It's Been Awhile

I have written and deleted this entire post three different times.  I have struggled with what to write, how honest to be, and how it would be perceived.  On this fourth try, I hope that this post is accepted.  I will write more about my actual surgery and recovery experience later.

The last three and a half months have been nothing short of the wildest ride I have ever been on or could have imagined I would be on.  I have experienced every single emotion, took risks, and battled.  I came out of surgery better than I, my family, my friends, my surgeons, my nurses, my therapists--better than EVERYONE expected.

And I have many mixed feelings about that.  'Huh?,' you're asking.  'Why aren't you super excited?'

I am.  Trust me.  I am counting my blessings big time.  But what has happened to me the last two and a half years, and especially the last three and a half months, is hard for me to comprehend.  I was told by many that I was incredibly lucky after my first stroke.  As much as I hated the Iowa City surgeon, he was right in nearly everything he said to me.  "You were spared," he said.  Gosh, how I despised him for saying that to me.  My second stroke and my surgery really put in to perspective how massive my first stroke was.  And now, looking back, I think his comments came from my recovery directly contradicting his medical knowledge and experiences.  I somewhat understand that now.

As I was suffering the symptoms of my second stroke, I was convinced that I would be worse than I was after my first stroke.  But I wasn't.  I was hardly phased.  And surely, after a massive, risky surgery, I would be majorly affected. All the research I had done and the meetings with various neurosurgeons and neurologists led me to believe that I would be at square one after this surgery.  I was fully prepared for that and had come to peace with my decision to battle in the front line instead of hang back,

And then I woke up.  I didn't have the massive headache everyone guaranteed me that I would have, I could move and feel every body part, and I could see.  I saw two of everything, but I could see.  Other than the most stiff neck imaginable and an intense amount of nausea, I was me.  Every day we were in Arizona, I noticed BIG improvements in my balance, pain, and nausea.  I was able to go home after eleven days.

Then, I checked in to inpatient rehab where I continued to make large strides and ended up only staying there for three days.  On April 15th I was discharged from outpatient therapy.  Absolutely unbelievable.

Now, a lot of you commend me for and credit my recovery rate to my strength.  I will admit that it has taken a lot of mental and physical strength to recover from my deficits and I proudly own that.  BUT, I had absolutely NOTHING to do with the creation of those deficits, and only those deficits.  While I was suffering from my strokes or heavily sedated during surgery, I wasn't in control.  I was surviving, not fighting.  I should have numerous and significant deficits, not just from my surgery, but both of my strokes.  I would have NEVER thought I would be where I am now eight weeks after brainstem surgery.

Are you still confused?  I should be happy that I have been so lucky, right?

I am.  I promise you that I am elated.   I have a third chance at life.  Not to many other people can say that.

But when I was at Covenant for inpatient rehab, I really struggled.  There were many patients that had an insurmountable road of recovery ahead of them.  I would watch their therapy sessions and compare them to mine.  I would be balancing on a half moon foam roller turned upside down as a therapist threw or bounced a basketball at me and they would spend time in a mechanical lift just so they could get some time in standing position.  I would look around at many of the people there and think, "That should be me.  Why after two strokes and brainstem surgery 12 days ago is that not me?"  And then immediately after that think, "Thank God that isn't me."  I felt a lot guilt for being so lucky.  I felt heartbreak for them because I knew how mentally, emotionally, spiritually, and physically hard it all was.  Most of all though, I didn't understand why I was so lucky.  I mentioned this to my mom one day as we were waiting for my outpatient sessions and she responded, without missing a beat, "I understand that, but there are so many people that look at you and think the same thing--thank God that isn't me."  Good point, Mom.  Good point.

And then there is the tennis match that plays on repeat everyday in my head featuring Negative Nancy and Positive Polly.  All day long I go back and forth between being frustrated and negative about what has happened to being blissfully happy about how I turned out.  For example, I will get frustrated that I do not have enough depth perception to judge how far to put my toothbrush under the faucet and immediately follow it with, "thank God I can brush my own teeth."  Or, I will see people walk or run past the house and say, "I wish I could do that," and immediately follow it with, "thank God I can walk on my own."

