Wendy Avery

37 DAYS UNTIL RACE DAY!

(The purpose of this 16-week blog is to shine the light on childhood cancer by sharing our family’s personal experience as I prepare to run my first ever half marathon and raise money to help children with cancer and their families.  Be a part of the story! Donate here: http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2078389&pg=personal&fr_id=59186  then share with your family and friends.)

 

“To venture causes anxiety, but not to venture is to lose one’s self.” Søren Kierkegaard

For the first 30+ years of my life, I was anxious. I was born with the genetic makeup of a worry-wart.  It’s in my DNA, passed on through at least several generations that I know of.

As I grew into adulthood and then became a parent, I would lay awake at night making a plan in my head just in case our house would catch on fire or if someone broke in.  If we drove on a bridge over a body of water, I had to have a plan for getting all 3 kids out of the car in case we went over the edge and plunged into the water below. The scenarios go on and on.  You get the idea.

The more I thought of these things, the more anxiety took over my life. Eventually I could barely leave my home.

After reaching a crisis point in the mid 1990’s, I began to learn how to manage the anxiety until, ever so slowly, it became less then eventually was gone.  When I think back to those days, I barely recognize that version of me.

Imagine having that sort of history with anxiety and then having one of your children diagnosed with cancer. I knew that I was at high risk of heading right back into that overwhelming, all consuming fear.

 

NO ONE EVER TOLD ME THIS WOULD BE EASY

We never doubted that we were to go to St. Jude Children’s Research Hospital for Nick’s treatment. (If you have never heard the backstory as to how we ended up at St. Jude, watch the video on this page. It is an unbelievable God story.) https://www.stjude.org/get-involved/at-school/trike.html?sc_icid=gi-mm-trike

As confident as we were about our decision, we also knew that one of the hardest parts of Nick’s treatment at St. Jude was that our family would be separated…Josh in Pennsylvania at college, Steve and Alisha at home in Ohio for work and school, and Nick and I in Memphis, Tennessee during the most difficult time we had ever faced together.

Night time was the worst for me. It was the time when I felt the most overwhelmed. Nick was a 15 year old boy who, after spending entire days with mom during appointments, tests, outpatient chemotherapy, and so much more, was ready for a break when we would get back to our Memphis apartment at the end of the day. In the evening after dinner, he would go to his bedroom, shut the door, and either watch a movie or play his guitar before he went to bed.

I would tell him to leave his door open a crack so that I could peek in on him and make sure he was ok.  The answer was always “No, Mom! I’m fine!”  I had to learn to balance my desire to hover over him with his need for independence and some sense of normalcy at a time when nothing was normal.

When I climbed into bed each night alone, I would lay my head on my pillow and quietly repeat Psalm 4:8 out loud over and over again.

“I will lie down in peace and sleep, for You alone, O Lord, will keep me safe.”

Eventually my eyes would close and my mind would slip into an exhausted sleep.

 

I’M NO SUPERWOMAN

What possession is most sought after by rich and poor alike, cannot be purchased for all the money in the world, yet even the poorest of people can obtain it?

Peace.

In the 8 months from Nick’s original diagnosis of cancer to his death, we had to face many difficulties. Some situations were downright terrifying but throughout it all there was peace. My teenage son taught me what it means to be brave in the face of the most dire uncertainty and it is a lesson I can never forget.

When I actually stop to contemplate this journey so far, I think, what in the world am I doing? I’m no runner. What makes me think I can do this? So far, I have battled messed up knees, wicked shin splints, hip pain that I’m hoping can be taken care of with a few chiropractor and massage therapy visits, exhaustion, and my own doubting thoughts.

Completing a half marathon is something that I never, in my wildest dreams, thought I would do.  In my other life, the anxious one, I would have convinced myself that I would die of a heart attack on the side of the road somewhere and not even have tried. But that was the old me.

The new me is confident that what seems impossible to me is totally possible with God. There is nothing in me that is strong, He is my strength. He makes me brave.

But this isn’t about me at all. It’s about so many kids who are fighting for their lives through a disease that is terribly underfunded and kills more children ages 1 through 20 than any other disease.

I still have no idea how this story is all going to end and what other hurdles I will have in the coming weeks. But one thing I have learned is that if I never try, I will never know.  One thing I do know for sure is that I am not the least bit anxious.

