I just attended a wonderful women’s tea over the weekend hosted by some ladies from church. I was asked to share about my journey over the last two years and thought I would include my ponderings here on Gabby’s blog.
God has taken me on an amazing journey over the last 2 years. Ironically my journey began days after I attended a women’s bible study. A bible study during which we were encouraged to tell about a time in our life when we had an enormous gray cloud looming over our head, a time of sadness and gloom, a time when we were completely downtrodden. I honestly shared that I hadn’t yet experienced such a time but knew a trial or trials would certainly come at some point in my life. It seemed like days later that our life would be turned upside down. Our youngest child at the time began having seizures and this would be the beginning of my journey.
My journey would involve many heart wrenching days. Days when I would hold my seizing daughter in my arms and sob. My journey would lead me to many unexpected places. Places filled with sadness and suffering like the PICU of Duke hospital where we shared a room with a 7 week old infant who had been ejected from his car seat in a motor vehicle accident. My journey would bring unexpected people into my life like a family that had recently lost their 5 year old son in an accident and a 12 year old that survived a 13 story fall from a building. My journey would forever change me.
As I reflect back over this time there were four instances when God communicated to me incredible life changing lessons. The first of these was a lesson in trust. You see my daughter had a malformation in her brain and we learned the likelihood of medications controlling her seizures was very small. We learned her best chance for recovery would be surgery if she happened to be a candidate. So as I drove home from an MRI which would be the first of a series of tests to determine her candidacy for surgery the knot formed in my stomach and worry about my daughter’s future flooded my mind. It was then that the tractor trailer smashed through the median, jack-knifed across four lanes of oncoming traffic, and erupted into flames. My car seemingly steered itself past the fiery wreck and into a grass field moments before the truck would explode. It was as though God spoke to me that day and said, “Be still Kelly and know that I am God. None of this is meaningless. It is all happening according to my plan.” I should have died that day. We should have died that day. He had kept us alive for a reason, a purpose, it was not our time.
The next lesson of my journey would take place at Duke Medical Center as I sat by my daughter’s bed. It had been 2 or 3 days since her first surgery. The surgery that we hoped would stop the seizures and it was then that I saw her first post-op seizure. I went to Gabrielle’s side and then slumped back into my chair. It was then that God spoke to me through the words of John Ortberg. Here are the words that lay on the page before me when I opened my book:
“Why does something like this happen? I don’t know. I only know that ultimately, the choice everyone faces is the choice between hope and despair. Jesus says, “Choose hope.” Will you keep going when you don’t know why? When you can’t get any answers that would make the pain go away, will you still say, “My Lord,” even though His ways are not clear to you? Will you keep going with all the grace and grit and faith you can muster and live in hope that one day God will set everything right? Will you trust that God is good?
God wants greatness of soul-people who will endure, wrestle, persevere, refuse to quit, and cling to His goodness even when there is much they can’t see clearly.” Wow. My discouragement melted away and was replaced with new hope. This was my lesson in hope.
That first seizure I saw in the hospital would be the beginning of an onslaught of abnormal electrical activity. Gabrielle’s seizures would again worsen. We began investigating whether she would be a candidate for a very radical brain surgery. It is difficult to describe my faith during this time except to share the lyrics from a song by Mark Schultz which seems to capture my emotions. It is called He’s My Son:
I’m down on my knees again tonight,
I’m hoping this prayer will turn out right.
See, there is a boy that needs Your help.
I’ve done all that I can do myself
His mother is tired,
I’m sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he’s not just anyone, he’s my son.
Sometimes late at night I watch him sleep,
I dream of the boy he’d like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He’s so tired,
And he’s scared
Let him know that You’re there.
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he’s not just anyone, he’s my son.
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow.
See, he’s not just anyone.
Can You hear me?
Can You see him?
Please don’t leave him,
He’s my son.
It was during this time that God granted us a miracle and thereby renewed my faith. He stopped Gabby’s seizures for 4 1/2 months. You see we gathered around my daughter one night and my dad led us in prayer. He prayed,”Where two or three have gathered together in My name, I am there in their midst.”Matthew 18:20 He also said “Your word says that if we ask for things in the name of Jesus, that they would be granted to us. So that’s what we’re doing. In Jesus’ name, we’re asking you to heal Gabrielle.” Beginning the next day she had her first seizure-free day in months. The doctors could not explain it. My faith soared. I was reminded, in a very tangible way, exactly how mighty our God truly is.
My final lesson would be the most difficult. It would be a lesson in surrender. Surrender is the most difficult of these lessons to grasp because it requires that you already have at least a rudimentary understanding of the first three lessons. Without trust, hope, and faith surrender becomes impossible. I would have to leave all stubbornness and resistance behind and surrender myself. At this point I found myself within the walls of NYU medical center. Gabrielle had already endured the first two stages of surgery. She still had electrodes in her brain measuring electrical activity and we had one more day to wait for the final stage of surgery. I left the PICU for the first time in days and went downstairs to update our blog. It was then that I realized the impossible decision that lay before us. Do we close our daughter’s head up and risk the return of seizures or remove the entire right hemisphere of her brain which would result in severe right-sided paralysis? I began crying and praying. Lord, I said please make this decision for me. You who knit Gabby together in my womb. You who knows every hair on her head. You who placed every star in the sky. Not my will but yours be done. I then wrote the following post:
The plan for tomorrow’s surgery is still up in the air. We have not seen any seizures since the resection a week ago. Gabrielle has been taken off all of her anti-convulsants to see how the spiking over her motor-sensory area responds. The doctors are hesitant to remove such an important area if the seizures have stopped. The concern is that spiking could lead to the return of seizure activity in the future. If we see seizures in the next 24 hours we will proceed with further resection if we do not then we will proceed conservatively and remove all the grids and close her up.
This decision is obviously in God’s hands. So many bible verses have flooded my mind over the last several days. Among these:
Proverbs 3:5
“Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will make your paths straight.”
Matthew 6:34
“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”
Philippians 4:6
“Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.”
Psalm 46:10
“Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth.”
And so I am constantly reminded to seek God, trust God, and worry not because He is Lord and He knows the path we should take. So we will sit in our room the next 24 hours continuing to wait on God. Waiting for Him to reveal His decision to us and praying the peace that passes all understanding will be ours.
When I returned to the PICU we had our answer. Gabrielle had 3 seizures in the time I was gone and 11 more that followed. God had faithfully answered my prayer.
My journey to grow in God’s image continues. I have no idea what tomorrow holds but I know God is faithful and He will walk me through any storm that comes my way and I know He will continue to amaze me.
I know it has been way too long since I updated this blog. At first, I was just surviving the last trimester of pregnancy with an insanely busy schedule of therapy appointments, OB appointments, and life. Then I was just trying to get back on my feet from my cesarean, an infection of my incision, and breastfeeding woes. Next the baby colic set in which was not a good mix for homeschooling and 7 therapy appointments a week. Listening to screaming for hours a day is exhausting. All of this seemed minor though compared to a day with seizures. Then on February 14th we thought we saw a seizure. It was a very minor trembling/shivering episode that lasted maybe 15 seconds but something nevertheless. We began watching Gabby like a hawk. She had 2 more of these episodes about 2 weeks later and we contacted Dr. Orrin Devinsky her neurologist at NYU and Dr. Howard Weiner her surgeon.
