A Monster Turned Ghost

It passed without me even knowing it. April 14th made 6 months since we have seen Oliver have a seizure. I have spent the past seven years of my life on high alert for the slightest indication that his body was about to begin jerking and trembling and those beautiful lips turn blue. I can tell you every road or parking lot in Wilmington I have pulled into when he would have a bad seizure in the car. I would throw my minivan into “park”, dash around the side, rip the side door open (no time for that smooth automatic door), and say “breathe Ollie, breathe.” I would gently cradle his head in my hands to open his windpipe by titling his head  back and softly ask him, like I’ve done 100 times before, to “come back to me...please come back to mama.” And eventually he would. Sometimes with the help of a rescue med, most of the time without. He would gasp for air and those lips would turn red again and he would peacefully sleep off the highjacking of his brain that just happened.

I do not miss those panic stricken moments, but I honestly don’t really believe it is over. It seems too good to be true. Have they just...stopped? For real? I always thought the stories of “growing out of epilepsy” were just unrealistic, at least for us.

Happy Boy watching One Direction videos 

But you know what is oddly comforting? The seizure monster was a known enemy. We knew what we were fighting. We knew how the epilepsy worked. We knew how it robbed Ollie of his development and a few times even tried to kill him. Our team to fight the monster was well defined. Our weapons, the rescue meds, were sophisticated and at the ready. We had charts and laminated sheets all over the house with instructions of what to do when the seizures attacked. I felt as prepared as I could be. I felt organized and not alone. So many mamas are fighting this monster everyday.

But since this past fall we have been fighting an unknown enemy. There has been a new monster in town since September, but we don’t even know what to call it...

Yesterday, Oliver had his colonoscopy and it came back 100% clear, normal and healthy?! Last week he had an abdominal MRI and it also came back totally fine. Not one thing was out of place on either test, nothing was inflamed or out of order? How is that the case with all of his gastrointestinal issues? I am truly perplexed.

Looking with love at his papa before his colonoscopy at UNC

One thing about all of these tests--the anesthesia recovery process is getting more challenging. No more propofol, no more ketamine, those two aren’t our friends anymore. So, we have decided to take a break for the whole summer from any procedures, sedations, tests or unnecessary blood work. We want to give Oliver a 90 day window of no pokes or scanners or medical stressors, if we are able. It is the summer after-all and let’s be honest, it appears “the answer” is as elusive as it ever was.

A year ago we had a boy who ate and drank normally. He ran and jumped for hours. He was progressing academically. He never experienced pain. Like ever. He was a handful, he was challenging and he always walked around with an array of diagnoses, but he didn’t look like a malnourished child.

So who or what are we fighting? Our Boston team does not believe that Ollie has a Mitochondrial Disease. They told me on a call about a month ago that they do not know of anyone living or dead that is a confirmed case of both TSC and Mitochondrial Disease. Oliver would be the only person in history that they know of. Our UNC team thinks he is having a decline that is slow and may have some yet-to-be-discovered underlying cause. Or they have hypothesized that his body could just be wearing out, which seems inconceivable for an eight year old. Here are all the questions I have been asking all of our doctors and they ALL have the same answer: “We don’t know” (Sigh).

Will he return to baseline?

Is this our “new normal?”

Will he continue to decline? If so, how fast? What if he plateaus, how long will that last?

Will we be able to get him back to his ideal weight of 65 lbs?

Should we pursue having him return to school in the fall?

Should we get even more in-home care?

Is this a mitochondrial disease?

Is this a rare manifestation of Tuberous Sclerosis?

Is this related to his Autism?

I could go on and on, but you get the idea. Since September, we have basically been playing the rule-out game. We have ruled out a host of issues, but still no rock solid diagnosis. I hate this game. This is when having a child who could communicate would make a huge difference in trying to sort through what is going on.

So we fight the ghost now. No longer Monster #2, with a face, a name, but a ghost.

I guess in some ways the only way to fight a ghost is to lean into the world of the supernatural. So we will continue our path with prayer in our community of believers. Who know that hope, faith and love are the key ingredients for a good life. We’ll cling to that truth even when comfort and health seem elusive.

We don’t know what the future holds, which drives me nuts. It could be tragic and heartbreaking, or we hope it will be triumphant and inspiring. I doubt we’ll ever get back to “normal”...which was never that normal anyway! I trust we’ll grow into this new, ever complicated world of Oliver’s care. I know we’re grateful for each day we keep the seizure monster away even if there is a new ghost that haunts our house and our lives.

On the road again to yet another appointment

Control is such an illusion. I love Brian Tracy’s quote “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.”

Mr. Sleepyhead waiting for an abdominal x-ray

And now these three things remain:

faith, hope and love. But the greatest of these is love.

(1 Corinthians 13:13)