Monday, December 9, 2013


Both Greg and I have received several phone calls and e-mails wondering how we are doing.  I realize I have left people in the lurch, I am sure people are concerned with how Greg is getting along; let me assure you that wasn’t my intention.  I have tried now for about six weeks to update this site.  As you can imagine there have been a lot of changes that have taken place in our little family.  First I blamed not updating this on being too busy.  Greg wasn’t released from the hospital till the 30th of October, just shy of a three week hospitalization this made my daily routine with Greg and the kids a little challenging and wanting for time.  Then it was preparing the apartment for Greg coming home.   After that it was adjusting to Greg actually being home and trying to get the kids to understand his new physical limitations.  After just one short week of being home I had to get all of us ready for traveling back to Iowa.  Then of course, the actual visit to Iowa. During our short two-week stay, Greg received outpatient therapy from our old friends and coworkers at St. Luke’s hospital in Cedar Rapids and I was able to pick up hours at the hospital.  We have been back home in Arizona now for a couple of weeks and I think I am running out of excuses not to give an update.

So this is where things stand with Greg; he is eight weeks post-op and doing much better than he ever should be doing (given the surgery he had).  The first couple of days were really scary.  I did not realize how thankful I should have been that he was able to breathe on his own and that swallowing wasn’t more of an issue; but I confess, I was distracted by how rough he looked.  Three days post-op, he made his first attempts to walk; he literally had to be held up just to take a couple of steps.  Now he is walking around, primarily on his own, with the assistance of a cane.  He went from not being able to open his eyes at all to being able to use one eye if the other was covered to now being able to have both eyes open most of the time. He can now eat everything without issue; in the beginning he basically ate baby food.  These are great gains considering where he started; but there is still quite a way to go.

Greg continues to struggle with his balance.  I’ve noticed it becomes more of a problem when he is tired or stressed or if there is a lot of people, noise or movement around. He still needs to use his walker when we go into heavily populated areas and we continue to use his wheel chair for long distances.  His left eye still doesn’t want to cooperate, it is a little delayed when he moves, which makes him dizzy, and it doesn’t want to focus very well.  When his left eye acts up (again normally when he is tired) he has to use glasses that blocks the vision to that eye. He still can’t close that eye which makes it constantly dry and irritated; at night I have to tape it shut so that it isn’t too irritated in the morning.  

He continues to have diminished feeling on the right side of his body.  He has described the sensation as “being asleep” and “being stuck with pins and needles”; but recently it has been getting increasingly more painful.  He is not able to feel hot or cold on that side, instead almost all sensation on that side his body processes as pain.  Simple things like the cool air outside or the air conditioning is painful to him; hot showers or a warm coffee mug does the same thing.  His speech therapist thinks that his hearing might have been affected so we are hoping to get orders from the doctor to get that checked out.  He continues to struggle focusing when there is a lot of noise or motion, he has problems with bright or dim lights, and all of those things affect his balance. 

Headaches still plague him.  Usually it is at the end of a busy day or when there is a lot of stress, or if he is around a lot of stimuli for too long.  He still doesn’t have much endurance, after about 15 minutes on the exercise bike he needs to call it quits.   His memory is getting better, but still needs a bit of work.  Getting good sleep is still difficult.  He has a hard time getting his brain to turn off at night. Lastly he has a constant metallic taste in his mouth which makes food taste bad at times.

He receives Physical and Speech Therapy three times a week; despite our best efforts our health insurance has continued to deny Occupational Therapy.  On his off days we go to our apartment’s gym mostly to work on his endurance.  He is not yet good enough to safely be left alone, but I am hopeful he will be able to soon.  At that point I will be free to get a job.  We see the surgeon on Tuesday so we are hoping for some answers and hopefully a timeline.

