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Sunday
Jun202010

June 19

It seems so long since I updated my journal.  In fact, I "thought" that I had updated you a couple of days ago but I forgot to click "save."

We are home from the beach and we had a great time.  It was a myriad of emotions which I expected, yet it also showed me that Jake is more independent that I thought.  The motivation when you are around your friends to be able to "keep up" with them and not rely on them is powerful!

We were in Isle of Palms, SC which is a place that we often took the kids through the years.  It is always a bit melancholy when you visit a place for the first time since Jake's stroke.  I could not help but to reminisce about Jake being one of those little "wild boys" at the pool running and playing full force from sun up to sun down.  I looked at the familiar scenario of the young parents with their children trying to carrying everything but the kitchen sink to get to the beach - and at times there was a look of frustration on their faces as if to say 'and you call this a vacation.'  It did not seem that long ago that we were one of those families.  Life was going along in a predictable fashion - in my naive way of thinking, I guess I thought that it would continue in that way.  Predictable.....Automatic.....
But I now see things so differently ..... I guess that you could say that at age 51, I am growing up!   It actually has nothing to do with my age.
Difficult times.  The pressure of difficult times makes us value life.  Every time our life is spared (or someone we love) and given back to us after a trial, it is like a new beginning.  We better understand its value and therefore live our lives more effectively for God.  The pressure we endure helps us to understand the trials of others thus equipping us to help them and to sympathize with them.  There was such a shallowness about my life before - that for some distorted reason I would avoid a tragedy.  Yet, through the many people that I have had the privilege to meet and have influenced my life during the past six months, I have learned a valuable lesson.  If we will be patient and submissive to the Lord, we will be a greater blessing to others during our time of pain and suffering than we were when we were strong and fit.  As my devotion said so beautifully, 'burning suggests suffering and we try to avoid pain - yet, an unlit candle does not shine, for burning comes before the light.  And we can be of little use to others without a cost to ourselves.'

The beach was a relaxing time for me to hang out with a couple of good friends and eight teenagers!  Jake did not miss a beat.  His friends just seem to instinctively know when he needs a little help.  And if he does, they help.  Otherwise, Jake is on his own and they treat him just like they do anybody else!  Jake was playing in the ocean and in the pool, walking on the beach, taking a Ghost tour of downtown Charleston, renting and watching movies at night, etc......  Jake was being a teenager hanging with his friends.

We leave for California in a couple of days to visit our family.  It will be a great trip.  I know that is may be initially difficult for our family as they have not seen Jake since this happened.  But after a few minutes of being around Jake, they will see that in spite of some deficiencies, Jake is still the same Jake!

There is a young boy named Bayler that I would like for you to pray for.  He is courageously and valiantly fighting cancer, yet his parents have received some less than favorable test results.  There is a guestbook signing on my caring bridge dated June 14th asking for prayer that you can find out more about his needs.

Also, there is a 14 y/o girl named Alex from Anderson who is also battling and suffering from cancer at this time.  My heart breaks for any parent who has to watch their child suffer with pain.  Maybe if we all collectively pray for Alex and Bayler that there will be some comfort and peace for these children and their families.  Thank you.

PRAYER REQUESTS:
1.  Pray for safe travels.
2.  Pray for right hand function with Jake.
3.  Pray for Jake to be able to talk more, read, and write.
4.  Pray for Jake to walk heal to toe with no wobbles.

Remember we are shooting for the moon!

Friday
Jun042010

June 4

Busy day today because today is Graduation Day.  Yay!  This is not going to be a regular journal entry but I wanted to share with you a few things.

Most of you would never have access or reason to see this magazine but you can see it on line.  There is an article on Jake and his rehab that is in this month's edition.  The article and pictures were taken when Jake was in Atlanta.  The best way to find it is to google:  jake nicolopulos + advanced physical therapy             That is the name of the magazine and he is the cover along with an article on the inside.

Graduation is at 6pm tonight so afterwards we are going to eat pizza at Emily's parent's house because it will be late to try and go out.  Tomorrow night we will have a family dinner at my sister's house to celebrate graduation.

