The other day my daughter handed me a picture that she had drawn. It was a picture of her, her dad and I sitting in the hot tub together. She captured a rare moment of the three of us spending quality tome together while Oscar was napping. She was explaining all of the details of the picture and when I asked, “what’s that?” and she said, “the monitor.” It was an awakening moment for me. My husband and my parents have commented on my excessive dependence on the monitor, but now my 5 year old has picked up on it too.
I am aware that the monitor has become my security blanket. If I am not physically with Oscar, I am staring at his monitor. I haven’t let myself wean off depending on it. It is too scary for me… it causes too much anxiety.
Neurologists have assured me that parents are the best “monitor” for a child with epilepsy, “You will just know” she said… The problem is I don’t trust that I will “know”. I don’t trust that I will react fast enough. So, I am glued to the monitor.
The last time Oscar had a seizure he was quiet. What I mean is, he wasn’t laughing or crying or making any noise at all. So unless we were watching him, we would never know that he was even having a seizure. I have heard other parents say that their child may scream or cry before or during a seizure which alerts them to the situation. I don’t trust that Oscar would do that now because he has never done it.
I remember when we were first home from the hospital and were adjusting to our new normal, I was scared to sleep. Who will be watching him? I wrote about this in a previous blog “Entry Twenty Four- Night Shift” where we would take shifts being up at night. It wasn’t a sustainable solution. When we eventually graduated from the “Night Shift” I would have to convince myself to surrender to sleep at night. It was challenging then and still is a challenge today, although it has gotten a lot easier.
I have talked about this with my social worker. She agrees that my level of vigilance is not sustainable long term. And I know that once he is of a certain age a monitor will become an invasion of his privacy. I know that I will eventually have to get rid of it… which terrifies me to even think about.
I am supposed to be working on increasing the length of time that I don’t look at it. Honestly, by the time I get to just a couple of minutes my anxiety has already crept up to a very uncomfortable level. My husband will sometimes get frustrated and take the monitor and say that he will watch it. But then we get into a disagreement because I don’t feel like he is watching it carefully enough. And the truth is, I know that his level of vigilance is different from mine, but is probably more appropriate for Oscar’s current needs.
I had been thinking about writing this post for awhile. The reason why I am sharing it now is not only because of the picture that my daughter drew. We had a power outage and the monitor wasn’t working, so I was sitting in a chair in Oscar’s room after he had fallen asleep monitoring him until the power came back on. As I was sitting there, I started this entry. I know that my vigilance doesn’t appropriately match up with his current need. I know that this is a problem… my problem, I just don’t feel ready to fix it yet.
Just a little side note that we did decide to purchase a back up power supply for future power outages.