Sunday, February 26, 2012

Not goodbye...See you Later

Mike and I had the privilege and honor to be by his mom's side for the last 24 hours of her life. She died on Friday night at 8:16.

There were many in her family there... holding her, loving her, singing, praying, reading scriptures, crying, laughing and waiting for her to go home to Jesus.
Death is not a pretty thing, it is traumatizing and sorrowful for us...but for Linda, for Mom, it is a journey of the soul separating from the body- into eternity.

As she traveled somewhere between here and the sky, we stayed keeping vigil around her; she was never alone. I have often wondered what is happening to the soul, as it begins its journey, watching the body, as it writhes, and fights, moans and groans and holds on to every last ounce it has left.  The bible tells us that the spirit intercedes for us with groanings, that words cannot express.

As she took her last breaths, I was so overcome with the spirit of God...He was in that room.   I Could not contain it, I was crying and praying and Mike pulled me closer, and we were both holding Linda's hand and, and as my eyes were closed I saw Mark, her husband, with the Glory of God on his face, just beaming, and then I saw Aunt Ruth and Aunt Luella, with the Glory of God on their faces, they were in a cloud, and they were just beaming and smiling and waving for her to keep coming up to them, like she was in the final lap of a race, they were saying "Come on up, you are almost here...", then at that moment, she squeezed our hands so hard, and took her final breaths.  I could not believe that she squeezed our hands, she had not moved her body or said a word in 10 hours.

In that moment, all sense of reason leaves you.  I grabbed her face and held her and sobbed and wailed and kissed her.  I could not contain the Love inside of me for her, the very love and acceptance that she had given to me through the years, it just poured out of me for her.  Mike held me, and we sobbed and grieved the loss of his mom.

On our way home, Mike shared with me, that he too had had a vision while she was taking her last breaths.  He said that in those final moments, he saw his father, Mark in a field holding out his hand to Linda,  and he saw her running to him with her arms open, and Mike said that just as he saw her grab Mark's hand, that that was the exact moment that she squeezed our hands and took her final breaths.

God is so good to comfort us and show us spiritual things in those final moments.  As we told our precious children, and as Mike shared what the Lord showed us, he could hardly get the words out, but we felt so privileged and honored to be there, and to see with Spirit eyes what the Lord wants us to focus on.

Calli and Aidan, are very grief-stricken, and have a hard time making sense of any of this.  But God gave us something precious to remember, to share with our children, with you...He is real.  Heaven is real.  There are many saints waiting for us up there, cheering and urging us on to fight the good fight, to keep running till your final lap- and then they will come and meet you in the sky, and Jesus sends us comfort as only He can do-

2 CORINTHIANS 1:3-7
 3 All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. 4 He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us. 5 For the more we suffer for Christ, the more God will shower us with his comfort through Christ. 6 Even when we are weighed down with troubles, it is for your comfort and salvation! For when we ourselves are comforted, we will certainly comfort you. Then you can patiently endure the same things we suffer. 7 We are confident that as you share in our sufferings, you will also share in the comfort God gives us.


So we say so long Mom, Grandmom, we will see you later, and we will meet you in the sky!

On Saturday, March 3, at Blooming Glen Mennonite Church, in Blooming Glen, PA there will be a viewing from 8:30am-10:30am and then the service will be at 11:00am, where there will be a time of sharing and reflecting upon her life.  Burial will follow.

Mom and dad LOVED the Isaacs- and Love lifted me, is a song that I sang with her several times in the last weeks, and at her bedside while she was moving on.

Please enjoy!  Rejoice!