In spite of a busy and heavy recruiting schedule, Coach Scott called this week to congratulate Jake for graduating.  Coach Swinney called yesterday morning and I wish that I had a recording on the words and the message that he gave to Jake.  It applies to all of us.  Jake listened to him so intently about continuing to work hard, NEVER giving up, following God's plan, God's purpose, and the testimony that Jake has and will have as a result of this event.  My point in telling you this is that these are wonderful Godly men and even though Jake's contribution to Clemson football is somewhat altered, they continue to care for Jake, the person, not Jake, the football player.  You can not measure the impact that this has on a person who is battling to regain lost abilities.  Nor can you ever underestimate, the random people that will walk by Jake at the sandwich shop or the bakery and say to him, 'I am pulling for you Jake.'  Jake says 'thank you' and looks at me with a look as if to say 'wow, people care and I don't even know them.'  It means alot and even if you never run into Jake, there is someone that you know and will encounter who is battling "something" in their life.  I have learned from this experience to step out of the box and look into someone's eyes and give them words of support and encouragement.  In the past, I often tried to avoid the "awkwardness" or maybe this is not the right moment to say something, yet, it can often be just the boost someone needs.  Jake has received much attention, love, concern, and support - oftentimes, that happens when you are a young person.  But, I now think about others who are going through a difficult time, and may feel as if they are carrying their burden by themselves.  Our words of kindness may be the only ones they hear that day.  Just a thought....

PRAYER REQUETS:
1.  Pray for more speech - mulitple words together.
2.  Right hand and arm movement.
3.  Walking without wobbles and heal to toe.

REMEMBER WE ARE SHOOTING FOR THE MOON ON GRADUATION DAY!!!

 
Wednesday
Jun022010

June 2

It is Wednesday morning, June 2nd, two days before graduation.  We are approaching the six month mark of Jake's stroke.  This is such a time of reflection and reminiscing, yet, I don't want to become immersed in the past.  I have found that there is a delicate balance between being submerged in the past and embracing the wonderful memories that have brought me to where I am now.

This journal may have no rhyme or reason.  There are so many thoughts that are spiraling through my mind.  I woke up during the night and there were so many flashbacks.  Then my mind would jump forward to the present ...... then what life would have been like if Jake had not had the stroke ....... and back to the day it all happened.  I remember standing at the foot of Jake's bed in Neuro Intensive looking at him - even though he seemed so peaceful, I realize now that Jake was mustering every bit of strength that he had fighting for his life.  And you won, Jake - you won the toughest and most important game of your life.

Jake, you have played in some "big" games in your life - some you won and some you lost.  But, what I remember so much, Jake, was your will to win and to never give up.  Even on the field, you did it in a quiet way.  You made the play and straight back to the huddle - your dad always told you not to run your mouth - your play should do the talking for you.  And, off the field, you are just a big kid who is as simple and laid back as they come.  It does not take much for you - friends, family, ESPN, your dog, a good meal - and Jake is happy.   Football was (is) a passion for you - very cool when you see your kid have a real passion for something.  And, football is still in you.  I see it in your eyes now when you pull up your highlight video and watch it.  Is it look of sadness?  Not from what I see.  It seems like you are just looking back enjoying something that means a lot to you.  I also see you critiquing your play as to how it could have been done better.  What else do I see?  I see a kid that still has a passion for football and if it is God's will and in His plan, Jake will still have a future with football, just in a different way.  And, Jake, back to the part of about you never giving up - thank you for not giving up back on December 9th because you were truly in the fight of your life.  

From My Devotion:  We will not win the victory in prayer until we cease our struggling.  We must give up our own will and throw our arms around our Father's neck in clinging faith.  It is not applying pressure or insisting upon our own will that brings victory.  It is won when humility and trust unite in saying, "Not my will but Yours be done." (Luke 22:42)     REMEMBER:  We are strong with God only to the degree that self is conquered and is dead.  Blessings come not by wrestling but clinging to Him in faith.

Re:  Swelling that I mentioned last week.  It is no worse which is good.  There are no symptoms - as I said at this point it is a cosmetic issue.  From what I understand, there is a lot that goes on when you have surgery and if I understand it correctly (?), there are a number of interruptions that can take place in your body due to surgery.  And the lymph system is one of them - which may explain the swelling.  We are looking into a therapist who works in this area.  

