Allison and Neil Pillow's Testimony2
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Where does God have me today? BROKEN, Dependent on HIM, I pray right where He wants me.
So this is my story…God’s story through me. I struggled with where to begin and realized I had to go back to the very beginning to see where the Lord actually has me TODAY. This is no doubt an abbreviated version of my reflections!
I was baptized in the 6th grade as I walked the aisle with fear and trembling. The oldest of three children, the only girl, I was a very compliant, obedient, rule following, people/parent pleasing child. I “worked” at my young faith for many years attempting to finally “arrive”…to look like the strong youth leaders that stood before me. High school was pretty uneventful just struggled with the usual acceptance issues. Then I got to college and for the first time really learned what GRACE was. Under RUF teaching, Romans 5:8 resonated….God showed His love for ME in this…that Christ died while I was still a sinner. But that was only a small beginning of letting go of my hand in my assurance of faith. I was a very controlled person…
In February 2000, Neil and I met on a 100% blind date and were married only 11 months later. So there was a lot of grace to be taught in those first two years of marriage. Thankfully we were rooted under great teaching at WPC…which by grace was such a thoughtless transition for me after attending RUF in college. I knew GRACE…I knew Christ was sufficient…but there was still MUCH of my life I could “control.”
Two children came along…not in our timing but in GOD’s…letting go of control…a little…but I was still an active part in the treatments sought.
In 2008, the first year of Leah’s life, my feet really started to bother me. You see I was a runner…it was my “happy place”…it ensured a “good day”…I could “control” the mood of my day by going for a run. I just didn’t realize (or accept) that this was one of my biggest idols…until I couldn’t have it. I slowly had to stop running altogether. We were in small group Bible study during that time at Cindy Mercer’s…and I remember beginning to think…God is saving me from myself…His plan is bigger than mine. His control of my life is better than mine. My hurting feet were a gift. I was being broken of my “control freak” self…just tiny fractures at a time…
AND then 2010 came…
After a good two years after the onset of my feet issues and resting from my running obsession…out of no where I found myself pregnant…only 4 months after moving into our new home (our “forever” home) which was precisely 3 bedrooms! I was shocked and a little scared, and Neil was more shocked and more scared! Well my control nature self thought this was God’s humor. I love to plan, and I would just have to give it all up and put this baby in a closet…with 2-3 times used hand me downs that I received BACK from friends. The details didn’t matter this time…God again had saved me from myself and gave me a gift I didn’t see coming. I called myself letting go.
We were all so excited…Hayden was dying for a brother and Leah just wanted a baby to mother. On October 7, 2010 we ALL headed to Jackson to see if this baby was a boy or girl….and I mean ALL of us! In the tiny ultrasound room crowded the four of us plus my parents plus Neil’s parents! This time around we thought we would let everyone in on the excitement! OH BOY! Jan, the ultrasound tech, who I knew well, began to scan over the baby… everyone glued to the screen. She stopped in the crucial area and slowly typed B O Y! Leah grinned and Hayden beamed! Then she just continued to scan very quietly and finally looked at Neil and me and said “I need to talk to yall” and asked everyone else to step out. All I could say was “Oh no.” What Jan proceeded to tell us there was a lot of fluid on the baby’s brain and she herself could not see any brain tissue…she herself fighting back tears. I remember asking if he would make it and her saying “probably not.” All I could do was roll over to Neil and say “Oh GOD!” Over the next hour or so we had three different doctors come in and ultrasound the baby themselves…one of them, the high risk specialist, did at least see a cerebellum and questionable cerebrum. However, they ALL gave the baby a grim prognosis. This baby had severe hydrocephalus. So all three highly experienced, compassionate, and Christian-professing doctors…each individually gave us our “options”…1.conservative-stay where we are in their care 2.aggressive treatment- transfer to UMC or elsewhere pursuing any possible inter-uterine procedures 3.terminate the pregnancy- there were places we could go that would make it “comfortable” they said. I promise you…no exaggeration…that 19 week gestation Cole Pillow kicked every time they said “terminate.” I would say “he just moved”…and they would look shocked at me. Well, for me there was never a decision to be made! This baby was so real to me…he was mine. And I cried that day…Oh I cried…but I can honestly say the Lord instantly protected me…I truly was not angry…not even at God.
