Perspective: A Story Of Suffering And Sovereignty

Steve Saint is perhaps best known as the son of Nate Saint, a missionary pilot in Ecuador who, with four others, was killed by Huaorani indians in 1956.  In June of 2012, Saint was injured and partially paralyzed from the neck down – these things I had heard.  What I had not heard is that Steve Saint had a daughter, Stephenie, who died of a massive cerebral hemorrage in the summer of 2000.  I heard this story, told by Saint himself in 2005, just this morning and was so moved by his faith and understanding of who God is that I wanted to share it here.

God Planned My Daughter’s Death
believe God planned my daughter’s death. In the years prior to her death, people started asking me to go around and speak, and I realized that there was a deficiency in my heart and life: I could not see the world the way God does. Oh, be careful what you pray for. I prayed and begged God and told Ginny, “I can’t keep doing this. I go out and I’m speaking from my head to people and it doesn’t work. I can’t keep going. I can’t speak unless I feel the passion of this.” And so I started praying, “God, please, please let me have your heart for the hurting world out there. I see it, and I empathize a little bit but I don’t have a passion for it.” Now, don’t overrate this. Perhaps a lot of you struggle with the same thing. I just couldn’t keep going and talking about what I had seen God do without a passion to share it. And I had no idea if God would give me such a passion or how he would do it. I’m more mechanical; that’s what I do well. I fly; it just comes, it’s in the genes, I don’t have to figure it out—it’s just there. But passion is another story, so I begged God to let me see his heart.

We have an idea that if we do what God wants us to do, then he owes us to take the suffering away. I believed that; I don’t believe that anymore.

Ginny and I had three boys and then we finally had a little girl. I made her promise me that she’d never grow up; she broke her promise and went away to college. And then a time of suffering came because Youth for Christ asked Stephenie, who could play the piano beautifully as well as the bass guitar, to travel around the world for a year with one of their groups sharing the gospel. And you know what? It wasn’t worth it to me; I wanted my daughter home. I knew that some day she would probably meet a boy and go off. She was tall and slim, and in my eyes, beautiful. She was Ginny’s bosom friend. She was our baby. She started traveling around the world, and it was a painful year. But finally the year was over and she was coming home. Ginny and I met her at the Orlando airport. Grandfather Mincaye was there too. We had made him a sign to hold up, Welcome Home, Stephenie, but he couldn’t read so he held it upside down. He was jumping around, big holes in his ears, wearing a feather headdress. He wasn’t blending! Stephenie came and saw him and tried to pretend that she didn’t see us, but Mincaye went up and grabbed her and started jumping around with her. Then we headed out for a welcome home party—it was a joyous time.

Later, I passed Stephenie in the hall, and she just leaned on me and said, “Pop, I love you.” I thought: God, just beam me up right now. Let’s go at the peak. Does it get any better than this? All of our children are following you, and Stephenie is home. And Ginny and I—we’ve had a twenty-seven-year honeymoon. Let’s just quit right now.

A while later, Ginny said, “Steve, Stephenie’s back in her room. Let’s go back and be with her.” So we ditched everyone else and went back. Stephenie had a headache and asked me to pray for her. Ginny sat on the bed and held Stephenie, and I put my arms around those two girls whom I loved with all my heart, and I started praying.

While I was praying, Stephenie had a massive cerebral hemorrhage. We rushed to the hospital. I rode in the ambulance while our son Jaime and Ginny and Mincaye followed us in the car. Grandfather Mincaye had never seen this type of vehicle with the flashing lights, didn’t understand why strangers had rushed into the house and grabbed Stephenie and hurried off with her. Now he saw her at the hospital, lying on a gurney with a tube down her throat and needles in her arm, and he grabbed me and said, “Who did this to her?” And I saw a look on his face that I’d seen before, and I knew that he’d be willing to kill again to save this granddaughter whom he loved.

I didn’t know what to say. “I don’t know, Mincaye. Nobody is doing this.”

And just like that, this savage from the jungles grabbed me again and said, “Babae, don’t you see?”

No, I didn’t see. My heart was absolutely tearing apart; I didn’t know what was going on.
He said, “Babae, Babae, now I see it well. Don’t you see? God himself is doing this.”
And I thought, what are you saying?

Mincaye started reaching out to all the people in the emergency room, saying, “People, people, don’t you see? God, loving Star, he’s taking her to live with him.” And he said, “Look at me, I’m an old man; pretty soon I’m going to die too, and I’m going there.” Then he said, with a pleading look on his face, “Please, please, won’t you follow God’s trail, too? Coming to God’s place, Star and I will be waiting there to welcome you.”

Why is it that we want every chapter to be good when God promises only that in the last chapter he will make all the other chapters make sense, and he doesn’t promise we’ll see that last chapter here? When Stephenie was dying, the doctor said, “There’s no hope for recovery from an injury like this.” I realized that this was either the time to lose my faith or an opportunity to show the God who gave his only Son to die for my sin that I love and trust him. And then I watched. I watched my sweet wife accept this as God’s will and God’s plan. And you know what God has done through this? He changed my heart. He broke it. He shredded it. And in the process he helped me see what he sees. I thought the worst thing that could happen in life was that people would go into a Christ-less eternity. There’s something worse than that. It is that our loving heavenly Father, the God and Creator of the universe, is being separated every day from those he desperately loves, and he will never be reunited with them again if what this Book says is right.