“If the Son (Jesus) sets you free, you will be free indeed.” John 8:36

 

Enjoy song #40 on my Race Day Playlist…Brave by Moriah Peters.

https://www.youtube.com/watch?v=_Mm9UOlkMxo

No one ever told me
This would be easy
But I never knew
That it could be this hard
Oh the worry, the worry, the worry
Is weighing on me
Could you help me break down
All these question marks
And make me

Brave
I’ll fight like a soldier
Brave
Rise like a warrior
Brave
Won’t stop till the final day
Brave
I want to be stronger
Brave
Gonna be bolder
Brave
Look up and I see the way
You make me brave

I know, I know I’m no superwoman
But impossible is possible with You
So no, no, no more running, no more hiding
Strike the fire so I’ll be fearless too
And make me brave

 

Be part of the story!  Donate here…

If you are unable to donate financially, please consider passing along this message to others who can.  Thank you!

http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2078389&pg=personal&fr_id=59186

 

Many of you who are reading this most likely know our Backstory, or at least part of it.  If you don’t and would like to know more details of Nick’s story, you can visit his CaringBridge site here…

https://www.caringbridge.org/visit/nickavery

             

44 DAYS UNTIL RACE DAY!

(The purpose of this 16-week blog is to shine the light on childhood cancer by sharing our family’s personal experience as I prepare to run my first ever half marathon and raise money to help children with cancer and their families.  Be a part of the story! Donate here: http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2078389&pg=personal&fr_id=59186  then share with your family and friends.)

 

I will never forget their faces.

The handsome, curly-headed 22 year old who battled cancer for 19 years since he was 3. The newborn babe in all of her pink cuteness, born with cancer, puffy steroid cheeks in all of her sweet baby pictures. The beautiful, smart and sassy teenage girl who was a cheerleader until cancer struck and the life she knew as normal was totally derailed.

All are gone now.

Last week we gathered in Memphis, Tennessee…families from around the world…to remember these and so many more children at the St. Jude Annual Day of Remembrance weekend.

As I walked through the rows of boards that held precious photos, keepsakes, and memories representing each child, I noticed that two of them had been pushed together.  Two separate boards yet they were one.  Pictures of two little boys, twins, diagnosed with brain tumors within 5 months of each other…then dying within 5 months of each other.

I stopped to look at their pictures, read their names, and ask their mom about their lives.  She asked me about Nick and wondered how it has been for me to live 10 years without my son. Something, at just a year out, she cannot yet fathom.

I told her that on my worst days I focus on the fact that this life is so short and fleeting. And that in the end of it all, I will see Nick again and it will be forever. We will never have to say goodbye. She said that she thinks of the same thing.

We hugged and cried, two moms missing their boys…but not without hope.

 

Is Hope Lost in the Black Skies?

I love when I get the chance to watch the sun rise or set from above the clouds.  Last week I was lucky enough to see both. On Thursday, my flight to Memphis took off from the Pittsburgh airport in the dark, wee hours of the morning.  I flew back home late into the night on Saturday.

In the early morning hours, light pierces the dawn and darkness is no more.  In the evening, the earth rotates and blocks the light, bringing darkness to one side of the earth. Yet the source of light is still there.  It burns bright 24 hours a day, 7 days a week, 365 days a year.

Sometimes things happen in life that seem to block the light and cause us to feel like hope is lost and we are doomed to walk in darkness.  It’s in those times that we have to remind ourselves that the light is still present. That even though we can’t see it in the moment, it will appear again eventually and darkness will be no more.

When the sun sets, do you ever worry that it will not rise in the morning? No. Because you know that even though you can’t see it, the sun is still there and it will be back again at just the right time.

Hope for a new day.

Even though it has not yet arrived, you know it’s coming because “faith is the confidence in what we hope for and assurance about what we do not see.” (Hebrews 11:1)

 

Wait With Me Here ‘Til the Sunrise

The death of a child is a loss so profound that it has the ability to make you feel like hope is lost.

I get asked all the time if the work that I do is too hard for me or if I ever thought about not doing this anymore.  Isn’t it too much to always reach out to parents who have lost a child when my own child also died?  The short answer is this…it is the hardest best thing that I do.

I know without a shadow of a doubt that God has called me to comfort the mourning, to bring light into the darkness, to give hope to those who have lost sight of hope.  It is something I feel compelled to do and something that I can’t get away from, even if try.

Several years ago, my husband and I went on an Adventures by Disney trip out west.  Everyone who was going on the trip had to meet in Phoenix, Arizona to get on a bus that would take us to our next destination.  As we all gathered in the Phoenix airport, I heard someone speaking in the much familiar accent that sounded like many of my friends in Memphis. I approached this young girl and asked her where she was from.  “Memphis, Tennessee” was her reply.  We talked more and I discovered that this girl knew some of my friends who work at St. Jude.  After telling her why I am often in Memphis she confided that she had brought her mother on the trip because several months earlier her brother had died and she thought it would be good for her mom to get away for awhile.

