Wednesday, April 18, 2012

What do you believe?

Sorry it has been so long since I have updated you.
It is hard to think, let alone write.
I really don't want to write right now.
I am tired, and my heart hurts really bad and I seem to be quite foggy-brained right now.

I wanted to start by thanking those that are bringing us meals-and signing up on the meal sign up tab to help.
It helps so much.   Also to those who have sent us grocery and gas cards- THANK YOU!  I also wanted to thank those that have sent cards to Aidan and Calli, they feel really special and loved when you do that.  Imagine Aidan's surprise when he got a really awesome package from Roller Derby Girls!  He smiled so big at all the cards.  Thanks so much for thinking of him too.  He has had a very hard time and his life is upside down right now.

So, I know you all are waiting for an update on our family, especially Calli. 
When I asked Calli what she wanted me to write,
she said, "Mom, write nothing, or write everything-the truth, you have never held back before so don't do it now."

I'll start with this song
Calli wanted me to post this song by Barlow Girl- called "I Believe in Love."  Calli especially loves the story behind the song about a man who was a prisoner in a concentration camp... and  after it was shut down, this quote was found on the wall.  

"I believe in the sun, even when it's not shining. I believe in love, even when I don't feel it and I believe in God, even when He is silent."

here are the Lyrics-
How long will my prayers seem unanswered?
Is there still faith in me to reach the end?
I'm feeling doubt I'm losing faith
But giving up would cost me everything
So I'll stand in the pain and silence
And I'll speak to the dark night

I believe in the sun even when it's not shining
I believe in love even when I don't feel it
And I believe in God even when He is silent
And I, I believe

Though I can't see my stories ending
That doesn't mean the dark night has no end
It's only here that I find faith
And learn to trust the one who writes my days
So I'll stand in the pain and silence
And I'll speak to the dark night

I believe in the sun even when it's not shining
I believe in love even when I don't feel it
And I believe in God even when He is silent
And I, I believe
No dark can consume Light
No death greater than this life
We are not forgotten
Hope is found when we say
Even when He is silent

I believe in the sun even when it's not shining
I believe in love even when I don't feel it
And I believe in God even when He is silent
And I, I believe.
The night before my dad died,  Mike and I were in the hospital  with Calli, who at the time could not walk much at all without the help of 3 other people.  That night, her doctor came in and told us that the cancer that was in her spine, had spread.. a lot.  To use her words, she said it was like a "big fat sausage" in the middle of her spine...cutting off her nerves, paralyzing her.  They said there were many other cellular changes in several other spots  as well and yada yada yada.... (as my dad would have said). 
They said they were so very sorry, that there was nothing else that could be done for her.... to prepare for what they told us last June- that she would die from this disease.  All I kept hearing in my head over and over again was "It's only a shadow, Lucy, it's only a shadow."

That was at 8pm.  My first call was to my dad and mom.  My dad was heart broken, but hopeful and said, "Lucy I know my arm is short right now in how I can physically help you, but I want to help, what can I do?  I love you, she will be OK."  My dad himself, was feeling so badly and just wanted to help.  They had planned on being there first thing the next morning.  

That night, I just could not sleep at all, not from worry, I just needed to pray and read the word and I turned on some worship music and asked God to talk to me, to show me... to tell me... to speak and give me something to cling to.  I waited and waited and silenced and stilled my soul, and as clear as anything, I heard, "411 and 412."  Well... 411 and 412 of what Lord....huh?  So, I just turned to page 411 and 412 in my bible, and it was the first two chapters of the book of Job.

We had been compared several times  to Job in the last year, and had even had the pleasure of being counseled by some of Job's friends :)  So, I sort of chuckled...and read it.  The thing that stuck out to me the most was that when all this crazy bad stuff happened to Job, he did not curse God, or turn his back on God, he tore his clothes off and.....WORSHIPED GOD and said, "The Lord gives and the Lord takes away, but blessed be the name of the Lord." The bible says that through all of this Job did not sin or blame God!

