Make A Wish Eastern NC created this video for our family...
to capture Oliver's story and our wish trip to Disney World in 2014.
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Here is our story...
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| New Zealnd |
We both love to travel. We were blessed in our first few years of marriage, to go to some far-flung and awe-inspiring places. In between newlywed bliss and travelling I went to graduate school for Clinical Social Work. Andrew continued working in real estate and on the occasional commercial or film job. We also loved being involved with Young Life and our church. We're so glad for these years when we were able to be planted in a mature and loving Christian community.
On August 1st, 2010 our lives changed- forever. Our concept of our "healthy" son fell apart. It began when I went in that Sunday morning to wake Oliver. He had slept in so long that I was afraid we would be late to church. When I went in his room to get him up, I could not wake him. He was breathing but, my mommy instinct told me something was wrong. We tried everything to get him to perk up. Nothing worked. It was terrifying. We spent time on the phone with Andrew's brother, David, who is an ER doctor. We began video-tapping Oliver's odd behavior at David's request, which in hindsight was a brilliant idea. As the minutes went by we got more and more concerned. It seemed that his breathing was getting worse so we ran next door to our neighbor's house (who is a doctor) and she (by the grace of God) was home. As soon as she walked in the door and saw him she said "call 911 right now!" As we waited for the ambulance, Oliver began to turn blue and vomit. I knew, at this point, Oliver's life was in danger.
The ambulance came and the hours that followed proved to be gut-wrenching.
There is no way to prepare for this kind of experience.
There is no way to prepare for this kind of experience.
Once we got to our local hospital it became apparent Oliver needed more specialized care than they could offer locally. We were told after an initial CT scan that his brain was bleeding uncontrollably. I'll never forget when the doctor told us that Oliver needed to be air-lifted. I was shocked! It was the first moment I realized how serious they thought this was. It dawned on me that he might die.
When I got back to the hospital, Andrew and I went into the hall to assess the situation. I told him we had to get on the same page with our mindset. I'm a big believer that mindset is critical. We decided we had to be united on our belief that God loved us, that bad things do happen and that health is not guaranteed. That conversation has be something we return to over and over.
And right there is a major lesson of being a Christian and having a medically fragile child:
You simply won't understand how it fits into God's plan and to the extent you trust God that He is working all things together for the good of those who love him (Romans 8:28), you will have some measure of peace. The confidence that one day Oliver will have a redeemed body and truly every tear will be wiped away. I know of no other way to have any kind of peace with a suffering child.
And right there is a major lesson of being a Christian and having a medically fragile child:
You simply won't understand how it fits into God's plan and to the extent you trust God that He is working all things together for the good of those who love him (Romans 8:28), you will have some measure of peace. The confidence that one day Oliver will have a redeemed body and truly every tear will be wiped away. I know of no other way to have any kind of peace with a suffering child.
The moment the helicopter took off for UNC has a primal place in my psyche. I would guess even if I had Alzheimers and was near death I would remember that moment. If you didn't know this, you will now, you can't go on the Life Flight with your child. You have to drive to meet them. It is an absolute mercy of the Lord that I already knew this because of volunteering with Welcome Home Angel. I don't know what I would have done if I had expected to go. I knew I was going to have to watch his little body be put on a stretcher and take off without us.
It was such a beautiful summer day, the warm sun was beating down on the landing pad. The power of the wind whipped from the blades of the helicopter almost took my breath away. The ground shook at the violent nature of the helicopter becoming air-born. Tears poured down down our faces...one of those heaving, ugly cries. We truly had no idea if we would see our son alive when we got to Chapel Hill. That simply undoes a parent. Andrew's dad drove us and we spent the next 2 1/2 hours on the phone calling our friends to cry with them and ask for prayer.
As I climbed into the mini-van I realized we had reached the holy grail of suffering- we had a child who may not live. As we drove to UNC I kept looking at Oliver's empty car seat thinking, "God, please don't let us have to drive back home, from UNC, with an empty car-seat."