And then there was April 11 where I found out my eye was too deviated towards my nose to get a prism at this time.  Wow, Negative Nancy won that match by a landslide that day.  It was the first time in two and a half years that I had experienced anger.  And let me tell you, I could best describe myself as Anger in the movie, 'Inside Out', when his head starts on fire.  I knew my eye was bad and I expected to need the highest strength prism, but I had not expected to leave without one.  About halfway home that day, I started to come back down to Earth and my anger turned on me.  I eventually became mad at myself for being mad.  My eye could eventually be fixed with surgery and my eye was my only deficit.  Really, Jamie?  Get over yourself and be grateful that you are home, you get to see your kids, and you are self sufficient.  It could all be so much worse.

Recently, I have been planning the golf outing and have been communicating with a few families that we are hoping to help.  I have also been reading scholarship essays.  Listening and reading about what others are going through has brought back a lot of the feelings that I experienced during therapy.  When they ask me how I am, I am almost ashamed to share with them.  How can I share my good fortune when they are suffering so?  I am at a loss for words when I talk to them because all I can think about is, why me?  Why was I given such a good chance?  What did I do to deserve it?  What is in store for me in the future--what will I be used for?  Am I strong enough or brave enough for whatever that is?  But, above everything else, am I worthy of it?

Yes, in the last year and a half I have done many things to help others.  But, if I am being honest, I have had selfish intentions.  I was in hard negotiations with God.  I hoped that if I did enough to help others here, God wouldn't want me up there with Him.  I was helping others, but I was also trying to save myself in the process.  Now that's not very Christian-like, is it?  Plus, I know better than to think that God actually works like that.

So, I am left with really only one explanation as to why I am okay.

YOU.  I am able to be nearly myself, be at home, be with Patrick, our girls, and the rest of our family and friends because of all of you.  I am able to live in the present and look forward to my future because of all of you.  My army.

It was my goal to have as many people as possible praying for me during my surgery.  I wanted the prayers to be so loud that God couldn't ignore them.  After my surgery, well I should say four days after my surgery....I remember a total of six things from the first four days.  Anyways, once I started to come to a bit more, Patrick told me about the day of the surgery and those after.  He told me about all the messages, texts, calls, and post shares.  It is impossible to adequately describe to you how I felt or the many thoughts that instantly filled my mind.  But, I can tell that I am convinced that you all saved me.  God heard you loud and clear.  It is the only possible explanation.

I would like to leave you with this.  Almost every single action movie has a scene where the good guy and the bad guy end up fighting on the side of a cliff or a high building.  After a long fight, the good guy usually sends the bad guy over the edge but not without putting himself in harms way first.  Just when you think that good guy is going to lose his grip and fall, one of the fellow good guys grabs his arm and pulls him to safety.

I feel like this is my story.  I threw my CM over the cliff, but I barely survived it all, and you were all there to grab my arm and pull me back to safety.  Your kindness, generosity, and prayers kept me focused on everything positive and beautiful in my life when I needed it the most.  It all helped me enter that operating room at peace.  It all gave me the strength I needed to recover.

And so I find myself in the exact spot I was in after my first stroke--how can I possibly say thank you?  My answer is the same it was then--I promise you that I will do everything I can to repay you for all of it.  I will be grateful for my blessings and I will strive to pay it all forward.

I will be the best example I possibly can be to do better and be better.

God Bless You All!

April 8

Facebook post from Patrick

Little Miss Myah finally got her day with Mommy at therapy. These were special moments for me to capture. The last time Myah was in this room, she also was in her mommy's tummy.

We've come a long ways since October of 2013.....and we will continue to travel even further, one step, one squat, one lunge at a time. It has been quite the Journey.

Prayer Warriors - Big appointment for us on Monday in Iowa City. Our first Neuropthomology appointment since surgery....please keep us in your thoughts.
Thank you!!

April 1

Facebook post from Patrick

What a difference a month can make!! On March 1st we left early in the morning, during a snowstorm, headed on a journey that we didn't know what held for us. We were told "two weeks to two months" we could be gone.

Well here we are on April 1, 28 days out from brain surgery. We are home, we are cherishing every minute, and my wife is GSD'ing.

Jamie just completed her 2nd week of outpatient therapy. She goes 3 days a week for about 1.5 hours a day. I usually drop her off and head to work, but today I decided work could wait....I wanted to see the improvements she had made in the past two weeks. And She. Knocked. My. Socks. Off. I could not be more proud.