Yes you read that right, when all his kids were dead, and a bunch of other terrible things happened to him...he worshiped God.  He would not betray or blame God.  As a matter of fact, things got even worse for him, now his own body was being afflicted and after his wife saw him worshiping, she told him, "Why don't you just curse God and die!"  He replied with another nugget..."Should we indeed only accept the good from God, and not accept the adversity?"  And even in this, he did not sin with his lips.

so, in the middle of the night, God comforted me in ways that no man or thing can.  I felt strength and courage, because I want to worship God no matter what, I do not want to blame him, or even blame his will for all that is happening...this was a reminder to me of what God wants to do..worship through.  Around 3 am, I finally fell asleep.

My dad died at some point during that time.  At 6:45 am, my mom called Mike, he was the first person besides 911 that she called.  My dad was dead.  Is this real?  Could this really be happening?  This is too much to bear, we have not even fully grieved Mike's mom's death let alone the report from the night before... and now my Daddy is gone. 

It is really hard to accept.  I did not get to say goodbye, I mean I said I love you Daddy, see you tomorrow, the night before, I said goodbye.... but not really.   If I knew he would be leaving, i would have told him, no, I need him here, I need you Daddy- no matter how crazy yo or i get, we get each other!  You are the only one that really gets me Daddy, we had that- I have your nose, and your lips and Calli has your lips too, and I kiss her a little longer now, and pretend it is you, and I am saying goodbye, and I don't care if that is weird.  I love you more than I could ever express, and I am sorry for not showing you as much this past year and for being so very busy, that I did not realize how fast you were fading... I am sorry you hurt so much, and that I let you down, I love you.  

I feel cheated, and I am angry and sad and do not understand at all what is going on.  But I am not mad at God.  I am mad at the devil-   he is the ruler of this world, he comes to steal, kill and destroy and he has.  Sometimes we are robbed.  I feel robbed, my kids feel robbed, my husband feels robbed.

After Mike told me and Calli, I lost it.  I crumbled and knew I had to go be with my mom and get Aidan.  The whole way I played worship music and screamed and cried and wailed. When I finally got to Aidan, and he saw me show up at 8 am, he knew something was wrong, he thought his sister had died.  When I told him it was his beloved Poppy, he screamed and cried.  We went to my mom's house, and my sisters and brother-in-law were there, and since we had just been through all of this less than a month ago with Mike's mom, I helped my mom with making arrangements.  My sisters worked hard to get all of his military honors in order, and made sure that all of his medals and pins were there.  I brought Aidan back to the hospital with me, and we broke the rules that night and Mike, Aidan and I slept there with Calli. 

That evening, we had visits from dear friends.  We read scriptures, prayed, laid hands on Calli, and spoke and declared God's word, God's reports over her life.  The Lord spoke greatly.  The Word of God divides between even soul and spirit. Soul is our flesh, our will, our emotions, our life etc...- our spirit is the part that connects to God- all that soulish stuff is put aside and there is a true spirit connection- we are not a spirit, we are a body, a soul, but with a spirit that connects intimately with God.

The next day, I had to go to the funeral home with my  mom and sisters, and I had to leave Calli again, and it was very hard to do, but Mike was there with her and Aidan was too.  I knew I had to be back by 2 pm for her Brain MRI- she was going to do it with out being put to sleep.  While we were  at the funeral home, I saw my daddy.  He looked so peaceful, and it was unreal, I kissed his lips over and over, they were always so big and plushy, and his nose so big, and always got in the mine does. 

I cried and screamed and cried and screamed the whole way back to the hospital. I am certain people on the Schuylkill thought I was nuts.  I had put worship music on, but with every single note, every song,  my heart just bled- it was mush, absolute mush.

I made it back 20 minutes before Calli's scheduled MRI, but when I went into the hall, she was there with Mike and was all done!  She did it!   Mike went in with her- he never had before, because we thought his eyeball might fly into the machine (that's what they tell you ya know, if you ever had metal in your eye- which he has)...but it did not fly out!  So what do they know?

That night, we all slept there again, and the next day we received more bad news- Of course it would be bad.  So her brain looked good on the CT scan, but on the MRI, there was a tiny spot- and some shady areas on her brain stem that were there last month, but they said was blood before...they looked suspicious- but did not light up.  GBM, Glioblastomas light up.  