Throughout that week on our vacation, I spent much time with this older, grieving mother. She told me stories about her boy. I told her stories about mine. One morning as we were on our way to breakfast she approached me very excitedly to say that she had had a dream about her son the night before and when she woke it felt like she had been with him.  A glimmer of light in the darkness.

Joy in the pain.

Hope in the sorrow.

 

Day of Remembrance weekend came to a close and we stood outside together feeling the full weight of the collective sorrow…so many grieving families held onto their balloons as we spoke out loud that we will always remember.  As we let go of our balloons and watched them drift up to the heavens, I heard one mom yelling out with excitement “Look! It got stuck in the tree! My balloon is in the tree! My boy loved to climb trees!”

Hold on…daylight is coming.

 

Turn up the volume and enjoy song #59 on my Race Day Playlist…Daylight by Remedy Drive.

https://www.youtube.com/watch?v=OzyYii4ZXRw

 

Has everything you’ve counted on

Left you right here with no warning?

Have your dreams become invisible?

Wait with me, dear, till the morning

Light will make the night burnout

 

Hold on Daylight is coming

To break the dawn

Daylight is coming

 

The brightest stars are falling down

Is hope lost in the black skies?

The darkness must precede the dawn

Wait with me here till the sunrise

Wait, your night will soon fade out

 

 

Be part of the story!  Donate here…

If you are unable to donate financially, please consider passing along this message to others who can.  Thank you!

http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2078389&pg=personal&fr_id=59186

 

Many of you who are reading this most likely know our Backstory, or at least part of it.  If you don’t and would like to know more details of Nick’s story, you can visit his CaringBridge site here…

https://www.caringbridge.org/visit/nickavery

(The purpose of this 16-week blog is to shine the light on childhood cancer by sharing our family’s personal experience as I prepare to run my first ever half marathon and raise money to help children with cancer and their families.  Be a part of the story! Donate here then share with your own family and friends.)

 

The subject of resiliency fascinates me.

An online dictionary defines resiliency as “being elastic, able to spring back into shape after being bent, stretched, or squashed.”

This reminds me of the stress ball that my boss handed out to all of us in the office last week.  The idea is to squeeze the heck out of the ball and transfer all of your stress onto it.  Not that any of us ever have stress at our workplaces! But just in case, the stress ball is resilient and can take it, right?  It will spring right back into shape and your stress will be miraculously gone!

Have you ever felt like the stress ball?  Squeezed, stretched, sometimes squashed?  Bouncing back after a traumatic event is so very hard.  It is often what we call “finding your new normal”.  Having to find a “new normal” means that you can never get back to your old normal. Your life is forever changed because something significant happened.

But what makes one person resilient and the next person not so much, especially if they experienced a very similar traumatic event?  Why is one more “elastic” than the other?  Is resiliency something that can be learned?

 

LEARNING TO BE STRETCHY

 

I was recently asked to write the conclusion for a paper to be published through St. Jude Children’s Research Hospital describing what it has meant for me to be a part of the development of the bereavement program at St. Jude.  Here is what I wrote…

“Eight months after my son Nick died of cancer, my sister Judy died suddenly. She had been living as a bereaved mom for 7 years after her son Mike died from complications of Cystic Fibrosis. Our family supported Judy in the best way that we knew how but, until I lost Nick, I couldn’t fully understand the depth of her grief. Judy was a single mom with 2 boys, one with CF and the other with Cerebral Palsy. Her life struggles set her up for complicated grief after Mike died and that is exactly what happened. When Judy was found dead in her home of an apparent heart attack, it was also discovered that over the past year of her life she had been living as a hoarder. Most of the time people become hoarders because they have experienced so much loss that they can no longer get rid of anything.

None of us knew.

In that moment, standing in Judy’s living room, I made a conscious decision that I would not end up the same way.

My sister is the reason why I became involved in the development of our bereavement program at St. Jude. I am determined to do whatever it takes to ensure that as few people as possible end up like Judy. If we are doing the best that we can to support our bereaved families, we are helping them to not only live, but eventually thrive again. Using bereaved parents as a part of that supportive process makes it even more meaningful as no one can understand what it feels like to lose a child except for another parent who has lost a child.

As our bereavement program grows and develops even further, I am hopeful that the things we have learned along the way might also be helpful to other institutions around the world as we strive together to bring hope and healing to bereaved families everywhere.”

Judy was my biggest source of support after Nick died because she knew exactly what it was like to lose a child.  She was a fun and loving person who would give her last dollar to someone who needed it. She was never a super neat and tidy person but she was certainly never a hoarder.  At first, I didn’t tell anyone about how we found Judy that day because I felt that it would embarrass my sister.  But as time passed, I just knew that she would want me to talk about it and use her story to help others.

