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 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

Saturday, February 06, 2010

Through troubled times

When I'm alone and the light slowly fades
Cold with the night closing in
I know the shadow of almighty wings
Lord won't you send them again

Lord send your angels to watch over me
I'm so afraid of the dark
Lord send your angels to watch over me
Wrap me in sheltering arms
Shield me, Keep me
Hold me safe in your arms
Lord send your angels to watch over me
Wrap me in sheltering arms

Sometimes the child inside of me cries
With fears of the dangers unknown
And questions with answers I can't seem to find
Then you send your angels to me

Lord send your angels to watch over me
I'm so afraid of the dark
Lord send your angels to watch over me
Wrap me in sheltering arms
Shield me, Keep me
Hold me safe in your arms
Lord send your angels to watch over me
Wrap me in sheltering arms

-.-.-.-

The past week has been the worst week of my life, the deepest valley I've ever walked through, the hardest path of God's will I'll probably ever have to choose.  But, it's also been the week I've grown closest to our God.  If we lean on Him, through the troubled times, we can grow.  Even in the darkest night, grace and hope surround us.  As we cry out to God for that peace that passes all understanding, angels close in around us.  Then Jesus comes near, wraps his arms around us and says, "It's okay, dear child.  I am here.  Remember, my ways are higher than your ways.  Wait upon Me, and I'll renew your strength.  You'll mount up with wings like the eagles.  Just wait.  Trust in me, and I'll direct your paths."  Yes, waiting on and trusting in His plan can be so hard, so scary... but Jesus is love, and His word tells us that perfect love casts out all fear.  It's amazing the strength we can lean on, the mercy we have all around us.  Serving God can be so hard at times, but we know that He knows best, and He loves us, His children.  The Word says His plans for us are good and will give us hope. 

Angels, love, peace, strength, direction, grace, hope... how wonderfully our God provides.

Thursday, December 03, 2009

Thanksgiving shouldn’t end

Since Thanksgiving shouldn't ever end, I guess it's not too late to share a post of Angie Smith's I found in the (In)Courage blog.  It really inspired me on Thanksgiving - click here to read it. 

An excerpt:

I've felt called to spend some time studying gratitude in an effort to work on my own negative tendencies and the Lord recently gave me an amazing glimpse into Scripture.

In Luke Chapter 17, Jesus is traveling to Jerusalem when He hears ten men with leprosy calling out to Him in desperation. Most likely, they didn't expect a response, but they were used to announcing their ailment whenever anyone walked by.

Jesus did respond, and He instructed them to show themselves to the priests. It says that as they walked, they were cleansed.

The Greek word for cleansed in this passage is "katharizo," and it means "to cleanse by curing."

After they are healed, one of them recognizes that he is not leprous anymore (the Greek for healed in this passage is "iaomai" which means to be cured) and goes back to thank Jesus.

So all of them are not leprous anymore but only one has returned to thank the Lord.

Upon falling at Christ's feet, Jesus tells him to "Rise and go; your faith has made you well." (Luke 17:19)

I was intrigued by the fact that while the rest of the Greek words refer to healing of a sickness, only the leper who returns is told that he has been made well.

So what is the difference?

Actually, quite a bit.

The original meaning of the word "well" in this passage is "sozo," and it means more than a physical healing.

It means that in the Biblical sense, the man was saved.

It seems gratitude is an intimate part of our salvation. This doesn't mean that our salvation is earned by it. But it does challenge us to think about how we are living it out that gift every day.

I want to encourage all of us to fall at His feet in gratitude, if for no other reason than that we are "sozo." Loved from before the beginning of time.

Let's be like the leper who returns in shameless gratitude, spilling out our thanks as we lay at His feet.

After all, He has made us well.

Speaking of Angie, her book is coming.  Have you preordered it yet?  I have.  It's called I Will Carry You: The Sacred Dance of Grief and Joy.  So. Excited!

