Red Shoes

(This is a continuation of the post from 6/3/17 titled Meet Lorisa.)

They are Lorisa’s favorite– her red high top tennis shoes. You see them somewhere on almost every page of the book. When they are on her feet — always untied.
There is a the back story about red shoes. Lori’s oldest boy played little league baseball like many boys do when they are seven and eight years old, but you will not hear of his name in the MLB because it was soon discovered that his gift was numbers and baseball stats. He is a successful financial consultant today. Oh, but he did have a pair of coveted red baseball shoes that he passed down to my oldest boy two years younger. My oldest wore the flashy red shoes for one year of little league. He soon realized that baseball was not for him the day the coach had to yell out to him in the outfield “take the glove off your head!” Today he volunteers his attention and time to young kids through the Big Brother program who are also at times are being told “to take the glove off your head.”

Next, the red shoes were handed down to my middle child. They were actually a size too big and flopped on his feet the first year he wore them. However, the minute he put them on and a teammate said “cool,” it was like those shoes were magic. He wore them for the next two years until the rubber cleats were completely worn down. You will not find his name in the MLB either. He traded his passion for baseball for a career as a sales analyst. Lori and I share cherished stories of a little boy who looked up to his older brother and older family friend so much and insisted on wearing red shoes a size too big for him. He was even nicknamed “Red Shoes” for a few years.

So as you read the pages of NOT YET and see a cute little girl proudly wearing her high top tennis shoes, you now know the precious memories that Lori and I share of “red shoes.”

Why are Lorisa’s shoes always untied …… because “she’s not quite there yet. She’ll get there. You bet!”

NOT YET….. coming soon!

By:  Lisa Cox & Lori Hockema

 

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Ribbon of Tears

Ribbon of Tears

If each of our lives is a story, and I do believe each and every one of us has a story to tell, today’s page of my story would have tears staining the ink on the page. Today is a day I let go and trust. Today, I say good-bye to the idea of going back to the profession I love. Today, I turn in my letter of retirement much earlier than I ever anticipated. Today Parkinson’s knocks a little wind out of me.

By tomorrow, I will turn the page and look for new opportunities. Tomorrow, I will quit pouting and see all of the windows God is already opening as this door quietly closes in my life.

Actually, I won’t wait to turn the page of tomorrow. I will mentally put those boxing gloves on (physically put them on tomorrow) and hit back

I will do as the song Heather Richardson and I wrote…..

“dig deep, find strength, and trust. And throw that First Punch”

But……. first I will reflect on a line that Heather and I wrote in another song that I hope you all will be hearing her beautifully sing sometime soon…….

” Today is marked by a ribbon of tears to close the chapter of” my counseling years.

Good-bye —
ZCS

Hello —
New Chapter

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Mom Wut?

Some things of your youth should not ever be resurrected. That’s what we discovered when I purchased a used French horn about a year ago.

One of the many non-motor ways Parkinson’s affects me is my voice volume. Common words from my husband are “what, I can’t hear you, you have to talk louder.” Remembering my glory days of fighting to remain in first chair position as a fine-tuned French horn player in high school, I thought bringing the beautiful sound of this instrument that adds depth to so many songs as an accompany instrument was the answer. I read that playing an instrument could strengthen muscles and help with voice volume, and it’s true. I forgot that there were a lot of um, pa, pa’s played by the French horn in most songs as the flutes had the main melodies. Oh, but there was Tchaikovsky. I envisioned playing Tchaikovsky’s 1812 Overture with the same precision as when I did in high school. In this piece, the French horn finally gets its glorious moment taking center stage of that grand song commemorating Russia’s victory over France.