So why did grief and stress kill my sister and not me? I believe it’s because “in that moment, standing in Judy’s living room, I made a conscious decision that I would not end up the same way”.  It was a choice that I made on that day, just 8 months after my own son died, that the grief of losing Nick would not also claim my life.  I became determined to fight against the strong desire to give up.  It is something that I still fight to this day and most likely always will.

 

POST TRAUMATIC…GROWTH?

A number of studies report that parents, especially mothers, who have experienced the death of a child, experience high rates of Post-Traumatic Stress Disorder (PTSD).  Not a surprise.

In the first several years after Nick died, I had very vivid flashbacks about the horrific things that I had to watch happen to my sweet baby boy in the last few weeks of his life.  They would come out of nowhere, usually when I was just starting to fall asleep.  My heart would race and I suddenly couldn’t breathe (sort of like I was having an asthma attack).  When I say that I fought a battle in my mind, I can assure you it was a very real fight.  I knew that it would not change anything to relive the terrible things that had happened.  It was only hurting me and would not bring Nick back. Over time, I found ways to stop the thoughts when they came and was determined to remember the first 15 years, 7 months, and 1 week of Nick’s life and not to dwell on the last 13 days.

It’s one thing to learn how to stop bad thoughts from taking over. It is a whole different thing to try and redeem the worst moments of your life by trying to plant a garden in your desert.

Recently, I read an article on Post-Traumatic Growth research that was done at the University of North Carolina at Charlotte…

“Post Traumatic Growth (PTG) is positive change experienced as a result of the struggle with a major life crisis or a traumatic event. The idea that human beings can be changed by their encounters with life challenges, sometimes in radically positive ways. 

Posttraumatic growth tends to occur in five general areas. Sometimes people who must face major life crises develop a sense that new opportunities have emerged from the struggle, opening up possibilities that were not present before. A second area is a change in relationships with others. Some people experience closer relationships with some specific people, and they can also experience an increased sense of connection to others who suffer. A third area of possible change is an increased sense of one’s own strength – “if I lived through that, I can face anything”. A fourth aspect of posttraumatic growth experienced by some people is a greater appreciation for life in general. The fifth area involves the spiritual or religious domain. Some individuals experience a deepening of their spiritual lives; however, this deepening can also involve a significant change in one’s belief system.

Most of us, when we face very difficult losses or great suffering, will have a variety of highly distressing psychological reactions. Just because individuals experience growth does not mean that they will not suffer.”  (https://ptgi.uncc.edu/what-is-ptg/ )

I will be watching the sun come up from above the clouds today as I make my way to Memphis, Tennessee.  It is our annual Day of Remembrance at St. Jude Children’s Research Hospital.  For the next several days, families from all over the world will also be making their way to St. Jude.  They are coming because each has lost a child in the past 3 years.  They are hurting.  They are suffering.  They each have a hole in their hearts and in their family that can only be filled by one particular child who is no longer here.

They are my sister.

They are me.

As I finish writing this blog in the darkness of the wee hours of the morning, I am in tears.  I am overwhelmed with the desire I have for these families to return home after this weekend with the tiniest shred of hope, a crack of light in the darkness, a seed to plant in their desert.

I want them to know that they can live.

 

Even though song #13 on my Race Day Playlist is about a relationship breakup, it represents something very different to me.  It is the song that Samantha S. and I sang out loud every week as it played from her phone and we gave ourselves manicures while chemotherapy dripped into her veins.

I babysat Samantha for many years from the time she was just a tiny baby. She became the 4th child in our family. Several years ago, Sam was also diagnosed with cancer and has survived.

  Nick and Samantha, 1999

Enjoy Stronger by Kelly Clarkson.   And know that when you donate to my race day, you are not donating to me but to Samantha and other survivors of childhood cancer…to keep them healthy and strong. Your donation will also help the families who will be spending the next few days at St. Jude remembering their child that is now gone, and so many more like them…to also keep them healthy and strong.

 

Be part of the story!  Donate here…

If you are unable to donate financially, please consider passing along this message to others who can.  Thank you!

http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2078389&pg=personal&fr_id=59186

 

Many of you who are reading this most likely know our Backstory, or at least part of it.  If you don’t and would like to know more details of Nick’s story, you can visit his CaringBridge site here…

https://www.caringbridge.org/visit/nickavery

(The purpose of this 16-week blog is to shine the light on childhood cancer by sharing our family’s personal experience as I prepare to run my first ever half marathon and raise money to help children with cancer and their families.  Be a part of the story! Donate here… http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2078389&pg=personal&fr_id=59186 then share with your family and friends.)

