Introducing Jamie 3.0

Insert LARGE sigh here.

There are times when I could write only that and publish a post.  A good sigh can describe a rainbow of emotions.  Today is one of those days.  Actually, the last two days would fit the bill.  

Let's backtrack a week.  From June 20-July 1, I completed the Sensory Learning Program at Dr. Fitzgerald and Associates in Cedar Rapids to help my eye shift back to center.  I will write about that more in detail later, but one of the crazy things about this program is that the sensory input you receive matches your body's natural energy level.  For me that meant turning me in to GSD on steroids.  No joke.  So, being me, I decided that I was feeling well enough to start exercising and that I was going to try to start running again or- really crazy-I was going to start the July 5 session of NLXF.  

Last Monday I woke up and went for a run (if that's what you call what I do now).  I turned right out of our driveway and straight up the hill.  Apparently, I was trying to conquer the world because I have NO idea why I thought going up a hill RIGHT AWAY was smart.  I made it two blocks before I HAD to stop.  My left leg felt like it had a 25 pound weight tied to it.  It didn't even feel like I was bending my knee or picking my foot up off the ground.   I had expected that since I dealt with the same thing after my first stroke.  However, this heaviness was on a whole other level.  And my lungs!  I have been out of shape before, but this was different.  I am pretty sure I was swallowing hot lava as I breathed, or more adequately described, gasped.  To top it all off, my mental head space was drowning in negativity.  What in the hell are you thinking?  You cannot do this.  You just had brain surgery.  Not a chance you are doing NLXF in a week.  Why do you always do this to yourself?

I got to the corner and I almost turned around for home.  I looked back and then I looked to where I wanted to go.  I stood there for a moment while I gathered my bearings, my thoughts spinning.  Finally, I said to myself, If you can make it through two strokes and a brain surgery, you can go on a 20 minute run.  Just revamp your goals. Be smart about this.  So I did and I made it.  

I went to therapy that day and the pool after.  I felt amazing.  The next morning, I went to therapy again and ended up having some pretty severe bouts of vertigo during it. I have learned that this is my body's new way of telling me that I have pushed too hard.  I was fuming mad.  Not only did it interrupt my therapy, but it deflated me.  I had finally gotten a little bit of normalcy back just to have it taken away.  

I was forced to take the rest of the week off until therapy was done.  On Saturday morning, I got up and ran again.  This time, instead of running two blocks, walking two blocks, I only walked four blocks the entire time.  I had adapted to my leg and practiced breathing techniques to calm myself.  I know it sounds crazy to have this much improvement in just one run, but adaptability has become the name of the game for me the last two and a half years.  I have become very good at listening to my body and being able to adjust accordingly.

Then came yesterday.  My improvement had left me with a false sense of confidence.   Plus, it was my four month surgeryaversary.  Let's celebrate!  I went to the lake by where we live and set a goal to run around the entire thing--NO WALKING.  I got half way around and couldn't do it anymore.  I had to stop and walk.  As I did, tears began to stream down my face and I continued to cry until I finished.  I was so frustrated with myself mentally and physically.  I was upset that I had "mentally quit"--that I didn't have the toughness to do it.  And physically, well, if I could have unzipped out of my body and found a different one, I probably would have.

I walked a total of ONE block the ENTIRE run and it ruined my spirit for the majority of the day.  I had quit.  My body sucks.  I want to be better NOW.  RIGHT NOW.

But the worst thought.......I AM TIRED OF TRYING SO DAMN HARD.   ALL. THE. TIME.  AT EVERYTHING.  

Oh, that is not a good road to go down mentally.  That thought spiraled in to the I wish's, what if's, if only's, and why's.  And do I tell anyone about it?  Nope.  I keep it in, try to bury it, and then take my frustration about my situation out on everyone around me.  I'm awesome, I know.

Halfway through the day, I pulled up Facebook to check a message and the very first thing on my news feed was this quote from Pat Summit:

"Whatever it is that you desire to do in life, have the courage and the commitment to do it, and to do it to your absolute best."

Ding, ding, ding!  And just like that I came back.  My best looks different than what it was three years ago, 1 year ago, and even two weeks ago.  My best is constantly changing.  As long as I keep making sure that I push myself to whatever my best is at that given moment, than I have won.  I know I have the courage and the commitment to do that.  My damn ego just gets in the way sometimes.  :)

Welcome to today.  I woke up at 4:55, did my eye therapy, and headed to NLXF with my wonderful husband, who gets the brunt of my "stubborn as an oxe" shining personality.  :)  I was greeted by a bunch of warm hugs and happy hellos and I instantly knew I was right at home.  Then, I realized that it was a black Monday sort of workout and I had a moment of doubt- I shouldn't be here.  But, I reminded myself to focus on my best, whatever that was today.  And I did.  I never pushed too hard and I was completely fine with that.  I gave myself grace and what a difference that made.  I completed more than I thought I could, even the entire four minutes of hell, and I sweat through my shirt..... I was in heaven.  I was blissfully happy the entire time.

I think my Facebook post says it all,

Four months ago I had brain surgery. Today, I spent my morning at Next Level Extreme Fitness. NEVER would I have expected to say that and in fact, I can hardly believe that I am. One of these days I am going to wake up from this dream and find myself waiting to head in to surgery. Until then, I am going to send thanks to God that I am able to relish in the soreness that I already feel from the gazillion squats and lunges I just did.