The next 19 weeks to follow would be the hardest thing I have been called to do…not necessarily being this baby’s mother…but resting in the most uncertain time of my life. Not knowing what the weeks and months to come would hold. For the first time in my life the branch I was clinging to in my faith attempts…my attempts at relying on God…Well that branch broke…clean off the tree…but I didn’t fall…truly I did not tumble to the ground…God was holding me and had been holding me for all the 33 years of my life. For the first time in my life I could say without a shadow of a doubt that God was real…I really was His child…and He had not left me in desperation! He allowed me to see from the very beginning that nothing within me could face the next day…but that HE 100% would sustain Neil and me.
I was scared, sad, heart broken but can honestly say I was not angry…and that was God affirming His presence in my life! And for many ways initially it was easier for me than it was for Neil and our parents…because I already “had” the baby…he was alive and moving and with me all the time. Everyone else wanted to protect me I think. And I was surrounded by healthy pregnancies. My own brother and his wife were due only weeks ahead of me. I remember waking up the morning after finding out our diagnosis just wanting to go back to the way things were…mother of two…no surprises.
My first errand out the day after our ultrasound I came up on a mother and her wheelchair bound handicap son. I immediately got back in my car, cried and said “I can’t do this.” My first day back at work…my patients immediately asked about the baby (they knew I was to find out if it was a boy or girl). After the first patient visit I just got back in my car and cried…it was too much. But I did press on and over the course of the day my patients were such a gift….they were helping me celebrate my baby in the most innocent ways. The Lord was present in every moment…making HIMSELF known! He wasn’t letting me despair…not leaving me on my own.
When I set out to initially reflect on this story weeks ago…I had a pretty steady story in my mind…but then I read my journal (for the first time in 5 ½ years) from those 19 weeks of carrying this baby…and it was a rollercoaster! HA!
From the moment we got home after that Oct 7 appointment, we were surrounded by our friends and church in the most amazing ways. We were loved on, fed, and prayed for. Women who I knew and who I didn’t know that well came to my home to share their own heartbreaking stories. That first Sunday at church…I knew it would be hard to see people but I just wanted to get there. I didn’t sing without crying…especially “In Christ Alone.” The sermon was on the role of deacons…though not comforting it may seem…but again God made Himself present in every moment…you see He made it oh so clear to me that Neil, a deacon himself, was my deacon. He was so steady…and the Lord had prepared him to be my husband in just this very moment. The next 19 weeks would be the strongest bonding time in our marriage. Though we were surrounded by a lot of encouragement and prayer…he and I were the only ones that knew exactly where the other one was…we wept together, prayed together like never before.
So this is where I have to do a good job summarizing….the next 19 weeks what would the Lord teach me?
1. I am HIS child, COLE is HIS child….Psalm 139…fearfully and wonderfully made. We had set out memorizing this passage with Cindy Mercer some time earlier in the fall. Cole was NO accident. Lori Smith early on passed me Holding on to Hope by Nancy Guthrie. The book walks through her story and Job’s story of suffering. Suffering hurts, Job hurt, Job cried out, but Job never doubted God. It was OK to cry out…God would make a way.
2. God’s sovereignty – I am utterly DEPENDANT on HIM. Job 35:10 “God, my Maker, who giveth songs in the night.” “Any man can sing in the day…but he is skillful who sings when there is no light to read by…he sings from the heart. NO man can make a song in the night of himself; he may attempt it, but he will find that a song in the night must be divinely inspired…no it is not in man’s power to sing when all is adverse…” It is ALL GOD! He was performing a miracle in my heart…I was not angry…I was being sustained…I could get up and do a new day.
3. Power of prayer…When I could not pray, others were praying for me…I was exhausted…but I could crash knowing I was being covered in prayer! Prayer time at Lori and Joeys’ that first Sunday night….the room was filled with church family and friends and we were bathed in prayer…I remember not wanting to leave that moment. Never understood the supernatural power of prayer until now…truly, personally. My prayers are forever changed…not that my prayer life isn’t lacking …it is…but to see people pray with such boldness…to pray for another. To see a hurt and meet it with prayer…not having to have all the right words to pray. Now there were plenty who prayed for healing and that was fine, but I did not. God had given His diagnosis (confirmed by every ultrasound)…Nancy Guthrie said it to me in a phone conversation the best…If a child were born without an arm you wouldn’t pray for a new one to grow. No this baby was perfectly created. No accident here, and we would pray for mercy…for a way to be made. JOB 1:20 “Job stood up and tore his robe in grief. Then he shaved his head and fell to the ground before God.” No, Job didn’t begin to rattle off a begging request to be restored…no, he trusted God…where he was in loss…and praised God. WOW! Though I will be honest, as I finished the Guthrie book and the book of Job I did struggle to see Job was “restored”….not wanting to anticipate my baby being restored…I didn’t want to lean on physical restoration…and Neil very quickly reminded me that our reward is in heaven! And he was so right…Job was restored but no new children replaced the loss of the first…Job knew his reward was in heaven.
