I read an article a couple weeks ago, and it really hit home. It was about PTSD in kids and families with cancer. My blog has been quiet this winter, because I have been struggling. That seizure threw me for a loop. It threw my husband for a loop. We both had flashbacks of seizures, ER trips, tests, a listless baby boy, fighting for hope in the face of hopeless test results.

“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 .

  1. 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.
  2. Avoiding situations that remind you of the event
    • 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.
  3. Negative changes in beliefs and feelings
    • 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.
  4. Feeling keyed up (also called hyperarousal)
    • 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.
All of this leaves us roiling. Some days are fine. I can watch him and be filled with amazement at his accomplishments. Other days I am terrified. Will he be okay? Will I have the strength to keep up the fight? Will we as a family? There are sooo many rabbit holes I can fall down. I work very hard to stay in the present, and see all the amazing small steps. Like yesterday ‘Buddy’ was holding Daddy’s hand on the right, and my hand on the left, as we walked together through the park, when a child rolled passed on a Razor. ‘Buddy’ was fascinated. He could not take his eyes off her. He saw her! He was thinking through what she was doing and digesting it, you could just tell. I told him, “You can do that too one day. First you need to figure out walking, then we can work out the Razor.” We all have to have hope, and goals.

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