Facebook just shared some memories with me today. Not that I needed Facebook to tell me where I was two years ago and what my friends were tagging me in on their status updates that day.
Two years ago, my husband and I were sitting in a waiting room. We were the first people to show up at 5 in the morning and sat there all day watching other parents come and go. We were the last ones left in the room when we finally left ten hours later.
It was a grueling day made easier by the posts and messages we received as we sat there waiting for the neurosurgeon to bring us news that our 8 year old son was safely out of surgery and that the brain tumor that sideswiped my family was out. At the time, our concerns were acute – “Will he wake up?” “Will he be able to speak?” “Will he remember who we are?” As he recovered, those concerns were replaced by new ones – “Will he be the same?” “Will we ever be the same?”
We were given a simple plan: surgery, recovery, follow-up, happily-ever-after. Two years later we are still following up. I recently told our surgeon that as simple as the post-surgical narrative seemed, it is far more complex. We didn’t realize that we would forever be altered. That for the rest of our lives, when my son had a hangnail, we would give him a band-aid and then follow up with a google search for “hangnails and brain tumor” just to make sure. We didn’t realize the havoc medications and testing would create in our son’s life. We didn’t realize that calling a tumor benign when it’s in the wrong part of the brain is a somewhat misleading term. We didn’t realize that there would never be anything simple again.
We also didn’t realize how lucky we were. It’s hard to think that you’re fortunate when your child is the one at the center of community prayers and meal trains. But two years ago, we had no clue how bad things could have been, and as we met other families and saw worse scenarios play out, we guiltily embraced our fortune that our son was a frequent visitor of only the neuro floor and not the oncology unit.
My brother, Rabbi Akiva Weiss, gave me a perfect analogy the other day as I was sharing our recent experiences in the “follow-up” stage of our seemingly never-ending saga. In the Harry Potter series, there are creatures called Thestrals that are only visible to people who have seen death. In the third and fourth books, Harry is brought to Hogwarts by horseless carriage, but in the fifth book, after witnessing the death of his friend, Harry suddenly sees that the carriages were never horseless. The Thestrals are actually the animals that pull the carriages up to the castle. Once you see them, these dark, disturbing and magical creatures, you can’t go back to seeing the horseless carriage. You’re different and literally cannot see things the same way as others.
The Thestrals surround us constantly. They sit in waiting rooms with us and unfurl their wings around MRI machines and rest next to us during inpatient stays while we wait for more and more tests.
Two years ago, I didn’t know anything about brain tumors or seizures. I didn’t know anything about medical journals. I had never heard of the word “resection” before. I had no idea what was going to happen to my life, my son’s life, and my family.
Facebook reminded me that two years ago, I was a different person and when I look back on those memories that appeared on my feed this morning I was jolted back to that never-ending day when I was so naive and uneducated. I look back at that day and I sometimes think it wasn’t real. Could that really have happened? Were we really sitting there all day? How did we even do that? I was reminded of the hundreds of emails and messages we received that day, asking if they could help us, letting us know that they were with us.
Two years ago, we didn’t realize that this would be the day that we would always look back on, that we would always be counting onward from, as the day our definition of normal shifted permanently. We couldn’t know how that one day would frame our every day, how it would lead us to new, deeper friendships, how it would lead us to get involved in organizations that help kids much sicker than our son ever was, how it would lead me to run a half-marathon.
Two years ago, we were just recovering from breast cancer thinking that was the worst things would ever get.
Facebook just reminded me that two years ago we were blessedly clueless, but also ridiculously blessed – and we continue to be so.
Two years and counting.
Categories: Fear, Insanity, Kids, Philosophy, Uncategorized
Beautiful post. Unfortunately, I relate too well. Benign just does not seem like an appropriate term to describe something that almost killed my child. I thank G-d every day for our wonderful neuro-oncologist, neurologist, and neurosurgeon at Columbia who gave me my son back and who continue to help him stay well despite overwhelming challenges.
Thank you for you comment. Having a good team whom you can trust is vital. So glad things worked out well, but I hear you about the constant challenges. Thanks for stopping by on the blog!
Reblogged this on Writing Elves and commented:
Reblogging this today. Three years later and going strong.