Friday, February 17, 2012

Cleared to go
Calli came home last night from the hospital.  Her doctor's said all her blood levels are going back to normal, and the physical therapist cleared her to go home with us with some physical boundaries set in place.  At this point, all chemotherapy has been stopped.  Avastin, one of the chemotherapy's that she was on, was causing her to bleed in her cord... which in turn, caused major swelling and blood product in her cord... which then caused weakness and major pain again due to pressure on certain nerves...which caused her to have a change in her gait, and an inability to walk correctly, and we can't have that :) The supplements and vitamins must also be stopped for a few weeks, so that her blood can clot well!  We are not sure if she will go back on Avastin- this may be a blessing- especially if it causes internal bleeding :)

Bargaining
Have you ever gotten on your hands and knees and cried and begged your child to eat?  The last three weeks, I reduced myself to a groveling mother...begging and pleading and cajoling Calli to eat.  Have you ever watched your child waste away day by day?  Have you ever set many different choices of food and made so many different things, only for her to turn it all away.  Have you ever watched your child's eyes sink in from not eating for days... weeks, and know that there is absolutely nothing you can do to make her eat or drink?  Have you ever threatened your child, to eat..or else...or else they would have to get a feeding tube? Have you ever been so desperate?

We plead and beg and pray to God for help each day.  Mike and I have love the lord, and trust God fully with this matter.  Sometimes though, our human eyes cannot see past today.  Sometimes it is so hard to see.  Sometimes we shift our focus on the wrong things, and get jumbled up inside.  

We have prayed and thanked God for this situation, no matter how hard it has been.  Itis not only effecting Calli either, Aidan is just having such a hard time.  We cry to God for help, for wisdom, for guidance, for spirit eyes, that even if we are blinded ourselves and cannot see, that we will we hold on and trust and obey and have joy.  Sometimes God is quiet....He whispers so faintly...and when we hear His whispers, it seems like He is so far away, because we can barely hear Him.  This week I realized, that His whispers do not mean He is far, rather, He is so close, He is just quieting me, as a mother calms and quiets her voice to calm and quiet her own child.  

Shielding
Many of you may wonder, how Calli can look so good, and be so strong and in just a few weeks, or even days, go down hill so quickly.  People do not understand the essence of Calli.  She is a fighter extraordinaire!  She will try and try- never giving up...but she is so strong willed also, that when she puts her mind not to do something, she won't.  She won't eat if she is not hungry.  Nothing tastes good...  Also, with added stress, the body, the spinal cord, reacts to stress- things wont work right.... a simple thing like inflammation can quickly knock you down and put you out of the game- she was jogging in December, showing off her muscles eating OK, and today, she needs a brace and help walking and has no appetite.   

On top of this all, there are many other outside stresses that would send each of us crying to our beds...throwing the covers over our heads and waving the white flag!  I am an adult, and I myself can't handle a lot of what is going on without crying or screaming or laughing like a crazy person, or wanting to eat more or not at all- just begging and pleading for God to take over and shield us and handle it Himself.  Like a Canadian Goose Daddy...he will protect his family from danger or harm to the extent that he will give his own life in defense of them.  

Calli is just a child, a 14 year old child who has the world on her shoulders, fighting for her life each and every single day... believing that God has and is perfecting all that concerns her.  When these extra nonsensical things happen... she hears and sees and absorbs them all....it effects her so deeply.  If any of you know Calli, you know that she is articulate and deep and beyond her years..she wants to be told every single detail about things that pertain to herself and this struggle.  We Have respected her wishes, the doctors, have too- and it is a huge load to bear and knowing it all isn't always good...that is enough to have to deal with along with all the physical challenges, and emotional challenges......  

So when things and people and relationships start crumble around us....adding more to deal with, we want to put up walls of protection around our children.  B we cannot shield them from "Life," it happens.  When these things arise, they take an extra toll on Calli's already tired and worn out body, mind, and emotions-increasing her weakness,and lack of strength..and on Aidan, he is so angry and confused and just worn down.  People don't seem to get that, or they just don't care.  Perhaps they are sent to chip and chip away at us.  God has a plan for our lives, and satan will try and try and use whatever, or whoever he can....maybe even you- to beat us down and diverge us from God's plans.
 
Fight or Flight
I have certainly had my share, and given out all sorts of drama and stress, and have been guilty and still am at times, of focusing on things that don't matter, and have not always been the best friend or relative or mom or wife that I can and should be.  But right now, none of that matters.  Right now, it is all in the past, right now, I will hold my head up and move on and keep plowing through the mud to go where we must go and do what we must do to survive.

If you are in a relationship with us, and it gets pressed,  we are most likely going to stand up and fight you  or flee from you.  It is such a natural human response that God has given each of us.  There is a time and a season for everything.   

