Trey Erwin

Maturing In Grief

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Hey buddy. I thought I would write you and catch you up on some things. It’s 2 AM and I was doing this in my head so I thought I would put it on paper. Putting it on paper these days means that you are dictating something to your phone. That would totally blow you away. And, you know I don’t do anything at 2 AM unless it’s important. Honestly, Abbie woke me up because she had to go to the bathroom and I took our new golden retriever puppy out at the same time. I know you would feel the same way Collin does and be protective of Abbie versus the excitement of the new puppy. It’s hard to believe we got Abbie one month before you started feeling sick.

I haven’t written to you in a long time. Actually, my writing has slowed. Not for the lack of thought, but just a lack of time and discouragement. It is not that you are not thought of, it’s just the days of hearing your voice have long gone; a day I knew would come and I have dreaded.

Last year (2022) we did a study of heaven in Sunday School. I was so anxious to dive into the word and here what Carolyn had to say about where you are and where we will eventually be together. I know too often I loosely use the term of seeing you when I see a goose, or comment during a ball game that you’re the angel in the outfield, or tell someone that I know was close to you that you are an angel on their shoulder. I know none of that’s true and you are not something that can be put in a pocket and carried around. And I definitely know you are not an angel in heaven. People misinterpret scripture and we don’t become angels when we die and float on clouds! Maybe it comforts me that it’s the memory of you that is carried around. I have no doubt that you are doing exactly God intended-spending time with Him, praising Jesus, and hopefully talking to many of the prophets you read about. It would be nice to think that you are looking down on me and your family, but I know you would not want to see so much of the sadness in this world. And frankly, it’s not biblical. Neither is this, really, but it sure makes me feel better. Some people journal every day, but I blog.

Several things happened in church this last Sunday that brought you to mind. While we were singing the songs I consider contemporary worship, there was a little girl probably between the age of five and eight in the seats behind me, and she was singing every word to the songs. I started to cry because one, it was just so precious, and two, I knew that mother was teaching her children by listening to the music in the car (like we used to do). Pastor Matt announced that we will be studying in James very soon. Honestly, I can’t remember if I rolled my eyes or had a feeling of excitement knowing that James was one of your favorite books in the Bible. Either way, it will be a great study and I know that I will learn much from what Pastor Matt has to say. (You would love him, by the way. He knows Papa K.)

Lastly, it was announced that Impact is coming up soon. Your Aunt Donna and I had a collective sigh. We know it’s not Impact in our minds and should still be D-Now, but I think during the many changes in the regime at church, the name was changed to move with the times. I get that. But while others move on, I have keen awareness that it is January and the beginning of the season I dread every year, January through July. I wish I could sleep January through July and wake up in August for vacation. We know that is not how life works.

Many things happened in the last year. Your dad, Collin, and I all had surgery. Too bad it wasn’t all at the same time. Your dad started treatments at West Clinic and is going every three weeks. While it’s heavy on my heart that he has to endure this, we know it’s what is best and it’s helping to reduce the cancer in his neck. So many around us are being diagnosed with pancreatic cancer. I just don’t understand why people are suffering.

I didn’t ask for donations to St. Jude for your birthday this last year. So many give to St. Jude and that’s such a blessing but I wanted to do something different. This idea actually came to life while on a short vacation and the Ralph Lauren store in Pigeon Forge was all in. I didn’t know how I was going to accomplish this idea that I intended to be very small. I took a chance and put the word out (Venmo would be your friend, I know that for sure) that I was in Pigeon Forge and wanted to buy Polo hats to give out to St. Jude and West Clinic patients in honor of your birthday. I had in my mind that I would probably end up buying maybe 10 hats. Those 10 hats turned into being over 200 to be gifted away from donations. We almost bought the store out and I came home and ordered more as the money continued to come in. I remember getting a message from a friend of mine that was given a hat at West Clinic in your memory. What a blessing to see things come full circle and help others. The circle of life. Just had to put the Lion King reference in here for you. The money I had leftover from the collections I gave to the Collierville football team to add to your scholarship for a senior football player.

I don’t know if mature is the right word, but I think purchasing the hats for others last year was much more constructive than being huddled up in a ball in bed. There was such joy blessing others. It’s something you would do and I hope to come up with something for your birthday in July.