And one last thing... her latest blog post brought me to tears...  Permission to Hope.  Start from the beginning of her story over at her blog if you're unfamiliar.  In a nutshell, she has three beautiful little girls and when she was pregnant with the fourth, they found out she might not live until birth.  She ended up living for a couple of hours and they named her and loved her and then lost her.  Angie is pregnant again, and here's the highlights of what inspired me and quite honestly, resounded in my heart and soul because I've been there... I hope her words can touch you too.

It has been really difficult to go through this again, and I really covet your prayers as we face our fears. I know that the Lord is trustworthy and that I can believe in His goodness but it's not easy. Yesterday I spent a long while crying on my closet floor as I processed the fact that I need to pull out my maternity clothes again. I think I am reliving things in a new way as I sort through the things I wore with Audrey, tucked away in a corner I haven't really faced. I have the kind of memory that can smell perfume across the room and remember sitting next to my third grade piano teacher while pounding out a horrific version of the love theme from Romeo and Juliet. She said I was really good.

She lied.

Turns out she was in love with my father (yes, we let her go shortly after gifts starting arriving for him...my mom was not about to eat the cake she sent). That was my last attempt at piano, and I assure you that the human race is better for it.

I remember little things people have said, the way hospital soap fills a room with anxiety, the exact expression Todd had on his face when he told me he loved me for the first time. It's locked away in a little vault that opens with trigger points in my life.

Unfortunately, trigonometry, driving directions, and Spanish never made it into the vault.

I honestly feel like that's one of the reasons I love to write so much. It can get all tangled out and if I can just get it on paper it unravels a little and helps me connect the dots. The hard part about that is that I can't run from it when it's right in front of me. I have to dig around in my closet, past the wedding dress, past the girl's linen dresses, and into the corner I have not wanted to face. I opened a vacuum-sealed bag of maternity clothes yesterday and I could feel her again. I screamed at God because I wanted her back so badly I ached. Todd came and found me there, face-down in my pain, clothes spilled all around me.

"This is the sweater I was wearing when we found out. This is the shirt I almost returned because we got her diagnosis and I knew I wouldn't ever be big enough to wear it. This is a nursing gown I never got to wear, this is the dress I bought for the photography session..."

They are just clothes, I know.

But they were a part of my life with her.

I needed to have a little meltdown. I've been moving along as if I could get through it without feeling this, and I can't. I'm just not going to bother to try anymore because it isn't going away. I really want you all to know that I have struggled in my walk recently. It isn't that I don't believe or trust in the Lord. I do. I just haven't been as disciplined as I should be with my quiet times and spending time in the Word. It isn't like me to retreat so much, and I finally realized yesterday that there was a part of me that just felt like going it alone because the last time He let me down.

Is it false thinking? Absolutely. No question Satan wants me to be convinced that I am better off on my own, trusting that doctors and logic will sustain me. I confessed this to the Lord, and I confess it to you all. Many times I have shared about my spiritual life, urging you all to be disciplined and faithful, and I owe it to you to tell you that I have just not been there in the last several weeks.

Truthfully, I have not felt permission from the Lord to write on the blog because I knew there was a disconnect between what I wanted to say to you and what I felt. I know He wanted me to focus on Him, and sometimes that means stepping away to get my priorities in check. I don't want a ministry if I'm being hypocritical or false. So, all that to say, I am working to get back in my groove... :)

I want to believe that this time is different, and I do feel a peace about everything. The night before my first appointment (I even switched doctors because it was so hard to think about going back to mine) I started letting my thoughts get away from me. I pictured the room, the gel, the screen. My heart was pounding and I pleaded with the Lord to give me a sign of hope. Lord, you don't have to tell me the baby will be fine, and I don't expect you to. But would you just let me know You are there? That you haven't let go of me?

There was a time of great hope during my pregnancy with Audrey, when an ultrasound seemed to conflict with her diagnosis. A few weeks after we learned she wouldn't survive we were surprised to see that many of her original diagnoses were not what they thought. That evening we went out to dinner for my nephew's birthday and I photographed Kate asleep with a balloon in her hand. I posted the picture and said that when I saw her I knew that we were doing the same thing; against all odds, we were holding on to hope. I actually wrote about this event in my book because it was such a pivotal moment for me, and the picture of Kate is featured in that chapter. It was a symbol that the Lord used to remind me that He was with us and that we had permission to hope.

