Just wanted to let y’all know where we are with Cami and all the stuff happening with the Virginia Dickersons this summer. Because we need your prayers.
First of all, thank you for praying for wisdom, discernment, knowledge, peace, and faith for the health care professionals and us. To update you from the beginning: almost a year ago, Cami casually mentioned at bedtime that she’d been having “episodes” where her vision turned to particles of light which grew steadily brighter (although her vision never completely whited out). Accompanying these “episodes” were ringing in her ears, lightheadedness, and sometimes dizziness that made her have to sit down.
Our first step last September was to visit the pediatrician, a nurse practitioner actually, whom we love so much we drive to the further-away office to see her. At her recommendation, Cami had a full ophthalmological exam, which was clear. We learned migraines can happen without pain, and began to wonder if that’s what was happening.
Our next step was to consult a pediatric neurologist, who conducted a one-hour in-office EEG to see if we could catch one of the “episodes.” When that showed nothing, we went through a 48-hour at-home EEG where Cami’s head was covered with electrodes (and bandaged to keep them secure) and she carried a monitor for the duration of the test. When the first 24 hours were normal, I found myself praying, “Lord, please let her have an episode so they can collect the data they need to determine what’s happening to her.”
Sure enough, the next morning, Cami had the worst episode she’d had to date. And the data was recorded. We waited for the results for two weeks, when we received an email from the doctor: no sign of seizures. But no next step to pursue answers either.
So we went on with life. This spring, Cami’s episodes became more frequent and sometimes left her with a dull headache. So we headed back to Dr. Melissa and sought a second opinion from the neurologists at Children’s National Hospital. Thanks to many prayers and a call from the pediatrician’s office, we were able to request an urgent appointment, which meant Cami started seeing Dr. Lavenstein three weeks ago instead of waiting until October of this year. We took the raw data from the previous 48-hour EEG test. When he read it, he saw “unusual activity in the lower left occipital lobe” which isn’t mirrored on the right side. He ordered an MRI of Cami’s brain to investigate if there’s a “structural” reason for the “cell irritation.”
As we waited between the appointment and the MRI — from Friday to Monday, when normally it takes 7-10 days to obtain pre-approval from the insurance company (another answer to many prayers) — I found some strongholds in my heart that surprised me. (Here’s where it gets real, y’all.)
1. I live in constant, though not always acknowledged, fear that God will take Michael and Cami away from me, that something devastating will happen and they will move to heaven before I do, that I will be left alone here without the two loves of my life here on earth.
Which might mean that Jesus really isn’t the center of my life. That I don’t really trust Him like I say I do. That, deep down in the darkest part of my soul, I believe He is a Taker and not a Giver.
I’ve asked God to heal my heart, to break down this stronghold that keeps me captive to fear and distrust. It’s exhausting to try to live here.
2. Although I try to live with open hands (because everything belongs to God anyway — we’re just stewards), I don’t live that way with my daughter. I don’t give her to Jesus because a. I’m afraid He’ll really take her (see Confession #1, above), and b. I feel entitled to her. She’s my only child. God gave my sister Sarah e.i.g.h.t. children; He only gave me one. It isn’t fair that He take her from me. She’s the only one I have, the only one I’ll ever have.
Which is my saying to Abba, “I don’t like the road You’re asking me to walk. I can do it better, I think.” Which is setting myself up as an idol, when my agenda, plans, wants, desires become what I cling to instead of trusting the Creator of all with my one and only daughter, my precious daughter, whom I love (Genesis 22:2).
Which leads back to the core belief I have about God that underpins Confession #1, above.
When we showed up for the MRI, they informed us the doctor had ordered the test to be with and without contrast. With contrast meant an IV of dye inserted into her bloodstream. Food dyes are Cami’s kryptonite. I panicked just a little at the thought of kryptonite in my girl’s veins. It turns out that the MRI dye is made of iron and water, nothing artificial, which makes sense. It took the tech three tries to find a vein for Cami’s IV, which is the only time I’ve seen her cry through this whole ordeal. What a brave kid she is.
As I sat in the room with Cami while she was in the MRI machine, I flashed back to her first few days of life, when I couldn’t hold her because of all the tubes and monitors, when I felt nothing but exhaustion, when everything was so different than I imagined having a baby would be. Michael and I went through a lot of difficult stuff to conceive Cami. My pregnancy with her was hard. She was born seven weeks early with underdeveloped lungs. And I was powerless to do anything to make her “normal.”
Theme song of my life. You’d think I’d sing it with gusto and ownership by now. You’d think it would be an anthem of celebration by now, accompanied by the knowledge that God isn’t powerless, that He is good, and He is for us, and He is trustworthy.
You’d think. (Did I mention Confession #1, above?)
We heard promptly about the MRI results: there are “two white spots” on her brain in the same area the EEG showed abnormal results, but structurally, Cami’s brain is “unremarkable.” Dr. Lavenstein prescribed an anti-seizure medicine that is also used to treat migraines. Cami is taking this medicine on a trial basis, to see if it helps. We’re on the fourth day of the fifteen-day ramp up to an almost moderate dosage. We’ve seen minimal side effects, and no episodes, so far.
(More answers to lots of prayers. So why are my insides still on the defensive, anxiously awaiting the other shoe to drop? Something’s definitely broken inside this heart of mine. And I don’t think it’s a healthy broken.)
Whewy. That’s where we’ve been, and where we are. Here’s where we’re going:
- Cami, Roscoe,and I leave this week for a trip to Charlotte, NC to meet up with my folks while Michael travels to Canada on a road trip with his Bible study table mates.
- Six days after that (June 2nd), I have rotator cuff surgery. (One to three weeks in a shoulder immobilizer, 30 days in a Controlled Cold Compression Therapy device, 2 1/2 months of physical therapy, all of which will hopefully alleviate the increasingly excruciating pain I’ve been trying to smile through and stay pleasant about.)
- Ten days after that (June 13th), Michael leaves for a ten-day work trip. (Hoping I’ll be able to drive by then…)
- During those same ten days that Michael is gone, Cami needs to go back to the neurologist for a follow-up plan. (Really hoping I’ll be able to drive by then.)
- June 29th, Cami turns 14 years old.
- July 4th, Michael blows stuff up for our yearly neighborhood Independence Day Celebration.
- July 9th, Michael has ear surgery to try to alleviate his hearing loss.
Again, I say: Whewy.
All the above is why you haven’t heard from me lately. When I launched this new blog home, I had such noble intentions of writing often, posting brilliant insights that would change the world. For now, I’m settling for honest writing that lets in anyone who chooses to read it.
How can you pray for us? In addition to whatever the Holy Spirit prompts you to pray based on this novella, I ask that you pray for my heart to be continually turned towards Jesus, turned into the pain, so I can feel it and let Him heal it. Stuck in the brokenness, the sadness, the grief, the fear is never a fruitful place to be. I truly want to be effective in the Kingdom. I really do want Jesus to be the center of my life. It’s tough, though, trying to navigate how to love God first when I love these two people so fiercely, when they’re right in front of me, and there’s so much uncertainty.
Pray that I will notice — and rest in — when God’s grace finds me. Because it does. It will.
Pray that I will see all the ways God is a Giver, all the ways He gives to me. Because He does.
Pray that I will live loved. Because I am.