Out of the blue last night I got a text from a sweet family friend of the family that I have not heard from in probably 8 plus years. She sent a picture of her microwave and said she still stops her microwave when there is 13 seconds left on the timer. The small gesture of a simple text has such an impact on this mama’s heart. People might call that a Godwink, but I think it is a blessing that people are still carrying you close to their heart. That’s my greatest desire. Matter of fact, just this week Tara Peeper sent me a text with the picture of the song 10,000 Reasons on her first day back to school. And Gina Johnson got a purple toothbrush today and sent me a picture and thought of you. Purplely, we said! Oh, how I hope people will continue to reach out with their precious thoughts. Whereas they might think it would cause sadness, it actually helps so much in the healing.

I got another message from a dear friend that told me she holds the last decade of memories of you close to her heart. That meant the world to me. When many of us who are faced with our own mortality or that of our loved ones, we seem to understand the grieving process a smidge better, and the way you handled your journey to Jesus has helped all of us. I know one day Jesus will heal me of the grief I carry, however heavy it might be at the time. But you know I’m one strong mama.

A lady came into the new law firm I work for and she made the remark that I looked familiar. I gave my standard line, “Do you remember the Collierville football player who was diagnosed with pancreatic cancer in 2012 and was the pray for Trey movement?” She immediately said oh yes, we prayed for him. I said well I’m his mother. Whether or not that is how she recognized me is not the point. The point is I opened the door to share your faith story, and maybe it’s a little selfish of me that I know I’m keeping your legacy alive. Even though my coworker knows your story, I know she probably thought I was crazy in bringing you up. But she will be a mom one day and understand.

Well, I still miss you incredibly. Things are starting to move into place upstairs. I finally cleaned out your closet. I take that back, I just took your billion clothes off the rack. I’ve told your dad that is my New Year’s resolution is to get upstairs totally cleaned out. I have no idea why he laughed at me. Maybe because that hasn’t been done in 10 years. Now that it’s starting to bother me, it’s time to get things done. I might have to rent a dumpster!

I read this in an article about cancer, “It’s common for the grief process to take a year or longer. A grieving person must resolve the emotional and life changes that come with the death of a loved one. The pain may become less intense, but it’s normal to feel emotionally involved with the deceased for many years.” While that statement is so true, I wonder what is their definition of “many years.” I think I have matured in my grief because the pain is not so intense and my tears no longer flow as often as they did. Oh, but it will catch me off guard at times! That has nothing to do with how much I miss you being with us, it is more about accepting reality.

We need a place we can turn to when we are going through the dark valleys of our souls. Having hidden in literal caves to escape death from King Saul, David knew the value of having a good, safe hiding place. For David, God was his refuge that was entirely trustworthy and reliable in all circumstances.

I remind myself that God knows my heart’s innermost cries. Our feelings of fear, anger, frustration, and everything else is safe in His hands. I have held tight to David’s prayer in Psalm 9:9-10, which says “The LORD is a refuge for the oppressed, a stronghold in times of trouble. Those who know your name trust in you, for you, Lord, have never forsaken those who seek you.” Oppressed? Yes. I still feel the pressure from society to conform to the norm that I should be in a certain stage of grief. I feel like that is putting me in a box of when I can and cannot talk about you and feel comfortable with others dealing with the memory of your death. I think, personally, it takes a lot of guts to talk about you. You know I’m laughing because you would talk about yourself all day long.

I could go on and on, but it’s now 3:50 AM and if I have a migraine tomorrow because I did this, your dad’s gonna kill me. And the dogs are getting restless because I’m talking. Thanks a lot buddy, now I’ll never go back to sleep. I guess this is getting me back for all the nights that we ate oatmeal together at 3 AM and I did your laundry.

We (the family) are all close to the heart of God, and my prayer is that He will be even more merciful during these next seven months as we walk through moment by moment that we experienced together until your last breath. Your Aunt Donna and I talked about that yesterday, the day you took your last breath, who was there, how she felt. I have given my book about you two some of my coworkers and they have a fear of reading it because of sadness. They have no idea the many moments that we spent in laughter. I never thought the memories of laughter would be in the forefront of the memories of such heartache, but I’m SLOWLY getting there.

