Grand mal seizures the sound that breaks my heart
I was busy working on something last night after getting Matt all taken care of just before helping Loki with bedtime and I hear that noise again. I quickly get up and head to Matt's room yes this is the moment that breaks my heart every time, I love my son so much I hate seeing this happen to him, I can only imagine what it is doing to him, my poor guy.
I am grateful that they do not happen so often any more, but I am sad and heart broken every time he has one. If I didn't hear it would it be better? If I didn't know would that be better for me? No I would rather be heart broken and there for him then not at all, he needs me and I am here for him.
I speak to him, I rub his arm, I tuck him back in, I make sure he begins breathing again, make sure he stops having a seizure, make sure he is okay.
Yes this is one of the hardest parts of the job but I am here for him through it all. As you can see this is a full on grand mal seizure and aftermath it is a lot to go through for anyone and it is hard for all of us, especially Matt.
I stay with him through it all and tuck him in after they have gone and the aftermath is over, he usually does not wake up after but instead sleeps the whole night through to wake up the next morning just fine sometimes, there are other days that they affect him way worse but this morning he is awake and doing good so far working on his puzzle book and excited to get through the book.
We never know what will happen in every moment so we are grateful for every moment.
It seems that the new CBD/THC oil he is on is really doing well for him although his seizures are not completely gone his recover is getting better and his coherency is doing way better, longer conversations, being more creative, being happier, being more expressive it is really good to be able to chat with him more.
It is heart breaking every time he has one but I can see first hand we are getting really close.
Never give up.
<3 Joan Nielsen
