A Gentle Reminder...
Alright I'm back!!
I feel like ever since we headed to Puerto Rico I've been on a bit of a hiatus. When we got back I felt refreshed, excited that we took the vacation and confident in Harlo's progress and then we got a punch in the gut. Day two of being back, Harlo started to experience those nagging little pains in her right foot again which signals that a seizure is coming. Luckily we've got a game plan and have worked with Harlo on how to offset her seizures. It looks a little like this...Jeb or I rub her foot or leg to try and calm her down and she focuses on her self talk and telling the seizures they don't serve her anymore.
I don't think I've shared all the intimate moments that we've had during the sleepless nights of her seizures so I'll explain. There isn't a theme, there's no common timeframe or rhyme or reason for them however Harlo does experience what is called an "Aura". Each person is different and some don't realize it however this "Aura" is what signals to Harlo that a seizure is coming, it's her warning sign. It took us a bit to realize what it was and that it was actually a thing however once she was diagnosed I read 2 books that week focused on Epilepsy in Children and realized what she was experiencing. So with that said we knew when the tingling sensations & cramping in her foot started that her body was speaking to us. I also read that sometimes when you have these "Aura's" that you can actually work with the brain to shift its focus to something different which can offset the seizures.
For Harlo, she has experienced seizures during the day however most of them come at night. For some reason it's like her body starts to relax or maybe it's because she's finally not cartwheeling and flipping around and she starts to feel things as she winds down. Either way they tend to come in the evenings, then Jeb and I lay with her and try and massage her right side (she usually feels the "Aura" in her right arm, foot and leg) and we tell her seizures that they don't serve us any longer and we no longer need them. As strange as it may sound it has worked for us many times not going past just the "Aura". There was a few times when her little body was too tired of fighting that the seizures would come however it's been months since we've been there.
Man is it hard, it rips your stomach in two watching her little body fight them and sometimes not win. Her muscles are tired and sore from the seizures but the hardest part is watching her and realizing something in her little body isn't working correctly. As a parent it's hard not to take responsibility for it, there's this guilt that eats away at you and this weight of "what did I miss" in her daily eating or activities. But at the end of the day we only have so much control and what I've realized throughout this is what I do have control over is being her advocate and knocking down doors to get answers and building a team to support her.
From day one in the Children's Hospital my sister and mother (both very similar to me and very in tune with their body) worked with Harlo to create positive self talk on how we can ask them (seizures) to go away. It's easy to let fear creep in and succumb to what's about to take over however when you learn to remove fear and build tools to help you navigate then we can take control back and work with our body instead of against it. I've realized that although Jeb and I can tackle just about anything and everything that sometimes it just takes an army to build a strong team. That is what we have and it's what we continue to focus on. Watching Harlo build these tools with my mom and sister has also impacted Harlo's confidence and the way she speaks to her body. I can preach to her all day but at some point I'm just her mama (who constantly preaches positivity) so to get other voices and teachers is a true blessing.
So back to the story.....day two of being home from vacation rocked our world a bit since we've been seizure free for almost 6 months. We were thrilled that we went on vacation, that we were able to have food that Harlo could eat and that we could just simply take a break of our daily routine. So when her "Aura" came back that evening it was hard not to let the fear back in. Instead of letting it get us down we just talked it out and said "Alright, back on the bandwagon, we still got work to do!" The blessing out of it was that Harlo didn't progress past her "Aura" that night. It was a long night, she slept between Jeb and I as we took turns massaging her foot for hours until we all finally passed out but it got us refocused on continuing her healing journey.
Since that day we haven't had anything show back up, we continue to focus on her journey and we've found another addition to our team which I'm beyond excited to share in my next blog. If you've run into me you've probably already heard about this new team of individuals because Jeb and I can't contain our excitement and it's like another little treasure that I feel we found and get to share with others so stay tuned!!!