I had this whole idea of how my first real post might be about any different part of Lexington’s epilepsy journey. Maybe I would write about one of her hospital stays, or keto, or how seizures effect the brain, etc. But I sit here tonight, with this dreaded topic on my mind and I simply can’t shake it…and hey, that’s part of why I started this blog, so here it goes.
Prior to Lexi’s diagnosis, I didn’t have a clue what epilepsy really was. Strobe lights and convulsions were about the extent of my knowledge…I surely didn’t know how holistically epilepsy attacks a person. I’ve since learned that development is just one of epilepsy’s many targets.
Lexington is just under 2 weeks shy of 15 months old. She is stunning. She has this sweet and contagious spirit of joy, with a beautiful smile and big blue eyes. She loves her family and her pets intensely. Thinking of her laugh alone gives me energy for days. Music speaks to her – it calms her, it makes her dance. But, developmentally…she is stunted at 10 months.
Lexi’s seizures began (to our knowledge) 3 days before she turned 10 months old. To that point, she was meeting every developmental milestone appropriately. In fact, she met most milestones a bit earlier than her older brother Cael did when he was her age. Unfortunately since that time, she has made very little and slow developmental progress.
Not all kids (or adults) who have epilepsy struggle with developmental delay, but a lot of them do. For Lexi, it will be a lifelong battle, as her genetic mutation and epilepsy syndrome are associated with notable developmental delay.
Talk about a personal reckoning. As a parent, this has been one of the most devastating and difficult aspects of our journey. Many days, I don’t focus on milestones…I don’t allow myself to “go there”, because honestly, right now on our journey it’s just too sad for me. And nothing about Lexington is sad. She is vibrant, and she exudes her light into the best and worst moments of my day, and every moment in between. But just because I don’t focus on them, doesn’t mean I don’t think about them each and every day. They are ever-present, and unfortunately, inescapable.
Lexington does not stand independently, therefore she does not walk. She does not know how to say any words, or signal for any of her needs/wants in any other way than to cry. She responds to her name about 50% of the time, understands the words “no” and “kiss”, but gives no indication that she understands any other words, names or gestures. She has learned a few small things in the last few months, such as “yay” with hand clapping, blowing raspberries, and waving her tongue in and out of her mouth, but despite daily repetition on our part, has since lost 3/3 of those abilities, and only regained 1 of them.
I think the thing that bothers me the most is how epilepsy has stolen the joy of developmental milestones, and turned them into this ugly monster that haunts me. They are ever-present in our minds, conversations, activities, doctor appointments, therapies, etc., like this elusive prize we are endlessly searching for. Worse, the thoughts of falling behind, not reaching them, life without certain “necessary” skills.
The thing is, I am still working on coming to terms with the fact that where we are and where we end up may very well look differently than Lexi’s peers. I will get there, but something of this magnitude takes time. And the fear of the unknown – that’s a difficult one to reconcile. We truly have no idea. We have to take all of the “expected” and throw it out the window, and just meet and celebrate Lexington where she is. Thankfully, celebrating her is pretty easy to do.
Many of Lexi’s peers are now walking and talking, and I am still just hoping for a 3-second independent stand or an intentional “mama”. Sometimes hearing the joy of other parents’ children reaching their milestones sends me to this place I’ve found myself in tonight. I’ve learned that it’s okay to meet my feelings here, acknowledge them and let them stay for awhile…as long as I know when to kick them out. By morning the sadness will be evicted, and we will rise, we will shine, and we will fight again.