Mr. Eric Wainscott, beloved band director of my youth, I hope you get to see this video. From the moment in the 5th grade when you helped me select this instrument that would be part of my life, it has strengthened me. Mainly, from all of those years lugging it back and forth each day from school, as I enviously watched my flute playing friends tuck their instruments under their arms and skip home. But I also learned from this instrument that most of life is spent as accompaniment — in the background. The world doesn’t revolve around me as usually it didn’t in songs for the French horn — except for in the Overture of 1812.
Just like Russia battled France as portrayed in Tchaikovsky’s song, I will battle Parkinson’s. — it just may not be with playing the French horn.

My greatest victory is my three boys plus husband who lovingly endured my attempts at bringing back to life a time of my past history.

I love this video made by two of my three boys. The laughter it brings me, may not do much for my voice volume, but it strengthens my soul.

So good-bye French horn. Thank you for the life lessons and memories.

Coming to the Surface

Sometimes reality makes me come to the surface and truly face what is happening in my brain. That is what happened yesterday at my appointment with my neurologist. From the moment he walked in the door, I knew he was analyzing my every move, word, and expression. He was looking for signs of regression, and that makes me have to face for a moment the physical changes that are slowly happening to me. At these times I feel like I can’t tread water or swim fast enough to get away from the raw reality of it.

I knew going into this appointment that I have noticed that my meds were not working as well. I guessed there was some regression, but yesterday I had to face it, grieve it, and feel it. It was a hard day.

This morning the sun is shining. I hear the birds singing, and I plan on living today to the fullest.

…… And I plan to submerge myself in the tranquility of denial, not denial that I have Parkinson’s.Today I will drown myself in the comfort that it does not define me. I will deny this disease any power over me. Today I will push back any fear that has resurfaced and focus on the beautiful routine of the day.

Today I will drift and let the current pull me far away from any negativity and closer to my creator. Today I will trust my God. Today I will quit fighting the undertow of faith and belief in a bigger plan than I can see. There is a bigger and plan than pain and suffering.

That is until July 25, my next neurologist appointment. Then I will have to resurface again, but only for a day!

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Sharks

I like a movie with a good happy ending. I saw one awhile ago that had everything but that. It is called Open Water. Now if you plan on watching this movie, stop right now because I am going to tell you the ending.

Basically, a married couple go on a tropical vacation. They go on a scuba diving adventure. They are having a great time diving, but when they surface they find their boat has left without them. The scuba diving guide miscounted and did not realize his mistake for days. The majority of the movie is spent with the two of them bobbing up and down with a few boats that pass too far away to see them. Eventually, the man gets bitten by a shark and dies in her arms. Then she just takes off her life jacket and goes under. I hated it. Where was the redemption? Where was the hope? Where were the rescuers who would risk all to bring them home?

They say it is based on a true story. That makes me shudder as I have been scuba diving about 3 times. This couple placed their trust in their guide, the scuba diving company, their watches, their equipment, their rescuers, and each other. None saved them from their plight.

Sometimes I feel like my life is kind-of like that open water. And it makes me think about where I place my trust. If you are a Christian, you will understand when I claim that I place my faith in Christ alone. There is a familiar song that I have sung often in church. It goes ” in Christ alone, my hope is found. He is my light, my strength, my song.” Yes, I profess that I place my faith in Christ alone. Those of you who are not Christians, to you I I fully admit that I live as a hypocrite most of the time. If I am honest with you and myself, I place my faith in my comfortable home, my job, my husband’s job, my health insurance, my family, my doctors, my food. I could go on and on. Those worldly things are not bad, but they are as fleeting as that negligent boat that left the couple in open water in that movie. There have been times in my life when I have been striped of those worldly things that I mentioned and have felt as vulnerable as those unfortunate scuba divers.

In 2010 when my health the striped away from me is one of those times. I felt panic, despair, and the fear was like sharks nipping constantly. But unlike the movie, I stopped bobbing and trying to battle that fear nipping at me. The words to that song became a reality. I was forced to either keep battling myself or live those words I have sung for years — in Christ alone.  I finally surrendered my plight to him. The rescue chopper did not come. I am not miraculously healed. He could have sent it. Instead, I feel like he has put a shark barrier around me, protecting me, and giving me wave after wave of joy and blessings in my plight. That is real. That is how Christ rescued me. I can without reservation claim “in Christ alone.”

