was Leslie.  They moved here from Chicago and we went to church together.  Our families became friends, and then in the beginnig part of 2008, the doctors found out Greg had a brain tumor.  He went from worse to miraculously better to spiraling downhill fast.  His parents, sister, and various friends from church stayed at his bedside every day of these last years.  Yes, a lot of us from Akron went to Chicago just to cheer up a friend.  That's the good kind of friendship, I'm sure of it.  A bunch of his Ohio friends even surprised him with a party in Chicago (that made the news!) for his 20th birthday.  But now he's gone, and again, we are wondering why he was in such constant suffering only to die.  I know he's enjoying heaven, and although I'm not feeling my best right now, I know I need to go be with his family in Chicago.  Friends get each other through stuff like this.  Friends and God.  There will be so much of both this coming weekend, I'm sure.

And to think this is all just a normal part of this crazy miracle called life...

Thursday, December 24, 2009

Her first Christmas in Heaven

It's almost her first Christmas in Heaven. She feels so far away, yet somehow, so right here. Her light shines on, warm with her memory. She lives on in everything we do, yet the void still aches, the pain is almost anew. What I wouldn't give for one more minute with her.

Love your loved ones - you never know if it's their last Christmas on this side of life. Last January, she left us. Last December, we wouldn't have believed it.

Shine on us, Nana, heal our hearts with your ever present love and grace. I miss you with a void not even time could heal.

What's it like to spend Christmas at the throne of God? I wish we were there together. I wish for nothing more.

Christmas, 2006. 
After Nana passed away, I kept the jacket she had just unwrapped in this picture. 
I remember ordering it online at Old Navy for her.  I thought it was cute. :)

Nana with my uncles & my mom

Christmas, 1992 - Disney

Tuesday, November 10, 2009

Heaven is the face

Heaven is the face of a little girl
With dark brown eyes
That disappear when she smiles.
Heaven is the place
Where she calls my name
Says, “Daddy please come play with me for awhile.”

God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m aching for.
God, you know, I just can’t see beyond the door.
So right now...

Heaven is the sound of her breathing deep,
Lying on my chest, falling fast asleep while I sing.
And Heaven is the weight of her in my arms,
Being there to keep her safe from harm while she dreams

And God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m longing for
God, you know, I just can’t see beyond the door.

But in my mind’s eye I can see a place
Where Your glory fills every empty space.
All the cancer is gone,
Every mouth is fed,
And there’s no one left in the orphans’ bed.
Every lonely heart finds their one true love,
And there’s no more goodbye,
And no more not enough,
And there’s no more enemy.

Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone.
Heaven is the place where she takes my hand
And leads me to You,
And we both run into Your arms.

Oh God, I know, it’s so much more than I can dream.
It’s far beyond anything I can conceive.
So God, You know, I’m trusting You until I see
Heaven in the face of my little girl,
Heaven in the face of my little girl.

Written by Steven Curitis Chapman after an accident killed his 5 year old daughter last year. 

This song (and story) is especially striking to me because his beautiful little girl could have been me... in fact, it was me... only I lived to tell my story.  Lived to come up with questions, lived to cry myself to sleep, lived to realize life is not fair.  But I guess when the children don't make it, it's the parents who take on the story, questions, tears, and realizations. The agony of it all.

 Here's the end of my story...

Heaven is the face of a little girl
With dark brown eyes
That illuimate the world
Heaven is the place
Where she is now free
Where it's always enough, she'll have no tears
Only life

Heaven is the sound of her sighing in peace
Lying on my chest, rocking her to sleep as I sing
And Heaven is the air she can finally breathe
She's found the answers and all her hopes fulfilled

Heaven is a sweet, sunshiney day
And a thousand other little things I miss with her gone
Heaven is the place where she waits
She'll take me to you
One day,

       right into Your arms