To me and Mike, that tiny spot looked like an orb- ya know those circles on pictures that people think are angels.....Mike actually said, Look, there is an angel in her brain.  The doctor said that there were weird shadows, but nothing lighting up, she said she could not explain it, but in the same breath, said that it can't be anything else but cancer.  shadows- hey, It's only a shadow.  OK God, you told me that the other day, it's only a shadow.  It's not the real deal.  A shadow of me is only a shadow, it is not me.  yeah though I walk through the SHADOW of death, I will fear NO evil, you are with me!!! 

It was clear to me.  This is not unto death.  I don't care what they say, what they think they see, It is only a shadow. 

I am not in denial- I am seeing clearly- everything else may be foggy, but this I see, and this I know, that the moment after Jesus and my Dad were hugging and he worshiped him, he was tugging and pulling at Jesus' robe while He was talking to the saints, and saying..."Excuse me Peter and Paul for my Folly, but Jesus I need your ear for a minute.just me and you OK?...what about Calli?  Do you see my granddaughter down there, Jesus, listen to gotta do something about this...."  I can see it now, I can see Mark and Linda, patiently saying, "Simmer down Matt...but Jesus, could you please do something...."   they are also agreeing and advocating with Jesus, on our behalf for Calli to Jesus-who is the Advocate for us to the Father.

After two more days and many trainings and safety assessments, Mike and I felt confident enough to bring Calli home.  At this point she was not allowed to walk- really could not walk without someone lifting her leg for her, because she could not lift them.    We had a rough time getting used to Calli's physical challenges- It has been been so hard- like having a newborn, up in the night several times.   The first week was so hard, trying to grieve and be a family, and get used to new routines and challenges, and take time to make picture boards for my dad's funeral, and deal with other familial drama- it just never ends!

We made it though, and each and every day since April 1, Calli gets a little stronger.  No one understands why.  This is Calli- she will never ever ever ever give up.  She got right back up on that horse too!  At horseback therapy they made adjustments,and she is Physical therapy each time she goes, she meets and passes the goals that are set for her.  At occupational therapy, which she just started, she made a goal and achieved it this week.  She will not give up.  I will not give up.

My mom, is taking at least 6 weeks to come and help me with Calli and the house and Aidan and I need her.  She does my laundry, and helps Aidan with school, and does so much and is there to support me mentally as well.  I am so thankful for my mom.  I know she wanted  so badly to be there for us this past year, but could not- working 65+ hours each week at the Post office and taking full time care of my dad.  Mike,  Aidan, Calli and I are just so thankful for her in our lives.  Besides it is a good distraction, and healing also for her to be here with her grandchildren.

Losing my father, was devastating.  Not many people realized how much they truly loved him or would miss him.  As one person said, He did not know or even realize how far or much Matthew had gotten into his heart. It heart physically hurts.  I cannot stop looking at pictures and remember my time with my dad.  There was a time in my life, where I felt sorry for myself, and was deceived and believed the lie that I never had any good times as a child with my father, that it was all hell, and heartache...well I was wrong, I was lied to by the devil.  My father loved me so much.  My father had so much to deal with himself,and became a hero to a widow and her 3 young babies,and soon after had me...he struggled  as a young man to raise a growing family while dealing with much past hurt and pain and rejection from his own past.  He never dealt with it, it came on too quickly.  I understand and understood my daddy.  We are much alike.  My dad was like Job, he never blamed god, he worshiped God through all the muck, He was never ashamed of God, or the Bible, and he always took the blame, even when things were not his fault.

I miss my dad very much.  I have at least 43 messages from him saved on my cell phone from just the last month.  He called me every day,and just wanted to talk- even just for a minute- he had nicknames for me, and I'm never going to delete those messages.  I have crazy messages too that he left, when he was out of it, and his brain wasn't working right, and he was all alone.  Actually I have every message from him for the last year and a half.  I am not sure how to move on, but I know that I have to.  I am human and like everyone else, I just want to curl up in my bed and cry. And I do, but then I turn over and see Calli and she is worship- She is the very act of perseverance and long suffering and courage.  Life must keep going

So we keep going, and moving and as far as Calli goes, we are waiting on the Lord. 
no more chemo, or treatments they didn't work anyway.

