We are planning a family vacation for next summer. We literally just got back from our this-summer family vacation, which included lots of driving to Mt. Rushmore and various national parks. Next summer’s trip will include an overnight train ride out west, as well as a ride through many western states. As Paul was planning this, I was saying it seemed like so far away to already be planning it. He agreed, but said something like, we just don’t know what the future with Jacob is, so I’d rather do things now instead of putting them off.
That conversation stuck with me, as I feel the same way. Jacob also mentioned wanting to go to overnight summer camp also next summer. This would be a year before his older sister went, and normally I’d say there’s no hurry, but I think if he wants to go, he should. Because again, we don’t know what the future holds. Now I know that none of us knows what the future holds, for ourselves or our children, but we think about this often since Jacob has a brain “lesion” aka tumor, mass, something abnormal on his brain, which means he may eventually need brain surgery (and currently causes epilepsy, which we control with medication). We try not to think about this on a daily basis, and go on with our lives, but it’s always in the back of our minds.
We discovered this lesion about 10 months ago. I say “we,” but I really mean “they.” The doctors pointed out the brain scan results, and I honestly couldn’t even see what they are looking at that’s irregular. It’s kind of like my many ultrasounds, when the tech would point out body parts and I would nod along with understanding, even though I couldn’t make out anything they were pointing to. I look at the brain, and nod and pretend to understand that a different shade of gray means something to the neurosurgeon, but some part of me secretly thinks there’s nothing there, and this is just a hoax, a trick they are playing. Although I haven’t figured out the motivation yet.
The morning of his MRI, as I was showering, the American Author's song kept running through my head in a loop. “This is gonna be the best day of my life….my li-ii-ii-iife…” (You should know that normally when I shower, I either have epiphanies about issues I’ve been grappling with, or have random songs running through my head - maybe being in the shower clears my mind - whatever the reason, now you know). So when I started “hearing” this song, for a fleeting instant, I thought “What if they find something on the MRI today, how horrible is it that this song is in my head?!” But it was in my head to stay, and I knew nothing would go wrong. The neurologist who ordered the scan had assured me she didn’t expect to find anything, and she’d “never been surprised by MRI results” in the past. I actually felt a little crazy for bringing him in for an MRI as a precaution, as I was starting to feel like his medical chart was filling up with tests, all of which showed nothing was wrong with him. I was at that point where obviously I didn’t want anything to be wrong, but I also thought anyone looking at his medical charts would think I’m crazy for putting him through various tests (MRI, EEG, blood test for gluten, etc.).
He was a healthy kid, who randomly, out nowhere, would vomit. When he was fine, he was fine. But every time he threw up, which was becoming a more frequent occurrence, I would think “something is wrong with him, the doctors have to figure out what it is.”
So we went for the MRI, which was scheduled on Veteran's day last year, which was a day off of school. It went fine, and I dropped Jacob off at home, watching him go through the garage into the house where my mom was home, babysitting the others. And I went on my way to work. It wasn’t until 2 hours later that the neurologist called to tell me that the radiology resident read the scan, found a lesion in his left temporal lobe, and wanted him back today for another scan with contrast. I had no idea what any of this meant, but I knew it wasn’t good because, A. it doesn’t sound good even if you don’t know exactly what it means, and B. she said the resident was going to call to tell us, but she told him she wanted to be the one to do it.
So I called Paul and we met at home, where Jacob was waiting, and we took him back to the hospital, telling him they just needed some more pictures. Both of us were extremely nervous, and while we didn’t know what this meant, we knew enough to understand that it wasn’t good, and most likely would be life-changing.
After that scan, followed by a brief stay at Lurie Children’s Hospital, it was determined that Jacob has a lesion in his temporal lobe that is resulting in something called temporal lobe epilepsy. His vomiting episodes (which is what prompted the scans in the first place) were actually seizures. It took me awhile to believe the doctors that he had epilepsy, as the connotations of the word to me were scary, and I didn’t think he was having seizures. But I guess they know better than me (maybe all those years of medical school plus experience being doctors?!) and the fact that since he’s been on anti-epilepsy medication, he has not vomited.
Once he started medication, like I said, he stopped his random vomiting, and his rare “seeing rainbow colors” episodes. So I guess the anti-seizure medication is working, which means he was having seizures. We had to go back 3 months later for another scan, and there had been no change to this mysterious “lesion.” You see, the doctors, even with all of their expertise, don’t know what it is exactly that is on his brain. They don’t know if it’s something called cortical dysplasia, which would mean he was born with it. They don’t know if it is a low-grade tumor. Or it could be both. When they first see it, they don’t know the history, so now it is monitored going forward. The second scan showed it had not changed. Our next scan is in 2 months. So we’ve had many months of no seizures and no scans, allowing us to push this reality to the back of our minds.
But the truth is, we are always aware it is there. At this point, and I stress at this point, I am starting to see this lesion as a blessing. It is there, constantly telling us to live in the moment and not put off things we can do now, yet it is not really affecting our or Jacob’s life right now (besides his daily medications). Theoretically, he could live forever with this diagnosis, taking his medication, having no seizures, and no changes to his brain.
We are generally a cautious couple, and would rather save and put away money if we have any extra, putting off trips until later. But now we live with a sense of urgency, probably the way we should all live, but many people don’t. We don’t know if brain surgery is down the road, but we do know that if it is, it will most likely change our lives if not permanently, then for awhile. The lesion is right near speech in his brain, so we worry that it would cause a reduction in speech, and other skills that we take for granted. We rarely talk about it, but we both worry that if he undergoes brain surgery, he won’t be the same, at least for a while, and maybe ever. So we live for the now, and try not to put off until tomorrow what we can do today (there’s a reason that’s a famous saying).
Ever since that day, when the American Author’s song Best Day of My Life comes on the radio, I cringe and change the station. I mean, what kind of mother has that song in her head the day she finds out something like this about her son. How could my maternal instinct not have told me I should worry? When I hear that song, I am disgusted. It was the worst day of my life.
But on my way home from work the day Paul and I had that discussion about next summer’s trip, the song came on the radio, and I started singing along. When I realized what I was doing, I quickly realized that maybe that day was the best day of my life. Obviously not the best, and I don’t want people to take it the wrong way. But maybe for now, the best because right now this brain lesion serves as more of a nuisance than anything; something we worry about, but which never worsens or causes any trouble for Jacob.
Maybe knowing it’s there will be the thing that pushes us to make better choices for ourselves and our kids, and always live in the moment and do now what we can. It’s always easier to put things off - both good and bad - but we are no longer living like that. This lesion is pushing us to live today, enjoy today, and always be aware that life can change in an instant.