PRAYER REQUESTS:  
1.  MORE SPEECH - MULTIPLE WORDS PUT TOGETHER AT ONE TIME
2.  MORE USE OF THE RIGHT HAND AND ARM
3.  WALKING WITH NO WOBBLES - HEAL TO TOE.

Thank you so much for continuing on this journey with us as we shoot for the moon!

Thursday
May202010

May 20

The energizer bunny... it just keeps going and going and going...

It is Thursday morning and Jake is still asleep.  He does not have therapy today but Craig and I will do in home therapy in physical, occupational and speech.

I had so much to say on the last journal that I was unable to complete it.  I updated to last Friday night and I wanted to share with you a few events from the weekend as well as speech therapy.

Last Saturday, Jake and Emily went to the lake with her dad and she text a photo of Jake driving the boat.  He just looked so comfortable and it gave him such a sense of being in control.  That evening Craig and I joined them at the lake for dinner.  I can't remember everything to share with you but we ALL noticed that Jake was being more verbal.  We are standing on top of their boat dock and Jake really wanted to go swimming in the lake and we had not let him.  He looked at me with determination and said "tomorrow night.....swimming."  There are numerous examples similar to this one that it is just hard to recall because often I am not with him and others share it with me.

Sunday morning we had planned to go to church and I kept waiting on Jake to wake up.  Well, he did not get up until 10:30 so Craig and I decided to have "church at home."  I gathered several devotions from Charles Stanley and Craig, Gina, Jake, and I sat down to together.  When I was looking at various devotions, I really was thinking about Gina more than any one.  She had expressed to me feelings of being on a roller coaster - up and down, up and down.  I asked her once again how long this had been going on and she repeated to me since Jake's stroke.  However, she quickly added, in a protective mode and a bit defensively, "but it is not Jake's fault!"  I certainly knew that and her response spoke volumes to me.  I look back on December 9th and sometimes I regret that I was not more protective of her, yet, I was not prepared for any event that occurred that day.  I believe the moment that the doctor called the three of us back to tell us the grim prognosis, well.... it was hard for all of us......but........maybe Gina's youth made it more difficult.  I remember the first words that she said when we walked out of the room upon hearing those "dreaded words."  She said, "Jake does not deserve this; he is too young;  that should be me lying there, not him."  Oh my, the words that come out of the mouths of babes....  Her thought that Jake was too young for this, but not her.... they are only two years apart.  We were in Anderson from December 9th thru December 22nd and then moved to Atlanta.  We left much behind when we left town, but the most important was Gina.  Yes, she intially came to Atlanta with us but she then returned to Clemson for school.  Craig and I had each other to lean on daily and we were actually with Jake on a daily basis.   But in Gina's case, she was removed directly from the situation and trying to pretend that she was the normal college student when she felt anything but normal.  I can not turn the clock back and it is not important where we were.  What is important is where we are now.  Thankfully, I have chipped away at the wall and Gina acknowledges her feelings - the roller coaster of emotions and at times, a bit of anxiety.  Our devotions that God led to me last Sunday morning were entitled "Letting Go of Anxiety," "Weathering the Storms of Life," and "God's Purpose in the Storm."  Gina seem to be embracing every word we read which did not surprise me.  But what did surprise me was how Jake seem to be fixated on every word that was being said.  His attention span has never been that great, even before the stroke.  Afterwards, we said let's pray and it really was not our intention for Jake to lead the prayer, yet there was a pause...... and then out of the blue, Jake starts praying.  Jake starts by saying, "thank you for this food and that we are together."  Now everyone knows that is a memorized response from a blessing he said since childhood.  But then he continues, "thank you for truth, (pause), and strength (pause), for mom, dad, Gina, Jake, Emily."    (Gina and I peaked at each other and we are both wanting to giggle at the way he started out with the blessing and for naming himself).  And then Jake just keeps on praying - sometimes, repeating the same names and there was a small amount of cueing on our part in helping him think of names.  But mostly it was on his own.  This prayer was like the Energizer bunny......it kept going and going and going.  In the middle of the prayer, he said again "thank you for this food and that we are together" and he thanked God for "Jake" again and of course our dog, Reesey.  Finally, Jake says "Amen."  He then let out a big "Whew" - like he had just finished working out hard.  That is what it is like for an injured brain - an exhausting work out - but, I think that Jake was enjoying hearing himself talk - hearing words come out of his mouth.  For a moment we all sat in stunned silence and then we celebrated that very special moment that we were all together and had witnessed Jake accomplish so much.  It was one of the most special moments that I have experienced.  As special as it was to hear the words come out of Jake's mouth was, there was equal joy to see the happiness in Gina's face.  I am watching both of my kids heal before my eyes - yes, the "injuries" are different, but they are injuries nonetheless.