 

I remember that afternoon like it was yesterday. I had just come home from running errands.  The house was empty except for me and my Mom’s cat, Moses.  As I walked over to the dining room table to set some things down, I stubbed my toe so hard on the leg of the table that it immediately took me to the floor. It was just the thing to push me over the very thin edge I had been walking for several weeks.

“What do You want from me? Are You trying to kill me or something? This is ridiculous! What in the world is going on?”

Yes, I was screaming at God…not because I had just badly stubbed my toe but because two weeks earlier my younger brother, Jon, had died of a sudden heart attack at the age of 48.  This came after…

…my nephew, Mike, died of Cystic Fibrosis at age 25

…my Dad died of a stroke one year after Mike was gone

…Nick was diagnosed with cancer then died 8 months later

…another 8 months after Nick went to Heaven my sister, Judy, died of a heart attack at age 57

…my Mom died after battling dementia not quite a year before Jon was gone

…and just 3 weeks before Jon’s death, my ex-daughter-in-law decided that she didn’t want to be married anymore and left my son.

 

When is enough, enough?

 

Have you ever felt like you’ve been knocked off your feet over and over again by the things that happen in life? Just when you are getting back up after a huge blow, you get (metaphorically) punched in the face again and are right back down on the floor.

 

MISERY LOVES COMPANY

At least it’s good to know that I’m not alone.

Thousands of years ago, a man named Job also struggled with God in the hard things of life.  He lost everything he owned, including ALL of his children and then his own health, in a matter of days.  And he ranted to God too…

“Ah, let me express my anguish! Let me be free to speak out of the bitterness of my soul.

O God, am I some monster that you never leave me alone? Even when I try to forget my misery in sleep, you terrify me with nightmares. I would rather die of strangulation than go on and on like this. I hate my life. Oh, leave me alone for these few remaining days. What is mere man that you should spend your time persecuting him? Must you be his inquisitor every morning and test him every moment of the day? Why won’t you leave me alone—even long enough to spit?

Has my sin harmed you, O God, watcher of mankind? Why have you made me your target, and made my life so heavy a burden to me? Why not just pardon my sin and take it all away? For all too soon I’ll lie down in the dust and die, and when you look for me, I shall be gone.”

 

HILLS AND VALLEYS

When I first contemplated the thought of running the St. Jude Half Marathon, I thought that I should probably find out if I am actually even capable of running.  So last March, when the snow was still flying, I began to venture out on short runs.

It was not easy.  I was as slow as molasses and my knees began to hurt…not just a little but to the point that it became difficult to walk.  I had to take long extended breaks from running.  I wore knee braces for extra support.  Eventually, the muscles around my knees strengthened, the pain subsided, and I could run farther and eventually faster.

By the beginning of May, I felt confident that I could actually at least walk the half marathon and possibly run some of it so I signed up. It was official.

A few weeks ago, I ran in a 5K at my son and daughter-in-law’s church.  It was a fundraiser for the area food pantry. I have been running 5-6 miles during my training so the thought of a 3.1 mile/5K run didn’t faze me.

As the horn blew signifying the beginning of the race, I started running alongside lots of other people.  As we all got out of the gate and spread out a bit I began to find my stride.  I wasn’t running to be fast or to beat anyone. I was just getting in my training miles for the week. But several things happened that surprised me as I ran the race…

First of all, running with other people actually made me faster.  I beat my own personal time by a lot.  I was not expecting that.

Secondly, I was not expecting the emotion that I would feel as I turned the corner on the last, lone country road and came up over the top of the hill to see the orange flags that marked the way to the finish line.

I heard God whisper to my spirit… “This is life. Run to the end with everything you have and at the end of it all you will understand. The reward will be great and worth every ounce of pain.”

I choked back tears and ran a little faster.

Then as I got closer to the orange flags, I saw them. My husband and my son had finished the race before me and there they were waiting for me, cheering me on to finish well.  I swear that I could see Nick standing with them.

“This is life. So it will be that when you finish this life, those who you love that have gone before you will be there at the finish line cheering you on! The reunion in that life will be worth every ounce of pain in this one.”

The third surprising thing that happened was that I actually placed 2^nd in my age category among women. (And yes, there were more than 2 people in that category). I was only one minute behind first place. I’m still not sure how that happened.  Steve also placed 2^nd and Josh was 1^st in their age categories among men.

Several days later, as I continued to train, I began to have pain in my lower legs.  Over the next few days the pain increased and currently I am dealing with some pretty wicked shin splints. What the heck? Why now?

