At this age they expect him to be able to at least give a few "b"s and "mmm"s, but he's always only been able to say "aaaahhh". I think he's been trying to mimic "MaMa", but he just couldn't get his mouth to close for the M. So anyway, on Saturday he did it! And he seems to be working really hard at it too. During the days he has been so much happier and more content, but during the nights, his sleep has been cray. He'll go down for sleep, but usually wake up again within 2 hours just totally inconsolable. One night we just kept feeding him so much that he projectile vomited all over Dave and the nursery. So we decided to not rush to the bottle from now on to comfort him. But unfortunately, that had us back in the swaddle...
We were supposed to up his meds one last time yesterday to a full 4 mL, but we decided he seemed to be finally leveling out at the 3 mL dose that we wanted to give him a little longer at this level before changing it on him again. Plus I wanted to ask Dr. Morita if 3.5 mL might actually be a sufficient dose for him, rather than the full 4. We'd love to keep him on as little medicine as possible, obviously.
Yesterday (Sunday, Nov. 21) was the first day since we've officially gotten his SCN8A diagnosis that someone asked us "How's he doing? Is he still having seizures?". It was a really strange moment for me. I didn't really know how to answer her. Like, yes of course he's still having seizures...he isn't going to grow out of them. But no, he hasn't had one in 3 weeks...yet we fully expect him to continue having seizures unless he's the ONE child with an SCN8A mutation who happens to grow out of them. I think I just said, "Well, we actually got an official diagnosis for him last week and he has a seizure syndrome that means he won't really ever grow out of them, but we've had good control the last few weeks and really seen him make some strides in his development."
It was just hard for me to feel like--what am I supposed to say when people ask? It's not like I can say something like he has "Down-syndrome" or "Autism" or any other spectrum-like disease that people are familiar with. It's a full 5 minute explanation that I'm pretty sure people don't genuinely want to hear. Simply because it's painful to look at sweet Bennett and hear about how normal he ISN'T and how he could be totally fine today, and very not okay tomorrow--that we just don't know. People want to hear that we've found the magic bullet and he's never going to seize again and everything's going to be fine. But guess what? Bullets don't fix things. And there is no "magic cure" for Bennett--at least not right now. I described it to Dave as feeling "separate". I said, "When she asked us that I just felt so palpably 'separate'." Isolated or lonely aren't the right emotions, I just feel like we are living this entirely separate parenting experience with our son, and literally no one around us will ever know what it feels like. They have no idea why I come across as a helicopter parent when he's playing in between the rows of chairs at church. Because they don't understand why a bonk on his head is terrifying to me. And why should they? I wouldn't wish that on anyone, honestly. I would give anything to be able to watch Bennett bonk his head and just laugh and reassure him that he's fine like other moms do. But I can't do it when I myself am worried it could send him into his next seizure. I don't want other parents to understand that line of thinking. I really don't. But then where does that leave us? It leaves us in our own separate space. I guess it's the "Parents of an SCN8A Cute Syndrome Mutant" space. And I truly don't want more people to join us there...it's a scary space to live in.
For example...
Last night I was looking up a side effect of Zonegran on the SCN8A Facebook page to see if I could find any other parents' experiences with their kids who were on it at some point, and I was so caught off guard when I came across an old post written by a father of a 10 month old who had been hospitalized for 4 days at this point. He had written the post begging other parents to reassure him that even though he had completely lost his daughter in the last 4 days, that other parents had seen their kids come back to them after such a horrific seizure sent them into a coma and took away their ability to make eye contact, communicate, move independently, smile, laugh, hold their heads up, etc. I was shocked because all of the comments were parents posting about that first time their child "lost everything" in the hospital after a status seizure. They ranged from being 6 months old to 5 or 7 years old and usually had developed typically up until this point with just minor seizures here and there until they landed in the hospital and suddenly regressed back to being an infant developmentally.
I just sat on the bed and cried. I actually told Dave I thought I was about to have a panic attack. I didn't feel like I could get a full breath. He just held me and reassured me that that may be something we have to deal with, but we'll deal with it on that day, not tonight. Tonight we were just going to deal with how to get him to sleep. I joked back and said, "I'm pretty sure you mean for the rest of our lives we're going to deal with how to get him to sleep, haha." I calmed down and didn't have a panic attack thankfully--I just realized that I have been searching all of the positive stories of recovery and hope for the last two weeks and purposefully avoiding the stories of pain and heartache because part of me is too scared to acknowledge the reality that Bennett could very well end up in the hospital like these kids and we could lose his smile and laugh again. All his progress he's making to take steps on his own. His consonants he just started to pronounce. His ability to eat solid foods. It could be taken from us in an instant if the wrong set of circumstances just happen to line up and we're unable to intervene quickly enough. It felt like too much to bear last night. And honestly, it still is. The only thing I can do is just take videos and pictures of him and hope they're enough if we ever need to rely on them in the future. Thank goodness for iPhones, right?
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