When I took Anatomy & Physiology in college, I learned about FIGHT or FLIGHT responses.  When presented with harm or danger or stimulation, a body will kick in to gear and major codes from the brain are sent to the body and All of these physical responses are intended to help you survive a dangerous situation by preparing you to either run for your life or fight for your life .  

IF a relationship is gonna require what we cannot give, we will most likely bow out and let it go.  We don't have the energy or stamina for relationships that require a whole lot of work right now  We are taking care of what God has given us, each other, and our children. You can choose to give us grace, and stick by us and forgive us if we cannot or do not meet your expectations; or you can move on if you must- we understand.  

Ecclesiastes 3-A Time for Everything
 1 There is an appointed time for everything. And there is a time for every [a]event under heaven—
 2 A time to give birth and a time to die;
A time to plant and a time to uproot what is planted.
3 A time to kill and a time to heal;
A time to tear down and a time to build up.
4 A time to weep and a time to laugh;
A time to mourn and a time to dance.
5 A time to throw stones and a time to gather stones;
A time to embrace and a time to shun embracing.
6 A time to search and a time to give up as lost;
A time to keep and a time to throw away.
7 A time to tear apart and a time to sew together;
A time to be silent and a time to speak.
8 A time to love and a time to hate;
A time for war and a time for peace.

Sometimes people and the petty things and issues they think are big, are really not that big.  Instead of quieting themselves, and believing the best, and being honest and stepping back and waiting, they run and hide and lie and gossip and they wreak havoc and ruin and destroy and separate themselves and separate others.  They divide instead of join...they dig pits and graves for others but soon, if they are not humble and cry out to God, they will be falling into those pits themselves and their lies  have spread like gangrene...in the end they will be held accountable to God.  There is a huge cancer out there, and it is called unforgiveness.  IT will rot you from the inside out.

I want to be in the boat like Jesus, and the waves and storms are crashing all around me...and I am at rest, sleeping- totally a mess on the outside but totally trusting on the inside.
 
 Right now, our focus is on our family resting and healing and eliminating the outside stresses.... The best is yet to be.  
 
THis song is so worth listening to over and over again- whoever made this video did a great job too-


 

Thursday, February 16, 2012

DYING TO LIVE



Calli is so tired.  She slept all day yesterday.  She has lost a lot of weight since this whole thing started bay in May, and has been on a steady weight loss since September.  The doctors put her on some steroids again, (YUCK!) she hates them, last time she took them for a long time and they gave her horrible acne, she gained weight, and got horrible purple stretchmarks.  This time, they promise she will only be on them for a little while.  They will help decrease the swelling in her cord, and they will make her gain weight- which is what they want!  For now, she is off all chemotherapy.  her blood pressure is back down to normal, which is good.


Last night, she was more alert, and was eating every 2 hours- little bites here and there!  YIPPIE!


While she slept all day, I did art therapy :)  Well...I did art in her room, and it was therapy to me.  First I got a bunch of old magazines and made a collage of some of Calli's most favorite things...it was fun and relaxing and she really liked it- it gave her something nice to look at when she was awake.


Then I made a sign for her door, and a reminder for all who walk in that "The best is yet to be," not the worst!!! 
I BELIEVE that each and every single day!



One of my closest friend's, Nea, sent me a scripture while we were on the way to the hospital- Psalms 121. It really spoke to me.

Psalm 121

1 I will lift up my eyes to the mountains;
From where shall my help come?
2 My help comes from the LORD,
Who made heaven and earth.
3 He will not allow your foot to slip;
He who keeps you will not slumber.
4 Behold, He who keeps Israel
Will neither slumber nor sleep.
5 The LORD is your keeper;
The LORD is your shade on your right hand.
6 The sun will not smite you by day,
Nor the moon by night.
7 The LORD will [
a]protect you from all evil;
He will keep your soul.
8 The LORD will [
b]guard your going out and your coming in
From this time forth and forever.


