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Our Story of Hope- Avery Family (Nick)

SCARS

When my son, Nick, was diagnosed with cancer just 3 weeks before his 15th birthday, 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 doing well. We were so happy to be moving back to our home in Ohio after living for so long at St. Jude Children’s Research Hospital in Memphis, Tennessee where he was treated.

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 sent me 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 is a part of what make you uniquely who you are. Each scar has its own story to tell.  But while the story usually has to do with illness or injury it is possible to use our scars 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 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.

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Our Story of Hope- Moyd Family

I remember the look on the doctor’s face when she told us the news about our first baby. I think it will forever be engraved in my mind. Five doctors. Five different doctors with the same look on their face.

At eight weeks into our first pregnancy, we were planning our announcement photos. Little did we know our announcement photo would soon greatly differ from the cute ones I had pinned on Pinterest.

The diagnosis was not good for me or our precious little baby. I had a rare condition that they call a molar pregnancy. Even more rare was the fact that I had a twin pregnancy where one was a perfectly normal baby, while the other twin never developed and was a fast-growing tumor. We were told by every doctor there was no chance the baby would make it through this. What complicated things even more was that I have a blood clotting disorder where I clot easily. Molar pregnancies greatly decrease your platelet count, increasing the chances of bleeding too much. Because of this, one doctor, who sees hundreds of patients each week and has only recommended terminating a pregnancy one other time, said this was an impossible situation to manage. And, if I chose to continue, there was a 20% chance of this turning into cancer. There was no way I was going to make it through this. Another hospital that does not perform abortions, said they would make an exception for my situation.

I can still see my husband, Dillon, as he sat solomley stunned, eyes locked into nowhere, his mind racing with every word being spoken. These were big emotions we’ve never had to process before. Even though they were saying everything to me, we were experiencing this together. We shared the same thoughts, the same fears, the same emotions. This wasn’t just my body. This was our baby.

Everything medically made sense to follow through with termination. Even the hospital was making an exception on their policies for me. I thought, “if there’s no chance of us both making it, why would I choose to let us both die when I could be a mom to another baby one day?” The doctor stepped out and told us to take as long as we needed to make our decision. Every doctor we spoke with just wanted the best for me. They treated us like family and mourned with us as they had to deliver this terrible news and recommended what they thought was best. I can’t imagine what they must have been feeling as well. But, I couldn’t run from what came next.

I don’t even know how long we just sat there. Praying this wasn’t really happening. Waiting to wake up from this nightmare. We were just putting off the inevitable. We had to make this impossible decision. Dillon broke the silence. “I’ll be with you with whatever you decide.” My survival instincts screamed reasonings in my head. My heart ached. Then, deep in my soul I felt a whisper: “Would I rather meet God slightly further out in the course of eternity knowing what I had done, or would I rather meet him maybe a little sooner, knowing I could stand tall and chose what pleased Him?” Less than two hours before we found out the devastating news, we had seen the ultrasound of the baby moving around. We had heard the heartbeat of our child. Even when we weren’t sure how it would affect my life, we chose to give our child a chance at life. This is in no way valuing my life any less. Would life be worth living if I didn’t live for anything? If I don’t stick to and stand up for my values?

We told the doctors our decision to continue our pregnancy. I could see the concern on their face, but they displayed the utmost respect for our decision and sent us to a new team of doctors they believed could better handle our situations and the risks with which they came. With this new team, we were informed that the risks of cancer would have been the same percentage even if we would have terminated the day we found out. If I would have given into my fears that day, I would have been crushed to find out we chose to stop that beating heart we heard just hours before, and then later find out the risks are still the same to me.

To anyone who has made the decision to end a pregnancy, I want to tell you this does not define you. Just like my decision to continue my pregnancy does not define me. Only Jesus Christ, my Lord and Savior, defines me. And He can define you too. There is hope and forgiveness in Jesus. If you are holding on to a decision you’ve made in the past, give it to Him. And don’t try to take it back. Getting caught up in guilt delays the redemption and healing. All He wants is for us to follow Him. All He has for us is love. All we have to do is accept it and follow. Let go of any guilt and let Jesus define you.

After telling our family the news, we tried to think about the best way to tell all of our loved ones so they could join us in prayer. We could not carry this burden alone. We found relief in laying it at the feet of our Heavenly Father. He also gave us a community to help us through this storm. We decided the most effective way to reach everyone would be to post an update on Facebook. I must admit, the initial response was so uplifting and encouraging that I found myself starting to shift my reliance to the words on the screen than the God in my heart. We had gone to a movie to escape from the turmoil within for a couple of hours, when I was quickly reminded of why I can only place my contentment in Christ alone. We walked out of the theater to an insurmountable mountain of Facebook notifications. In the matter of two and a half hours, our post had gone viral. People we’ve never even met were commenting words that still loom over me some days. My mind soon was flooded with evil words. I was drowning in discouragement. The words wouldn’t leave my head. They just kept repeating over and over and over. Self-righteous words proclaiming judgement over my husband for not valuing my life. Claims of me just wanting to be a martyr. Accusations of us missing our “boat” of rescue through the five doctors. Yes, the accusations ripped at me, but that wasn’t what the deep ache in my heart was about. They didn’t see it. They didn’t see the reason behind it. The God that had so much glory to show us through it all. Our prayer from the start was that people wouldn’t see our faith as the main thing in this story, but rather what God does through this. Still, the hurt was real. When we got home, I told Dillon I just needed to worship. I couldn’t replace the evil words on my own. So, we sang the songs God has given to others who have gone through hurt. We sang the hope He’s given to people just like us time and time again.