The remainder of Sunday was terrific.  Gina and I spent a lot of time together which was great.  I know that everyone felt like Jake was understanding more and being more verbally expressive.  Well, that "feeling" was professionally confirmed when Jake's speech therapist called me after Monday's session.  She was so excited to tell me that Jake had made a "jump."  Things that she had to repeat a week or two weeks ago four or five times, Jake was getting the first time.  Also, he was finding words and being more expressive verbally.  He did four multiplication problems and solved them all correctly.  You know it is so amazing when you are talking to someone who has only known your child for a few weeks and you hear the excitement and thrill in her voice over your child's accomplishment.  Wow - to have found someone so committed and so vested in your child, it certainly validates that Jake is working with the right person.  I remember her telling me the first day we met with her that before a person can become verbally expressive that they need to comprehend.  Also, healing sometimes can come in "jumps" - it may seem that you remain status quo for a time and then you see a "jump" and that is what we experience.

From My Devotion:  "The pressure of difficult times makes us value life.  Every time our life is spared and given back to us after a trial, it is like a new beginning.  We better understand its value and thereby apply ourselves more effectively for God and for humankind.  And the pressure we endure helps us to understand the trials of others, equipping us to help them and to sympathize with them.  Trials and difficult times are needed to press usforward.  They work in the way the fire in the hold of a mighty steamship provides energy that moves the pistons, turns the engine and propels the great vessel across the sea, even when facing the wind and the waves."

I know that I put a lot "out there" personally about what my immediate family is going through.  But I only do this after prayer and "consulting" God.  There is nothing to be ashamed of in going through an emotional roller coaster in life.  For my family, we went through roller coasters before this stroke, but I just did not write about it.  This is not a perfect world, far from it.... none of us have perfect lives, far from it.... and, for me personally, I believe that God is leading me to share the good and the bad with you - and there is plenty of both in the Nicolopulos household.  But there is also a lot of faith, hope, and love, in our home and the greatest of these is love.  Sound familiar?  1 Corinthians 13:13

PRAYER REQUESTS:
1.  Pray for our entire family to continue to emotionally heal from this event.
2.  Pray that Jake will continue to be happy and not show any signs of bitterness.
3.  Pray for GRIP AND RELEASE AND FUNCTION IN THE RIGHT ARM AND HAND.
4.  Pray for walking heal to toe with no wobbles.

REMEMBER WE ARE SHOOTING FOR A FULL RECOVERY TOWARD THE MOON!

 
Monday
May172010

May 17

It is Monday morning and it has been a good weekend.  Jake is doing well and so are we.  Yet, I have to share with you the total picture, as I will later in the journal - the complete sum of emotions that we confront.  Why do I feel this obligation for transparency?  I am not sure except that I feel that is what God is leading me to do - no further questioning on my part.

The Anderson Area Touchdown Club had their year end banquet on Thursday at lunch.  Jake and our family were invited as they presented Jake with a special award called "The Extra Mile Award."  The plaque says "In recognition of your journey to overcome the adversity in your life and having the enthusiasm, courage, determination, perseverance and attitude to make your journey possible."  and "Being dedicated is only a temporary condition, giving up is what makes it permanent."  I love that last part about giving up - giving up is not a part of our vocabulary.  It was very special time for Jake and for us.   

