For me, Mother’s Day began on Saturday this year as I was scheduled to work on Sunday. Really, I feel like it’s Mother’s Day every day as my wonderful husband is always sure to make me feel special no matter if it is a holiday or not. Saturday felt like a crisp fall day rather than teetering on the edge of spring. It was chilly and the cloud cover left the sunshine to remain a mystery. Regardless, we bundled up and headed to town to join in on the festivities at Celebrate Irvington Day.
The tiny streets were lined up with artists, local businesses and everyone in between. There was a craft sale going on which is where you could find me a good chunk of the morning. Sadly, I buy this craft stuff and rarely find time to actually use it. Someday though. Someday. Along with the knick knacks, we found a great kids art table. I pictured Lola and me sitting around in our art smocks (yeah we got some of those too), painting wildly like Salvador Dali. Hopefully Lola gets the creative gene that her father has as this mama isn’t too inspiring in the world of art.
We ate baked goods from the tiny bakery, we warmed up with hot beverages from the coffee shop, we enjoyed meeting new neighbors and exchanging information,
we I eagerly met the new owner of an ice cream shop prepping to open soon, we listened to a band play kids music at the library and we just sort of meandered for hours on end. Even though we were just a couple of miles from our home, Irvington was alive like I had never seen it. I felt proud to be part of a neighborhood where the local businesses and the history of the town were indeed being celebrated.
What was intended to be just an hour or so checking out the Irvington festivities turned into an excursion that kept us out for half the day. This wouldn’t have been a big deal, but I had purposely not given Lola her anti-seizure medication that morning in hopes to conduct a tiny experiment. Rob had shared with me that he had accidentally forgotten to give Lola her medicine a couple days prior and he was pretty shocked as to how different Lola was without it. He said she seemed alert, aware, more attentive and just more focused in general. So I wanted to see for myself. There have been plenty of times where Lola has spit out the Trileptal therefore I knew that delaying a morning dose wouldn’t be detrimental. I have to say…I was kind of shocked as well to see this non-medicated version of Lola.
Rob was right. Lola was Lola, but just a more awake Lola. I mean when you think about it, it sort of makes sense. Anti-seizure medication essentially slows down the brain. We always give it to Lola first thing in the morning (also at night) after her breakfast so her entire day is spent being semi-sedated from this drug. Thankfully Trileptal does not have side effects that are harmful like many of the other anti-seizure medications on the market, but it’s difficult to give your child a medication that you know puts them into slow mode. Now Lola wasn’t suddenly speaking in sentences and she wasn’t miraculously walking, but as her parents, we noticed tiny nuances that were usually a challenge for Lola. She seemed to motor plan more logically, she was more observant, her vision seemed clearer, she was certainly more affectionate and she was happily awake (usually naps late morning/early afternoon) for the entire day. It’s interesting, but Lola has been on Trileptal for almost her entire short little life (she was put on it when she was just four months old) so we don’t exactly know a non-medicated Lola. I have always been so afraid to not give her her medication that I really never thought about what her life would be like without it. But after seeing my child on Saturday, I’ve been thinking about it more than ever.
Lola goes back to see her neurologist, Dr. Zimmer, in July and at that time, we will have some pretty heavy decisions to make. Lola had a 24 hour video EEG back in November where there was brain activity that could possibly lead to seizures. After analyzing those results, Dr. Zimmer made the decision to give Lola’s brain more time to catch up without the worry of seizures. In reality, it’s really a big mystery. They don’t know if Lola is seizure-free because her brain has overcome the epilepsy or if she is seizure-free because of the Trileptal. Dr. Zimmer said at some point we will have to decide if we want to treat the EEG or if we want to treat Lola. For the longest time, I was certain we should continue to treat the EEG as I still have this sickening fear of seizures. I literally watched Lola disappear when she was seizing which is an image no parent should have to witness. Yet after spending a day with my girl without those darn drugs…I’m starting to think its a chance we might have to take.
I want to teach Lola that you can’t spend your life living in fear so perhaps it’s time I start living by my own advice. In July, if Dr. Zimmer thinks the wean is the right thing to do, then I will nervously comply. I knew this time would come at some point and as scary as this decision will be…I have a feeling it’s the direction we are heading down. It’s time for Lola to break out of her protected cocoon and show the world that she can indeed fly. And even if by some random chance, she does start to have seizures, we will simply cross that bridge when we get there. The biggest lesson I am learning as a mom is that I can’t control everything. In fact, we mothers give up control the moment our child is brought into the world. We can only do our best to protect our children, to honor their individuality, to guide them in the right direction while offering choices and ultimately…all we can do is love them. That’s all they want. It’s what all human beings want. Love.
“May I feel contented and safe.
May I feel protected and pleased.
May my physical body support me with strength.
May my life unfold smoothly with ease.”
― Sylvia Boorstein, Happiness Is an Inside Job: Practicing for a Joyful Life
I’ll leave you with a link to a wonderful interview between NPR host of OnBeing Krista Tippett and author, Sylvia Boorstein titled “What We Nurture – The Spirituality of Parenting“. I heard it while driving to work on Mother’s Day and I found myself driving slower and slower in hopes to catch every minute of it. I shed countless tears, I chuckled numerous laughs and I nodded my head in agreement to every aspect of the conversation. I was deeply moved and it made me appreciate, even more, that I am able to relate because I’m lucky enough to be Lola’s mama.
You can find the interview here.