As Dillon strummed and we sang through the tears, it wasn’t too long before the words of praise replaced the gut-wrenching words inside. You know why? Because praise always triumphs over pain. The God we sang to is far mightier than the demons we fought.

The months that followed were tough. I couldn’t stomach any foods or liquids. Dillon would sit with me to make sure I took a sip of Pedialyte every few hours to fight off the dehydration. I couldn’t stand for more than seconds and some days I couldn’t lift my head. We continued to go to weekly doctors appointments. Every visit, we were getting good reports for our baby and worsening reports for me. Still, our baby continued to defy everyone’s expectations. Things were actually looking so well for our baby that they scheduled the next appointment 3 weeks out for our 16 weeks ultrasound. We were looking forward to finding out if we were having a girl or a boy when, two days before our appointment, I knew something was wrong. We went to the ER in the dark of night and learned there was no longer a heartbeat to be found. The tumor had grown too fast for our sweet little fighter. The tests they ran on me revealed my liver, kidneys, and heart were shutting down, my platelets were extremely low, and my blood pressure was frighteningly high. They told my family if we had waited even one or two days, I would have been in critical condition. We had to schedule surgery to get the tumor the size of a football out right away and try to regulate my body. Although this seemed like a defeat, we felt almost an instantaneous peace and even joy in the ER room. We were reminded of a prayer we prayed earlier on in this journey. In seeking His will, we prayed for the miracle of our baby being born, or for the mercy of taking our baby home naturally. We begged God to take us out of making that impossible decision. Instead, He gave us hope in the impossible.

After a week in the hospital, we were back home and regaining strength and it seemed like the storm had passed. Unbeknownst to us that we were just in the eye of the storm. The next storm wall was fast approaching. I soon was informed I was in the 20%. The cancer had moved to my lungs.

Five months of chemo later, I was testing negative and I’m now being monitored for a while.

On a particularly emotionally hard day, I remember opening a book I had lain down a few months prior and never quite got back to. There, awaiting me in it’s pages was a lesson written just for me in that moment. It expounded upon the shortest verse in the Bible: Jesus wept. The shortest verse, yet holding so much power. Power to show me a glimpse into the expanse of His love and compassion for me. The scene around this verse is of Mary crying out to Jesus, falling at His feet asking “Why?” Why hadn’t He come to heal her brother Lazarus. She knew He could have. She knew He hadn’t. I was haunted with the eerie resemblance to some one-sided conversations I had had with God at times over the past few months. Yet, Jesus’s response wasn’t rebuke or condemnation. It was compassion. She wept. He wept. He longed for her to see His greater purpose. He was longing for me to stop questioning, and start trusting in His greater purpose. To trust in the greater glory He could get through this plan.

We’ve seen God so much through all of this. Through the love displayed from friends and family, to spiritual growth of self and others, and financial miracles. There’s so many stories

I could tell of when God graced us with unexpected deposits in my account to pay for a little getaway, to rebate checks to pay for groceries we had forgotten to budget for, to two months of meals supplied by our church family after surgery, to countless more. But I want to part with this. I told Dillon a couple weeks after we lost our baby that it broke my heart thinking our baby was up there waiting on a name. It just seemed fitting to name our little one Hope. If we learned anything, it was the importance hope plays into our life. Hope is what keeps us going. If we are hoping in the wrong thing, we are headed toward a path of discontentment and distruction. But, having hope in the one thing that is always constant, always loving, and always IS, leads us to a path of true satisfaction. Hope can seem impossible sometimes, but we are always hoping in something if we really think about it. Placing hope in an omnipresent, omnipotent, omniscient God can seem impossible. But, hope in the impossible is what we need. It’s what our soul longs for. And it’s what each one of us can have. All we have to do is place our hope in Jesus Christ. Trusting that He took on all of our sins and took our place on the cross. Trusting that He rose again and defeated the death that separates us from God. Trusting and hoping in Him for the rest of our lives here, and trusting and hoping for the life we know we can now have with Him for eternity.

We had to lean into this hope during our impossible decision. We cling to this hope every day. Hope in the impossible is what keeps us going. You can choose hope in any impossible place you find yourself in. You can choose to hope in the impossible today.

“And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.” (1 Peter 5:10)

“but those who hope in the Lord will renew their strength.

They will soar on wings like eagles;

they will run and not grow weary,

they will walk and not be faint.” (Isaiah 40:31)

“24 For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? 25 But if we hope for what we do not yet have, we wait for it patiently.” (Romans 8:24-25)

“And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.” (Romans 5:5)

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” (Romans 15:13)

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” (Romans 8:28)