I think what I have really learned is that my strokes and my brain surgery are a part of me.  

They have challenged me. 

They have changed me.

They have made me.  

I'd like to introduce you to Jamie 3.0.  :)

Being a "Sick" Mom

I have never written in depth about how the last two and a half years have affected me as a parent.  Where would I even start?  I could literally write a novel just on this subject alone.  Plus, I started this blog so that our girls would know me.  So, that they would know me in case something were to ever happen to me.

Heavy, I know. But, it is the reality I live in.

Parenting is hard.  All of you who are parents understand this.  All of a sudden you are in charge of this precious little being and absolutely NOTHING can prepare you for it.  There are instantly a million decisions to be made; breast milk or formula, which pediatrician, which (insert baby item here) is safest, how to ween them from the bottle, how to sleep train, how to potty train, how to do EVERYTHING.  And, wow, is there ever mountains and mountains of articles to read or unsolicited advice to be heard!  Seriously, it can make your head spin and make you feel like you are constantly failing.

Then they grow up.  Here come even more decisions and CHALLENGES.  Where should they go to school?  Should I sign them up for (insert sport/activity here) when they are two......okay, I know it doesn't happen this early, but geez, it feels like it.  What ever happened to letting kids be kids?  Sorry, mini rant over.  How do I teach them genuine kindness, understanding, and compassion?  How do I teach them to control their emotions?  How do I teach them to be strong and independent?  The list goes on and on.

And the worry.  Oh, the worry!  About everything that could possibly be imagined.  Are they safe?  Are they getting along well at school?  Have I taught them the difference between right and wrong so that they make smart decisions?  Have I taught them to respect themselves so they aren't negatively influenced?

IT. IS. CONSTANT.  As a parent, my head NEVER turns off.  Not only that, I rarely feel like I have done a good job.  After the girls go to bed at night, I finally sit down, and the first thing I say to myself is, "well, I sucked today."  I could have been more patient, I could have said more I love you's, I could have, I could have, I could have.  I hate that feeling after everything I have been through.  I feel pressure to make sure that I parent perfectly because I understand first hand how fast the blessing to be able to can be taken away from me.  And when I lose my shit (pardon my language, but parents you have all been there), I feel guilt because, I, of all people, should be grateful and laugh at the moments when they drive me bat shit crazy.  I have changed through of all this, yes, but I am still human too.  I can only hear, Mommy!, so many times before it resembles the sound of nails on a chalkboard.

Now, take all of that and add being sick to it.  I have spent a lot of time away from my children, they have visited me in hospitals, participated in therapy, seen the bruises and scars from all of my IV's and shots (their personal favorite-the 6" scar from the middle of my head to the base of my neck), watched me wobble walk, witnessed me fumble tasks with my left hand, and looked in to my crazy eyes more times than I can count.  It is not fair for them.

Want to know what else they have been around a lot?  Hearing me say, "I can't."  We spent a ton of time together, just the five of us, outside this last weekend.  Being outside is still a bit hard for me.  First of all, my vision is incredibly limited as it is.  Like everyone else, I squint when it's bright which takes away even more of my vision.  Then, you add rock, mulch, or uneven grass or cement and I am suddenly in an extreme obstacle course with no sight!  And being near them as they swing is treacherous.  I have very limited depth perception so I have no idea how close I am to them when I am trying to push them.  I may have been knocked back just a few times.  Oh, and don't forget to add my 10 lb. weight restriction which takes away my ability to lift them.  That is not an opportune restriction to have when you are at a park with a 2 year old.

So I say, "I can't."

Mom, can you help me up?  No, I can't.  Mom, can you play catch?  No, I can't.  Mom, can you hold my bike (JJ is learning how to ride without training wheels)?  No, I can't.  I can't, I can't, I can't.  I think I said I can't to them more last weekend than I said I love you.

Big deal, right?  I have restrictions and it's okay that they know that sometimes I just can't do it.  Nope, it's not okay and I'll tell you why.

Today, I was at the park with Linden and Myah.  I asked Linden to try something and what was her response?  You guessed it..... I can't.  It stopped me in my tracks.  I taught her that.  I taught her how to say I can't.  I taught her to quit before she even tried.  High five, Jamie.

Eventually, we moved over to the merry go round.  Linden asked me to sit down so she could push me.  I almost said I can't, because I can't.  Going around in circles like that with bad vision and impaired senses.....DISASTER.  But, instead I said, "I will try."  She hesitated for a moment, like she was shocked by my answer, and then her entire face lit up with excitement.  I sat down and she pushed me.  I lasted a half of a round before I asked her to stop me.  I couldn't do it, but I tried.  It was important for me to show her that.

High five, Jamie.

Smith girls:

I do so many things wrong as a parent.  But, it also my hope that I have done some things right.  Even though the majority of this post outlines the stresses of being a parent, please don't think for a second that I don't love every second of it.  Being your mother is my greatest accomplishment in life.  You all bring a joy and beauty in to my day that I never could have expected.  I love you all dearly.

I have so many dreams and wishes for you.  And today, my most pressing wish is that you will always try.  Trust and believe in yourself enough to give everything a shot, whether you think you can or not.  Have courage and be brave.  After all, you will never know what you are capable of until you try.

You might just surprise yourself.

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!