After reading this scripture, I thought of mountains, and then I thought of Scotland. I thought of almost three years ago, when I was in Scotalnd with Calli. That was the first time, I saw my child, my Callahan, in a different light. I was really sick, but she was SO alive! The people in her bell choir commented about how excited she was about every little thing. Each detail of a flower, or the hills, the sky, the mountains, the food, the cows, the cat, the smells- each thing excited her so greatly. One boy said that " I have never seen someone so excited about every little detail of life." I was seeing her in her element. Immersed in a culture, a place, a people, a history- I remember being in bed for several days so sick, as she explored the country and rang with her choir, and the first day I was able to get out, we were taking a bus trip to the highlands. The first mountain I came upon, I just wept. The awe and beauty, the majesty of those mountains....I was speechless.


I like this scripture as well, and wanted to remind Calli (as well as myself) of it.

Butteflies to me....represent change, free spirits- new freedom, new beginnings, flight- They have been an ongoing theme- that all started way back in Scotland, when we visited a hospice home for children who would not live out their teens.

There were butterflies and dragon flies hanging everywhere...it all kind of started there for me. When Calli was admitted for surgery, I wore butterfly earrings and a butterfly pin, not even realizing, that a butterfly was used very often for cancer pins- I had no clue then. As the days went by, people brought butterfly cards, balloons, and then we were admitteed to Oncology, and there are butterflies int he bathrooms, visiting rooms, on the walls and halls-

No one that we knew of, knew about the butterflies, yet they just kept coming, she got flowers with butterflies in them, and then my sister Abbe brought this mason jar- with a butterfly in it- except the butterfly was not real- but it could still flittter in the jar. It was amazing! I felt it was God's way of reminding me not to look at this cocoon, this our chrysalis..but to look beyond it- to the butterfly, to the end. It has to end to begin. He is with us in this....

Through the weeks that she was in the hospital, more and more and more butterfly cards, pictures, shirts and jars came- we were surrounded by butterflies. Then, I started to tell my friends, and we got even more butterfly pictures, and scriptures with butterflies on them. When we were discharged, it was butterfly season in my garden- and they were everywhere. Mike did not like it at first, he thought a "free spirit" meant that the people died...but I did not see it that way- well...I guess I did; but not physical death in the sense that he was thinking.

We all must die to live.

We must die to out old self, our old way of being and doing things- just as a caterpillar has no clue what is about to happen...it must embrace the change, the process that will make it free...make it beautiful, make it light and weightless....

When we lived in Monterey, California - we went to see the redwoods..there were monarchs everywhere amongst those huge trees that God formed. My sister Abbe, as well as Mike's aunt, Mary, brought Mason jars with Monarchs in them. Monarchs are the longest living butterfly.


May you see past a circumstance....see past the natural...see

HOPE, FREEDOM, FLIGHT, CHANGE, DEATH

TO LIVE IS CHRIST, TO DIE IS GAIN.

That catepillar, had to die, or appear dead, to gain, to change, to grow, to fulfill its purpose- it was created for worship- in its dying, in its flying, it was created to worship God-
to remind me, to Worship God, the creator of all things...the maker of Heaven and Earth.

Tuesday, February 14, 2012

Please pray for Calli- she is in the hospital.  Stress has played a huge role in how her body reacts.  People do not realize what she goes through each and every single day.  When you add outside stressors- on top of all that she has to go through- it tears her up- her body reacts and she is just beat and needs to rest and be rejuvinated- surrounded by humble people that are peaceful, and peace makers.  Are you being a peacemaker, or or you causing division and strife?  Blessed are the peacemakers.

Sunday, February 12, 2012

just keep moving

We had quite a rough last two weeks. Lots of emotional and physical ups and downs. 
 JUMP FOR MY LOVE
Calli decided to jump on the trampoline last week for the first time, since her surgery .  The last time she had tried...was last May.  She could not jump without hurting her back.... that is when this whole roller coaster all started....that is when we found out why her back hurt...that was the last time she was on a trampoline...until this week!

Here I go mom!












When in life, you want to complain about something.... perhaps  it is something petty...maybe about your own children...please remember these precious pictures of Calli...jumping on the trampoline.  Trying, never giving up, always pushing her limits, and defying them.  This may look easy to you, but it was difficult for her to jump and keep jumping and keep her balance, but she tried and she triumphed. Praise God, this was all without any pain in her back. 

