I feel like that wonderful fall weekend that had me feeling all blissed-out happened about a decade ago. I have so many things I’d like to write about but don’t really know where to start. Maybe I’ll write about some of those things and maybe I won’t write about any of them.
I’ve been feeling pretty overwhelmed, stressed out, defeated and just plain ol’ sad. I tend to do well when Emmett is doing well, and right now he’s not at his best. His seizures are still getting worse. We met with his neurologist in Saint John last Friday and just upped the dose on one of his meds. It hasn’t helped. And now the doctor is out of the office until next Tuesday. At least we have a date to admit him for the ketogenic diet, but that’s still two weeks away. The strictness of the diet is what’s making me feel overwhelmed. There is just so much. A lot of the responsibility with this diet falls on me since I’m home with him all day. It’s up to me to cook everything properly, ensure that he gets every drop of every meal, weigh him to check for any gains or losses so the diet can be adjusted, check his urine levels to make sure he’s producing enough ketones… the list goes on and on. I know I’ll get the hang of it once I’m used to it, but it still doesn’t help with the overwhelming feeling right now. Nothing has been easy since Emmett was born. This is just another one of those things that start out being intimidating but once I get used to it the overwhelming feelings subside. And to be honest, I just really want this diet to work. Emmett needs this diet to work. And I’m scared it doesn’t. And yeah, I know, positive thoughts and all that. I’m hoping since we haven’t had very much luck with the dozen or so medications we’ve tried over the last year and a half, that this will be what he needs. Emmett needs to be on the diet for at least 3 months to see if we’re having any luck with it. Some kids show signs of improvement almost immediately, others can take a few months. If it doesn’t work, I think I’ll be pretty depressed and might have to look into medicating and admitting myself. Kidding! Sorta…
Mind you, this is not the first time I’ve felt down in the dumps. It’ll pass, it always does. I just wish these moods didn’t have to happen as a result of my son having uncontrollable epilepsy and a visual impairment. Some days I even forget he has a visual impairment, as silly as that may sound. I get so consumed by his seizures and literally can’t think of anything else. Right now he has pretty nasty seizures when he wakes up from sleeping. When he starts to wake up I feel anxious and sick to my stomach. Do you know how terrible it is to feel that way? To dread when your little boy wakes up? To feel at ease only while he sleeps? It’s a horrible feeling. When he was a few months old it was the opposite. He had seizures in his sleep that would wake him up. I never wanted him to sleep. Most new mothers want nothing more than a sleeping baby. And I was terrified when he fell asleep. Whenever I held Emmett I didn’t feel calm or at peace, I felt afraid and worried. I had to keep a seizure diary and log every seizure, write down the time it started, the time it ended, and what parts of his body the seizure affected. I remember doing that for a full week and there were about 80 seizures logged. Yeah, you read that right. 80. This is why I didn’t sleep as a new mother. It wasn’t because I was up with a crying baby (well, there was that, too) it was because I had to hover over a baby that was constantly having seizures and had to document every detail. Even if I wanted to sleep, I couldn’t. When I think of Emmett being a new born, those are the memories that stand out for me. But these are my experiences, it’s all I know. And they are what has made me so hands on with Emmett.
The worst part was handing over the documented seizures to the neurologist in Halifax. She skimmed through the seizures in about three seconds and put the papers down. And that was that. She never looked at it again. I felt gutted. And then I felt really sad because she sees this sort of thing every day, and it’s nothing new to her. But it was new to me. I wish she would have been a little more compassionate in that moment.
Didn’t mean to make such gloomy post, but these things need to come out sometimes. And now I feel a little lighter. And now I get to look forward to the next time where I’m feeling blissed-out and recharged!
This diet is just so important to us. He has been having uncontrollable seizures for a year and a half. It would mean the world to us to be able to be free of those, or at least have them significantly reduced. All I want is the best for Emmett. I do my best to ensure that he is well taken care of and happy. And he is loved so much. I must kiss this kid a million times a day and tell him that I love him double that amount. And he totally pushes my face away if I get all up in his business too often. And I love that! I love that he is using his strong little arms so much more now. Even if it is to push dear ol’ ma out of his face.