 As I alluded to before, we are beyond fortunate that this is all that he is dealing with.   I’m saying that mostly because I need constant reminders of what could have been.  Last Wednesday Greg turned 35; we came very close to that not happening.  Even still I must admit, this stage of the process has been hard for me, I am normally someone who likes to face problems head-on.  When there’s a problem I like to think out all of the possible solutions, I’ll try them out in my head several times and then once I am sure of the solution I start marching.    I’ve tried and tried, but still haven’t found a direction in which to march.  Our situation doesn’t seem to have a solution, at least not one that I can produce and it’s embarrassing.  My independent, I’ll-do-it-myself, comfort zone has been horribly breached.   After weeks of trying to do it myself, the reality of our situation has stayed the same.  Last week we spent 9 hours in line at the social services offices for food stamps.  I don’t even know how to describe that experience.  They finally approved us for December’s benefits, but we will have to wait to find out if we will be approved for anything else. Facing problems head-on is easy for me when I can provide the solution myself; but when the solution is that you have to ask for help, well that is a different story and a hard pill for me to swallow.

 Without the same “peaceful and thankful” tone I left off with, I haven’t known how to update this thing; but I finally decided I’m just going to update it anyway.  I kept hoping that one day I would either wake up with some amazing plan that would fix everything, or that Greg would miraculously be good enough to be left alone with Amara so that I could work.   Well neither has happened.

So these last several weeks have been hard.  I’ve felt overwhelmed again; I’ve been scared, I’ve felt embarrassed, angry and exposed.  I haven’t felt very peaceful, thankful or hopeful; I haven’t felt very blessed, spared, “cared for” or encouraged.  Those are all things that I am positive I am supposed to feel after what we have just recently been brought out of, but I don’t.  I instead feel the exact opposite of all of those.  I feel like a sitting duck; I feel vulnerable and I hate feeling vulnerable.   I’ve felt and have been needy; that’s been the worst of all.  I have had all of these things boiling in me now for weeks and I just feel lost in it.

Usually once I have chosen a path I stick to it come hell or high water.  I take a lot of time deciding which path to take, I choose only after it has been tried and tested multiple times and found to be true.  Before the surgery I had found and tested my path.  The path that I had tested and decided on was a path of peace.  It was a path where I found and knew myself to be cared and provided for; it was a path where I surrendered my controlling grasp of the situation and its outcomes and submitted that God was trustworthy; I found myself and my contingency plans completely inadequate in the world that God created and controlled.  My mind was made up, I was not going to “busy” myself with contingency plans.  I was going to walk side by side with God; I would be content with God’s graces given to me moment by moment.

Well crap, that didn’t work for long! 

My personality type just fought the Zen-ness of peace; it started to feel a little impractical. Peace started to feel ignorant, naive and foolish, all things that my very being shuns and despises.  I hate to look and feel the fool.  I hate being caught unprepared, it feels irresponsible and I hate looking and feeling irresponsible.   After the surgery when the dust began to settle and things started to fall into their new foreign locations I found my family and me to be completely unprepared for everything that had transpired.  Reality came hurling at me, with my normal defense mechanisms down, it took the wind completely out of my sails. 

Since the surgery I have been everything that I hate.  I have been emotional, I’ve had no control, I have been completely vulnerable, and I’ve been needy.  I have no idea day to day what is going to happen let alone a week, month or year from now.  Basically it’s been “Abie hell.”   

Several years ago I was told that the words that would best describe me would also very accurately describe coarse sandpaper.  (No worries it was and is completely true.) In short I am not a tender loving, nurturing or an emotionally available type of person; it’s just not within my nature.  However a curious thing happened to me before and during Greg’s surgery; I was nice.  I was emotionally available; I think I might have even been warm and if not nurturing I was close to it. 

Before the surgery I was amazed at the freedom I felt to be honest and vulnerable, I was able to put my contingency plans aside and enjoy the moments that I had with Greg and the kids.  But something happened after the surgery that took all of that away and made me feel foolish for having allowed myself to put my guard down.   I started to realize what a life changer this was.  Greg was going to have a long recovery and we were just at the beginning of what would be a very long journey.  Before the surgery I had been content taking each day as it came; I was just thankful that it looked like we were going to have a future together. After the surgery I allowed my imagination to run wild with what our future would look like. I panicked and tried to make up for lost time. Right away I dusted off my boots and picked up all of my contingency planning skills.    I started running scenario after scenario through my head determined to find a solution.  It would take months to describe all of the craziness that has transpired since the surgery.  I’ll simply say that it seems that every panicked attempt I have made to add even a little bit of security to our family’s current situation has ended with doors slammed shut.  So I tried out my old adage “if force doesn’t work you’re not using enough.”  Well that just kept making everything worse. 