It did not hurt at all, when Aidan jumped and bumped her around

so so beautiful



you are getting there Aidan, soon you will be doing a split!



 After jumping, she said that her ankle hurt.


Little did I know, (or her for that matter), that she had sprained her ankle pretty badly.  She has feeling in her left foot, but sometimes, especially when she is tired, it comes and goes.  so she did not feel the ankle hurting until it was really hurting!  Later that week, her physical therapist noticed how her left foot was not working as well, and she confirmed that it was most likely sprained.  Well, over the weekend, it hurt so badly, so Monday morning, I took her for an x-ray before she did horse therapy and physical therapy later on that afternoon.  It turns out it is just a sprain!  


With the green light, we went to Equine Therapy, and despite her hurting ankle,  she did so well!  She had her second session on Monday, and it is really unbelievable how straight she is on a horse.


















 This is always a major workout for Calli.  Again, what may seem like no big deal to you or to me, is a huge amount of bending, balancing, and work for Calli!  Her core is getting stronger, but she is more and more tired, and has increasing pain in her back, as you would if you were working it hard.  After an hour of Equine therapy each week, she goes right to Physical Therapy for another hour at CHOP in Chalfont.

On Tuesday, Mike's mom Linda moved out of Grandview hospital, into Telford Lutheran Home's skilled nursing unit, under the care of hospice.  Mike, the kids, and I were able to spend the day there, moving her in and making the room cozy and like home for her.  This is yet another change,another transitions that is hard.  We are very pleased with how Telford has made their new nursing home more like a home, rather than a hospital. 


Here is a video of her singing my favorite hymn in the hospital with her cousin and sisters.
video


Calli was asked to be in a story for a local paper, The Town and Country.  Here is the story. 
http://www.upvnews.com/news/article.ashx?article=6143

They did a great job capturing who Calli is.  Some of the details, as in any news story, were confused, but they don't really matter anyway:)
Roscoe, would not leave my feet, lol- so he was included in the family picture- Mike said I look Asian.
This is the funniest picture of Butchy.

I woke on Tuesday morning, and Roscoe had a swollen leg and was limping.  We left him outside the other day while we were gone, and he dug and dug at the fence to try and get out.  He is quite anxious and has OCD, so I imagine he probably dug for the entire 8 hours that we were gone.  
So, my neck has been hurting a lot lately- I can't imagine why- it has been hurting and feeling so crunched for months, so I finally made an appointment for myself at the doctor and at the vet for Roscoe.  
This visit was quite emotional for me.  I was seeing Dr. Cope, and His P.A. Jackie Robinson...the same people who found Calli's tumor.  I walked in the room, and as the nurse started doing my vitals, she teared up and told me that she has been reading our blog all along.  She asked to hug me, and I welcomed her embrace.  I cried.  Her own grandchild had been tragically killed in a boating accident not too long ago, and she had pain that I never wish to bear.  They asked about Calli and I just broke down crying.  

Lately, when I am not with my children...when I am alone, so to speak, I cry.  It just hits me, all at once- in my car, at the doctors office, in the shower....I guess it is a release.

They did an x-ray and, my neck is straight, and it should be curved.  They think I pinched a nerve.  Turns out I have same kind of bad neck junk my dad does- early arthritis as well, and stress makes it much much worse.  Stress makes the neck crunched and then my muscles swell and get tight and are actually pulling my neck straight- making it harder to hold up my head!!! Another thing, my blood pressure was 165/105!  YIKES!  And I have bad carpal tunnel- which is causing numb tingles down my arms 24/7.   I left, and headed over to the vet with Roscoe.  As I was driving, I was again left alone with my thoughts, and I realized that I when I am in pain, I need to lift my head and look up.  That was a spiritual lesson I learned.  A friend reiterated that to me later that day...lift up your head- your help comes from the Lord.


So Roscoe, poor thing, could not even walk into the vet at all, I had to carry his 42 lb chubby sausage body in there.  Then he would not get off of my lap- he is so funny.  Turns out he is fine, a bit dramatic and just very swollen and sore.