This song just came to mind that your ducky (Madison) has sung in memory of you and the words are so fitting.

When the pieces seem too shattered to gather off the floor
And all that seems to matter is I don’t feel you anymore
When I’m over come by fear and I hate everything I know
If this waiting last forever, I’m afraid I might let go
I need a reason to sing, I need a reason to sing
I need to know that you’re still holding the whole world in your hands.
Will there be a victory
Will you sing it over me now
Your peace is the melody
You sing it over me now
I need a reason to sing
I need to know that you’re still holding the whole world in your hands
That is a reason to sing!

Love, mama.

PS It’s 5:50 am and I never went back to sleep! So I haven’t proofread this!

And we ate oatmeal just like we had in Hawaii!

A Different Perspective – Mother’s Day

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Mother’s Day Post from Lisa Erwin

I am honored West Cancer Center asked me to write about Mother’s Day from a different perspective.

One person not mentioned in my article is Barry Erwin, Jay’s brother, who passed away from cancer in December 1996. Collin Erwin, my sweet boy, is named after his uncle Barry. We miss you Barry, another part of the Erwin generation taken by cancer. God gave me a mother-in-law who loves the Lord. We walk together on this journey and she is my praying guide. I’m blessed.

Lisa Erwin

The Erwin family has three generations of cancer in their family, all linked to a rare genetic mutation. Their oldest son Trey passed away from pancreatic cancer in 2012, and his mom Lisa continues to fight to keep his memory alive while being there to support her younger son Collin.

“On Mother’s Day each year, I am reminded of the undeniable role of actually being two mothers. I am a grieving mother to a son who no longer bursts in my door with a smile that lit up a room. I am also a mother to a son who is striving to find himself while dealing with the heaviness of loss, doctors, tests, and the reality of what the future might hold.”

Lisa and her family are passionate about supporting the fight against cancer and the need for new and more effective treatment options. “Funding for cancer research is so important. Without research, there would be no hope for Collin.”

How do you prepare yourself for this Hallmark holiday we call Mother’s Day? Some of us are members of a club we never volunteered for when our child was diagnosed with cancer. Most of us share the pain and emptiness Mother’s Day brings, even while celebrating our own mothers. This day has been very bittersweet since my son, Trey, passed away in July 2012 from pancreatic cancer. Honestly, it is a day my grief is a little heavier than most days.

Mother’s Day note from Lisa’s son Trey in 2012

The last Mother’s Day with Trey was spent in Hawaii, his paradise. I remember waking up that morning with an envelope next to my bed. “Mom” I opened it to find a notebook piece of paper saying, “Happy Mother’s Day, I love you thisssss much! Trey.” He enclosed a picture of the two of us from the VOLS Orange and White football game we attended in Knoxville a couple of weeks prior.

Photo enclosed with Trey’s note

That “love phrase” is what we always said to each other. That was the last text he was able to read on July 5, 2012, “I love you thissss much! Mom.” I knew he was desperately trying to read the massive amount of texts he was receiving after we let the public know that he would not be with us much longer.

Many mothers mourn on Mother’s Day. Sadness overtakes the joy of celebrated motherhood and we long to hold our children that we have lost to a cruel cancer. The friends of our children are growing up, going to college, getting married, having children, and Trey forever remains 15 years old. There are days that I sink to the floor in tears with grief because this reality hits me so hard. And honestly, I’m trying to reel in a little “unfairness” towards Collin too.

Just because I lost Trey does not mean I suddenly stopped being a mother to my youngest son, Collin. Just in the last month Collin has become a patient at West because he turned 21 in July of 2020. St. Jude knew it would be best that he is followed closely by West Cancer Center since he carries the same mutant melanoma gene as Trey. It has taken me over nine months to pick up the phone and make the call for an appointment. As a mother, if I didn’t make him go, then maybe the gene would go away and there would be no cancer in Collin’s future. I know in this mama’s heart I cannot take that chance. I believe sometimes the children left behind are loved so fiercely, it’s hard to let them fly.

On Mother’s Day each year, I am reminded of the undeniable role of actually being two mothers. I am a grieving mother to a son who no longer bursts in my door with a smile that lit up a room. I am also a mother to a son who is striving to find himself while dealing with the heaviness of loss, doctors, tests, and the reality of what the future might hold.