Once again, right after being on the top of a hill, I find myself in this all too familiar valley.  I have had to cut back my running and rest more while I ice and elevate my legs and wear compression socks.

Oh well, such is life.  Full of hills and valleys.

“Getting knocked down in life is a given… getting up and moving forward is a choice.”  –Zig Ziglar

You can be sure that life will knock you down.  But did you know that you have a choice to either stay there or get up on your feet and move forward from that place?

As for me, I will keep moving forward to race day.  I will finish even if I have to walk the entire thing because it’s not at all about me running.  It is about raising money to save the lives of kids with cancer. And personally, for me, it is about honoring the life of my son, Nick, and hearing God through the pain of loss and struggle and even shin splints.

 

Oh yeah, a couple last things about Job and me…

After Job railed to God for awhile, God finally spoke up and had His say.  After He was finished speaking, Job said… 

“I had heard about you before, but now I have seen you”.

Before all of the pain, when everything was going well, Job had heard about God.  He knew Him in a more superficial way. But after the pain and the struggle and the fight, at the end of it all, Job said that now he has SEEN God.  He suddenly knew Him in an intimate way like dear friends who have just fought through something big together.

So it is also with me.

 

“And so the Lord blessed Job at the end of his life more than at the beginning….Job lived 140 years after that, living to see his grandchildren and great-grandchildren too.  Then at last he died, an old, old man, after living a long, good life.”

Just 10 short weeks after my brother Jon died, our daughter and son-in-law told us that they were pregnant with our first grandchild, a girl who would be named after her Uncle Nick…Avery Nichole.

In the coming years, my son would find a most beautiful woman who had been in our lives when she was a little girl (she was one of Nick’s friends and in his class in elementary school).  She loves my son, encourages him, and builds him up. They would soon marry.

Then came a grandson…Micah Benjamin.  And another granddaughter…Ellie Anne.

I don’t really want to live to be 140, but I am already feeling like God is blessing my life more now than He did at the beginning.  These precious children are the joys of my life.

Life is hard…but God is good.  You gotta roll with the punches.

    

Of course, Song #35 on my Race Day Playlist has to be Roll With the Punches by Lenka.

https://www.youtube.com/watch?v=XZaE4TY09C8

That really hurt me
Like a fist to the face
I wasn’t ready
To be knocked out of place
Suddenly everything I was sure of
Sinking below the depths of the surface
It’s unexpected, it usually is
When you’re rejected
Or you take a hit
Suddenly everything’s thrown in a spin
No time to grow a thicker skin
What kind of situation am I in now?

When life tries to knock all the wind out of you
You’ve got to roll, roll, roll with the punches
If all life offers is black and blue
You’ve got to roll, roll, roll with the punches

When all I want is a little stability
Some time without any bruises
You go and tell me the things that I don’t want to hear
Putting your fist into my ears
Filling me up with the dread and the fear leaving you all in pieces
Suddenly everything’s thrown in a spin
No time to grow a thicker skin
What kind of situation am I in now?

 

Be part of the story!  Donate here… http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2078389&pg=personal&fr_id=59186

If you are unable to donate financially, please consider passing along this message to others who can.  Thank you!

 

Many of you who are reading this most likely know our Backstory, or at least part of it.  If you don’t and would like to know more details of Nick’s story, you can visit his CaringBridge site here…

https://www.caringbridge.org/visit/nickavery

(The purpose of this 16-week blog is to shine the light on childhood cancer by sharing our family’s personal experience as I prepare to run my first ever half marathon and raise money to help children with cancer and their families.  Be a part of the story! Donate here … http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2078389&pg=personal&fr_id=59186 then share with your family and friends.)

When Nick was diagnosed with cancer, one of the first things that had to happen was that he needed to have a double hickman central line surgically implanted into a large vein in the middle of his chest.

The line was partially under the skin of Nick’s chest but about 12 inches of it hung on the outside.  Three times a day, every single day, I gave him antibiotics through that line. Every other day I had to take off all the bandages, clean the skin around the line, and replace the old bandages with fresh, clean ones.  The exposed part of the line was then wound up and taped to Nick’s chest under a neat little square of bandage.

In the months to come Nick would also receive blood, platelets, chemotherapy, and fluids through that central line.  It is also the place where he would have blood drawn about every other day.  The central line prevented him from having to be stuck by needles numerous times a day for months on end.

After 6 months, when Nick had finished treatment and was in remission, the central line was pulled…yes, pulled out…and we were sent home.

Nick was well and we were happy to be moving back home after living in Memphis, Tennessee away from the rest of our family for so long.