Moment by moment.

[Special thanks to Pastor Chris McGarvey of Bethel Baptist Church, Delaware for sharing this in his recent series on suffering.  Text courtesy of Grace for Sinners.  You will find the entirety of Steve Saint’s message on Desiring God under the 2005 conference series.]

One Year

Tuesday, July 31, 2012 – 4:00AM

“Dad, Chasey is crying in his bed and he won’t stop moving.”

With these words of a frightened child a year ago came the unheard sound of life forever changed.  A season of watchful anxiety with no answers silently became a parent’s worst nightmare as we were thrown into a path on which there is no escape, no turning back, and no foreseeable end in sight.

The path is dim and lined with shadows: of lost dreams and old lives, of malignancy and pain, of a terminal condition always a breath away.  And yet, God’s grace and goodness to us is woven into this tapestry of pain in ten thousand reasons for our heart to find.

Truly, there is no better sum for the year than this…

“I stand upon the mount of God with sunlight in my soul; I hear the storms and vales beneath, I hear the thunders role. But I am calm with Thee, my God, beneath these glorious skies; and to the height on which I stand, no storms, no clouds can rise. O, this is life! O this is joy, my God to find Thee so: Thy face to see, Thy voice to hear, and all Thy love to know.” Horatious Bonar

Thank you for walking this first year with us, moment by moment.

[As many of you know, Chase’s favorite song is Matt Redman’s “10,000 Reasons.”  I hope this very slight picture of the year blesses you as it does us.  Trace the faithfulness and joy with us… God is good.

Looking For Still Waters

Monday
With a long but encouraging clinic day behind us, I gently lifted Chase onto his hospital bed. We had just finished several rounds through the halls on the tricycle and he was finally ready to rest. After chasing him with a rolling IV poll and protecting/pleading for caution with his central line, I was also ready to rest. As I lifted him, his face contorted in pain and he let out a warning scream -I’d seen it a hundred times at home- the line was pulled tight and the IV tubing stretched from the pole to his chest. I quickly gave it slack and laid him down. He’s an active boy – this happens all the time.
Then he contorted and grabbed his chest, still screaming and crying – this did not happen all the time. With an all too familiar feeling of dread, I raised his shirt to see dampness around his central line dressing. Not again, please, not again.
The doctors and nurses confirmed what we feared. The line had been partially pulled from his chest when the IV tubing caught on the pole. With his new central line -a port- this wasn’t the same problem it would have been, say, two weeks ago – just remove the damaged needle and put in another one. The main features of the access are protected under the skin. It would have been so easy but for the chemo. There was chemo infusing when the needle moved and a particularly vicious one at that. Known for harming tissue and muscle; there was a small but very real chance that instead of going into the vein, the damaged needle had spewed this poison into the muscle around it.
For several hours, there was an intense spiral: immediately discontinue use of the port….apply ice…had we heard about the antidote?…IVs needed in his hands to keep him hydrated…surgery for a temporary line in the morning…and on it went. The door to our room was a constant portal to more poking, prodding, and bad news. Please God, no more
In the early afternoon of Tuesday, for the second time in about 24 hours, Chase was taken into surgery to place a temporary line. Moments before he went into the operating room, I received a text saying that a friend of our dear friend would be the nurse on duty in the room. I can hardly explain the encouragement it is to send your child into that cold, dark, unconscious place with a familiar face and friend at their side. A blessed moment in the chaos.
Despite the completed access surgery, there will still be more unfolding consequences of that malfunctioned needle. His hands are bruised and scarred from all the IVs, both failed and successful. He shows signs of the broken trust that comes from hours of people touching and hurting as they’re trying to save your life – anytime someone enters the room and greets him, he screams “No!”. The port must be left alone for at least a week -maybe two- to guard against the chemo damage, and when he leaves here, with his temporary line (in his upper arm…again), we will have to vigilantly continue to watch for the signs of that wretched drug doing its harm.
The irony of these last two days is that when you’re first given your child’s diagnosis, you expect that horrifying knowledge to be the all-encompassing stress and grief. In this moment, I can assure you that -at least in our case- it’s the little things, the daily, the back-and-forth, the multiple procedures. Those are the things that kick you when you’re already down.
But…
In this moment, he’s laying on the bed sleeping peacefully. …snoring, actually. His punctured, bandaged and tubed arm propped on pillows. His mouth relaxed from its pained expression.
Peace.

“He leads me beside still waters. He restores my soul.” Psalm 23:2b

Moment by moment.

20130515-102749.jpg

Facing A Fear

Chase’s doctor once told us that most parents know it’s time for more chemo when they see their child looking better, eating more, and having more energy.  Proving this theory, Chase’s Thursday lab results were really encouraging which means we are scheduled to go back to the hospital on Monday.  It’s time.  This particular round of chemo includes several days of being admitted to the hospital as well as a spinal tap under anesthesia.