As everyone knows when your child is graduating from high school it is an emotional time.  I know that when you add the events of these past 5 months, that emotion is multiplied.  On Thursday night, Hanna had awards night.  All of the seniors marched into the school with the graduation processional.  When we saw him marching into the school with his fellow classmates...well....it was a moment...a moment of thanksgiving...a moment of retrospect...a twinge of sadness...an overwhelming sense of gratefulness.  Jake was awarded the Jim Cox Award for "your leadership, character, and attitude."  Also, he received the Rhett Hendricks Memorial Award given to the senior who has overcome adversity to graduate on time.  Both of these awards were special to our family.  My sweet niece, Ria, presented the Rhett Hendricks award on behalf of Rhett's family.  Ria was very close friends with Rhett who lost his courageous battle to cancer a number of years ago.  How special it was to see my niece presenting the award to her cousin.  I was so touched by the overwhelming response by the students and staff when Jake walked up to received his awards.  What did I see?  His fellow classmates happy to see one of their own stepping forward with a smile on his face, in spite of an overwhelming event, and moving forward with his life.  Again, I thank the staff of TL Hanna and the students from the bottom of my heart for the support and love that you have shown Jake.

And now for Friday.  I don't know what created the flood of emotions that made me feel as if I was caught up in a tidal wave.  Well, maybe I do know.  I have been cleaning out drawers finding old photos, going through the cards and notes that people have so lovingly sent Jake, reading a journal that Jake's friends wrote in while he was in intensive care, and on and on and on.....  Here are some excerpts from the journal written by Jake's friends from the ICU waiting room:  From W. B. : "you mean so much to everyone - we've been sitting here in the waiting room talking about our memories with you - you've made such a difference in my life and everyone else's."  And B.C. wrote  "Through the years I have known you, there hasn't been anything you couldn't handle.  You are one of the hardest working people I know and I idolize you for that.  After this setback, you will be able to go back to the world and conquer it.  This entire incident has made everyone see the power of prayer and the power of Christ.  God has a plan for all of us and through this setback, He has a plan for you and us all.  I love you man and one day we will look back on this and realize how powerful God was."  From B.B. : "You need to hurry up and get better. I love you and I am praying for you."  From A.P. "You're liked by everyone in this community and are an inspiration to me as well as many others.  I love you so much dog!  Stay strong!"  From B.T. "I know you are going to fight through this.  God is watching over you and is going to take care of you."  From D.W. "You are not just a good friend, you are a great friend, one that I can trust and keep it 100 percent.  I love you and stay strong."  From D.H.: "It's hard to know that I can't help you right now because you've always been a great friend to help me.  Love you bro!"
I read and read and read - almost as if I was getting to know Jake through different eyes.  I started looking at photos when we were at Disney World and Jake making a goofy looking face to the camera.  It was an overwhelming moment where life seem to be clicking along and then  BOOM!!  Out of no where, Jake suffers a major stroke.  I cried...no, I sobbed.  Am I not past these type of emotions by now?  No I am not.  There is no timetable nor checklist where one checks off an emotion or response that will not surface again.  Yes, God is in complete control of my life and this journey; however, I still have these moments where I just cry and struggle with the magnitude of it all.  During the day on Friday, while I continuously had my moments, Jake is out with his friends and having dinner with Emily and her family enjoying life.  I had worked myself up pretty good and then in an instance, I snapped out of it.  How?  Craig and I walked into the house to pick Jake up at Emily's and there is happy Jake sitting there watching Braves baseball and hanging out with Emily, Lyndsey, and
Jacob.  What did I have to be sad about or why did I work myself into a "funk"?  Look at my kid - alive, well, enjoying life.  Maybe I need to take a lesson from my 18 y/o - Jake seemed happy, grateful, and content.  Need I say more?

I have so much more to say but I have to leave and pick up Jake from therapy now.  I did not even get to this weekend - there is so much that I want to share with you, especially in the area of speech (all good).  But I will try and journal on Tuesday or at the latest on Wednesday.

PRAYER REQUESTS:
1.  Pray that I will be open and responsive and be able to see how God wants to use me.  I have a desire and a need to reach out to others.
2.  Pray for Jake's speech - reading, writing, speaking, and comprehension.
3.  RIGHT ARM FUNCTION - GRIP AND RELEASE!
4.  No wobbles - heal to toe.
5.  Pray that God will continue to give Jake the peace, happiness, and contentment that he has.