At one point I started to poke fun at her on the balance board, not a smart choice as Jamie challenged me to do it. "If you think it's so easy, get your butt up here and do it." I learned very quickly, as my thighs started to burn, that the balance board was no joke and that Jamie's strength was being challenged with every movement. It was taxing for someone who didn't have brain surgery, could only imagine how difficult it was for Jamie....but step by step she was conquering that board!!!

Jamie's strength and stamina steadily increase. She may not admit to that, but I see it in her every day. She does get exhausted throughout the day, but naps in the morning and afternoons help.

For our prayer warriors, prayers for continued healing for her eyes. Her vision remains double. We have a Neuropthomology appt on the 11th and we hope to be fitted with a prism to lessen the double vision. It is accurate to say Jamie can not wait for this day!! Typing, reading, looking at a computer for longer than 2 minutes just isn't possible for her right now. I personally look forward to her having those luxuries back soon.

As for our family, we are just tickled pink to be back home. Tucking the kids in, giving hugs and kisses, simply dropping them off for school has taken on a new meaning. Being separated for two weeks was hard...but has provided a fresh perspective to the important things in life.

We continue to try and Do Better. Be Better. On a daily basis. What I saw this morning showed me that we are.

March 18

Facebook post from Patrick

Look who got discharged from in-patient rehab today!!! It feels soooo good to have the entire family under one roof again.

Because of all of your prayers, love and support, we have come so far in only two weeks --- We Are Home!

March 16, 17, 18

Facebook post from Patrick

Well, Jamie's 15 day stint on the DL is about to come to an end....which means I am off the hook for updates. : ) I wanted to leave you with this.

The past three days have truly been magical for me. I made an executive decision on Tuesday night to call upon our first Daddy/Daughter dates of 2016. The past three days I was able to take each of our three older daughters on dates that included therapy with mommy, lunch date with Dad and a fun activity of the girls choice....it was amazing to be back home and spend one on one time with Seeri, Jaelyn, and Linden!!!

Below are pictures and smiles from our three days.

Lastly, these days couldn't have happened without the support of my employer, First National Bank. My work family has, "Had My Back", from February 15th on...and have been there for me every step of the way. To all of my work family, Thank You for allowing me this opportunity! It was the three best days of the year so far!!!

P.S. To the anonymous person who paid for our Jaelyn and my lunch at Carlos O'Kellys....thank you. I searched that restaurant high and low to find someone I knew....and didn't see a sole. Thank you to whoever you are....Thank you!

March 15

Facebook post from Patrick---first time seeing the girls since we left.  First night in Covenant Rehabilitation

Says it all......

March 13, 14, 15

Facebook post from Patrick

We're coming home! WE ARE COMING HOME!!!

Our Arizona journey started two weeks ago today driving through a snowstorm on our way to Phoenix. One leg of the journey will end today as we fly home, with a scheduled stay with our friends at Covenant Rehab.

We can not thank the staff at St Josephs Hospital/Barrow Brain Institute enough for their care of us over the past 12 days. We are beyond thankful to be boarding this plane on our way home.

Dr. Spetzler spoke with us yesterday for the first time since viewing the post surgical mri, he gave us the words we have been longing for. "Jamie, we could not be more pleased with the outcome of the surgery. The cavernous malformation was removed successfully." It was the first time I heard it come from his mouth...it finally hit me.

To all of the village at home helping with our kids, so very grateful and thankful for each and every one of you.

We are boarding now....Iowa, see you in three hours! : )

Do Better.
Be Better.

P.S. I have informed Jamie that her 15 day stint on the DL is almost done. I can't wait for her to take this back over, I havent written this much since Mrs. Hageman's College Prep course.

March 12

Facebook post from Patrick

"Trouble and distress are woven into the very fabric of this perishing world. Only My Life in you can empower you to face this endless flow of problems with good cheer".

Good Cheer would be a great way to describe our Saturday. Jamie had No Nausea, let me repeat that...NO NAUSEA. Thank God!

As typical with a lot of hospitals St Josephs pt and ot staff is off for the weekend, so who was Jamie's therapist yesterday? Me! And boy did we have fun. Actually, every test and course I set up for Jamie she crushed. So. Proud. Of. Her!

We had the opportunity to enjoy the healing garden a couple of different times yesterday, that place is simply Heaven on Earth! Peaceful. Quiet. Healing. Perfect.