You may remember that I wrote at one time about Chase’s vivid anesthesia memories.  Since that time, we have had really good experiences because he has been given a “forgetting” medicine in pre=op -while still with us- that relaxes him and saves him the memory of a sterile operating room and a mask over his face all without the comfort of mom or dad.

Because of some aspects of his new central line, Chase’s nurse will be removing the needle from his chest a couple of hours before he is scheduled for the spinal tap.  It’s a little tragic as there will be no shower or swimming pool to jump in and celebrate [children with the type of central lines he’s had until now can’t really bathe or swim], but mostly awesome as he has never officially been without his “tubie”.  However, there is a direct impact on the procedure.  The lack of needle in his chest means that there is no good way to administer medicine in pre-op, which means that Chase will go into the operating room by himself and be put under anesthesia while fully concious.

We have been talking about it every day.  How he will be a brave boy, and how he will take a deep breath and fall asleep, and even how -if he can be still- the doctors won’t have to hold him while they put the mask on his face.  He dialogues with us, and understands what he needs to do, but he is still very frightened.

Please pray for Chase on Monday, that he would be anxious for nothing and that God’s perfect peace would surpass and even confound all of our understanding about how Chase would most likely respond in that operating room. (Philippians 4:6-7)

This will be a big step for him and for all of us…but our God is much bigger.

Learning to let go… Moment by moment.

That Time We Went To The Hospital…

These last two weeks have seemed a little like a single long day that wouldn’t quit!  As parents of a child with cancer, we have been carefully prepared to be ready at a moments’ notice to pack and run…and pack and run again, but this has been extraordinary even for us.  When I think through “moment by moment“, I never expect each new moment to be totally different from the last, but that’s exactly what this two-week day seemed to hold.

It all started as we commuted to the hospital for five straight days of all-day chemo infusions [insert comments and mutterings about traffic here] .  We were mercifully able to be home on Saturday, but on Sunday, our best layed plans for “normal” and “rest” were blown to smithereens as soon as I heard the words “Come quick! Chase is bleeding!” and realized that one lumen on his central line had torn.  …so, back to the hospital we went.

A lumen repair kit...aka: needle salvation
A lumen repair kit…aka: needle salvation

Sidenote: we often tell hospital staff “It’s Chase.”…as in “Yes, we know this rarely ever happens, but….it’s Chase.”

Back to the story… in true “It’s Chase” form, Chase’s line tear was in an area for which they had no repair parts, so after hours in the ER and the vascular access team weaving what can only be described as a sterile burrito (comprised of alcohol wipes, gauze and tegaderms) around the line -to protect from the errant bacteria-, we were discharged.  Until Tuesday.  When we went back in for blood and platelet transfusions and the line repair.  We left that same night and managed to stay out until…Wednesday night.  A whole 24 hours.  At which point, Chase hit his chemo nadir (when the chemo is at it’s strongest point), spiked a fever, and after sitting in the ER until 2:30AM, were re-admitted to the hospital.

We were hoping to go home fever-free sometime on Thursday when the newly repaired central line malfunctioned (see: more blood everywhere) and so we didn’t leave until Friday night.  I should also note that we’ve become very close with the vascular access team.  On Friday night, the stability of the line was still somewhat in question, but with nobody finding anything decisively wrong, Thursday’s blood experience was chalked up to a freakish incident of nature and we were discharged with the niggling thought that the line would only ever show it’s cards once we left the hospital…and got home…and tried to rest.  …which did indeed turn out to be the case.

The malfunctioning repair
The malfunctioning repair

On Saturday night, about an hour into Chase’s infusion, I realized his IV fluids were running down the front of his shirt, so after a brief moment of parental freak-out, I calmly put my eyeballs back into their sockets and we went back to the hospital.  Triage in the emergency room lasted so long that by the time the doctors came to look at the line, they declared everything dry and in need of testing.  After an hour or more of testing, it turned out that the line was leaking, so around our favorite admitting hour (2:30am, for those of you just joining us), we were again given a room with the promise of surgery consults in the morning.

Without a doubt, the worst part of the loss of a central line is the need for peripheral IVs (the kind they stick in your hand or arm).  For Chase, that usually means three to five people holding him down and the collapse of at least one vein from his terrifying struggle to escape the needle.  If you were questioning why we’d put up with a central line and all it’s drama in the first place, don’t miss this… The reason we put up with and even love the central line is because it saves Chase from needles.  Medical staff can draw blood and administer any medication or chemo through this line – without ever touching his body.

Proudly displaying his IV - "You should see the other guy!"
Proudly displaying his IV – “You should see the other guys!”

It took four people and two tries, but they finally got an IV in Chase’s hand.  And that concludes the events that led to Chase going into surgery on Sunday afternoon and getting a new central line.

Which summarily ended our two-week long day.

You can’t make this stuff up.

Moment by ever-changing moment.

The heart of man plans his ways, but the Lord establishes his steps. Proverbs 16:9

Sleeping peacefully in pre-op moments before he was taken back to the OR
Sleeping peacefully in pre-op moments before he was taken back to the OR