Throughout the day, I’m sure I will not be able to resist scrolling through the sea of photos on social media of mothers with their children, young and old, and wonder was there something I missed; a drug or treatment we didn’t pursue; or, my failure as a mother to do everything in my power to help Trey survive. Do not misunderstand. A mother’s faith is not weak due to continual grieving of her child.

I know cancer did not define Trey, his purpose and faith in God directed him. Cancer did not define his grandfather, Jerry, does not define my husband, Jay, and WILL NOT define or deter Collin’s future. Three generations of West Cancer Center patients. We are forever indebted to Dr. Kurt Tauer for his love, honesty, and support for the past 26 years of this familial cancer journey. My prayer is that with West Cancer Center’s help, I will continue to have many more Mother’s Days with Collin. I will remain faithfully by his side as he endures each scan, endoscopy, and doctor’s appointment praying God would spare him.

I will remain ever hopeful that advances in cancer research will lead for better treatment options and better outcomes for other families like mine. I will continue to work to support the work of West Cancer Foundation and raise funds to fuel innovative research to find cures for this terrible disease. Without funding for research, there might not be hope for Collin.

I have said many times, the biggest fear a mother has is that after the death of their child, their child will be forgotten. Every mother who has lost a child deeply desires for others to say their child’s name. For someone else on Mother’s Day, your purpose might be to say their child’s name and acknowledge them as their wonderful mother. This Mother’s Day will not be lost without thinking how many people still greet me by saying, “I know you. Are you Trey’s mother?” My proud reply, “Why yes! Yes I am.” My purpose as a mother…fulfilled. I will enjoy Mother’s Day with my Collin, but in the meantime, I know Trey is enjoying paradise with Jesus and knows his mama loves him thisssss much.

Acknowledging all who have loved and lost on this Mother’s Day.

-Lisa Erwin

The Erwin family at the beach in 2012, one week to the day before Trey passed away from cancer

Lisa with her sons Trey and Collin in Hawaii, Mother’s Day 2012

In St. Jude/Out St. Jude

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That day is very vivid in my mind. It was so hot as we sat in the car. It we just the two of us, Jay and I. July 5, 2012. We had just walked out of St. Jude for what we thought was the last time and left Trey’s sick cancerous body. We both looked at each other and said, “What are we doing to do now?” We had no idea where the next 7 to 8 years would take us and that it would keep us at St. Jude.

Soon after Trey’s death, Dr. Sara Federico contacted us and set up an appointment for Collin to see her. We knew that he carried the same malignant melanoma gene that we believe caused Trey’s cancer. Dr. Sara told us that normally they send patients out for screening since they do not actively have cancer. Dr. Sara loves our family. She petitioned the powers that be and also because of Trey, Collin remained a St. Jude patient for screening. . .until February 19, 2020.

What my head was saying in both instances was the right thing.

“THIS IS WHAT IS NATURAL AND NEEDS TO HAPPEN!”

But my heart had emotions swirling like a carousel at Disneyworld. The picture below shows Collin walking down a long hallway at St. Jude as we enter the Chili’s building to go to our car to leave. What you DON’T see is that he was so happy he was walking and weaving from one side of the hall to the other. No more Kid’s Kafe, no more patient number, no more little red wagons, and no more painted halls. Now, it will be West Cancer Clinic. Leaving with one child and left without one child.

As I thought further when I took another picture through the windshield of St. Jude to go along with the 10 million I already have, our hospital is our church. How many of us leave our church, turn around, and feel sadness because of what life is handing us? Feeling cancerous.

We drove away and didn’t chat much, but I kept thinking. Jesus is our healer, our Jehovah Raphah. This last week or two has been very hard on us because Jay had surgery on February 18, my mother died that afternoon, and Collin’s appointment was on the 19th. There has not been a time of whaling or crying over our mother. We were at peace because she wanted to see Jesus more than anything. We were at peace.

I have the verse of the day sent to my phone each day and on February 26th it read, “Blessed are those who mourn, for they shall be comforted.” Matt. 5:4. I posted it on my Facebook story and said “You can’t make this stuff up.” I wanted people to know that God was comforting me and speaking to me in the most amazing ways and through friends and loved ones in our church. I actually got excited and began to think more about the church being the hospital and I began to pray that people would know that there are really genuine people in the church there to love and serve you and tell you about how Jesus can save you and give you the peace you so desperately desire.