Enjoy a few of the pictures below...and a side note, I survived the laundromat in what I would call not a very safe neighborhood, but I survived and lived to tell the tale. PS- Thank you Aunt Kelli for taking on Linden and Myah over the weekend.

March 11

Facebook post from Patrick

Friday Recap - Yesterday was a first, we had our valley and peak all in the same day. In the famous words of Billy Bob from one of my favorite movies, "Varsity Blues ", Jamie puked and rallied. (My attempt at humor, sorry if too detailed).

Our morning started off very good as Jamie showered and ate breakfast all by herself. Then came a rage of nausea that consumed her for most of the morning. The Dr's still feel that the surgery could have irritated the nausea control system and it will simply take time to heal.

I personally thought that we were going to have a duplicate of Tuesday (or whatever day was our challenging day, at this point it has all melted together in my mind), but just like my wife has shown me a thousand times she battled back and had the best afternoon of her post surgical recovery.

She dominated pt and ot. She went outside and with assistance from the walker completed a 100 yard walk. She simply owned the afternoon. I could not have been more proud of her.

The afternoon was topped off with a short visit from a Turkey Valley friend that I hadn't seen in probably 15 years. A high school teammate of mines mom stopped in to give us hugs and well wishes. Although it was a two minute visit, it put huge smiles on our faces to see another one of our Iowa friends. Thank you Donna Karnik for your gift and visit.

Enjoy the pictures, they sure do a much better job of showing you Jamie's fight than my words do.

God bless! Thank you all for everything.

March 10

Facebook post from Patrick

"Walk by Faith, not by sight. As you take steps of Faith, depending on Me, I will show you how much I can do for you.....The issue is not your strength but Mine, which is limitless. By walking close to Me, you can accomplish My purposes in My strength."

We have continued to progress and happy to report that we were able to meet up with a few from our Arizona Army!

Molly Mac, a friend from NLXF, surprised us with a short visit in the healing garden yesterday. It was soooo great to see a friendly Cedar Valley face. She even provided us a Starbucks gift card for future smoothies and a gift for our special Starbucks employee Ruthie. I said to Jamie, "Honestly, who does that, who would think to give a gift to a complete stranger that I mentioned one time in a FB post". Jamie's response was perfect, "Molly Mac does". Thank you Molly for shining your light!

A very good friend of ours Angie Haskovec slipped up to our room and dropped off a gift basket for us filled with Jamie's favorites. I unfortunately missed her, but it speaks volumes of her as she provided for our family while 29 weeks pregant. You can see more of her storyhttp://haskovecstwolittleangels.blogspot.com/?m=1.

Lastly, I had the opportunity to visit old neighbors of ours from Apollo St. Max and Gwen lived two houses down from us and our girls frequent their driveway as a turn around point with their bikes and little cars. Max and Gwen took very fondly to our girls and served as almost another set of grandparents for our kids. It was soooo unbelievably nice to see them. As we start to make plans on how we are going to get back to Iowa, they have offered to take some of our items back with them. As we sit here today, we will be flying home....as to when, we hope sometime next week.

As you can see our army continues to provide and we could not be more grateful for every ones generosity and genuine care for us.

Jamie update- PT and OT went well yesterday. Although she did vomit at 430 am, the steroid that was administered yesterday helped to reduce her vomiting and give her an added boost. Her stamina grew substantially yesterday. Step by step we are getting there...it just takes time.

Specific Prayers for Jamie's double vision to improve and reduced nausea would be greatly appreciated.

Do Better.
Be Better.

March 9

Facebook post from Patrick

As I sit here and try to come up with a recap from yesterday....I simply pause and reflect on the past 6 days and I am overwhelmed with gratefulness. Grateful for the surgery outcome, grateful to be on this road to recovery, grateful for all the friends and family that we have in our corner back home cheering us on and caring for Seeri, Jaelyn, Linden, and Myah!

Simply grateful for all of you!

We had an eventful day yesterday and we're able to take in about 20 minutes of sunshine. Jamie asked me how the weather was prior to going outside and I replied with, "It is probably a Top 5 day for Iowa weather", which is the typical norm these Arizona folks get to experience.

We had our pt and ot visits and all went well. They continue to challenge Jamie to build her stamina. Every activity we do just zaps her energy, but we have been here before and as what has been our theme...We are taking it step by step.

Grateful to post that we had a positive Wednesday! I sit here, in my elevated blood pressure state, watching the Hawkeyes as Jamie is taking her afternoon nap.