We all live by faith in something.  There is only one I have found who can protect me from the sharks of life. In Christ Alone.

There is a sequel! It’s called Open Water 2. If you plan on watching it, again stop reading. In this movie there is a new set of friends on a sailboat sailing across the ocean. How does it end? Well, let me just say this. It’s all fun and games as you push each other in the ocean until after the last man jumped and you realize that someone forgot to put out the ladder and you can’t get back into the boat. More sharks!

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Can’t Take My Voice

On a bell curve my life would be about average. My math ability would be slightly below, verbal ability slightly above, but most everything else about me and all of my experiences would be considered right at average on a bell curve. That is until I faced my 49th year of life. Then the world I knew shifted on me, and I found myself having experiences that were considered statistically rare. Oh, how I longed for the top of that bell curve again.

In 2010 after an MRI that both my doctor and I thought was going to show a simple pinched nerve, I got a call from my doctor saying, “Well, this might not be life-threatening, but it will be life altering.” She was right. From February 2010, I have been on a medical roller coaster ride. Between 2010 – 2012, I have had one surgery to partially remove a benign tumor on my cervical spine. Thirty percent of it was too dangerous to remove. This left me with 14 titanium screws. I had a second surgery to implant a shunt in an arachnoid cyst that pushes on my cervical spine. I then had a third surgery to fix the tubing on that shunt when it kinked, like a hose kinks. Next, came the fourth surgery I had to put a magnetic valve on the shunt to stop it from over-draining spinal fluid into my pleural cavity, the lining of the lungs. Within two years time, we could say that I am titanium, I am kinky, I am magnetic. I am basically bionic! For the rest my life I will have a tumor on my spine that threatens to grow and a cyst that will always need to be controlled by a shunt. At that time, I kept looking for the light at the end of this medical nightmare. I wanted it to be over. I am so grateful for all of the people who stood beside me and helped me through those years. It was humbling to lose my independence.

With the next few years, my health continued on that roller coaster ride. It got little better at times it seemed, but mainly there was a series of bad news. Eight times I had to have my lung drained due to shunt malfunctioning. This caused my brain to sag. Yes, at an age when so many other things were sagging, my brain was sagging, too. Most troubling was that I was experiencing new symptoms that my doctors could not explain. I went to Dr. Google. I am notorious for getting myself in a frenzy and diagnosing myself with all kinds of conditions I don’t have going to Dr. Google. Unfortunately, this time Dr. Google was right on. The first time I verbalized my suspicion was to my mother, I expected her to say that is ridiculous. Instead, she held me and said, “If you have this, then it will be all right.” My symptoms fit Parkinson’s disease perfectly. Ok, Really — a tumor, a cyst, and now Parkinson’s disease! What about the lottery or Publishers Clearing House Sweepstakes, winning at slots in Vegas? I could have handled that. That is why I call my three diagnoses “the trifecta.” What are the odds?

After my third diagnosis, I found refuge in my closet. My favorite place to cry. Often I would hear the words, “Mom is crying in the closet again.” I watched my body succumb to to the attacks of Parkinson’s. I started to walk with a cane. I was losing my balance. I had constant fatigue. My gross motor movements were slow and difficult, and my lack of hand function made me believe that I would soon have to quit my profession of being a school guidance counselor. The medications prescribed to me were not working, and my doctors were unsure which of my three diagnoses were causing my symptoms. But with the encouragement of friends and family, I got out of that closet and fought physically with exercise and battled my way to Cleveland Clinic. On July 28th, 2015, I went to Cleveland clinic to see a movement disorder specialist.

In the beginning I did not respond to Levodopa, a common Parkinson’s medication, and so when I left my appointment that day at Cleveland Clinic with a Levodopa prescription, I was not too hopeful. In just five days from that appointment, summer vacation was over and I had to go back to work.