One would think that with how this whole journey started that I would remember what God taught me in the beginning.  That I would stop myself from running ahead of him in my mind; that I would have learned to stay within the protection of his side.  That getting down on a bended knee would be something that I would easily and naturally be inclined to do.  I must honestly admit that I can’t.  I’ve not really been in a very trusting, lesson learning and growing frame of mind.  I’m more in a resentful, annoyed let’s get this fixed as fast as possible frame of mind.    You see the thing that I have found about God is that he always makes things into a process and a journey.  If you don’t like where you are at, well that’s just too bad because God has a lesson in it for you so you might as well make yourself comfortable.  Well I don’t want to get comfortable here, it’s awful! I don’t want to be left in the desert with the manna.  The very last thing that I want to do is to turn to Him.  If I do that then I will have to play by his rules and submit that He and not I can fix this situation.  I have found that what I thought was a little prideful situation is actually a huge pride problem.  I don’t like others to be part of the problems or the solutions in my life.  I like my privacy; I don’t want to be thought of as lazy, irresponsible or ill prepared.  I absolutely abhor looking needy or seeming desperate.  I don’t like receiving help from others, but what I hate even more is needing help.

The week before Greg was released from the hospital the pastor of our church did a sermon on freedom. He showed a clip from Shawshank Redemption; it is the one where Tim Robbins character climbed out of a drainage pipe and then threw his hands up in the air.  That is a picture of freedom!  After that clip the pastor asked why we, after experiencing such freedom, turn around to reenter that drainage pipe? Why do we crawl back through yards and yards of muck and mire to our prison cell?  I wish I had the answer to that because it is exactly what I did.  That Sunday I allowed myself to hear that message and I sat and cried for a while in my friend Christi’s arms.  Moments later I pulled myself together and resolved to forget the whole thing.  Writing this brought that Sunday to mind; I think I am now in the process of climbing back out, but it seems a little harder this time.


So this is where I am at right now.  I started this blog determined to be open and honest about this process (the good the bad and the ugly), I hadn’t thought that I would be back here again, but the truth is that I am. 

Despite my failed attempts to independently fix our situation we have not been left alone.  There is a part of me that doesn’t want to acknowledge any good that happens unless everything is good.  I wish my pride would have allowed me to acknowledge all that has been done for us weeks ago.  From the beginning we have been surrounded in love, prayer and support.  There has been a food drive that has filled our pantry. We have been given enough meals to fill our fridge and freezer.  Family and new friends here have helped with everything from finances, to watching our kids, to allowing us to be part of their family, to bringing Christmas presents for our kids.  In Iowa my coworkers donated their hours to me so that I could work; people also donated their paid time off to Greg so he was able to receive almost a whole month of pay.  We were given money for our Christmas. We were given money for our bills.  People donated their time to work with Greg. Friends of ours allowed us to use their van while we were in Iowa so we didn’t have to use what was left of our resources to rent one.  Other friends let us use their spare car seats so that I didn’t have to figure out a way to bring ours.  Coworkers bought me lunch while I was at work.  My dad took off work so he could take care of Greg. My mom dropped everything so that she could take care of the kids.  This is only a very, very short list of the ways that we have been provided for.  I heard this song on the radio the other day this is just the first verse. 

Unspoken “Lift my life up”

You brought me this far
So why would I question you now
You have provided
So why would I start to doubt
I've never been stranded, abandoned
Or left here to fight alone

                It has taken me awhile but I have had to concede that all of that has been true in not just this situation but in my life as a whole.  None of it has been worked out in ways that I would have chosen them to be.  I wanted to be sufficient and adequate within myself.  That isn’t going to be my reality.  At the end of this process I hope that I will be able to say that the rest of the song is true of me as well.

Till then,  When the intervals of darkness come, as come they must- when the sun is hid and the stars withdraw their shining- we repair to the lamps which were kindled by their ray, to guide our steps to the East again, where the dawn is.”