WORTH A THOUSAND WORDS

REALLY COOL SCREEN SAVER AT CHOP-

READY FOR HER MRI!!!
Calli had her MRI on Friday.  Her, Mike, and I spent the entire day at CHOP- we left at 7 am, arrived at 8:30, despite her scheduled time, they did not take her in until almost 12:30.  By then she was nervous, and hungry and nauseated.  She did giggle and laugh as she fell asleep though- she keeps asking me to get it on video, but Mike and I are too busy kissing her and and saying "See you later," as she is put to sleep by the anesthesiologist.  Mike and I waited for 4 more hours,and then she was done!  She awoke from the MRI this time, with a little harder and longer recovery than normal.  We finally we got on the road and hit Friday night traffic :)  We got home around 7:30, and were so thankful to have a prepared meal waiting for us on our porch!

The next day, Saturday, Calli spent most of the day recovering, and refused to eat- she just felt so yucky. Food is just not a good thing to her right now...it does not appeal to her at all.  Please pray that the Lord increases her appetite, and that she gains some weight!

Aidan had a TaeKwonDo Tournament for most of the day. 
 He did a great job, and we are very proud of him.  Mike and I were very proud that he got second place for patterns, and first for sparring.  He also was able to make it through the first round of the high flying snap kick- He did not make it through the first round of the ground patterns- but you cannot always win.  Losing gracefully and cheerfully-is a wonderful lesson we all must learn.  Better now than later.  I love Mark Cashatt's dojang so much.  As each child, teen, or adult is eliminated from the competition by their competitors advancing, they do not sulk or frown, they all continue to cheer on their fellow competitors and clans- it is like a big family.  It was so exciting and fun to cheer for everyone.


Aidan 4th one from right

Aidan green belt- doing ground pattern


That is Aidan kicking!




Kick it Aidan!



Getting a pep talk

He is the yellow guy <3





That evening, Calli threw up all night- from 8pm to 5 am, every hour over and over again.   We got little, to no sleep.  It was a rough night, to say the least.


This morning, however, I awoke around 8:30, feeling no more tired than usual, it was a blessing.  I did not feel at all that I had lost an entire night of sleep.  I thank God for giving us supernatural rest and rejuvenation.

Calli woke, also around that time, and was feeling better- and it was good thing, because Sharon Snyder, and Kisses For Kyle, a local nonprofit, had invited her to a fun night of socialization with other teens that have cancer from our area. She was really looking forward to going and spending some time in Philadelphia that was fun- not treatment related!

When we arrived at Bonefish grill in Abington, she felt sick again, but after eating a little, she made it through and felt much better. After a delicious meal, we then went down to the city in a "Party Bus-" basically a huge Limo. It was our first time in one of those, and what an experience! 

We arrived in Center City, to Action news, St. Joe's fundraising girls, and a red carpet at the MAC makeup store on Walnut Street in Philadelphia. The teen girls were greeted with roses, and bags and hugs.  There were friendly artists who treated them to a makeover, and gave them MAC products to take home.   
Here is the story they did-

 http://abclocal.go.com/wpvi/video?id=8540679


here is another one!


http://dig.abclocal.go.com/wpvi/video/2012/02/10/Segment_2_1821_9062.mp4


Jamie Apody from Action News, and Christine Maddela, from NBC, were both super nice and Calli and I got to talk to them  for a long time- we chatted, and laughed  about such normal things, like makeup, dogs, and other stuff. Calli was really happy how down to earth they really are. After all the girls were done getting a makeover, we went to the FREEZING cold Art Museum steps (whose idea was that anyway?) to get a picture- Calli could only make it up half way- but it was good that she tried! After that, we went back to Willow Grove and ate at the Cheesecake Factory. It was a fun and full night. 

Calli had a chance to share and talk with girls her age, going thru similar battles, and struggles.  No matter how good of friends you have, they do not know and have no way to understand what you and your body are going thru.  It was good to be able to relate to other girls her age- bald girls, girls with hair coming in, girls that could not make it up the steps either, girls that just were not that hungry.  She felt normal.  She felt special, she felt belonging and empathy.


More pictures to come, but this is all I have for now!- Sorry they are not very good quality :)  I forgot my camera!














Jamie Apody & Christine Maddela