The next day, I filled that prescription and took the first pill, and in two hours after taking that pill, my body was back to almost full functioning. I was better than before my first surgery in 2010. With that appointment only being five days before my first day back to school as a counselor and thinking I was possibly going to have to quit my job, this was nothing short of a miracle to me. I can move, dance, swing my arms when I walk, gesture. All of those movements that at one time in my life I took for granted, I can do now. For an undetermined amount of time, I am better. I try to forget that it is a regressive disorder. There is not a cure, YET. One of my fears I had to overcome is this. some day, when I can no longer button my shirt, walk unassisted, speak up so people can hear me, when my body fails, what worth will I have to others except to be a burden?

I have changed that perspective after carefully watching the world around me through enlightened eyes. I feel reassured that each of us has a purpose in this life, and we each have a lasting legacy of just being who we are until our last breath. Yes, if you have a loved one lying in a nursing home with Alzheimer’s, Parkinson’s, ALS, Cancer, I could go on and on, they are teaching us something. Listen and learn – a big lesson: Slow down, take time, be still, reach out, don’t sweat small stuff, appreciate, and love. I have worth. I matter. I will not give up the fight.

Through my Parkinson’s diagnosis I have also discovered a whole new world of pain, struggle, fear, healing, acceptance, beauty, and joy. It is the world of the disabled or those with special needs. Before my trip to Cleveland Clinic, I lived in that world as I watched and experienced my body succumb to the attacks of Parkinson’s. After my Cleveland Clinic appointment, I came back from my journey and back to my more functional life. There is no cure for Parkinson’s. I will most likely regress someday. Right now I have the gift of my health back for an undetermined amount of time. I live one glorious day at a time! Parkinson’s Disease has given me more compassion for those with disabilities. I want to share what I have learned with as many people as possible. I hope to bridge that gap and help those without disabilities understand what the world is like through the eyes of those who have to struggle to fit in. In a way, isn’t that all of us at some point? For the disabled it is their lives at most points. Someday when my Parkinson’s progresses, I will go on that journey again. For now, I look through the window and clearly see people with differences who are exactly the way they are supposed to be.

I am a funny, fun, in love with life person. Parkinson’s tried to steal that from me. Parkinson’s lost. I will be determined to live each day of my life to the fullest and love, live, laugh, and dance every moment of my life. The fear is gone, I cry in my closet only on rare occasion now. I have a new passion for writing, songs, personal essays, children’s books, anything that will bring people hope and make them smile. Parkinson’s, “You can take away many things but through my songs and written words, you can’t take my voice.” Today, I will hug somebody, love, laugh, and fight this disease like a warrior!

Can’t Take My Voice

Hey dear friend of mine
I didn’t welcome you to stay.
But you ignored my subtle hints
and did not go away
At first I fought the thought of you
now you’re part of every day
I remember days without you.
Before you rudely looked my way
Hey dear friend
we’re in a race
the battle’s begun
As we run side-by-side.
You think that you have won
As you try to overcome
I call to hope and feel its force
my friends are in this race with me
They help me stay the course

At times you put me on the edge
you’re raw and maddening
At times you are a blessing
I look around and want to sing
You’ll be with me to the end
in that I have no choice
You can take away many things
But through these words
you can’t take my voice
Hey dear friend you’ve blessed me
with a window
Now I see
The pain and suffering of this world
you are my mystery
At times you put me on the edge
you’re raw and maddening
At times you are a blessing
I look around and want to sing
You’ll be with me to the end
in that I have no choice
You can take away many things
But through these words
you can’t take my voice!

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Big Mouth + Phone Addiction = Awkward

Big Mouth + Phone Addiction = Awkward

I was torn on this one. Should I title it “Put Down Your Phone” or “Shut Your Big Mouth? I compromised. Also, the name of my friend is changed to protect the innocent, which is not me.
Ok. I’ll just dive in on this one. Here we go.

