Written Late September 24^th

 

Sunday night was difficult for both Greg and I.  We tried to joke a bit about what our future was going to look like.  I threatened him with the nursing home if he developed c-diff.  He really wanted a handicap plaque for the car.  I have been pouring over our insurance book to see what we can expect them to cover.  No MRI’s however they will cover the cost of some wigs.  So we joked about all of the different possibilities there, I thought mullet, he wanted a reverse Mohawk.  Everett was doing his homework at the table and asked me how to spell something and I almost cried, but I decided to laugh instead.  Greg is the speller in our family most of the words I come up with even spell check doesn’t offer any suggestions for. Who will help our poor kids?  We both looked through the pictures in our camera that had been taken over the last few months.  Everett looks more and more like Greg and Amara is just funny.  She has started to do this new thing where she takes one arm out of her shirt sleeve and walks around with her little high heels and one shoulder exposed.  I don’t know where she got from, but it scares us both. 

We both have been trying to write a bit about this experience. I think it is helpful for both of us emotionally whatever the outcome and it is also I thing going to be easier to keep this updated then it would be to keep everyone up to speed individually.  Like I said Greg has been writing too although right now he has found it easier to write with pen and paper.  Either I or he will work on getting his typed out in the near future. 

 We finally came to a decision Sunday night that whatever the outcome was on Monday, that night would be just for us.  We didn’t really want to be on the phone with either family or friends:  that time would come.  Right now we needed to lean on each other and grow as a family.  You see when Greg and I met I was very close to my siblings actually maybe a little bit more close to my nieces and nephews whom I loved and still love very, very dearly (remember guys I am your favorite aunt Abie).  Greg and his family were also quite close.  Neither Greg nor I understood that we needed to separate our relationship from all others, or maybe we just didn’t know how to.  When we went out, we almost always went out with a family member.  Any free weekend was spent with one of our families. All of our holidays, birthdays and anniversaries were shared with others.  When we went out of town, everybody knew and everybody called.  This is not necessarily a bad problem; but because we did not recognize the importance of OUR relationship, our family unit was lost, or maybe it had never really developed to begin with.  Over the last few years this situation has been the seed of much stress and frustration between the both of us. But not knowing how to fix it, or even what to fix, we just continued on perpetuating the situation even further.

So it has been amazing that now after being together ten years, eight of those spent in marriage, we are only now getting to know each other.  The other night Everett said something so funny.  We arrived home after a very busy day of appointments and I had started to cry.  Greg proceeded to lean over and give me a much-needed hug, for the both of us really.  Everett was quite bewildered by what he saw happening:  One, I am not entirely sure he has ever seen me cry and two; he didn’t understand what Greg was doing.  “What are you doing?” he asked Greg.  I said “dad is just giving me a hug.”  “But Why?” “Because Everett, I’m a little sad today and sometimes I just need a hug.”  Still not understanding it, he shrugged his shoulders and climbed out of the car.  Amara who thinks she is the authority of everything said “It’s married Everett.”

Again, many good things have come out of our move.  It is true, all of this, happening so far away from everything that is familiar, is hard.  We feel completely out of control and totally at the mercy of everyone around us.  But at the same time, we are growing stronger in our relationship and the kids are witnessing love and vulnerability, really for the first time.  These are important things and it is a shame that it took this much time and this type of situation to break down our pride, not just with each other, but also with the world as a whole.  These are good things!  Looking at and taking note of the condition and inner workings of our hearts has been good and healing.  Having this chance to reconnect with my good friend Christi and her family has been healing and encouraging.  These are again very good things!  Things have been hard over the last few days, yes, but Greg and I have been so encouraged not only by our own individual growth; but the shared growth we see in our relationship and in our family unit. 

I now want to talk a little bit about my relationship with Christi.  She has played a huge role in my life (even though in truth I have had no contact with her for most of it) and I believe that she will play a huge role in my life and my family’s life in the years to come.

I met Christi very shortly after my fourth birthday.  She was in her very early twenties and newly married.  I was in the toddler nursery at Maranatha Bible Church in Cedar Rapids, Iowa watching my baby sister so that my parents could go to their class.  My dad thinks I liked being with the babies better than I did in my own class.  This is quite possible.  There were much fewer rules and almost no itinerary, so I could spend the majority of my time turning cartwheels.  I believe it was Christi and her husband Doug’s first week at our church; but somehow, she had found her way to the very same nursery I was in.  I found out recently it was because she had wanted to get involved and start serving in the church and has a great love and passion for kids. 