THE ONLY TATTOOS I HAVE ARE SCARS

For 2 ½ months in the summer of 2006, while he was in remission and before he relapsed, Nick enjoyed spending time with his brother and sister and his friends. One day, during those months, he was invited to go swimming.  I sat by the side of the pool that day and watched as Nick dived, swam, and played around in the pool with his shirt on.

A bit later I asked him privately why he didn’t take his shirt off to swim.  He told me that he felt weird because of the big scar right in the center of his chest.  One of our St. Jude friends recently talked about her central line scar and described it, very accurately, as looking like a bullet wound to the chest.

I told Nick that his scar was a badge of honor that marked what he had just been through and that he should never be embarrassed about that.  He didn’t respond but I assume that he was thinking about what I had said because about 5 minutes later he stood up, flung off his shirt, and ran off to cannonball into the pool, making quite a splash!

THE WOUND IS WHERE THE LIGHT SHINES THROUGH

After Nick died, I wanted to know everything I could about where he is, what he’s doing, what it’s like there, what he’s like.  Every good parent wants to know these things about their living children, so why would I stop wondering about these things after my son left for Heaven? My questions set my feet on a journey that I am so grateful for because I now live with an eternal perspective that I never would have discovered otherwise.

One of the things that I wondered was if Nick will still have his scar when I see him again.  The automatic, churchy answer is to say “No one will have scars because they have been completely healed.”  That’s a great thought, but is it the truth?

As I searched for the real answer, I found this clue…

In the book of John, there is this great story that took place after Jesus died and then was resurrected.  There was a period of 40 days when He walked around showing Himself to people so that there would be eyewitness accounts that He was still alive.

One day Jesus visited His friends and they were so excited about it that they ran to tell others.

“We have seen the Lord!”

One man, named Thomas, didn’t believe it because he had not seen Jesus with his own eyes.  He told his friends…

“Unless I see the nail marks in his hands and put my finger where the nails were, and put my hand into his side, I will not believe.”

He was asking to see Jesus’ scars because they were the identifying marks that made Jesus who He is.

A week later, Jesus showed up again. This time Thomas was in the room.  Jesus walked over and said to Thomas, “Put your finger here; see my hands. Reach out your hand and put it into my side. Stop doubting and believe.”

Jesus still has scars!

This was a revolutionary thought to me.  Will we carry the significant scars from this life into the next?  If so, why?

No one chooses to have scars.  They are usually the result of an accident or a surgery.  But think about it…each scar has its own story to tell.  They are a part of what make you who you are.  But while that story usually has to do with illness or injury, if we so choose, we can use them to make a better story.

I am confident that when I see Nick again we will look at the scar in the middle of his chest and tell stories of our time in Memphis together.  We will marvel at how that scar prepared the way for a shift in the culture at a very well known hospital and set it on a course that would make it the leader in reaching bereaved parents around the globe with support and hope.  That scar represents the beginning of teaching doctors, nurses, psychosocial team members and other support staff around the world how to better help families when they get bad news, when a child is at the end of life, and beyond.

There is a great line from a song that my son, Josh, shared with me last month during a time when I felt so overburdened by the weight of sickness and death.

“Your scars shine like dark stars.  Yeah, your wounds are where the light shines through.”

Your scars are different than mine.  Different than Nick’s.  Some are visible.  Some are hidden on the inside.  But each carries a story.  Let the light shine through your visible and invisible scars. Find a greater story to live because of them.

 

Song 86 on my Race Day Playlist is Where the Light Shines Through by Switchfoot.  Don’t miss out on the greatness of this song.  Enjoy…

https://www.youtube.com/watch?v=kNP_Du9dSB0&list=PL6Mb92FE5WdUZAlcsskDDWP5y5V9PQOVA&index=3

When you’re feeling like an astronaut
Stuck on a planet even time forgot, and
You’re a version of yourself, but you’re not the same
You try to keep the wound camouflaged, and
The stitches heal, but the years are lost, and
Another bottle on the shelf can’t numb the pain

Why’re you running from yourself now?
You can’t run away

‘Cause your scars shine like dark stars
Yeah, your wounds are where the light shines through
So let’s go there, to that place where
We sing these broken prayers where the light shines through–
The wound is where the light shines through
Yeah, the wound is where the light shines through

Ain’t we all just Abraham’s son?
Saint and sinner with the song and drum, and
We’re fallen on our knees, we all bleed the same
And the only tattoos I have are scars
I got your name written on my heart
And the story that brought us here ain’t the thing that changed, no

I wanna see that light shining
Brighter than the pain

 

Be part of the story!  Donate here…

If you are unable to donate financially, please consider passing along this message to others who can.  Thank you!

http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2078389&pg=personal&fr_id=59186

 

Many of you who are reading this most likely know our Backstory, or at least part of it.  If you don’t and would like to know more details of Nick’s story, you can visit his CaringBridge site here…

https://www.caringbridge.org/visit/nickavery

(The purpose of this 16-week blog is to shine the light on childhood cancer by sharing our family’s personal experience as I prepare to run my first ever half marathon and raise money to help children with cancer and their families. Be a part of the story! Donate here then share with your own family and friends.)

