I meant to write a few different days this week because I didn't want to forget what it felt like during those moments of reflection, but this will have to do because we're working on our Lehi house like crazy and by the end of the day I'm barely awake enough to get ready for bed--let alone write my feelings down.
The first day of no Keppra (October 11th) Bennett started a new thing that I was worried about because it looked like an automatism to me which can be a sign of a seizure happening. He started sticking his tongue in and out back and forth and kinda spacing out while he did it, and then snapping back and fussing for a few seconds. I took probably about 8 minutes of video throughout the night trying to catch him doing it so I could show Dave and see what he thought. We decided to just keep watching and see what came of it and that night as I was putting Bennett to bed I held him in my arms as he finished his bottle and we cuddled for just a minute or so, but I copied him after he stuck his tongue in and out and he just beamed at me and repeated it!! He hasn't mimicked our gestures since before the seizures started and my heart just leapt when he did it that night. I was still cautiously hopeful because I didn't want to rule out an absence seizure or anything that might be happening with a Keppra withdrawal, but I was hopeful! He was copying me! I stayed and held him probably another 10 minutes just going back and forth with him trading smiles and sticking out tongues with him. I felt like for the first time in a really long time he actually knew who I was and was happy I was playing with him and he wanted to play with me too! I can't describe how much that meant to me in that moment. I'm pretty sure I was beaming the whole rest of the night.
His sleep still hasn't been great since the wean. We had a sweet spot where I think we were on 1 ml 2x a day where he was only waking up once during the night which was HEAVEN, but he's back to his normal antics of every couple of hours wanting a bottle. That's a bummer, but we're hopeful that might level out the further out from the wean we get. Even with the lack of sleep though, he's been SO much more content overall. He had the best Sunday (October 15th) he's ever had in church with us. Hardly any fussing, actually stayed content so we could stay in sacrament meeting without having to walk with him, didn't fall asleep until we got home for nap time, etc. It was so great.
On Monday (October 16th) he took a 2.5 hour nap in the morning and a 2 hour nap in the afternoon which was AMAZING!! And he's had no problem settling himself down without the swaddle now even though he did regress there for a few days last week after the last dose. Now he'll play in the crib until he falls asleep and he sort of just talks to himself, which is so fun to hear. For so long we only ever heard noises of discomfort or frustration from him--it's a totally different world to hear him babbling happily!
On Wednesday we had probably the sweetest moment for Dave and I this week, though. I was feeding Bennett lunch in his high chair and he was distracted so I made a loud deep noise at him which startled him and he started giggling! I did it again and he just cracked up harder and harder the more I did it. I used to always be able to get him to laugh back and forth with me like that whenever I would make a silly noise or scare him a little, but the last time that happened was at Dave's family reunion, which was about a week before the first seizure. I honestly had forgotten how easy it used to be, and how much joy it brings me to see him laughing so hard because of something I'm doing. I whipped out my phone real quick--grateful to be trying to film him laughing rather than seizing--and caught a couple seconds of it to send to Dave. I sent him the video and said "We have our Bennett back!!! <3". Once he watched it about an hour later he texted me that watching the video brought tears to his eyes. He was so happy to see him laughing so carefree like that and fully engaged with me. He told me later that night that his coworkers were kind of teasing him because he was tearing up watching the video, and he was just trying to get them to understand that there was a time just a few weeks ago we were worried we would never hear that from him again. We didn't know if we'd ever be able to interact with him like this in his lifetime and this was just the sweetest gift to see this part of him back with us again.
I don't know that anyone can really ever understand the heartbreak a parent goes through when they watch their child slowly slip away from them--one skill, one personality trait, one smile, one day at a time. And the heartbreak is even more intense when the future is unknown. He could gain all this back and we could live a mostly normal life with him...or this could be the beginning of losing him completely. There's just no way to know, and the best we can do is try to enjoy him where he's at and try not to think about the things we miss about him or the things we know he'll never be able to do. One blog I read put it this way, "It's difficult for me when every birthday I watch my 8 year old open yet another baby toy, when other kids his age are getting new bikes or roller blades. But I just try to get through the birthdays as best I can--they're the hardest because with them comes a reminder of what my child can't do." I think because I've prepped myself mentally for Bennett's seizures to get worse and for his development to go downhill from here just in case that's his lot in life, every time he makes some progress or relearns something he forgot feels like a huge gift--something most parents wouldn't think twice about, but I hold onto for dear life.
I've watched that video probably a hundred times by now (2 days later), just grateful to hear his laugh and see the way he looks at me during it. I can't really describe why I come close to tears every time he reaches for me now "because I'm his mom" when before, he literally looked at me the same way he did every other adult in the room. I noticed I had the thought today "This kid's gonna be walking soon!", which feels so vulnerable and exciting at the same time. He really does seem to be learning and improving his walking (skipping crawling completely at this point...), but I know all it takes is one bad seizure to bring a regression, so I still try to keep my expectations in check. But I can't help but get excited when he smiles at and wants to play with the Christmas decorations at Home Depot. It's just been so long since I've seen him so engaged in life and other people, I go to bed every night just praying that he stays like this.
I told Dave a night or two after I'd had Bennett and he was in the NICU in the hospital (for a fever that ended up being nothing) that I finally understood what people meant when they talked about loving someone so much it hurts and is terrifying. I told him if anything happened to Bennett I wasn't sure I'd make it. I think I could handle it if something happened to Dave, but I just couldn't go on if we lost Bennett. That thought has echoed in my head this past week. I've never felt so vulnerable in hoping for something and loving someone as I do right now with Bennett. I want things to stay good so badly and I'm terrified of when his next seizure might hit. But right now we're a month seizure free and fully off of Keppra--which is incredible. The next step is to get him off the Phenobarbital if we can to make sure it's not causing developmental issues either (since he's still way behind). We have an appointment this week with Dr. Morita so we'll see what she says.
I think that through all the tears and prayers and heartache with this journey so far, this week has been overwhelmingly filled with a feeling of gratitude. Grateful that he's still here with us. Grateful that he's trying to interact with us. Grateful to hear him laugh. Grateful for no seizures. Grateful to be done with the Keppra. Grateful he finally cut his fourth tooth! Grateful he knows who is Mom and Dad are now. Grateful to feel loved by him. Grateful for every second at night I get to hold him close to me as he drifts off to sleep. And grateful that because it feels like this all threatened to disappear after the seizures, I'm able to enjoy it a hundred times more intensely and really live in each moment with him. I don't think many parents get that opportunity and although I think I'd rather pass on the whole experience, I'm grateful for it right now. I try not to take any second for granted and it makes me love him that much more.
I think that through all the tears and prayers and heartache with this journey so far, this week has been overwhelmingly filled with a feeling of gratitude. Grateful that he's still here with us. Grateful that he's trying to interact with us. Grateful to hear him laugh. Grateful for no seizures. Grateful to be done with the Keppra. Grateful he finally cut his fourth tooth! Grateful he knows who is Mom and Dad are now. Grateful to feel loved by him. Grateful for every second at night I get to hold him close to me as he drifts off to sleep. And grateful that because it feels like this all threatened to disappear after the seizures, I'm able to enjoy it a hundred times more intensely and really live in each moment with him. I don't think many parents get that opportunity and although I think I'd rather pass on the whole experience, I'm grateful for it right now. I try not to take any second for granted and it makes me love him that much more.
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