I remember quite clearly the first time I saw her; she was sitting in a child-sized chair at the activity table and I remember thinking, she was the most beautiful person I had ever seen.  I started showing off for her by turning cartwheels around the room, making my dress flop over my head.  During one of these flips, I think I tripped on my dress and fell over.  I think it was then that we first officially met; I believe she helped pick me up.  What is amazing is that I am not the only one that remembers that special meeting; Christi has told me for weeks that she remembers every moment down to what dress I wore. 

Why am I telling you about this particular friend you ask?  Because I think God revealed Himself to me through her actions while I was still a child.  I told you earlier, that it was at the age of four that I decided I needed to be strong and independent.  But for some reason, with Christi and with my grandma Doris, I never felt I needed or wanted to be either strong or independent; I was actually quite needy with them.  I felt a safety that allowed me to be needy when with them.  I don’t know why or how, but I fell instantly in love with Christi.  I use to claim her as my best friend and would be made fun of by kids my own age, but I never cared because I loved her and I felt loved by her.  She was always gentle and kind with me.  I don’t mean to say that everyone else was mean and harsh; it was just that things were quite different with Christi.  I felt like I was known by her.  You have no idea how significant that single thing is until you have experienced it.  To be known, truly known and then loved by someone is just everything.  And it has continued to be everything to me even now as I am “basically” an adult.

 Let me explain something to you.  I am the sixth of seven children.   Even at the age of 4 I was a people watcher.  I was very aware of all of the nonverbal expressions that followed my family.  I always felt like I was a bother.  I was always scared that I would be the one to tip the scale.  I always felt like I was the straw that would break the camel’s back; I tried so desperately to just not need anything from anyone.  I tried to always be on the right side of things, but I’ll tell you when I found myself on the wrong side it was always devastating.  I remember it broke people.  I would stand there and watch the complete devastation my needy little hands caused and I would just die inside.  I would then be more determined than ever to do things myself, to not need anything or anybody; to always be aware of my surroundings and be prepared for everything; in my attempt to never be needy again. I don’t know why, but I never felt that way with Christi.  

I would have to ask Christi to be sure, but I think for about three years we did everything together.  Christi and Doug would drive from Iowa City every Sunday and spend the whole day and evening with my family.  We would do holiday’s together and on occasion Christi and Doug would let my siblings and I stay with them in Iowa City.  I will never forget one night in particular when I was staying with them at their place. I woke up suddenly and remember feeling just plain terrified.  I was sleeping in their guest room, I remember they had a clothing rack on one of the walls and it was casting scary shadows all about the room.  I remember feeling nearly paralyzed.  It was not abnormal for me to wake up frightened, I was often frightened at night, but what happened next was quite unusual.

 As I said before, I hated needing things and this included at times needing comfort.  Typically I would handle this type of situation by myself.  I would tuck my covers tight all around my body having only my head sticking out, that way I could keep an eye on my surroundings.  That night however I did something much different.  I mustered up every bit of courage I could and bolted into Christi’s room.  Then I had a bit of a dilemma, it was quite dark and I couldn’t tell which figure in the bed was Christi and which one was Doug.  Finally I made a spilt-second decision and I poked the person closest to me.  It wasn’t Christi, I started to cry and I said, “You’re not Christi!”  Christi woke up right away and came over to me.  I told both of them I was scared and then you will never believe what happened next.  Well, I will start by saying what they didn’t do.  What they didn’t do was give me a hug and kiss; they didn’t reassure me that I would be okay, they didn’t turn on the lights and look under the bed, they didn’t tuck me back in after a prayer, or even leave me with a night light on.  I am sure you are all now thinking that since they didn’t do any of those very normal and comforting things that they must have done something terrible.  Let me now reassure you that no, it wasn’t terrible at all; in fact what happened next, was I think the most significant moment in my life.  Being a wife (whose husband happens to have a brain tumor) and a mother of two I realize that statement sounds terrible, but please track with me.  They held me and kissed me, they turned on all of the lights, and Christi took me to the living room and let me sit on her lap.  Doug went to the kitchen and brought out a box of lucky charms and a box of doughnuts.  I then spent the whole rest of the night sandwiched between both Christi and Doug eating snacks and watching cartoons.  So, circling back, they didn’t say that everything would be okay; they made everything okay and I didn’t even have to ask for it.  They both did this out of the love in their hearts for me.  I think that happened when I was five and that has continued to be huge, I mean huge in my life. 