When our kids were younger, we took a family vacation to Snowshoe, West Virginia and stayed at the local ski resort.  Despite the fact that it was summer and obviously there was no snow, it was a great vacation with lots to do.  One of those things was a skate park with a halfpipe.

Nick was a skater wannabe.  He loved watching extreme sports, especially Shaun White. Shaun made it look so easy. Surely Nick could do the same thing.  So it only took a few seconds, while I wasn’t looking, for Nick to climb to the top of that halfpipe with his skateboard and get in position to dive over the edge.

If I wouldn’t have stopped him, just in time, I am confident that it all would’ve ended with some broken bones and stitches.  He was not happy when I told him he was not allowed to try the stunt.  He was sure that he could do it.  I told Nick to stay at the top of the halfpipe so that I could, at least, snap a picture.  It’s one of my favorite memories to this day.

I CAN DO IT

Several years later, Nick would take the same attitude when he decided that he wanted to play the guitar. He thought that if he only had a guitar then he would teach himself to play.

Ten days after he began treatment for cancer at St. Jude Children’s Research Hospital he received a guitar from the hospital Santa on Christmas morning.  All morning long he strummed that guitar from his hospital bed while chemotherapy dripped into his bloodstream through the tube from the central line in his chest.

Several days later he found out that he could take free lessons from a guitar teacher through St. Jude.  His teacher told me later that Nick not only caught up to the other students who had been playing for quite some time but he passed them up and quickly became the best of the class.

As I remember the optimistic, can-do spirit of my son, I feel like I really can run this half marathon on December 3.  This morning, I logged another 5 mile run, something that I would have never thought I could have accomplished just a few months ago.

I’m pretty sure that in the seconds before the half marathon begins, I will feel like I’m on a skateboard at the top of a halfpipe waiting to go over the edge! I know that I won’t be the best or win any medals for speed but maybe, just maybe, I might win a different sort of prize…a sense of great accomplishment that I have actually done something I never thought was possible.  I’ve already been through the worst when Nick died.  Everything else in life is cake…even a half marathon.

ROCKSTAR

Just this morning, my good friend and fellow cancer mom, Jamie, wrote about Nick and called him “Nick the 15 year old rockstar”.  He would have loved that!  One urban dictionary defines a rockstar as…“Someone who doesn’t follow rules, they make their own. The go out of their way to be extraordinary, different from everyone else.” 

Yep. Nick was a rockstar.

What keeps us from being a rockstar, someone who is not afraid to be different, extraordinary?  What if we stood out from the crowd so that our lives might make a positive impact on someone else?

The world might just be a little bit better.

 

Song #14 on my Race Day Playlist is Sk8erBoi by Avril Lavigne.  It is a song that’s on Nick’s iPod and I love it because it will always remind me of him.

So channel your inner rockstar, turn up the volume, throw up your rawkfist, and enjoy Sk8erBoi!

https://www.youtube.com/watch?v=TIy3n2b7V9k

He was a boy.

She was a girl.

Can I make it anymore obvious?

He was a punk.

She did ballet.

What more can I say?

He wanted her.

She’d never tell.

Secretly she wanted him as well.

And all of her friends stuck up their nose.

They had a problem with his baggy clothes.

 

He was a skater boy.

She said, “See ya later, boy.”

He wasn’t good enough for her.

She had a pretty face but her head was up in space.

She needed to come back down to earth.

 

Five years from now, she sits at home feeding the baby.

She’s all alone.

She turns on TV and guess who she sees?

Skater boy rockin’ up MTV.

She calls up her friends.

They already know.

And they’ve all got tickets to see his show.

She tags along,

Stands in the crowd,

Looks up at the man that she turned down.

 

He was a skater boy.

She said, “See ya later, boy.”

He wasn’t good enough for her.

Now he’s a superstar

Slammin’ on his guitar

Does your pretty face see what he’s worth?

 

Be part of the story!  Donate here…

If you are unable to donate financially, please consider passing along this message to others who can.  Thank you!

http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2078389&pg=personal&fr_id=59186

 

If you would like to know more details of Nick’s story, you can visit his CaringBridge site here…

https://www.caringbridge.org/visit/nickavery