Last week we were watching the new Karate kid, and Mr Miagi, or whatever his name is in the new movie, was trying to teach Will Smith's kid to be still.  The kid said "I don't like doing nothing!"  and the Instructor said, Being still is different than doing nothing.

So very true.  That hit the center of my being.  We are not doing nothing, we are being still.

Then the next day, a friend of mine told me to read 2 Chronicles 20-  I did- wow that hit the nail on the head!  To sum it up in my own words- 
there was a king, and a bunch of armies were totally lining up to kill him and conquer his city- and they were surrounding him on every side.  They were all scared and the king said- OK, wait we are all gonna fast and seek the Lord for what to do- so they turned to God, and sought the Lord and fasted all together and they reminded God of the time he delivered them before, and asked God what to do next.  

God told them to get ready,and face them, but to put down their swords and battle gear- but to go and face them the next day and not to be afraid and stand firm waiting and watching, because this battle was God's and they were to stand firm, wait and watch the Lord deliver them out of this- without fighting. 

So the king told everyone to believe and to worship God, and the next day they went out to face the armies without their battle gear and again the king, said- let's worship as we face them, and as they worshiped, they looked and saw every single one  of their enemies was dead!  They had all turned on each other and killed each other- no one escaped- not one!

So all along, I have been praying that the bad cells just eat and devour one another- and as we worship and surround Calli with worship of God- not worship of Calli or energy, or nature, or things, but worship we all worship God-that is going to happen!  
So what are YOU surrounding Calli with today, what thoughts are you thinking about her?  In those moments you are alone, or talking about her, are you talking or thinking about when she will die?  STOP IT!  When those thoughts come, (and they will) just SING!  WORSHIP!  BELIEVE!  Don't come around with a frown and don't believe the report of death- sing and worship through it- and believe as you are singing that as your voice raise to God that each and every cell that is bad in her body is at the moment devouring and killing each other.
Mike finally went back to work yesterday, and it was my first day alone with Calli today, as we went to CHOP, but we did it!  We were so encouraged today, when we went down to eat in the cafeteria for lunch,  we never do this!  I always pack a lunch- but we were encouraged when someone who reads our blog recognized us and came up to us and said how it encouraged them!  On the way home, I stopped and bought Ca;;i a good old fashioned HOPE chest at the thrift shop.  We are going to put things in it for when she gets married:)

Back to the song....what do you believe?

I believe in the sun even when it's not shining
this is a picture of Calli today:

Please if you can, come watch Calli and Aidan ring their last bell choir concert of the year, at Franconia Mennonite Church, on Friday, April 27, and 7 pm.  It is free!  Calli will be ringing!   Even though she cannot stand for more that 3 seconds on her own, God showed me a way to hold her up, so that she can ring!  She has worked so hard, and it takes so much of her energy, but it is amazing and awesome to watch these kids ringing!  Come and see these awesome kids- and support Calli and Aidan and this ministry.

Sunday, April 1, 2012

I will never forget the many many many times 
you sang this with me Daddy, 
going to Florida, the whole way down, 
all we listened to was 
the Moondance album by 
Van the man Morrison. 
 It is a brand new day Daddy. 

by Van Morrison 
When all the dark clouds roll away
And the sun begins to shine
I see my freedom from across the way
And it comes right in on time
Well it shines so bright and it gives so much light
And it comes from the sky above
Makes me feel so free makes me feel like me
And lights my life with love 

And it seems like and it feels like
And it seems like yes it feels like
A brand new day, yeah
A brand new day oh 

I was lost and double crossed
With my hands behind my back
I was longtime hurt and thrown in the dirt
Shoved out on the railroad track
I've been used, abused and so confused
And I had nowhere to run
But I stood and looked
And my eyes got hooked
On that beautiful morning sun 
And it seems like and it feels like
And it seems like yes it feels like
A brand new day, yeah
A brand new day oh 

And the sun shines down all on the ground
Yeah and the grass is oh so green
And my heart is still and I've got the will
And I don't really feel so mean
Here it comes, here it comes
0 here it comes right now
And it comes right in on time
Well it eases me and it pleases me
And it satisfies my mind 

And it seems like and it feels like
And it seems like yes it feels like
A brand new day, yeah
A brand new day oh