Monday morning I left Greg at home and I took both of the kids to Everett’s school early so that they could have time to play and Greg could take time to rest.  I was just barely holding on that morning; I knew that I was about to have all of my fears verbally confirmed by the specialists we were scheduled to see, and I didn’t know if I could handle it.  Again I just kept telling myself “be still there is a healer.”  Finally I was annoyed enough that I couldn’t remember the rest of the song so I looked it up on my phone.  The video version I pulled up was accompanied by all the verses saying, “Be still”.  I took them in as best I could and just tried to pull through. 

After I dropped Everett off at school I had to take the car to the shop.  It had been acting funny for a week, but was now getting to the point that I was scared that it would break down on me.  Again I felt overwhelmed I didn’t know if I could deal with one more thing.  Last Tuesday, before we had gotten any of the news on Greg, we had taken the car to a different shop and they had quoted us at over one thousand dollars.  We just couldn’t handle that right now, not with everything else.  Finally my mind started going crazy with all of the things that might happen that day and I couldn’t take it anymore.  I decided to turn on the radio to at least try to drown out my thoughts.  This is the song that played.

Hope sleeps without me
Her sweet dreams surround me,
But I'm left out
I'll need a fix now
To believe, to feel

These rooms are dark now
These halls are hollow,
And so am I
She is hard to find now
To believe
To see

Hope is what we crave, and that will never change
So I stand and wait
I need a drop of grace to carry me today,
A simple song to say
It's written on my soul:
Hope's what we crave

I won't turn to dust now
Let these tears rust now on my face
Give me the spark now
To believe
To see

Hope is what we crave, and that will never change
So I stand and wait
I need a drop of grace to carry me today,
A simple song to say
It's written on my soul:
Hope's what we crave

To live, to die,
To lose, to get,
To rise above
To love again

To live, to die,
To lose, to get,
To rise above
To love again

To love again

Hope is what we crave, and that will never change
So I stand and wait
I need a drop of grace to carry me today,
A simple song to say
Hope is what we crave
I need a drop of grace
It's written on my soul:
Hope's what we crave

It's written on my soul:
Hope's what we crave

Hope's what we crave

Hope's what I crave

I started to sob uncontrollably.  I hadn’t even ventured to hope during this process.  I didn’t know what there was to hope for.  I didn’t want to count on something that I knew wouldn’t or couldn’t happen.

After the car shop, Amara and I went to pick up Greg.  We all headed to the oncologist office.  Greg told me on the way that they had to reschedule their other patients that day so that they could fit Greg in.  This made me feel even more anxious and hopeless.  The oncologist was very nice.  She was very keen on getting a biopsy; something Greg and I didn’t think would be possible.  Either way, she said we needed to start radiation and chemo right away, five days a week starting next week. 

It is funny to say this, but I think we both left feeling a little relieved.  We both liked her and it felt good to have a plan set in motion even if the plan was going to stink. 

We next went to meet Christi she was going to watch Amara for the rest of the day and she would then pick Everett up from school so that we could meet with the neurosurgeon by ourselves. 

When we arrived at our next appointment they brought us back to the examination room almost right away.  We sat there for quite a while.  After a bit, I had to excuse myself to use the bathroom.  As I walked away I could see that there was a little crowd around what I believe where Greg’s MRI images.  I could hear them whisper back and forth and my stomach just dropped, none of it sounded good.  I went back to Greg and made a little joke about the condition of their bathrooms.  I told him “if this was a restaurant we would need to leave.”  He laughed a little bit.  Finally the Doctor came in and introduced himself.  He proceeded to tell us they had all been looking at the images for a while.  He told us he believed he could say quite confidently that the tumor is benign.  He believes that the tumor is a Cavernous Malformation. 