We're battling and Doing Better. Being Better. Grateful!

March 8

Facebook post from Patrick

"Live in the Light of My Presence, and your light will shine brightly into the lives of others".

It seems as though every morning I pick up this devotional it has something in it to grasp on to and hold. If you have read Jamie's blog you have heard her talk many times about shining your light, shine it bright. Well yesterday she was shining her light as usual, it was just a little dimmer than Monday.

It is very easy to come on to Facebook and flash up pictures of your wife, three days after a major brain surgery, walking the halls and smiling after a shower. In the very same breath, it is challenging to come on here and be honest about yesterday.

We had a challenging day. Jamie's nausea is causing her to not get very much nourishment. Anything she takes in - comes right back up. It is almost like having a horrible case of the stomach flu on top of a brain surgery. The Doctors reassure me that it will subside with time. The route that they took to get to the cm went right by the main nausea control center of the brain. So nausea is expected, but we trust it will subside.

She was able to take three walks yesterday, every walk zapped her energy. But I point out that she got up and battled...I know she didn't want to do them, but she forced herself out of bed and did them.

An update on deficits - Jamie's double vision remains no more nor no worse than when we went into surgery. Her left side remained the same with forearm to finger tip stiffness and lower shin to toe stiffness. Her right toes have followed suit, but we hope like her right fingertips this will subside as well. Her balance remains "off", but we both feel it may be due to her still being "higher than a kite" (her words not mine) They do have her on so many narcotics to dull the pain.

The good news, check that, the great news is the the tingling and numbness in her face and lips is gone. The majority of her pain is coming from the incision wound in her neck. They went in to great detail with me regarding the manipulation of her neck muscles during surgery, I had to ask them to stop about half way through their description as I had enough. Honestly, I probably know 10% of what happened to Jamie during her surgery on Friday and that may be 9% more than I want to know.

Sooooo, yesterday we expected. It doesn't make it any easier to live through. We didn't expect to be riding out of here on unicorns with rays of sunshine and rainbows coming from our butts. We know that peaks and valleys are going to happen and yesterday just happened to be a valley. Today we will wake up and fight again and get better. One step at a time.

Specific Prayers for strength - healing - and rest. Jamie has a very difficult time listening to her body, if you could pray for her ears to listen a little more intently, I would personally appreciate it.

PS, I wrote the majority of this post last night in my 6 foot 6 inch cot. I am very glad to report that Jamie ate a piece of french toast and her smoothie this morning and kept it down. We took our lap in the hall at the speed of light, got her shower in, and she is now snoring as loud as her father-in-law does. Please take this post with a grain of salt. Pray for us and know we will be fighting every minute to get back home!!

March 7

Facebook post from Patick

"Seek Me first and foremost; then the rest of your life will fall into place, piece by piece."

Jamie received a daily devotional as a gift prior to leaving for Arizona. I have read the devotional to her each morning, today the above hit home to us.

We have a long road of recovery ahead, but we trust in Him and know that piece by piece and step by step He will help us to fit everything back into place.

Speaking of steps, yesterday was more steps than I could have ever imagined. PT challenged Jamie to get up and get moving...well for those of you that know Jamie, she rose to the challenge. We took 4 walks yesterday, albeit only about 50 feet in length they were still walks. They were one foot in front of the other walks that required naps immediately following, but they were WALKS!! I was so proud of her, coming so far in only such a short period of time.

The highlight of the day was her shower. It made her feel like a million bucks and truly washed away the old and brought out the new and improved version of Jamie 3.0.

Her appetite is minimal due to the fear of nausea setting in after eating. The only constant and positive food she looks forward to is a strawberry smoothie from Starbucks. Ruthie and I are on a best friendship basis at this point. "Mr Patrick will take one strawberry smoothie with whip for his wife please", without me even saying a word. This morning the smoothie was waiting for me at the counter prior to ordering, with a piece of pumpkin bread that I didn't even order. Ruthie gave me a wink and said, "Enjoy your day Mr Patrick". The kindness of a stranger, as we are in a foreign land, was overwhelming.

I will let you enjoy the photos from yesterday, they do a heck of a better job showing you how Jamie is doing than my words do.

As we continue our pt and ot therapy, I ask for your prayers of strength and courage for Jamie. She's fighting!!

Do Better. Be Better.