“Buddy” is doing great. He is so close to walking. He is starting to notice the world around him more and more. His communication is developing. I should be sky high with excitement. But that damn seizure scared me to death. I don’t want to lose him. I don’t know what I would do without that smile. I want him to survive and thrive and blow everyone’s mind with all he accomplishes. I want so desperately to be a happy carefree family playing at the park, laughing together. I do not want to know how close death is at every turn…but I do, and I must find a way to reconcile that. I have to somehow find a space in my life for death, so that I can truly enjoy today, this moment. I don’t know how. I wish I did. Denial doesn’t seem to be a long term answer. I guess I will have to search for a better one.
We have been working our way back onto stable ground. It really is true what they say: “The first step to solving a problem is identifying it.” I knew I was off. I knew the whole house was off, but until I read that article, I didn’t know where to start to fix it.
Unfortunately, I cannot find that original article, but I did look up symptoms of PTSD symptoms at http://www.ptsd.va.gov/public/PTSD-overview/basics/symptoms_of_ptsd.asp .
- Reliving the event (also called re-experiencing symptoms)
- There are certain sounds that ‘Buddy’ makes, movements, positions, and expressions, which send my heart racing. As a family, we have to be careful how we respond to shows we watch. Exclaiming almost anything out loud can often trigger the other person and send them running to see what the problem is.
- Seizures are definitely that elephant in the room. Sometimes it feels like a herd of elephants. Every decision is impacted by the unknown that seizures have brought into our lives.
- It is so hard to feel safe. I love ‘Buddy’ with all my heart, but I do so knowing that friend’s children have passed away from SUDEP, or Sudden Unexplained Death In Epilepsy. Not knowing what the cause of ‘Buddy’s’ seizures is means we have no way of knowing, for good or bad, where our road may lead.
- Sleep is a struggle, and not always because of ‘Buddy’ waking. And no cold or illness is just a cold, or just an earache. Too many times they have led to something worse. We went into the doc recently and I asked about ‘Buddy’ hitting himself in the head. It turns out it was an earache, but at the time there was a subtle inference to how complicated he is, and that we should be on the lookout for something bigger. She was afraid that some new kind of seizure happening. Instead he was just trying to show us where it hurt.