 (A cavernoma or cavernous malformation is a vascular abnormality of the central nervous system. It consists of a cluster of abnormal, dilated vessels. Pathologically, it is red to purple in colour, appearing as a raspberry. Cavernomas contain blood products at various stages of evolution and are usually less than 3 centimeters in size.)

The Doctor said the reason all of these symptoms came on so suddenly is because his had begun to bleed.  He said that it appears for now that the bleeding has stopped however once they bleed for the first time it is likely to do it again.  He said that we had two options we could watch it for a month or we could operate.  Again we were reminded of the risk that accompanies an operation on the brainstem.  He asked for our permission to pull in a colleague who does more surgeries on the brainstem than him (he also happened to be the head of the department).  We of course gave our permission and then returned to the waiting room to wait for this colleague to have an opening in his schedule.  While waiting we met a young lady who was going to have her second craniotomy.  She and her family had traveled from Minnesota where they had been told that she was inoperable. However, she had been given the green light from this office which is where they had come a year ago for her first craniotomy.

At this same moment Christi was driving to Everett’s school.  Amara had fallen asleep in the car so Christi turned on the radio softly and then began to cry.  Just as she turned it on, Steven Curtis Chapman’s “Cinderella” began to play.  Christi said she looked at Amara and then listened to the song and began to pray and pleaded with God to have Mercy.

After hours in the waiting room we finally got called into the next surgeon’s office.  Once again they ran Greg through a series of tests and asked him all of the same preliminary questions.  Doctor Castillo (a very nice young lady) who assists the head of the department told us what we could expect next.  She said that she had assisted Doctor Spetzler with this surgery several times and felt like he would give us good odds.  Very shortly after that Dr. Spetzler came in.  (He was a very nice middle aged gentleman.)  He said that he had also looked at Greg’s MRI and agreed that it was a Cavernous Malformation.  Unfortunately, this really meant nothing to either Greg or I; we didn’t know if this was better or worse than cancer.  I know that sounds funny; but the tumor, although benign, is on the brainstem.  With this diagnosis, the tools available to deal with the tumor were reduced to one, surgery.  From what we understood from them, neither radiation nor chemo would help.   

He said that he would be willing to do the surgery and that it needed to be done within six weeks.  He said that Greg’s symptoms might get a little bit better now that the bleeding had stopped, but reminded us that bleeding could start up again at anytime and that any bleeding in the brain causes permanent damage.   He said they would have to remove a portion of his skull behind his ear.  They usually replace it after the surgery.  He would then spend several days in the ICU and then there is a couple of different ways that it could go.  He said 50% of his patients are able to go home after a few days the other 50% needed a stay in a rehabilitation unit to build up strength.  Since it is an operation on Greg’s brainstem it carries all of the risks that you can imagine.  Some of the minor ones being: needing a tracheostomy tube for a period of time, needing a feeding tube for a period of time,  and possible sensation and strength deficits in his extremities, just to name a few.

Greg and I left the Doctor’s office just exhausted.  We started to mull over all of the new news we had just received.    We felt relieved that it wasn’t cancer like we had originally thought.  We were also very relieved that we had found someone willing to surgically remove it.  I felt like we had just been spared; but still, it looked like our immediate future was this huge mountain that still needed to be climbed and then…, who knew what would be on the other side.  Greg was mostly quiet on our way to the car.  He also agreed that we had definitely been spared from the death sentence which we both thought was going to be ours.  And we tried our best to really grasp what had just happen and we decided to just thank God.

As we arrived at the car Greg’s phone beeped saying that he had missed a call; it was our Doctor friend from Iowa so I had him call before I started the drive to meet Christi.  The Doctor answered right away and I could hear her voice on the other end tell Greg authoritatively “Greg sit down, I have something to tell you.”  He told her “alright I’m sitting.”  She said “Greg I have something to tell you, you are going to live!”  After that there was a bit of a break.  She then continued to say that she and the neurosurgeon had brought in a radiologist and that together they looked at Greg’s MRI and were able to conclude that it was a Cavernous Malformation.  She said that it would have to be removed because you could see that it had been growing and also bleeding.  Again she went over that it is in a bad location, but told us the neurosurgeon in Iowa had given her a name of a neurosurgeon in Arizona.  Our doctor friend then became quite insistent that we write down the name right way because this was the one that MUST do the surgery.  Greg scrambled to find a piece of paper and a pen and then said “okay I’m ready.”