4. And that’s the fourth truth that became so real to me… Heaven had never been so real and so beautiful to me before. I did not fear heaven…not for this baby nor myself. And today I can say…heaven is beautiful and holds no fear. God would continue HIS miracle in my heart.
These four things I clung to…my prayer…through every up and down day…I wrote again and again in my journal…”Oh Dear Lord continue a miracle in my heart!”
And HE DID! Initially it seemed merciful for God to take this baby now…the doctors didn’t know that he could make it. Heaven seemed merciful! Then he slowly changed our hearts…through book after book, through blogs….to see that to actually have and hold the baby would be a gift…so that’s all I wanted was to just be able to hold this baby. Well the Lord slowly broke us even further. We found a story very similar to Cole’s (ventricle measurements very similar, diagnosed at 19 weeks gestation, baby boy)…and were actually able to see pictures and everything…a first real picture of our potential reality…and wow we were overwhelmed all over again. We had not grasped the full idea of caring for a growing disabled child. But again the Lord continued to work His miracle in my heart. We went from thinking heaven would be merciful to nurturing and caring for this child would be merciful. This may sound harsh but again it just shows in a short two weeks where the Lord brought us. We were praying the Lord to prepare us to be the parents of this baby with whatever complications came his way. This baby who now had a name, Cole Benton Pillow. To be prayed for by name! And from this moment I truly expected the worst…(in so many ways protecting myself from further hurt and to take each day as a gift.) I have never lived by DAILY bread as I did while carrying Cole. To look ahead was just too overwhelming.
The week after facing the reality of raising a disabled child was a really tough one. We skipped church that Sunday but did slip into the balcony the next Sunday where I very quickly see newborn Langdon and Kathryn Dyksterhouse on their first return to church outing. I find a seat then look over and see Sister Kosko with David. I am telling you the LORD was so unmistakably present each and every day! Seeing the people that would be the hardest to face in that moment…again God was bigger than I was and knew just what I needed to be drawn in closer. At the end of that service we sang “Jesus Draw Me Ever Nearer,” one of my very favorite songs to this day! “Jesus draw me Nearer as I labor through this storm…may this journey bring a blessing. May I rise on wings of faith. At the end of my hearts testing with Your likeness let me wake!” After the service Sister came over to give me a hug and just said God would give us strength and there would be blessing. It is amazing the weight of words like that from someone you know has suffered brings to another. I wrote that day “I have never had a greater dependence on the Lord because on my own I just want to crawl in a hole.” God was making a way moment by moment…and drawing me to HIM.
I continued to pray for that miracle in my heart…each day. There were good days and bad days. The uncertainty was the hardest part…I just wanted Cole here…to get the shunt…and the care he needed.
One other thing…our amniocentesis was normal! So we at least did not have a defining diagnosis…that came with precise limitations etc. We just still would not know until he got here.
Well, February 16 FINALLY arrived! I was beyond ready! We had been begging for weeks for “our plan,” our “date”; and we just kept getting “come back the next week”. That was yet another mercy. My pregnancy itself was totally uncomplicated …even my platelets (which dropped with the other two)…were actually increasing at the end…and they say that very rarely happens. So Cole would have every advantage he could going FULL term. BUT I was emotionally whooped and scared! I knew I would have a pretty non-traditional C-section and that was frightening as well. But here we were…and the moment they laid me back after the spinal I lost it! My reality just became a reality! “Do I believe what I say I believe???” Neil and I cried through the entire procedure…just overwhelmed. Then they said Cole was here, but I heard nothing. I lost it again….BUT THEN HE CRIED! And truly I wept with JOY! They brought him around and even let Neil hold him and I tell you he was beautiful! All 8lbs 10oz of him…his head circumference that of a 2 year old…he was perfect! He was here and I knew the rest of the journey with God alongside us would be so much easier! And let me tell you it was and has been!!! There was no misdiagnosis…it was just as severe of hydrocephalus/compressed brain tissue as they expected. And I only say this to give GOD ALL THE GLORY. Keep reading.