When the sweet technician did my scan a few weeks ago, she had the screen turned away from me. Todd could see it and he was trying to make out what was happening. We knew it might be a little early to see a heartbeat so I had prepared myself that we might not get that reassurance. Just after she started, she said "148 beats a minute!"

Oh, Jesus. Thank you. Thank you.

She continued to look at the screen while I looked at Todd. All of a sudden she giggled a little under her breath.

"Well I can't say I've ever seen that before! That is so funny. Look at this, Angie."

She started to turn the monitor as her words filled the gap in the room. She shook her head warmly and continued, having no idea how it would bless me.

"It looks like the baby is holding a balloon."

I stared at her and then I took a look for myself and indeed, it was uncanny. I felt a peace come over me when I saw it because I knew He had done it for me. He hasn't forgotten how much it hurt me and He knew I would understand Him. I felt my eyes get hot as I thanked Him for letting me sense Him so strongly in a moment I needed to believe He was there.

She repeated herself and I nodded.

He isn't so big that He can't find His way into an exam room. I couldn't wipe the smile off my face as I agreed with her.

"It does look like the baby is holding a balloon."

I let out a 2 years-long sigh and finished the sentence in my head.

And so are we, Lord...

So are we.

Amazing, no?  These words touched my heart because I, too, get attached to smells and items and anything.  The smell of certain plastics immediately take me to the operating room.  Putting on a hospital gown for an MRI sends my mind to laying in a hopsital bed, 9 years old, watching the rain fall out the window.   I can't wear certain items of clothing because of the grief I felt in that shirt or with that bag.  I can't drive by certain places without chills shuddering up and down my spine.  Certain songs take me to the times I have been laying on the floor screaming at God or curled up in a ball in my closet, sobbing into a pile of clothes, struggling to catch my breath.  I have meltdowns all the time... usually in a longing dispair for what isn't, what cannot be.  But you know what? God has been there every single day through all of it, and He's been beside me through every hard time, to see each tear fall. 

He was there about a month ago when I had just failed a nursing paper, I was in over my head in school and life, and Jonathan was taking a class that made him only come over a couple times a week.  (He's usually here every day.)  Then, I had a day of appointments.  A new pain psychologist helped me realize some things.  The appointment was a good three hours long and just emotionally draining.  I need to get my life down to a quota, not stress my tolerance.  She told me that my pain - physical and emotional - is always going to be there.  If I do less to handle it, if I am deconditioned, the painful thing or the physical pain is just going to hurt more.  She told me to take pain out of the equation and no longer make pain the determinant of what I do or don't do.  She told me life is like an airplane and said my life is turbulant, and the plane is coming down.  She asked me what to do when the life masks pop down from the plane ceiling.  All of a sudden the light bulb went on.  I remember exactly the soft tone of voice I had when I slowly said, "I put mine on first before I help others."  That was it.  I'm killing myself trying to save the world when my own "life mask" isn't on.  And then I saw my liver doctor, which is usually emotionally painful.  She's told me in the past that she had a patient with my condition, and after she got pregnant, she advised her to abort the fetus because the pregnancy and birth would kill her.  That has always stuck with me, but this particular day, we discussed the genetics of my disease and how it's thought - although no one knows to what extent or how - to be somehow genetically composed.  She said my children would have a small chance of having liver problems, and even my sister's children or if my mom would to have more children, were to be slightly at risk.  So then of course, I immediately feel guilty for tainting my entire family's offspring (even though no such offspring exist), and I also start getting sick to my stomach because although I'd risk my life to carry a baby and bring her into the world, even a small chance of passing on this hell I've lived through is without question just not going to happen.  I would never, ever wish this on anyone, God forbid my own children. 