What Happened next is without a doubt one of those God moments that was meant for just us!

She said “Doctor Robert Spetzler.”  Greg just stopped.  There was now a long pause and he said “you will never believe it, that is the surgeon that we just saw and he came up with the same diagnosis.”  I could hear the Dr. on the phone tell Greg that she was shaking and then she said something like “there must be a God.”  Later that night she would tell Greg that after the three of them (herself, the neurosurgeon and the radiologist) came up with their diagnostic conclusion, she started screaming and jumping.  It was a miracle.  Without a doubt, this was a miracle.

We drove to meet Christi and I excitedly opened her door and told her first that it wasn’t cancer, and then second that it could be operated on and removed.  She started crying right away and then began to thanking God.  I grabbed her and told her I wasn’t done yet there was more.  We then proceeded to tell her about the phone call we had just had.  We all agreed it was simply and completely nothing short of miraculous.  THANK YOU GOD!!!!!

We took the kids out for sushi for a celebratory dinner.  We had gone to this same restaurant a year ago while visiting the phoenix area.  The kids had been begging since moving here to go back, but we were saving it for something special.  Last December we had gone there to celebrate Greg’s birthday this time we went to celebrate his life, his life given that night in abundance.

After putting the kids to sleep that night Greg sat on the couch and began to Google both his new diagnosis and also This Dr. Spetzler.  I am just going to encourage all of you to do the same.  He is not just the best in the area, but he is actually the best in the nation.

I sat down next to him and began to relay to him what had happened to me that morning.  I had him listen to the song, “Hope is what we Crave” by the group for King and Country.  I then had him watch and listen to the music video I found earlier that morning.  I began to tear-up as I saw the verses displayed on the video and I began to see how perfectly God had orchestrated this whole thing.  These were the verses:

Hebrews 11:1 Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see.

Luke 1:37 For with God nothing is ever impossible and no word from God shall be without power or impossible of fulfillment.

2^nd Chronicles 15:7 But you must remain strong and not become discouraged.  Your actions will be rewarded.

Psalms 46:10 He says, Be Still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.

Exodus 14:14 The Lord is fighting for you! So be still!

After reading these again my heart clung to them as though it was all part of a love letter written just for me.  It felt like what was described in Luke chapter 2 verse 19 “But Mary treasured up all of these things and pondered them in her heart”.   I began to think of that night that I spent snuggled up between Christi and Doug; I remembered how secure I felt and how assured I was of their intensions and their love for me.  This is exactly how I felt Monday night.  God gave what I didn’t know to ask for, (actually, couldn’t ask for); He knew and understood the condition and the limitations of my heart and soul.  He wrapped Himself around the whole situation and collected all of our tears and then showed Himself to be abundantly adequate for us.  He did more than tell me that it would be okay, He made it okay for me; just as He had when I was only a child.  God provided for both Greg and I so extravagantly that we can only in awe say, “Thank You.” 

As I shared the last details with Christi Tuesday morning we decided to mark our calendars for September the 23rd as a day of celebration.  She wrote “The day God rose Greg from the grave into life,” on her calendar and I wrote “The Day the Lord parted the Red Sea in our lives“ on mine.

We realized of course that our journey is not yet over.  There are still many hurdles left in our path.  However I no longer feel like they matter nor do I feel like their outcomes matter.  What matters is that I have found that the God that I before believed to be distant and indifferent was actually close and invested, what else is there for me to fear. 

Please continue to pray for Greg and our family in the coming days.  Pray for strength, guidance, good health and peace.  Please pray that the final details will fall into place.  The surgery date has been set for October 11th.  I will continue to keep people informed with any updates that we receive.

Also since Greg will have a bit of a hospital stay I thought about something fun anyone who wanted to could help with.  Our son Everett discovered Knock Knock Jokes this summer and that is about all that we have heard from him and now also from our daughter Amara.   We have spent many hours listening to Everett try to navigate his way through the humor of this particular type of joke and it has just been hilarious.  I thought that people could either send us written ones or recordings of their best Knock Knock Jokes.  I would then put them around his hospital room or show him the video or the recording.  It would be a fun way to get the kids involved and I think it will bring some much needed humor into this situation.