We got a call en-route that Oliver was safely at UNC and stabilized. The seizures had finally stopped after over 5 hours! Prayer answered.
It was such a beautiful summer day, the warm sun was beating down on the landing pad. The power of the wind whipped from the blades of the helicopter almost took my breath away. The ground shook at the violent nature of the helicopter becoming air-born. Tears poured down down our faces...one of those heaving, ugly cries. We truly had no idea if we would see our son alive when we got to Chapel Hill. That simply undoes a parent. Andrew's dad drove us and we spent the next 2 1/2 hours on the phone calling our friends to cry with them and ask for prayer.
As I climbed into the mini-van I realized we had reached the holy grail of suffering- we had a child who may not live. As we drove to UNC I kept looking at Oliver's empty car seat thinking, "God, please don't let us have to drive back home, from UNC, with an empty car-seat."
We got a call en-route that Oliver was safely at UNC and stabilized. The seizures had finally stopped after over 5 hours! Prayer answered.
Once at Chapel Hill we found out that Oliver was suffering from seizures and not a brain bleed (as our local doctor's had speculated). The seizures' underlying cause was Tuberous Sclerosis Complex (TSC)- a rare genetic disorder. TSC causes benign tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. Currently, we are aware of tumors in Oliver's brain and these are what cause his seizures. TSC affects each person differently and the way that it will progress in Oliver's life is uncertain. We had genetic testing done in the fall of 2010 and found out that Oliver has TSC1. This is generally considered to be a milder genetic mutation than TSC2. Overtime it became clear that Andrew also has TSC. Andrew has very few issues due to TSC and for that we are very thankful. Andrew and Oliver are a perfect example of the broad spectrum of TSC. Some folks don't even know they have it while others are severely affected.
After our diagnosis at UNC Oliver's seizures were controlled for 1-2 months. Then, in November of 2010 Oliver began having Infantile Spasms, a catastrophic form of childhood epilepsy.
As of 2015 we have tried:
20 Anti-Epileptic Drugs
A therapeutic diet
Brain re-section surgery
Vagus Nerve Stimulator (which got infected and had to be removed before it was turned on) The archives from August 2012-September 2012 have this whole fiasco :-(
Phase I Clinical Trial drug
Phase I Clinical Trial drug
Sadly, these treatments have not worked. Oliver still averages 2-6 seizures a day. He has Spasms, Tonic-Clonic, Complex Partial and Absence seizures.
The seizures continue to rob Oliver of his development, particularly his communication skills. Oliver is no longer verbal and struggles with virtually every activity of daily living. At 6 years old we still feed, bath, diaper and dress him. Watching him suffer from the seizures and lose so many skills is one of the saddest things we've ever experienced.
Despite all this, Oliver continues to be a loving, happy, social little boy. He brings us much JOY!
Despite all this, Oliver continues to be a loving, happy, social little boy. He brings us much JOY!
We continue on in search of seizure freedom for Oliver. As I mentioned, in August of 2012 Oliver had brain resection surgery. He had a 50% chance of seizure freedom, which he didn't get. If you want to read about it start on the blog archive in August 2012 and go through September 2012. It will take 1-2 hours. Get some tissues handy.
During the time of Oliver's brain surgery our friends loved us SO well. We had everyone wear O-Team t-shirts and got photos all day long of people wearing them, praying and sending their love. We were also blessed by a pre-surgery party where we made a beautiful banner for Oliver's room, prepared treats for our medical team, danced, prayed, etc. It was a time that our community of friends and our church shined like a light house in a dark place. We are forever grateful for not being alone during such a hard time.
His young life is already touching more people than we ever dreamed.
"It is said that in some countries trees will grow,
but will bear no fruit, because there is no winter there."
(Bunyan)
Oliver is the inspiration for our company, The Lanier Property Group,
that we've had the great joy of building with an extraordinary team.
