Where I'm At

Not a very eloquent title, but it works. And since I’ve been trying to figure out what to say for a few weeks now, I’m just going to go with it.

When I thought of continuing this blog after Emi’s diagnosis, I had a vision for what I wanted it to be. Even amidst our shock and soul-sucking grief, I wanted it to be a positive place. A place where I could share the realities of having a child with disabilities (specifically CDKL5) while also sharing the good and the happy. Yet, despite my goal of blogging X number of times a week, September is coming to a close and I haven’t blogged once this year. Why? It’s complicated, but I want to explain. Maybe need to explain?

I’ve wanted to share Emi updates but there hasn’t been much to say. On the one hand, this is great news. We have had no hospital stays this year, no accidents, no serious illness, and her seizure frequency has stayed about the same (about one to two a week if you’re curious). On the other (much larger) hand, there has been little visible progress. I’m extremely grateful for the progress she has made (I mean, we all went out to eat and celebrated the day Emi sat and “tripod-ed” using her hands at physical therapy) but for most people, her progress seems so small. And compared to most kids, it is. And I get it. But if people could see just how hard she works to hold up her head, to reach for a toy, and how hard we work to engage her in something, all of it would mean so much more. But then, maybe I’m underestimating people. Maybe you do understand (or at least really, really want to and are willing to try) and you do want to cheer her on and celebrate with us, and I’m not giving you a chance. So here’s a little progress report: Emi pounds on a big, red button to let us know she wants “more.” More food, more of an activity, etc. It’s hilarious and wonderful that she figured this out and she is incredibly demanding when it comes to meal times. It took us over a month to teach this and even longer for her to consistently do it. She’s started to learn how to chew, but definitely still prefers the ease of purees. Most of the time she doesn’t want to, but she can tripod and sit for a few seconds unassisted. She’s tracking objects much better and tolerating “play time” a little more. She snuggles and laughs more than ever and for that, we are forever grateful.

As a family, and as individuals, we try really hard to be positive. We make a concerted effort to do fun things together, explore our beautiful state, and get out of our daily routine. We discovered last year that this is crucial to our well-being, our marriage, and our mental health. Earlier this year we went to Japan and had a perfect trip. Honestly, nothing went wrong, Emi took everything in stride, and we did everything we planned on doing. We’ve gone strawberry picking, camping, hiking, cherry picking, and to the beach. We had family and friends come to visit us and Chris and I even got to go on a trip to Canada without Emi. It has been a beautiful, blessed, and wonderful year (and some of the best is yet to come!). I’ve shared pictures from most of these things on instagram, yet haven’t written much more even though I love to write and there has always been so much more to say. I’m not obligated to blog; no one other than maybe my mom misses it. But what happened to my positive place where I would share all the good things?!

In order to be realistic, I have to share the hard parts, too (“hard parts” = my overarching term for the grief, fear, loneliness, frustration, etc). It would be fake and incomplete and unfair to only include the pretty pictures and the happy experiences. Woven between our optimism and high moments are times of darkness, fear, and hurt. The kind of hurt I tuck away but creeps out at the most expected and unsuspecting moments. The kind of fear that leaves me wondering at night and leads us to visit an estate attorney even though I’m 26. If I’m to be honest about our life, some of this needs to be shared. But I keep waiting for the hard parts to get easier to share and they don’t. I’m realizing more and more that CDKL5 has no happy ending and that really, really  sucks.

So without Emi updates and my unwillingness to share the pretty without the hard parts I’m not ready to open up about yet, I’m left with zero things to write about in this little space. But here I am, sharing with the internet world right now that our beautiful life is sometimes incredibly hard. I know having struggles is not unique to us; it’s a rather normal part of the human experience. But these specific “hard parts” are ours and that makes them unique. I realize that I’m not actually sharing what I struggle with, but I share that with very few people. Most of it feels too heavy to share or maybe I’m just a private person but either way, I hope I get there one day because I need to in order to raise awareness and be a better advocate for Emi. Today I’m not there yet.

But here I am, trying.

Such a gorgeous view, but this picture says nothing about what I was actually feeling this day.
side note: I was still very far from the edge!