Cole amazed the delivery room, his head was in fact as big as the ultrasound had measured…yet he had a whopping 9/10 APGAR, took a pacifier immediately in the NICCU, breathed on his own from the moment he first cried, stayed seizure-free in the NICCU as they waited for them to occur! I tell you, Cole Pillow’s life has been a miracle! The Lord had brought us to a place where we expected NOTHING…there was nothing owed to us nor this baby…a promise of heaven was enough. And over the next years, God would use Cole’s body and brain to defy the MRI’s and shock the doctors. The phone report we got from his first MRI once at UMC NICU was that they didn’t think he could see because they just didn’t see the occipital lobe….BUT he can! We rocked along taking each precious milestone that came as a gift! He smiled intentionally at me I think at 6 weeks…and that was the one thing Dr. Bernet asked me early on was “does he smile?” AND we all know how well Cole can smile now! God had done the miracle in my heart…that was gift enough…gift of peace…He drew me in…we deserved, were not owed ANYTHING more…THEN he chose to continue to LAVISH His miracles on us with Cole’s development…underserved!
We slowly let go of our worst fears for Cole, and I let myself look more and more into the future…to anticipate him “doing it all.” Then in December of 2014 (3y10mo) Cole started having these “episodes.” His head would hurt, he would vomit and vomit, then sleep…each episode lasting 2-4 hours at first. At first we thought they were seizures, then migraines, but no one thought it was the shunt. Mind you shunt failure we watched and waited for in the first two years of Cole’s life. We made multiple ER visits…ruled out the shunt each time. After 15 months of episodes and five different meds, Cole was not getting any better. It seemed we could not go anywhere or do anything. It was the most inopportune times…Christmas, tailgaiting at LSU, at the alter of my brothers wedding, as Neil leaves for a long planned weekend with friends, in a car full of children and friends…everytime Cole went down without warning…lay down with his head hurting then quickly began vomiting then slept for hours. The episodes would take him out from 2-4 hours each time. Then on Feb 19, 2016, an episode began to linger more than 8 hours so once again we headed to the UMC ER …fearing mainly dehydration. Well after hours in the ER, after being medicated, and after thinking he was “perking up” Cole began to hurt again but more intensely than I had ever seen (typically he would just lay there peacefully with his hand on his forehead). But this time he actually began to cry out “in the back, in the backy back!” and in no time he was having his first major seizure…full of tone, eye rolled back, teeth clenched and non-responsive to me. I lost it. I truly thought his ventricles had just erupted. A team was there trying to break the seizure and get him intubated to keep his airway open. After way too long it seemed they had him sedated and on the ventilator. Next to October 7, 2010, this was the scariest moment of my life. I knew what I had thus far in my 5year old son, and I didn’t want anything less…and I cried out! That’s what I prayed….You know God...this is my heart’s desire…nothing less in Cole than yesterday…but Your will and sustain me. AND I KNEW HE WOULD. I cried…I cried out…and the Lord once again confirmed His love for me. I was sustained. Cole woke up returned to himself after a few days from all the meds and we went home…new meds and all.
I was whooped…life with three children in general…but these episodes (called “migra-seizures” at this point) were coming so often, without warning, and stopping me in my tracks. The Lord definitely was working through those moments…HE was stopping me once again. While Cole was down I stayed close obviously…close and quiet…great time to pray…praying for God’s sustaining power once again…but also praying often against self-pity! I was beginning to feel sorry for myself way too much. About this time I began the Lenten devotional that the church gave out…I needed a focus to my quiet time! It was all about Jesus! Christ is ALL. On Feb.16, 2016, Cole’s 5th birthday, the title “No one is immune from suffering”…Psalm 17 written by a restless and afraid David. It said “The blessedness of affliction is that it becomes difficult not to pray, and prayer can lead us to take comfort in God’s Word.” I was grasping…and God used this past Lenten season to draw me in once again…to JESUS, to HIS word. My journal that day read “I know this oh too well. Sadly it is true. The most intense prayer and time in the scripture I have known was while I carried Cole and in the early days after his birth. But mostly while I was utterly helpless…he in my womb…and I could ”DO” nothing…the sweetest time. Though I do not pray for hardship I do pray the Lord will never leave me in my complacency/laziness…comfortable. Always draw me nearer, Jesus!” I was near a “breaking point” I would say (Neil and my children may say I was past it!) But we were finding ourselves helpless and utterly dependent once again…we made the appointments, the cries for help at the ER visits, took the meds, limited Cole’s activity…and the episodes still came. I WAS DEPENDANT! My hands could not control it! On this same day, Cole’s birthday, he would have an episode to the tune of 6 hours that afternoon.