There is another family in my town who I know is dealing with Parkinson’s, and they live their lives so fully that it made me want to reach out and get to know them better. The husband, let’s call him Fred, is about my age and is my fellow Parkinson’s fighter. His wife, let’s call her Wilma, is his corner man ( woman).

Now after reaching out to them through Facebook, I learned that Fred also is involved with Rock Steady Boxing. However, he also has access to a large gym and a friend who used to be an amateur boxer who now works with Fred privately.

Not long after corresponding with this generous, kind couple, Fred invited me to box with his personal trainer friend.

So the evening came of my first semi-private boxing lesson. Since I did not know where the gym was, Fred was picking me up. Now, I know that this is getting long, but hang in there. It’s worth it. Keep reading.

As I stood in the front doorway of my home with my husband by my side, workout clothes on, boxing gloves in my hands, I watched Fred drive into my driveway promptly at 5:30 pm. He pulled up in a little two seater Mercedes convertible. The car was a head turner, and I smiled, looked back at my husband and and said, “See ya,” with a little wave. My husband stood and watched me drive off with Fred in this “hot, little car.”

When I returned home from the boxing session, as soon as I walked in the door, my husband started teasing me. He was only kidding because I know this was totally out of character for him and us. He kept repeating in a syrupy sarcastic voice, “did you have fun with your boyfriend and his hot car?” “What did you talk about?” I just kept saying, “Kyle, stop it! Not funny! We talked about our tremors and meds, ok?” Kyle and I had a private laugh and the moment was over. Kyle knew Fred to be a super nice guy from church and was only kidding me because of the car. This story could have ended right here with no one ever knowing about it, but oh, no, not for me!

The next day I was at a good friend’s house who knew of the boxing session and she asked about it. I explained how great it was and how nice Fred and his trainer were, then I proceeded to tell the funny car story just exactly the way I described it above in the same syrupy sarcastic voice that I wish you could actually hear to know how obnoxious I sounded. As I finished telling her the funny car story, I looked down to discover that the whole time I was talking, I was also holding down the record button in a text box on my phone. To my horror when I lifted my thumb, it sent. Not knowing who I just sent the message to and how much I actually recorded, I was not in a full panic yet. But after checking out both, of course I recorded the full message, and of course, who did it send to? Fred! I had just sent that entire sarcastic story to Fred, a cell phone addict’s worst nightmare come true! So I grabbed my friend, and made her go to the AT&T store with me to beg them to some how remove the message hoping that Fred was not a cell phone addict and hadn’t opened the message yet. AT the AT&T store my begging only got the response “sent is sent, nothing we can do.”

So at this point I determined I was doomed forever and had to resort to the only what a good Christian would do, confess and grovel.

I dialed Wilma’s phone number and felt a little relief when I got her voice message greeting instead of her Actual voice. Then I proceeded to tell the whole story stuttering and stammering. It was a full confession and apology of exactly what I did. Now I just had to sit back and hope for forgiveness, but, no, ten minutes later my phone rings. I show my friend, and she forces me to answer the call from Fred. He said, “Lisa, I just got a weird message on my phone from you.” I asked, “Fred, did you listen to it?” “Not yet, he said. I went through the whole confession groveling process again and told him the whole story. Thank you, God, this family has a sense of humor. We hung up after he said that Kyle and I could borrow his car sometime.

Five minutes later, I get a text from Fred with about 25 lol’s in front of it. He said, “Lisa, the best part of this whole story is that I never received your audio text!!!!!

You’ve got to be kidding! There are so many lessons in this post that most people learn by middle school. Lol.

End Note: I don’t need to borrow Fred’s car now. I traded my average Juke for my own convertible, not so hot, but cute.

Fred and Wilma, you two are the best. Thank you for your grace and forgiveness. I will never do this again …… well until next time!

As my fourth grade students say, “Well, that was awkward!”

Awkward

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