So an hour long drive home got my mind in a mess of stress and fear and exhaustion and something set me off later that evening (no idea what...) and I literally went into a crying hysteria that lasted about 3 hours.  It went into a full blown nervous breakdown.  My mom came into my room twice to try to calm me down, and I know it upset her to see me like that, but I guess that's what moms do best.  Eventually I texted Jonathan who was in his class and told him to come over ASAP because it was an emergency.  I'd never in a million years ask him to do that, but I knew if I didn't get my strength to me soon, if I couldn't sob in the only arms who could stop the tears, I wouldn't get out of this fit that was suffocating me and stabbing knives in my stomach.  I'm not even sure I should type these next words because it makes me look so lame and pathetic, but when I'm at my absolute worst and cannot find the words to talk to God, his arms are just a little longer to reach God and bring Him to me.  Jonathan connects me to my hope, and until I'm strong enough to hope on my own and learn to trust God just a little better... until my crippled legs straighten and my broken hands heal, he's the only one who can pick up my broken pieces and place them in God's hands.

That's what true love is, and that is what the grace of God means to me.

How thankful are we for the love of God, the grace of God, the mercy He has for His broken ones.  He wants us to hope in Him.  Even if we don't feel like hoping anymore, even if we can't see the hope.  It's there.  Hope is a powerful, powerful thing.

Thursday, November 12, 2009

Our fridge

Our refridgerator is a sorry piece of equipment.  It works great, gives us ice and water, keeps our food nice and cold or frozen, but there is one problem.  It's covered in wood panels to match the wood in the kitchen.  Wood panels are not magnetic.  I've hated this fact since the day we moved in, well over a decade ago.

So around here, if you have something amazing like a report card you want the entire household and guests to see, or perhaps that school picture you look especially nice in, or like lately, the picture from the newspaper of LeBron, Shaq, and MO WILLIAMS.... well, you just get a tiny piece of tape out and mount your article/picture/letter/mean note like "AMANDA DO NOT EAT MY COOKIES"... you get the idea.

I found this in Sunday's paper and couldn't help but cut it out and put it on the fridge.

&

I have to admit, I smiled and was maybe a little bit surprised when Jonathan habitually walked to the fridge for some Mt. Dew and, reading something he realized was meant for him, chuckled.  (But then again, you always feel special when the posted item is about YOU, dontcha Jonathan? lol)

Ahhh.... young love.  It's so predictable sometimes, isn't it?  Otherwise the "funnies" wouldn't ever be funny!  ;-)

Saturday, October 17, 2009

Dreams and visions

Yesterday I was dreaming on the highway.  It was around 6:30am and I envisioned myself side-swiping the truck next to me.  When I got home about 12 hours later, I realized it wasn't a dream.  Go look at my car if you don't believe me.

Tonight I had my girls so Mom and Dad could go to a charity function.  My tiniest (10 weeks) decided she wasn't going to go to sleep, so I rocked her back and forth, back and forth.  Seconds turned to minutes, minutes turned to hours, back and forth, back and forth.  Then, as my heart was breaking deeper and deeper, all of a sudden, it happened again.

The dreaming, I mean.

This same nursery was all of a sudden in my own home.  A beautiful wood crib, a dresser, a sweet little lamp, and those coos that can stop you dead in your tracks.  There was a baby here.  Finally.

I closed my eyes, and I was in the suede/microfiber rocking chair and ottoman set that I have in my basement all ready for when this life finally happens.

Back and forth, back and forth.

The door was ajar, the tiniest bit of light peeking through.  It widened, and I looked up.

Jonathan came in. 

I looked down into my arms at this precious manifestation of love, hope, and sheer miracle, and then my eyes met the ones I loved first.  He kissed me softly before peering down at our daughter and kissing her forehead.  He didn't have to speak a word.  His eyes said every feeling in his heart. 

And that was it.

Then my heart was ripped out again as I realized that dream may never be reality.  Sure, I can dream of getting hit on the highway and that will come true, but the most honest, purest of things?  I can dream it every single night, and yet I'm still here alone, yearning, grieving.

A long time ago, many different people told a pained, confused little girl that Jesus loved the little children, all the children of the world.  Their eyes looked so sure.  Maybe they were.  Or maybe the little girl was still too naive to know any different.

It didn't take long for her to realize that those children grow up.  And then what?  Are they lonely like me?  Why?