On March 20th, Cole experienced his 8th episode in a 15 day stretch…this one lingering for 8+hours like the one in February did. We were already awaiting an appointment at Le Bohneur for a second opinion, so this time we decided to head straight to the Le Bohneur ER. We arrived around 6pm…Cole still throwing up…nothing at this point. Early on they told us Dr. Boop was the neurosurgeon on call and immediately I felt such peace and comfort being there. MIRACLE - My good friend Misty had sung his praises from her pediatric PT patients, and I knew he was the one we would seek treatment from. There are 6 pediatric neurosurgeons and we arrived on a Sunday evening. He would have had to be on call for us to get him and he was! SUCH A GIFT! By 8pm, Cole began to squirm (otherwise listless from hours of pain and vomiting)…and I looked at the nurse and said he is going to have a seizure. Cole grabbed his head, said “ouch,” and began to seize. This seizure was less severe than the first now on a new seizure med, but it still occurred and they had to knock him out to break it. Cole was admitted and, by 1PM the next day, he was having brain surgery. They adjusted his original catheter and added a second (as Cole proudly claims he has “two tubes” now!) While Cole was in surgery, Neil and I waited in his room listening to “Lord I Need You” (one of Cole’s favorite songs.) And his love of that song was such a gift at that moment…we wept with surgery anxieties, but then I wept knowing that in that very moment I did not need God any more than I did in the moment behind or ahead of me. Oh how quickly I forget where the Lord has brought me…how quickly I begin to rely on myself again. Cole returned home 2 days after surgery.
Preparing this testimony (though I didn’t want to say yes to Richard! HA!) has been such a gift to me...to read old prayers, old journal entries, scriptures and songs that met me where I was. It has helped me see exactly where the Lord has me. And I have to say I have been so encouraged by Richard’s study of Hebrews…Christ is better. FAITH….it is what all this growth that I look back on is about. It is what I knew in my heart but Hebrews, Richard, and Ian have so well defined it in words! I am thankful the Lord is keeping me dependent, saving me from myself, and not leaving me in complacency.
Today I can boldly say Cole Pillow has not had a single “episode” since March 20th! We are so very grateful! The very thing…a shunt failure…that we had feared and anticipated early on in Cole’s life …God brought us and Cole through. And yes, Cole is thriving this summer. We went on vacation two weeks ago and Cole barely made the next height requirement at the water park. They gave him the band, so we went with it! COLE PILLOW rocked the water park! HE backs down from nothing! He sees no deficit. A wise older friend of ours says “Cole wonders why the rest of us walk funny!” His God given determination, zeal for life, big smile, and love of people is a most merciful gift that is allowing him to do more than he would do otherwise with the same abilities.
I have to add this. Cole is a miracle…but Neil and I know…that Hayden and Leah are no less of a miracle. We deserve nothing, and as I always say “I do not want to cease to be amazed” with any of my life! God has chosen to give us a very obvious and tangible reminder in Cole’s life, as I often need the obvious! Dear Lord, continue to perform YOUR miracle in my heart! Yes miracles are real…it is the very thing I cannot accomplish on my own…and that is everything! “Apart from me you can do nothing.” John 15:5l ALL is grace!
I guess from my standpoint how the Lord has worked through me was the more we understood our diagnosis of hydrocephalus the more I became depressed. As far as I read, as severe as our case was, it was not going to be a good outcome. That what I envisioned for my family was unraveling. It made us re-evaluate what our life was going to be like after Cole’s birth. From seizures, in and out of hospitals, not being able to walk, learning disabilities, lifelong care, would we have to move to a larger city to get the care he needed were just a few. Through this time it drew us closer to the Lord and to each other. There was nowhere else to turn. Friends nor family could get us out of this. This was our life, together we found new confidence in our marriage that I felt would withstand way more than I ever expected or thought. So, through this depression and pitying myself that went on for a couple of weeks….I one day just made up my mind through faith and the Holy Spirit that the Lord would sustain us and we were going to be okay. I did find peace before Cole would arrive. It was still hard because of the uncertainty, but we would make it through.
Fast forward to today, as we sit on the other side of it. The gifts the Lord has given us…from not expecting much to where we are now. I’m thankful that this time around I could find joy in raising a newborn that I missed with my other two. I’m thankful for Allison, and I couldn’t imagine going through life without her. The Lord knows better than we do of our situation whether it is our spouse, job situation in life of where he puts us. He has the power and His plan is to draw us closer to Him. The sermon this morning echoes this…from our study in Hebrews of faith and the passage this morning from Hebrew 12:11 “No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.”