Two nights ago I was digging through old videos of Esmé and I found this video that really startled me. The video was from the day we moved into our current house, almost exactly two years ago. Esmé was 18 months old. She was having weekly seizures at the time, but they were mild. She was on a low dose of an anticonvulsant that seemed to do nothing for her–good or bad. It wasn’t until a month after this that her seizures became completely out of control, coming in larger clusters, lasting longer.
Watching it I was completely flabbergasted to see her vocalizing so much and sitting up so well. I guess I had forgotten all about this as it wasn’t long after this video that she completely stopped sitting up for about a year and a half. It wasn’t long after this that she was mostly silent for months.
Another video I found, taken almost three months after the one of her sitting, shows a totally different child, barely able to move or focus.
There were also other skills I rediscovered in these old videos. For instance, I found one of her supporting herself standing at a coffee table with her physical therapist behind her, ready to catch her. As far as I can remember she did not repeat this skill until about one year later.
Until watching this the other night I hadn’t really thought of these losses as “regression” per se…I have known that she has lost skills here and there–like the ability to say “Maman,” like her eating a quarter of her calories by mouth, but there is just something about Esmé that makes it hard for me to see her as any way other than exactly how she is in the moment. So I quickly let go of skills she had performed a few times and then dropped…apparently forgetting some altogether.
But looking at these videos one after the other, I found myself unable to deny that this difference of a few months, hundreds of seizures, and substantial doses of various anti-convulsants made in her abilities. Watching the videos it also became clear to me why I find myself having a hard time fully embracing all of the recent gains she’s made: I am terrified she will lose these skills.
Over the last six months Esmé has been doing extraordinarily well. We’ve managed to hold off enough infections and seizures that she has had time to be comfortable learning, exploring, and engaging. She has gone from barely being able to sit with support to sitting herself up, to standing herself up at a table, to being able to climb onto that same table in three months. She is vocalizing. She is focusing on things. She is getting visibly stronger weekly at this point.
I couldn’t be prouder…and I couldn’t be more afraid. As much as I try to focus on her gains, on the positive, I find myself looking at kids her age doing all the things they do–running, dancing, singing–things I genuinely still hope Esmé will do, and I wonder what it would be like to not look at your child with fear. I wonder what it would be like to not worry it could all just go away tomorrow.
*****
As if on cue, yesterday Ez had three seizures. They weren’t awful. Of course we have seen so many days that were so very much worse. But, as always, I was completely crushed and slow to understand the reality of what I was seeing. And I found myself holding my breath this morning. Although she seemed ok, tired, but ok, I was waiting to see if she could still move in the same way, if her tone or coordination had been impacted…wondering if she has outgrown her current med, or if it is going to stop working.
…wondering if we are slipping backwards again.
It is so hard to truly see what has been lost as compared to our memories. Living in the moment and celebrating the daily joys is priceless.