There are things in our life that we have let sin become a cancer and metastasis to other people in the church. We know their needs to be forgiveness and He is waiting to cure us of all the ugly diseases we carry.  There may not be healing, like with Trey, but he’s healthy in heaven. We know we do not have the power to save, only God. There will be changes, as with Collin. There will be more bad news of cancer, as with Jay. But I know, I KNOW, like I told someone else, He never promised us an easy road. He only promised to walk with us through the valleys. He’s got my hand! You need to grab it too!

Psalms 23 – From the Message.

 God, my shepherd!
    I don’t need a thing.
You have bedded me down in lush meadows,
    you find me quiet pools to drink from.
True to your word,
    you let me catch my breath
    and send me in the right direction.

4 Even when the way goes through
    Death Valley,
I’m not afraid
    when you walk at my side.
Your trusty shepherd’s crook
    makes me feel secure.

5 You serve me a six-course dinner
    right in front of my enemies.
You revive my drooping head;
    my cup brims with blessing.

6 Your beauty and love chase after me
    every day of my life.
I’m back home in the house of God
    for the rest of my life.collin st jude

Married or Single?

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My sweet boy:

I have to tell you Buddy, your Aunt Donna and I saw Hamilton last week. Oh, it was something you would have loved! Almost as much as Wicked.  As Aunt Donna and I sat outside on a bench, I asked her, “What do you think Trey would be doing at 23?”  She had no idea. I think, as many “girl” friends as you had, you would have been married. We had a good laugh about that.  Well, look at all your male friends! They are just about all married!

Ms. Shawn (I know, you don’t know her, but you know Taylor), said something to me after the anniversary of your death.  She said I seem to be handling things with more strength.  She couldn’t put her finger on it.  I told her I knew.  I’ve allowed myself to grieve for you. I’m not letting anyone influence me anymore.

I had a rough time one week and I talked to Papa K.  I just didn’t know what to do.  They lost Oreo, Trey. And he told me that just like Oreo will always be a part of them and they will miss him as they walk through life, so will be the same with you, but to a greater grief.  I will always walk through life with an amount of grief as a mother with you beside me.  It was like a light bulb went off.

How can I not grieve? I’ve thought about it a lot this week. I’ve been in the bed and tried to remember the feeling 23 years ago and how massive my belly was.  You kicked the fool out of me. Sometimes it really hurt. As with labor pains, so does death of the child.

God has put us at Living Hope and Trey, it has been such a blessing.  I met someone who lost their child many years ago. They were able to share with me that missing your baby just doesn’t go away and no one should ever tell you to get over it. I felt SO much better! It was like a weight was lifted. God has put many in our path.  Remember Ms. Anita and Ms. Janice?

Honey, I know you didn’t want us upset.  But on earth, we don’t have the ultimate joy you have in heaven even though we try.

Sometimes, things are pitch black, as if I’m looking down a dark tunnel.  I feel as if my heart will break and there is total emptiness.  But, the goodness of God fills my soul somehow.  I do ask Him why.

Why God are you still forgiving my anger?

Why God are you still loving me after crying with jealously of other parents?

A friend of mine posted this and it’s so true:

“We tend to stay away from mourning and dancing. Too afraid to cry, too shy to dance…we become narrow-minded complainers, avoiding pain and also true human joy…While we live in a world subject to the evil one, we belong to God. Let us mourn, and let us dance.” Henri Nouwen

Trey, I still mourn. But buddy, I do dance.  And I’m so thankful for the people in my life that are still willing to walk beside me and your daddy and mourn with us when we need it.  You know the 24’s take care of us! You know God understands.

I know you would be so proud of Collin.  He’s growing up and trying to find his way. He’s wanting that truck that you wanted to buy. So when he gets it, I know he’ll think of you.

I need to stop the tears and end this Happy Birthday.  Another year of healthy in heaven.  Please hug Jimdaddy for us.  We miss him so.  I know you were glad to see someone else to play basketball with!

Dad and I still cling to James 1:2-3 “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces endurance.”  We endure many trials and we continue to grow.

Love you Buddy.

Iphone 2017 1153

 

The Wrestler

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Jay was a wrestler so he liked to wrestle with the boys. He had Trey pinned to get his phone. Parents do that just to irritate their kids, ya know.

I remember the laughter…just as if you had tickled him when he was five under his armpits. It became contagious.

Tears from laughter fell.

Tears fall from grief.

Wrestling. What do we wrestle with? I’m wrestling with migraines, depression, grief, a dying dog, and to be honest – God.

Where do you want us God?

Tears fall from frustration and stress.

Eight years ago they wrestled. Today, we are still wrestling.

So for me – my prayer today is from Psalms. “But You, O GOD, the Lord, deal kindly with me for Your name’s sake; Because Your lovingkindness is good, deliver me;”
‭‭Psalms‬ ‭109:21‬C485D394-E1FA-4C03-A158-3F22CAD0A8EA

Righteous Anger vs. Real Anger

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You deal with anger a lot when you are grieving.  Many Christians like to categorize our anger as “righteous.” But when does that righteous anger cross the line and become just plain anger?

I have found myself angry a lot lately.  I won’t sugarcoat it.  Ephesians 4:26 says, “When you are angry, do not sin, and be sure to stop being angry before the end of the day.”  This anger has led to so many other things, such as depression.  (You should see my house – war zone.)

Why am I angry? I hate cancer.  Oh, wait, another sin…hate.  I feel like instead of being eaten up with cancer, maybe I’m eaten up with sin.

Let me tell you why.  In the last three months, my husband has had surgery for malignant melanoma and basosquamous cell carcinoma; July was “Trey” month, his birthday and the anniversary of his death; I lost two good friends to cancer; and, I have another one that has just been diagnosed who is fighting for her life.  Collin’s endoscopy that was scheduled for August has been rescheduled for November.  I won’t even mention that Aretha Franklin died of pancreatic cancer.

I have to make it clear that I am not angry at God and I don’t know why.  I think because I have a healthy fear of the Lord.  I know God is good.  I think most people would be angry AT God believing that He is the cause.  Yes, I have shaken my fist in the air a couple of times over the last six years, but that has not resulted in any relief or extreme pleasure.

Can I admit that I am angry at the people working in research? Why haven’t you found a cure? Why do you keep saying you’re so close?  Don’t say you’re so close and lead us on.  I remember researchers saying that about ALS in 1982 before my Dad died and I don’t believe they are any closer than they were 30 plus years ago. I had to get that off my chest.

I want to place my anger somewhere.  When we are angry, we all want to place blame.  I do not know who to blame anymore.  I remember so vividly when the doctor who was from genetics came to see Trey at St. Jude to tell us about the P-16 gene.  They told us that it was passed from the father to the son and Jay immediately turned to the wall, became red, and tears began to flow down his face.  Dr. Sara’s hand suddenly grasped his shoulder and she said, “Jay, this is not your fault.”  I believe Jay carries that burden, as do I for giving birth to my children.  (It does take two, ya know.)  There is NO anger towards Jay and NO burden he should carry since God in His almighty power, knowing beginning to end, had a plan and purpose for Trey.

Wait, what?  …since God in His almighty power, knowing beginning to end, had a plan and a purpose…  My apple watch just told me to BREATHE.  And I think I just received an invisible B-12 shot!

Hummm.  “Let every person be quick to hear, slow to speak, slow to anger, for the anger of man does not produce the righteousness of God.” James 1:19-20

You might not see me in an outrage with my anger, but am I using this anger to help others, help them heal, grieve, or need Jesus? That would be righteous anger.  I don’t know that I am, but I want to.  I just know that God is not finished with me yet.  I am thankful He still catches all my tears.  I stepped out of the car crying yesterday…because the Dragons will play their last game in the stadium where Trey played.  Oh, my heart aches.  It aches for the past that cannot become the future.

I watched a video I recently taped for Trey.  The person asked if I liked it.  I told him that I had told Jay all I talked about was Trey’s faith and said nothing about how Trey suffered.  Jay and I got a good laugh how that sounded coming out of my mouth.  So did the person on the other end.  Maybe it not always about the suffering or the anger – righteous or not.  Maybe it’s just all about the faith.